tips: living with dysautonomia

Here are  a few tips (which I will be adding to progressively) that I have found to be helpful in living with Dysautonomia (and can even apply to other chronic illnesses):

DE-STRESS YOUR LIFE! I can’t stress that enough! Not only does stress increase the severity of all your symptoms, but it can further make your condition worse and prevent you from feeling better faster. Of course, life is full of stress and there’s no way to avoid it completely but there are some things you can do to help.

  • Music, for me, is a huge stress-reliever. Calming, quiet, or inspirational music played throughout your room or house can increase a calm atmosphere.
  • Lavender-scented candles or oils are great, too, because Lavender has aromatherapy properties that decrease stress.
  • LAUGH! — Talk to a funny friend, read a funny book, watch a comedy, be around kids, etc. Laughing no only decreases stress but encourages healing in your body.
  • Most importantly, surround yourself with positive people that actually care about you, respect your illness, and want to help you feel better. This makes a huge difference.

HEALTHY EATING! Another HUGE factor that promotes healing, well-being, and can even be curative in chronic diseases is a healthy diet, full of whole, raw, natural foods.

  • Lots of lean protein, fiber, fruits, and vegetables.
  • Stay away from refined sugars and white flours, caffeine, and added chemicals and preservatives.
  • Find out if you have any food allergies or intolerances. A food allergy is much different than an intolerance. Most doctors will look over intolerances, so I highly suggest seeing a Registered Dietitian or Naturopathic doctor to assist you in this process. It’s amazing how many food intolerances people have that they don’t even realize, and can even be a major contributing factor to their symptoms.
  • For most people with Dysautonomia, a high sodium diet is recommended along with extra fluid intake to maintain or increase blood volume and blood pressure. Dr. Blair Grubb, a leading specialist in Dysautonomia, recommends 2-4grams of salt per day (although I tend to eat more), and 2-3 liters of water per day.
  • Also, the healthiest way to spread out your eating is by 6 small meals a day, instead of 3 large meals. This helps blood pressure to stay up by controlling excess blood flow to the abdomen to digest food. It’s also a good way to maintain blood sugar levels for those of us with hypoglycemia.

SLEEP! Much easier said than done for most Dysautonomia patients. Sleep and rest are extremely important when you have a chronic illness.

  • According to Dr. Jacob Teitelbaum, sleep is one of the first aspects of treatment he looks at improving with his chronic fatigue and chronic pain patients.
  • Work with your doctor on how to better improve your sleep habits (or sleep hygiene) and make sure you’re getting at least 8-9 hours of QUALITY sleep per night.
  • Also, take breaks and rests BEFORE you feel tired. Listen to your body.

EXERCISE — another seemingly impossible task for those of us with Dysautonomia. But it’s very important. Exercise helps your mental well-being by producing powerful endorphins, it helps you sleep better at night, and has proven to help re-balance the autonomic nervous system.

  • If you are extremely ill or bed-ridden, start with some simple stretching.
  • If you have good health insurance, you can even try to get some physical therapy.
  • For POTS patients, exercise that is done in a sitting or laying position (such as stationary biking or rowing) is most recommended.
  • Walking is another beneficial form of exercise if you can tolerate it.
  • START SLOW and SLOWLY work your way up. You may need to take a day or two off in-between “work-outs” when starting out.
  • Talk to your doctor, and again — listen to your body. You don’t want to over-do-it and cause yourself a relapse, or do too little and not get any stronger.

HYDRATE, HYDRATE, HYDRATE!! Drink, drink, drink!

  • Water is best.
  • Sports beverages like Powerade and Gatorade are good too (in moderation) since they have sodium and other electrolytes.
  • I personally make my own “hydration” beverage which consists of 3 parts water, 1 part natural juice (usually from orange, pomegranate, or cranberry), 1 teaspoon salt, and a little lime. I usually drink 1 liter of this “re-hydration beverage” a day, plus plain water.

SALT — back to the salt thing — salt is usually recomended for Dysautonomia patients that have Orthostatic Intolerance, POTS, or Neurocardiogenic Syncope.

  • Liberally salt your foods (as long as your doctor OKs it)
  • V-8 juices are another great source of sodium (and other healthy things!), as are sports drinks. But be careful of the high-sugar content in many sports drinks and opt for the low-sugar or zero-calorie versions instead.
  • I would NOT recommend taking salt tablets because they cause most of the salt to stay in your abdomen and actually dehydrate you.
  • Salt can be added to most foods. Put it on your meats, grains, vegetables, and even fruits — like pears, green apples, and oranges.

SUPPLEMENTS. Every person is different so certain supplements may or may not be right with you. Talk to your Doctor or an Herbalist or Naturopath to figure out which supplements are right for you.

  • For most Dysautonomia patients taking Magnesium, Calcium, and a B-Complex (for nerve health, bone and muscle health, and energy) Vitamin C and Zinc (for immune system function),  Iron (for those of us that are anemic), and Probiotics (such as Acidophilus, or other healthy bacteria that improve the function of the digestive system) are recommended.
  • When buying supplements, make sure they are of high quality and trusted brand since most supplements are not required to follow FDA regulations.

SUPPORT GROUPS. They are great ways to stay emotionally stable and find comfort in knowing you are not alone in this struggle. I have been blessed to have met some wonderful friends who have the same struggles, and they are just as beneficial to me as any medical treatment.

  • Meet people in your area with the same conditions through dinet.org.
  • Help organizations within your local religious groups
  • Research support groups online

Take life at your OWN pace. If you were diagnosed after having lived a “normal” life, it can seem like your life is so slow now. You may feel pressured to keep up with the fast-pace of the world around us, but don’t be. No one is pressuring you.

  • Set your OWN expectations and realistic goals. When you achieve them, you’ll feel better about yourself and your life than if you try to live like you used to, even though you want to.
  • Having Dysautonomia, and any other chronic disease, required many major lifestyle changes. You have to find ways to work around them so you don’t get down and depressed.
  • Find new hobbies that are not physically exhausting, like reading, art, journalism, music, etc. Spend time with your closest family members and friends in a relaxed environment — have people over to watch a movie, or play games sitting down. Even good conversation is a beneficial way to pass the time.
  • Don’t try to please everyone around you by pushing yourself too far or hiding how you really feel. You’re not doing yourself any good. Don’t be embarrassed or ashamed! This illness does NOT define you. You are still who you are before, and the people that truly care about you will want to be a part of your life however they can.
  • Count your blessings, and live them to the fullest. :)

Find a GOOD, SMART, PATIENT, KIND, and QUALIFIED doctor!! This is so important!

  • I would highly recommend seeing a specialist in Dysautonomia above anything else. You can find a physicians list for specialists in your area at dinet.org.
  • If you live in the mid-west, contact me and I can refer you to some doctors that can help.
  • Having an open, trusted patient-doctor relationship is critical when you have a chronic illness. Make sure you can communicate freely with your doctor and that they take you seriously, and are sympathetic towards your condition.
  • Be assertive. Dysautonomia is rare and often misdiagnosed. Don’t get angry and bitter if the first few doctors you see don’t know much about it. That’s normal. And it’s not their fault. Do your research, and if you feel you aren’t getting the medical attention you deserve, tell your doctor in a respectful way, or find another one.

Schedule your activities carefully.

  • It’s easier to do something, take a break for a while, and then do something else.
  • For example: you may not be able to plan lunch with a friend the same day you need to shower or do laundry. Spread out your activities and make sure to have plenty of time to rest before and after the most important ones.
  • Set your priorities on the things that HAVE to get done first.
  • I usually plan something one day, and then not much of anything the next, giving myself plenty of time to rest in-between the things I have to do.
  • This is such a delicate balance, and it takes time to figure out your body — when you can push, and when you need to stop. I don’t think I’ve even figured it out completely. Don’t get discouraged. Just keep trying, and keep fighting.
  • Don’t feel bad or guilty if you have to cancel on people for the millionth time. If they truly care about you, they’ll understand.

THE POWER OF A POSITIVE ATTITUDE. What you speak to and about yourself is powerful. The more you think of the negative and talk bad things to yourself, the worse you will feel, and the worse everything will seem. It’s a vicious cycle, and one that is hard to break, but it WILL be detrimental t0 you if you don’t learn to be positive about things as much as you can.

  • Take note of the little things in life.
  • Be thankful for what you CAN do and what you DO have, not what you can’t or don’t.
  • Remember, someone is always much worse off than you.
  • It’s natural to hate the world, your life, and ask the famous question “why me?!”. I still do on bad days. But I can tell you from personal experience that positive thinking goes a LONG way.
  • “A cheerful heart is good medicine.”
  • The mind and body are very much connected and I promise that if you do your best to stay happy and optimistic, you WILL feel better physically, too.

HAVE FAITH! Keep fighting.

168 responses to this post.

  1. sea salts, especially Himalayan is even better than regular table salt, bc it isn’t stripped of all of it’s natural nutrients, and tastes yummy too :)

    Reply

  2. Posted by tanya on June 24, 2010 at 3:36 am

    how can i contact you in regards to faith, God and Healing. My daughter is thirteen years old and struggling with Hyperadergenic Pots. We thought we had a mild case and all of a sudden it was like the carpet was pulled out from underneath us and we became an extreme case. I am interested in what you have done to help make this easier for you. we have a hard time getting four grams of salt a day and eating healthy. There is lots of salt in processed foods but when trying to eat healthy there is not much salt. Any suggestions would be great.

    thanks,
    tanya

    Reply

  3. Posted by danielle on July 21, 2010 at 3:12 pm

    hi i am just been diagnosed with dysautonomi pots one month ago after 3 years of having synthoms but the thing is i live in cancun mexico and it is pretty hot over here and no doctors know about this, i have to fly to mexico city everytime i want to see my doctor…….. i was wondering if i should move somewhere else colder… how important the weather is for plp wiith dysautonomia? now is summer time and every 3 hrs i feel that i can not breath and constant pain chest and fatigue even setting on my wheelchair. should i move out of here?
    thanks
    thanks for ur shares it have been really usefull for me

    Reply

    • Posted by Ashley on August 7, 2010 at 8:51 pm

      Hi Danielle,

      I am sorry to hear how much you are suffering. I was diagnosed with Dysautonomia when I was living in Florida and it helped tremendously to move back to the northeast of the USA. It did not solve all of my problems, I still have to slowly work up to being back to even semi-normal. But it was a great help and I am much better just from moving. I am very sensitive to heat and cold because of my Dysautonomia, but I am doing the best I can to stay indoors when there is a heatwave and to use air conditioning and heating to create a comfortable environment indoors. I would look up areas that has doctors specializing in this and move to one of those areas that is not as hot. It will definitely help you.

      I wish you the best of luck, as well as anyone reading this post. I know just how hard dysautonomia can be.

      Reply

      • Posted by Trina on December 28, 2010 at 1:26 am

        Ashley,

        I noticed in your email to Danielle you are in Pennsylvania. I am also in PA and am looking for a doctor to test my 15 year old daughter for dysautonomia. I was wondering if you know of any specialists in PA?

    • Danielle — First, I am so sorry to hear of your recent diagnosis. Dysautonomia is so hard but it does get better and there are effective treatments. I would greatly recommend moving to a more cooler environment as heat has a very negative impact on your symptoms and can be more disabling to your quality of life. I live in the mid-west, where we experience all seasons, lately it has been hot (but not nearly as hot as Mexico, I’m sure) and I definitely notice a downfall in how I feel due to the heat. The heat can not only be bothersome, but very dangerous for people with our conditions. I would definitely advise you to invest in moving somewhere cooler because it really will make a positive difference, and this is YOUR life afterall! Also, you may find that you can get better medical treatment as well. If you want information on areas of the states to move, I can recommend. I know many good doctors, and also since you’re from mexico, I speak Spanish, too. If I can be of any help, let me know. Take care and I sure hope you’re feeling better.

      Reply

    • Posted by roga on September 18, 2012 at 5:06 am

      hi i live in cancun too and also have pots. i tootally get u about the heat its the worts! but heres some good news there is actually a cardiologist in hospiten, he knows all about disautonomia and its totally professional and comprehensive, his name is Marcelo Wasabe.
      good luck :) and let me know how you get better

      Reply

  4. Posted by Jacqueline clarke on August 13, 2010 at 3:18 am

    Your comments on faith really helped me today. I am a bit down. Thank you

    Reply

  5. Posted by doreen oconnor on August 28, 2010 at 7:25 pm

    LOVE YOUR WEBSITE.. STILL TRYING TO GET A DIAGNOSIS OF POTS OR SOMETHING ELSE. I LOOKED ON THE DINET FOR DR’S BUT MOST DON’T TREAT POTS PATIENTS OR ONLY DO TILT TABLE AND NOT ANY OTHER TEST BLOOD VOLUMNE ETC. I LIVE IN NY AND CAN’T BELEIVE I CAN’T FIND ANYONE HERE. GOOD LUCK TO YOU AND THANK YOU FOR YOUR GREAT DIET AND LIFESTYLE TIPS

    Reply

  6. Posted by danielle on September 22, 2010 at 6:19 pm

    hello hillary and ashley
    thank you very much for your advice!!
    i already moved to somewhere colder, i only hope that during winter i will not freeze hehe because i am not used to cold weathers, but you were right i feel alot better just because of moving… i can walk inside the apartment and i only need the wheelchair to go to the supermarcket or for long walkings!!
    i also found a lot of food for celiac plp like mee and i am so happy i got to eat pizza after 3 years wow i cant believe this
    i still have migraines sometimes and stil taking a shower sitting down but i feel a lot better than back in mexico…
    i was wondering if there is a theraphy or something else i can do apart from rest, strech after wake up, take lots of water with a bit of salt, gluten free meals and 5 times a day and take midrodrine??
    thanks very much for your timeee
    take care…lookinf forward to hear from you!!

    Reply

  7. Posted by Kristy Lee on September 22, 2010 at 6:19 pm

    I have been unwell all my life. My physio diagnosed me with Dysautonomia. I am trying to contact some specialists to help me but I dont think they are taking anymore patients. I am so scared I am 27 I have a stressful full time job, I am also studying, I will be planning a wedding soon and hope to start having children in 1.5years. I have always been great underpressure and get bored easily so I am finding it frustrating and difficult dealing with the syndrome. I have so many questions and not sure where to start. It is hard explaining to people what I go through each day to get up for work and I really play it down and suffer inside because I know it stresses my loved ones out. I think I needed to vent a little. This website has been the most informative and has given me direction and a platform to begin my healing.
    Thank you, Thank you, Thank you :)

    Reply

  8. Posted by Krista on November 1, 2010 at 2:26 am

    I went in today to have a test done to see if I have Dis. My symptoms are constant nausea, food intolerance, dizziness, blurred vision, blood pressure that goes very low and then high, rapid heart beat, panic attacks… I have been ill for 3 months. I took a test today to see if my adrenal gland is functioning (for Addison’s Disease?). What do you think are the best tests to take if that one comes back negative for Dis.? Is it common to develop food allergies with Dis.? There are very few foods that don’t make me nauseous. Thanks and God bless!!!!

    Reply

  9. Posted by Krista on November 1, 2010 at 2:26 am

    Hi Tanya,
    My doc is having me take a blood test (with cortisol injections) for my adrenal gland on Tues. I guess it shows if you have a certain kind of disautonomia. I have never heard of this, but I am tired, dizzy, my vision is blurry, most foods aren’t tolerated, I am nauseous most of the day with diarrhea in the morning. My blood pressure goes up and down all over the place. Does this sound like disautonomia? What would you consider the next step to be? Thanks! God bless!!!!

    Reply

  10. Posted by Rachel on November 1, 2010 at 2:27 am

    Wow, this is such a good website. These are all of the things that my doctor recommends for me, ESPECIALLY the sleep, exercise, GATORADE, and salt! I am required to have 9 and a half hours of sleep though, to help prevent my migraines. I have a severe case, but I know GOD will heal me! I believe all of the things that u do about having faith in God and knowing that He can and WILL heal! You just have to believe, and until the healing manifests, following these important tips are what you should do until then. Don’t give up hope. We can beat this and raise awareness. The form of dysautonomia that I have is P.O.T.S. I am determined to raise awareness, because anytime I have to make an ER visit, I have to EXPLAIN TO THE DOCTOR what POTS is!!! So ridiculous. I have to do 15 min of isometric exercises in the morning and 30 min of aerobic exercise during the day. I have to drink 2-4 liters of fluids a day, and I usually exceed that because one of my MANY symptoms is excessive thirst.

    Reply

  11. Posted by Rick on December 24, 2010 at 4:52 am

    I’m intolerant to supplements. A tiny granule from a capsule or one drop from an herbal tea causes me to become very spaced out and I get a terrible pressure in my head. Sometimes it feels like my brain is being pulled downward. Every supplement, no matter what they are or what they are for, causes the same reaction. Why does dysautonomia cause this in some people?

    Reply

  12. Posted by Kelly OBrien on January 2, 2011 at 6:03 pm

    Can you please contact me as I live in Chicago. I need a good Dysautonomia specialist. There is one in Chicago but I did not find her to be helpful at all.

    Kelly
    kell.yob@hotmail.cm

    Reply

  13. Posted by Joyana on January 25, 2011 at 1:51 pm

    OMG this website is a godsend! Kristy Lee you spelled out my life! I’m also 27 and I just got engaged in October and I’m planning a wedding while working full time as a high school English teacher. Definitely stressful! I’ve been dealing with Dysautonomia my entire life, but was only formally diagnosed with P.O.T.S in November. I can’t find a doctor in the DC area that will either accept patients, takes insurance, or knows anything about POTS. It’s extremely frustrating. My parents live up in NY and I do spend a lot of time up there as well. I also was unable to find someone in the NY area either. So if anyone did find someone up there please let me know, I’ll travel for primary care! My other problem I’m having trouble with recently is extreme stomach pain and gas. I woke up at 4am this morning with a sharp stabbing pain in my side. I freaked out thinking it might be my appendix, but my fiance made me take a gas-x and it did help. So now I’m wondering if I should start a gluten free diet, because I’ve been experiencing excess gas for the last month or so. Has anyone else had this problem? Overall, I feel like I have no control over my body or my life anymore. This is not a good feeling for me because above all else I am a natural control freak. At least I now feel I can have a place to vent! Thank you for that.

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  14. Hi all. Hillary here. Sorry for the late reply. Have had a bit of a relapse but now look forward to updating my site with everything I have learned recently! Check back soon for more updates.

    Doreen — thank you for your incredibly sweet comment. I love hearing that people can find HopeAlways a safe and helpful place. I’m sorry you’ve had such trouble finding a good Dys specialist in NY, that does seem odd considering NY has so many doctors and hospitals. Would you be able to travel to PA or Maryland?? I know of some good Dys doctors in those locations that may be able to help you! Let me know. Wishing you all the best of health and happiness in life. Be well and blessed! :)

    Danielle — I am so so happy to hear that you moved to a cooler place! Good for you in taking that important step towards recovery. I’m glad you’re feeling better. It sounds like you’re doing everything right. How much salt do you eat/drink? I would recommend increasing it to 4000-6000mg per day. I am also gluten free and am glad that you have found some good food to eat! Yay! I would also remind you to stay away from sugars and simple carbohydrates as they lower blood pressure and increase fatigue. Diet is a huge part of living a better quality of life with a chronic illness. Also, have you tried Florinef? Talk to your Dr about that medication. Also mention cardiac rehabilitation as a possible treatment option for you to increase stamina, strength, and energy. Keep up the walking! Let me know if you need help finding a POTS Dr in your area. All the best to you, and keep us updated. Love and blessings!!

    Kristy — wow, major kudos to you for living such a full and active life despite your illness. I understand all of your frustrations and just want you to know that you are definitely not alone. Seems like you have great determination and strength — both of which will get you very far in your recovery. Keep it up but also remember to take some time for yourself. It’s never worth getting worse or relapsing, so make sure your getting plenty of rest, eating healthy, staying hydrated, and practicing deep breathing techniques. It goes a long way. I hope the best for you and your exciting future. Feel free to vent anytime ;) let me know if there is anything else I can do to help. Love and peace to you and yours. :)

    Krista — sounds like your symptoms are indeed Dysautonomia related. How have you been? Talk to your Dr about Dys and seek out a specialist. Do your research and stay educated. You are your best advocate for your health and there are effective treatments out there that can certainly help you. And yes, food allergies and intolerances are extremely common in those of us with Dysautonomia. A registered dietitian would be especially helpful for you to see about those. Adrenal issues are also commonly seen in patients with Dys. Keep seeking help and don’t give up. Let me know how I can be of any help. God bless you!!

    Rachel — that’s awesome about your faith. Yes, God is willing and able to heal us all!! It’s a promise! So glad to see you staying positive and encouraged! Sounds like your are taking good care of yourself. Stay strong and keep letting your light shine. This world needs you! God bless you!!! Feel free to share your story on this site!

    Rick — I’m so sorry to hear about your severe sensitivity to supplements and chemicals. This is not uncommon in Dysautonomia. Most of us have weakened, damaged, and extra-sensitive nervous systems. Our nervous system is what controls how we respond to any internal or external stimuli. When our body’s perception of anything is heightened it can cause a slew of unpleasant and debilitating problems, just like yours. Since you have nerves on almost every inch of your body and many are inter-related and controlled by the same processes, it’s only normal that Dysautonomia would be a full-body condition with such a wide range of full-body symptoms. It is possible, however, for some nerves to repair themselves. We can only hope this will happen to all of us and all of our nerves! Have you seen a naturopathic doctor or holistic health professional? Maybe trying massage therapy, acupuncture, or acupressure would help alleviate some of your symptoms. Detoxifying can also be of benefit to your system since most Dys patients do not detoxify toxins very well. Stay in a clean, natural well-ventilated area and avoid all chemical triggers. Hope you get feeling better soon, all the the best to you!!

    You are all amazing and strong people. Will keep you all in my prayers!

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  15. Posted by Emily on February 12, 2011 at 9:30 pm

    Hi, I do live in the Midwest and would like some suggestions of doctors. I am just now being tested for dysautonomia, and have been seeing Dr. Janice Gilden in Chicago. I am going to be tested at University Hospital in Cleveland. Any other suggestions??

    Reply

    • Posted by Marilyn on September 14, 2011 at 5:57 pm

      I also live in the midwest and was considering seeing Dr. Gilden. Did you get any benefit from seeing her? I have POTS and Neurocardiogenic Syncope and have a neurologist that’s been treating me with an assortment of meds but still having daily problems. I’m just not sure if it’s worth pursuing another doctor for a condition that has no cure…

      Reply

      • I haven’t seen Dr. Gilden myself, but I have heard mixed reviews from her. Dr. Grubb is not too far from Chicago — maybe 4 hours, and he is a better physician when it comes to treating POTS. You may have to wait some time to get in and see him, but if you’re making a trip out to the Mid-West to see a POTS specialist, he would be more worth of your time and money.
        All the best,
        H

  16. Posted by Nourah on March 3, 2011 at 1:51 pm

    Like your outlook. I feel much the same way. Can’t seem to subscribe. Keeps telling me my email address is invalid. Any clues?

    Reply

  17. Posted by Kathy Callahan on March 10, 2011 at 6:46 am

    Your blog is nicely done, thank you! I have had inappropriate sinus tachycardia (IST)/POTS for 20 years. Getting a diagnosis has required seeing at least 30 physicians, numerous tests and traveling multiple times out of my home state of Washington to the Mayo Clinic in Rochester MN, Cedars-Sinai Hospital in Beverly Hills CA, Seattle and my home area! I understand all the comments of living with exhaustion, sleeplessness, physically sensitive to many things, having to legitimize and explain to physicians what exactly dysautonomia is, plus mentally coming to terms with the fact my lifestyle has drastically changed. People expect you to get better especially when you look healthy because they don’t understand. Finding the energy to stay positive is difficult at times but having understanding friends and family helps as does looking outside our selves always makes one feel better. I am in a number of clinical trials hoping one day another individual will not have to endure what I do on a daily basis. Having researched for years I am happy to say more studies are being published which will translate into more treatments in the future. I am currently working with a electrophysiologist in Seattle WA to get a prescription drug from Europe that is promising for IST it is called Ivabradine and at this point is my only hope of lengthening my lifespan as I was recently informed my life will be significantly shortened.

    I went skiing today and by lunch time I had to quit due to a high heart rate, light headiness and utter exhaustion. Instead of dwelling on not performing as I once did I focused on the fun I had with my daughter being at 6500 feet enjoying the view. Daily turning over to God my struggle of “who” I am has been challenging as what I accomplish has defined a part of me. Being a high achieving, active outdoor person has been rewarding and fun and now not only do I achieve less but I need to change myself perception. I appreciate the tone of your blog and I agree with your belief that a positive attitude is powerful medicine.

    FYI I am a registered dental hygienist and I caution all of you to be careful what you drink all day. It only takes 20 minutes for a cavity to begin and repeatedly bathing teeth in sugar or acidic drinks dissolves the enamel causing increased dental decay. Gatorade tastes great but is one of the worst drinks causing decay and erosion. Juice and sports drinks usually have a lot of sugar. Look for sugar free alternatives especially beneficial are products with Xylitol a sweetener that neutralized the PH in your mouth decreasing the incidence of tooth decay Thanks Kathy

    Reply

    • Posted by Christa Lilly on July 10, 2011 at 4:39 pm

      Hi Kathy,

      I am also from Washington state, (Seattle area), and looking for recommendations for doctors. I have all of the symptoms of IST/Pots. My internal medicine doctor doesn’t understand or believe in dysautonomia so he just dismissed my symptoms. Can you make some recommendations?

      Thanks!
      Chris

      Reply

      • Chris,

        Have you found a doctor in Seattle area. I live in Issaquah and am looking for a specialist.

        Thanks
        Jo

  18. Posted by Krista on April 29, 2011 at 7:43 pm

    Hi,
    I am pretty sure I have dysautonomia. I can’t find a good doctor to diagnose, however. I live in IL. Do you have any ideas? My symptoms are- nausea, dizziness, fatigue, headaches if I do not rest, low blood pressure that goes lower when I change positions, blurry vision, loss of 25lbs… Thanks for any info you can give!

    Reply

  19. Posted by Krista on April 29, 2011 at 7:44 pm

    Sorry- do I need to come back here for answers or do you email them?

    Reply

  20. Posted by Adena on May 20, 2011 at 12:02 am

    Hi,

    I am looking for a doctor who specializes in POTS in the NY tri-state area… willing to travel to PA, DC, etc… willing to travel anywhere if there is an amazing doctor who can TRULY help!

    I’d be so grateful for any recommendations!

    Thanks,
    Adena

    Reply

    • Posted by susan on April 8, 2014 at 1:38 pm

      I am in NYC and suffering too. I haven’t been here myself but there are several neurologists in nyc. One I found is at the following:
      Office Hours: 9 AM – 5 PM (Monday to Friday)
      Mailing address: Dysautonomia Center
      530 First Avenue, Suite 9Q
      New York, NY, 10016
      Phone: 212-263-7225
      Fax: 646-754-9647

      Reply

  21. Posted by stephanie on July 20, 2011 at 11:37 pm

    This site is indeed a Godsend! I was diagnosed when I was 16 and put on a cocktail of meds that I took until I was in my 20’s. I have managed to do fairly well for the past decade with the exception of uncontrolled tachy with both my pregnancies. Now 33, and feeling great, working out regularly and eating great, I woke up 3 weeks ago exhausted and nauseated and feeling like I was going to pass out everytime I moved. When I go to the dysautonomia site, I know have literally every symptom. I have been in contact with my EP cardiologist and trying to get into a specialist in Pittsburgh since I only live 2 hours away. I have been so scared when I am home alone with my kids and do find that I am praying a lot more lately, leaning on the Lord for peace and comfort. Hillary, your information on this page is priceless! I am on leave from work until I can get back on all the meds and possibly pacemaker and am so scared that I will not be able to return. I work at a cardiac rehab and am constantly under stress there. I will be checking this page often. Thank you for starting this great group support!

    Reply

    • I am glad you have enjoyed my page and found the information helpful. It’s soooo nice to have an inspiring story like yours on here. (I am sorry it took me so long to get your comments up.) But many people in the first few years of their diagnosis feel quite discouraged, but to hear that you have actually IMPROVED over time and have had two successful pregnancies is a wonderful thing! I’m sure your kids are inspired by your strength as well. And yes, sometimes prayer is the only thing we have to get us thru. :)
      All my best,
      H

      Reply

  22. Posted by Stephanie on July 20, 2011 at 11:55 pm

    This site is indeed a Godsend! I was diagnosed when I was 16 and put on a cocktail of meds that I took until I was in my 20’s. I have managed to do fairly well for the past decade with the exception on uncontrolled tachy with both my pregnancies. Now 33, and feeling great, working out regularly and eating great, I woke up 3 weeks ago exhausted and nauseated and feeling like I was going to pass out everytime I moved. I have been in contact with my EP cardiologist and trying to get into a specialist in Pittsburgh since I only live 2 hours away. I have been so scared when I am home alone with my kids and do find that I am praying a lot more lately, leaning on the Lord for peace and comfort. Hillary, your information on this page is priceless! I am on leave from work until I can get back on all the meds and possibly pacemaker and am so scared that I will not be able to return. I work at a cardiac rehab and am constantly under stress there. I will be che

    Reply

  23. Posted by Susan on September 19, 2011 at 3:50 pm

    Hello,
    I would like more information about your hydration beverage. You mentioned 3 parts water and one part juice along with a teaspoon of salt. Could you be more specific about the parts? I make a hydration beverage with an envelope of unsweetened Koolaide with 2 qts. of water and 1/2 tsp. of salt. Thanks!

    Susan

    Reply

    • Hey Susan. My hydration beverage is 3 parts water, and on part all-natural juice such as Orange Juice or Cranberry juice. Basically, if you have a 16 oz. water bottle, it would be 12 oz. water and 4 oz. juice. Then I had a teaspoon of SEA SALT. Shake. And sip. Drinking it all in one setting is not quite as effective for rehydration as sipping it over the course of an hour. Hope this helps.
      H

      Reply

  24. Posted by angeles on October 18, 2011 at 7:40 am

    wow! is the first time i get to this page and is wonderful. i have several dysautonomia, diagnosed 10 years ago, i followed a conventional treatment for the first 3 years with a really good, and specialize in the disease, doctor… everything was okay until i met this woman with the disease, and realized that what i have is not a desease, is an adjective of myself. I am tall, i have long hair and i have dysautonomia.
    I decided to stop taking the pills and realized i was as bad as the beggining, i wasnt getting better, the pills just blocked the symptoms.
    I start my treatment with an anthroposophic doctor, i fully recommend it, and was great, she teach me how to live with it, what to eat and behave, since then, i stopped feeling like a disable person. Is true, i still have some crisis periods, but i can do all what i want, i just have to pay attention to my body and let him rest.
    I think that all human beings should do it, we are lucky our own body talks to us, and help us to take good care of it.
    maybe is not that bad to have it… it makes me feel a little bit alive sometimes, and help me to control myself.

    i was wondering, i have just got a crisis, i have been living in China for two months, and i think it might be that they use another kind of salt?? do anybody know anything about it?? it happened to me already once in UK, because everything was light-salted….

    Reply

    • Thank you for sharing your encouraging story. Every person’s case is different, but it’s nice to come across a positive one. I am so glad you have found a lifestyle plan that works for you and has improved your condition. Could you tell us more about the anthroposophic doctor? I’m sure many of my readers would love to know more about that, considering it helped you.
      I am not familiar with the type of salt they use in China. I do know, however, that sea salt is much better for sodium retention than regular iodized salt. I ahve also heard that Himalayan salt is the best salt there is because of certain extra minerals. But like I said, just what I’ve heard around the Dys community.
      Best of luck to you in everything!
      H

      Reply

  25. Posted by doug demedicis on December 2, 2011 at 7:55 pm

    I would like a Dr. in the birmingham alabama area.thanks

    Reply

    • I am not familiar with a Dysautonomia specialist in the Alabama area, but if you visit http://www.dinet.org they have a physician list and you may be able to find one. If not, your best bet would be to seek out a TEACHING hospital in your area that will have doctors with more academic minds who may be somewhat familiar with Dysautonomia and related conditions.
      Best,
      H

      Reply

    • Posted by Beth on January 23, 2012 at 8:26 pm

      Dr. Phillip Watkins is in Birmingham and has an autonomic disorders clinic there.

      Reply

      • Thanks for sharing Beth!

      • Posted by Jennifer on July 5, 2014 at 7:40 pm

        Hi Beth! I am looking for a support group in the Birmingham, Alabama area. I saw Dr. Susan Phillips at the Mitral Valve Clinic in Birmingham. However, I am having a very hard time fighting the fatigue. I want to sleep ALL day. However, my life/job does not allow this. Any suggestions?

  26. I am from Chicago and am looking for a specialist in the area.
    Also, how do you deal with the cold?
    Thanks, Liz

    Reply

    • Hey Liz,
      The only POTS/Dysautonomia specialist I know of in Chicago is Dr. Gilden. She’s actually a pediatric Dysautonomia specialist but she may be able to refer you to one that can treat you as an adult. Also, Dr. Blair Grubb is in Toledo, which is about 4 hours from Chicago, depending on the area you live in. And if you can make the trip, it would be well worth your time. I am in the Indianapolis area, which also isn’t too far from Chicago and have several good doctors I could recommend for you here. Let me know.
      And the cold doesn’t bother me too much. It’s actually much better for my BP than the heat. What sort of problems are you having with the cold? Stay layered up if you have to go outside and try keeping a mug with a warm drink in it.
      Best,
      H

      Reply

  27. Hi there, i read your blog occasionally and i own a similar one and i was just wondering if you get a lot of spam feedback? If so how do you prevent it, any plugin or anything you can suggest? I get so much lately it’s driving me crazy so any assistance is very much appreciated.

    Reply

  28. Posted by Susanne McCann on February 18, 2012 at 1:55 am

    My grand daughter has been diagnosed with POTS. She lives in Tampa and her Drs are not able to help her at all. I live in Indiana and we were thinking if we could find some helpful Drs here, they could make a trip north. What Dr could you recommend in the Indy area?

    Kayla is 14 and has not been able to attend school. She is so dizzy she needs to hold on to the wall to walk. Yesterday she passed completely out. She has severe headaches and chest pain. Drs have not been able to give her anything for even temporary relief. Her mother has contacted Dr. Grubb; however, she is on a waiting list. This poor child has had it and her parents are desperate. They read as much as possible on the Internet, but have not been able to find relief.

    Suggestions?

    Thank you!

    Reply

    • There are several doctors I would recommend, and I do think your granddaugther could get help in Indy. Send me an e-mail at hopefulhillary@gmail.com and I will provide you with more information on the physicians I recommend. I am so sorry that Kayla is having to go through all of this but I can assure you that it DOES get better. Hang in there and I know that your support for her helps a lot!

      Reply

    • Posted by Calista Smith on March 4, 2012 at 9:02 pm

      My daughter has POTS, and we live in Tampa. After years of searching, we found a wonderful POTS doctor in Pensacola named Dr. Charles “Randy” Thompson, who has POTS himself and has a part-time medical practice. He is not only a board-certified physician, he is smart, compassionate doctor. The trip to Pensacola is a short flight or an 8-hour drive, but it is worth it! He treats only patients with POTS (or related conditions) and is the first doctor we have seen who actually provides treatment after diagnosis. (Two trips to the POTS experts at Vanderbilt University in Nashville did little more than provide a diagnosis.) I would encourage your granddaughter’s parents to get an appointment with Dr. Thompson.

      Reply

      • Calista,
        Thank you for providing this information. I will keep it posted here and also try to get it to Kayla’s parents. Your input is appreciated. Hope your daughter is well.
        H

  29. Posted by Nicole Hackett on March 5, 2012 at 2:22 am

    I really enjoyed this website and reading everyone’s responses and concerns. I was just diagnosed with POTS/Dysautonomia in October. I honestly thought I was going crazy, and my family Dr wanted to be me on medication for anxiety, but I refuse! I was so active, living and loving life, planning a wedding, working full-time, and owning my own business. All of a sudden it came and now I can’t get back, I feel like I’m lost. No one understands, they say I’m not as sick as I make myself out to be. I get sad thinking about how just 6 months ago I was living the life I wanted, and now I feel like I’m stuck. I was allergic to Midodrine and now am on Fludrocortisone which seems to be helping with the BP, but I always feel like I can’t stop thinking about the condition, and I pray and I do have faith that I will be able to get better. I guess I just need to vent, I am 26 and my wedding day is September 8th, and I can’t even get excited about the day because I am more worried about whether or not I will actually be able to physically make it through the WHOLE day. My fiance really does try to help me out but I think he is at his wits end because I don’t even want to go out with our friends anymore. I don’t know what to do, I miss my family and they live 2 hours away, but on strict order from the my specialist Dr. Randall Orem, I am not allowed to travel that distance alone (I have had many attack while driving), I’m still not sure why this is but it happens a lot when I drive. Any suggestions? Should I go ahead and take anxiety medication? How do I get my Fiance and family to understand what I am going through, and that although I don’t look sick, I am dealing with something rare?!?!

    Reply

    • Nicole,
      I am so sorry to hear of your POTS/Dys diagnosis and trust me when I say I can 100% relate to everything you’re feeling and going through. It’s so hard to go from being so active to so limited. It’s A LOT for a person to cope with. Don’t be too hard on yourself – this journey is not an easy one by any means, but it does get better. I hope that your specialist is working closely with you so that he can find the best treatment route for you. Fludrocortisone helped me, too, and I am glad you are able to get some relief. They key things with POTS/Dys are to stay hydrated (drink a TON of water all day long), and get enough rest/sleep at night. These simple things go along way for us. Try to be as active as possible – even if you feel totally horrible – getting out and doing what you can DOES help improve symptoms over time (but take it slow, try to avoid over-exerting yourself… this takes ‘practice’…) but is great for your mental well-being. I am glad your fiance is supportive, as this is not always the case. I’m sure it’s hard on him, too, and frustrating for you to try and get him and your family to understand. Unfortunately, they never will. They best “understanding” they can give is to acknowledge your condition and be sensitive to it. You can try to get them to read up on the condition or watch videos/documentaries about it and hear from other patients – then they may be able to see how real the condition is and that there are many out there suffering the same as you. There are a lot of resources on my web-site that you may want them to check out if they are willing. It’s crucial that you have supportive people around you. My suggestion about your attacks while driving may be because when driving, there is so much neurological stimulation (changing lights, signs, other cars, depth perception, etc) and this sort of “over-stimulating” environment can certainly reak havoc on your autonomic nervous system. You asked about taking anxiety medication – and while anxiety is NOT the cause of your symptoms regardless of what people may say (although it can certainly be an effect), anxiety meds can help to de-sensitive this autonomic hypersensitivity and I would say, in your case, it’s worth a try. You may find it helps with shortness of breath, tachycardia and sleep problems, too. Start on a low dose recommended by your specialist and see if it helps. If it doesn’t help, then you don’t have to continue taking it of course. A lot of figuring out how to live with this condition is trial and error. I know it’s so frustrating, but stick with it and stay strong and you can get better.
      You are definitely not alone. This disease can be isolating, but there are people out there who do understand and we are here to support you.
      Best,
      H

      Reply

      • Posted by Delina on September 28, 2014 at 6:29 am

        I agree that some meds can get you over the hump of readjusting to driving, I had a lot of ‘spells’ while driving but was determined to get over it. I took an SSRI for a year or two and took longer and longer drives until I felt comfortable again. I can now drive most anywhere for several hours–except still not over VERY HIGH bridges. I weaned myself off that Rx last year. I still have to make some unplanned stops if symptoms return on a longer trip–sit in a fast food place or something. I just felt it was one joy I had had that I couldn’t let Dys steal from me. Best of luck.

      • Delina,
        Thank you for sharing your wisdom and experiences with us.
        H

    • Posted by Judi Schwab on July 21, 2012 at 3:14 am

      Hi there……..I just got diagnosed with Dysautonomia May 1st, 2012 after 8 or so years of doctors, tests ect. I was very resistant to taking any medications but over the 8 years I have changed and am more willing because I want a quality of life more that quality. I now use the Clondine patch for anxiety and it has really helped me….my husband says so to ! It just helps me to be more peaceful with the anxiety and nervousness stuff. I wear a patch for 7 days and then change it. It has also helped me to feel more of a sense of well being….huge. Also the video Changes: Living with Postural Orthostatic Tachycardia is wonderful for your family and friends…it is 43 minutes and really has helped. It seems to be so hard for people to understand because “YOU LOOK GOOD!!!” Be good to yourself and easy on yourself. Blessings, Judi

      Reply

  30. Does anyone else have sleep as the worst problem? You all talk about needing to get 8-9 hours of sleep, but I need to get at least 12 to function.

    After bunches of thyroid tests(yes, the antibodies test has been done) I was finally sent to a pediatrician who knew about this disease and referred me to the Mayo Clinic in Minnesota. My problem is that she said I would have an appointment for sometime in February, and that Mayo would call us with an appointment time. It is now April, and we have heard nothing. We’ve called the doctor’s office about it, and they keep telling us that Mayo will contact us with an appointment later. Any idea what to do? Should we call the Mayo Clinic?

    Back to the fatigue, if left to sleep, I don’t even know how long I would sleep. My parents had to wake me up once after a straight 18 hours on a normal night. In addition to this, I have extreme nausea, acid reflux, dizziness, and my heart rate goes up a bunch when I stand up then goes up a bunch again if I exercise. I’ve come very close to fainting, but I have been able to stop it so far by sitting down with my head between my legs and drinking cool water. Does this all sound familiar to anyone?

    Anyways, this post was really helpful, thank you!

    Reply

    • Posted by nanigem on January 30, 2015 at 11:46 pm

      I have recently started sleeping on a mattress that is elevated at the foot of the bed. I feel that it’s helping the blood circulate back to my heart and head. I have noticed that I wake more easily in the morning and I feel that I have a bit more energy. It’s subtle, but helpful. Maybe that could help?

      Reply

  31. Posted by danielle on April 23, 2012 at 5:28 am

    Hello millerdancer:
    I used to have sleeping problems too, and i started to use MELATONIN to sleep better because it regulates your sleep.
    When a was first diagnosed for dysautonomia POTS i used to slepp 15hrs in a row and it was very difficult for me to wake up, i needed to check my sugar. I remember that my husban had to wake me up and give me some orange jucie zips to drink and i went back to sleep and 2 hr later I would wake up by my self ….it was also because I used to live in a very hot weather and even though i had the air conditioner on, hot was making my blood preassure drop and that was making me feel dizzy all the time and very tired. I used to drink gaytorade during the day too, but now just water with salt marine.

    when you feel like that i recommend you don ´t stand up very fast and if you can, lay down raising up your feet with a pillow a little bit… eat some nuts or penuts instead of fruit and rest.

    I dunno about mayo clinic but I heard that they are very good but very busy… maybe you can look for someone else while you wait for their call, someone specialist in dysaotonimia pots, you can look for doctors at http://www.dnet.org

    remember not to take hot showers and if you feel very week, use a chair inside, so you can relax, and enjoy your shower with out feeling that you are going to pass out.

    Reply

  32. Posted by danielle on April 23, 2012 at 5:37 am

    hello hillary sorry for my late up date, guess was, I got pregnant and now my baby girl is 6 months, the pregnancy was very difficult at the beganing and at the end, but from the 5th and 8th month I felt my self again!!
    20 dyas before she was born i started midrodrine treatment and i also started taking rhodiola it helps me to have more energy during the day…. it is very good for chronic fastigue!!
    I see the difference during winter you guys were rigth
    thank you for all your recommendations!

    I hope everything is going better for all of you !! we need to keep looking to the possitive side of our syndrome… we have to have a relax life and this helps us to enjoy every moment because we do it a bit slower than others…xoxo

    Reply

  33. Posted by Niccole on April 26, 2012 at 12:34 am

    It’s been a year since I was diagnosed with Dysautonomia and vasovagal syncope. I continue to drink G2 and eat alot of salt and eat salty snacks. But I still feel bad 99% of the time. I dont know what to do to get better. It don’t seem like my doc wants to do anything for me. The medodrine that he gave me does not work since I am alergic to it. If anyone has any info for me please help. I really feel like I’m going crazy. I’m 30 years old and this all started 1 year ago. I was forced to move back in with my parents due to I was no longer able to work and lost my apartment. I just need some help.

    Reply

    • Nicole, I am so sorry you are struggling and don’t have the help of a physician. Getting a doctor that is knowledgeable and/or willing to help treat your Dysautonomia is half the battle. Where do you live? You definitely need to see another doctor. Perhaps a nuerologist or cardiologist. Specialists should know some about Dys versus internists or family medicine doctors. It sounds like you may need more pharmaceutical treatment. There are a variety of drugs out there that can be used in treating Dysautonomia and I think giving some of them a try would be worth your time. Keep us posted. Best, H

      Reply

  34. Posted by Eddie on May 29, 2012 at 11:06 pm

    Thanks for the great advice. I live in Long Beach, CA. I been having a hard time finding a doctor. The neurologist believes its autonomic disorder but doesnt know which one. I been having a hard time with this because the neurologist can’t give me any answers because more test need to be run. All the test so far normal. I know how I feel with the sensitivity with cold temperatures and intolerance to hot weather. My legs are in pain weak, tired, brain fog, urinary and bowel troubles, chewing and swallowing, dizziness, and the heart rate changes. Can any body points to the correct forums. Thank you and God Bless

    Reply

    • Research Dr. Maragaret Ferrante and Dr. David Cannom, they live in California and are autonomic specialists and may be able to help. Best of luck to you.
      H

      Reply

    • Posted by bobbi on December 17, 2012 at 11:47 pm

      We live in Texas (and could not find a doctor educated about POTS/dys, so we traveled to Bakersfield, CA to see a pediatric cardiologist who specializes in dysautonomia (our daughter is 12, and has had symptoms for three years with doctors here just treating symptoms, she was finally properly diagnosed there) His name is Arron Banks ( he also has two other locations that would be closer for you to travel to), there is an adult Doctor there named Dr. Salvo (not sure of his first name), who also treats POTS. I met with a group of people there who all have this, and it was very helpful. The adults said they use Dr Salvo. Good luck to you.

      Reply

      • Thank you bobbi!! I really appreciate you sharing your information with us regarding doctors. Finding a good physician is half the battle! I will pass this info along to my other readers who may be close to CA and in need of a good Dr. Thanks again!
        Best,
        H

  35. Thank you for writing this. I have been dealing with a severe case for five years. Researching it sporadically off and on with knowledge of what it is for the last year. I just found this after considering changing my diet instead of relying on medicine which has been ineffective thus far. This gives me hope in the fact that this constant exhaustion is normal and that there might be a chance with this.

    Reply

  36. Posted by datiger on July 12, 2012 at 4:40 am

    Hi, I’ve had dysautonomia for my whole life I think. It’s been a struggle, when I was younger I never had the faintyness, just the headaches and stomach aches. Now it’s been two years of being bed ridden and can’t stay in one position, I’m constantly holding my neck to feel my heart and hoping it doesn’t stop and my B.P. is shooting all over the place. I sometimes get so tight and when I relax I get numb and get a feeling doom and think I’m going into some sort of cardiac arrest and then my heart gets so sore. Anyways….. I can keep going. I’m just happy that I got some sort of diagnosis instead of being escorted out of hospitals to the curb of the street and calling me crazy. LOL, not being able to move and thinking your going to die and getting kicked out of E.R.’s is no fun. Anyways… Besides all this…..

    On a daily basis this condition feels life threatening. Where do I go, so I can actually be treated. When they put the thing on my finger for oxygen, it goes down to zero and starts beeping and that’s when I’m out of breath and then I get a shoot of blood that rushes through my body when I panic and then I start breathing again and then try to relax and it’s a vicious cycle. The doctors and nurses say that the machine doesn’t work that well and that it would be impossible for it to happen or I would be dead! My symptoms are happening and it’s not the machine being weird, but they don’t believe anything I say, anyways I’m still here, I’m just concerned about it all as you can see from the long post. Sorry guys.

    Anyone know of someone who I could see quick. I need to be hospitalized, but can’t seem to figure a way to not be discharged. They say I’m crazy and honestly…. I kind of have been lol.

    Anyways….. Any help would be great…. I live in California.

    Reply

    • UCLA has a autonomic disorder clinic.
      Dr. David Cannom is a cardiologist at another hospital in LA that is familiar with treating Dysautonomia.
      Dr. Margaret Ferrante may also be of some help.
      Your symptoms sound severe and I am so sorry to hear of your suffering.
      You are NOT crazy and you are NOT alone. I admire your strength, it sounds as if you are very persevering.
      Could you tell me if you have ever had a brain MRI done and if so, what were the results?
      Thanks,
      H

      Reply

    • Posted by sinead orourke on October 29, 2014 at 7:32 pm

      Im in the exact same boat hun onli other symtoms 2 im constantly ill vomiting in pain breathless like u cant eat in 5 weeks hr going from 150s to 20s bp as erratic as urs cqnt stand by myself list goes on i have nowhere ti rurn for help as they treat u with antidepressants over herr no symptomatic management im terrified as im getin worse and nobody will help

      Reply

  37. Definitely believe that which you said. Your favorite reason appeared to be on the internet the easiest thing to be aware of. I say to you, I definitely get annoyed while people think about worries that they just don’t know about. You managed to hit the nail upon the top as well as defined out the whole thing without having side effect , people can take a signal. Will probably be back to get more. Thanks

    Reply

  38. Posted by Judi Schwab on July 21, 2012 at 3:18 am

    Nicole,
    Do you know about Dr. Svetlana Blitshteyn, she is an expert in autonomic disorders..She is in New York, you can google her name and find her website. She does phone consultations and is very reasonable……and very helpful. I would recommend her……….she know many medications and ways to help improve the quality of your life. Blessings, Judi

    Reply

  39. Posted by Julie on August 29, 2012 at 4:08 pm

    This was GREAT info. I have just recently been diagnosed with POTS (seemed like it took for ever for my group of doctors to figure out) and also was diagnosed with EDS: Ehlers Danlos Syndrome (connective tissue disorder). I know exercise is important but trying to find things that I can do between these 2 conditions is really hard. I was told swimming but can not do the arm portions due to subluxations and also mg hips are affected…do you have any suggestions?

    Reply

  40. Posted by shikha on September 27, 2012 at 11:24 am

    hi i live in NEW DELHI,INDIA.does anyone know of any specialists in this country…or suggest any websites please….please help…URGENT NEED OF A GOOD DOC

    Reply

    • I don’t know, Shikha. I’m sorry. But you should print off any information you can and take it to a specialist there — either in Cardiology or Nuerology at one of the best hospitals and see if there are willing to work with you, listen to you, and try new ideas. Best of luck and warm wishes.
      H

      Reply

  41. Posted by Kelly on October 21, 2012 at 2:47 pm

    I can’t do this anymore!So tired of existing,this is NOT living.No,not suicidal,just pray that GOD will take me home.Laying on my couch day after day.Too exhausted to care,talking takes too much energy&heads too foggy.Eyes even hurt.Lost my fight&can’t get it back.SORRY,had to put my feelings into words.LOST&ALONE

    Reply

    • I’m so sorry you are suffering so much Kelly. I have days where I feel just like that. I am sure all of us do, if we are honest about it. We need to talk about it and I hope this site can be a safe place to do just that. Our suffering is real and devastating at times. We need all the hope we can get. Please stay strong and hang in there. Work is being done and advancements are being made, I am a part of it and I can tell you that there IS hope.
      Hugs,
      H

      Reply

      • Hugs back to you,HH!I was afraid my message would be rejected for sounding so desperate.I hate riding rollercoasters,alot of the time that’s how this feels.You want to scream out to the dude running the rollercoaster, “STOP,I WANT OFF!”The major difference is you know sooner or later it will end.With dysautonomia you never know when you’ll get that break&how long it will last.The breaks seem to come less often.But,even 10 minutes is reason to celebrate!!So blessed to have found this site…a place where I can be me&don’t have to sugar coat my words.I will definitely be back.I’m really not all gloom&doom!Thankful to have a place w/understanding&support.Not someone telling me if maybe I did this or that I’d feel better.GODS BLESSINGS,Kell/ formerly known as,”The Energizer Bunny”!

      • I am so glad you have found your safe haven here. Feel free to share and vent as much as you need to. We are only stronger in numbers. :)
        Best,
        H

  42. whoah this blog is excellent i like studying your posts.
    Stay up the great work! You recognize, many individuals
    are hunting round for this information, you can aid them greatly.

    Reply

  43. Posted by Leah C Smith on November 4, 2012 at 8:48 pm

    I am struggling to the point that I cant do this, I am emotionally spent! I have had Crohns for 12 years and had my first surgery one and a half years ago. Soon after I was diagnosed with pots and acute Fibro. I live in Montana and need specialist, and I am looking for referrals. My pain level is never under a 7, and I am in he ER often. Getting tired of them looking at me like I am crazy, or a drug addict.

    Reply

  44. Leah,
    A friend of mine has Crohns and POTS too and you may find her to be helpful for you. Her name is Ashley Pauls and she is a follower of mine on here so you may be able to locate her here on the blog or you could find her on Facebook, her name is “Ash Pauls” and she is from Canada.
    I hope you find relief soon. I am sorry for your suffering. You are not alone.
    Warm wishes,
    H

    Reply

  45. Posted by Julie on November 11, 2012 at 10:42 pm

    I totally know how you feel!!! My oxygen level & pulse are all over the place… I have a finger thing at home that my doctor gave me and there are times that I feel like I can’t take a deep enough breath and my pulse has dropped down to 29 & my oxygen will be in the 80’s then all the sudden my pulse will shoot up to 140’s… It’s awful :(( one moment to are praying your heart will start beating & the nausea will go away then the next moment my heart is pounding & I can feel it in my throat :( tell me, when your heart is about to slow way down do you get a warm feeling all over? I hope you find some help fast. It does feel like a life threatening thing when you feel this way. I wish you luck!!! I’m here if you need to vent :)

    Reply

  46. This was very helpful but im still scared of the out come I was diagnose with dysautonomia as well and I get alot of symptoms

    Reply

  47. Hi there,

    I am a mom to a teenager who I think may have dysautonomia. We live in Seattle and there is no doctor on the list for our area. Would it be best for us to travel to a specialist?

    Thank you,
    Cyndi Kershner

    Reply

    • Cyndi,

      ABSOLUTELY. Traveling to a specialist (who could then work closely with a local doctor) would be the best thing you could do for your teenager. The sooner the correct treatment is implemented, the sooner you will see improvement/symptom decrease. The good news is that a lot of pediatric cases of dysuatonomia resolve in adulthood. I hope that becomes true for you and your child. Patient-specific treatment is absolutely critical. I would travel to at least two of the following places to see Autonomic Specialist physicians that could better diagnosis (correct, *specific* Dx is half the battle) and correctly treat your child:

      Dr. Blair Grubb
      Toledo University Hospital
      Toledo, OH

      The Cleveland Clinic
      Cleveland, OH

      Vanderbuilt University Medical Center
      Nashville, TN

      Dr. Phillip Low
      Mayo Clinic,
      Rochester, Minnesota

      Dr. Svetlana Blitschteyn
      Buffalo, New York

      UCLA Center for Autonomic Disorders
      Los Angeles, CA

      Hope this helps!

      Best,
      H

      Reply

    • Posted by Denise on October 3, 2014 at 7:14 pm

      Hi Cyndi,
      Did you ever find a good doctor for your daughter? My 15 year old daughter is really struggling with her POTs. Her cardiologist at Children’s Hospital has been great with the diagnosis and prescribing some stuff to help with the cardio symptoms but I need someone that can treat all her other symptoms.

      Reply

  48. Thanks so much for your feedback Hilary!
    Best,
    Cyndi

    Reply

  49. Posted by Meme Wells on November 27, 2012 at 3:59 am

    Haven’t found anything in my area. New to houston Texas area. Would like to find a doctor some what close to me. If you would have any information I would appreciate it.

    Reply

  50. Posted by lyn on December 20, 2012 at 4:37 am

    Thank u.I think u helped me figure out my issues after years of tests and suffering.

    Reply

  51. My spouse and I stumbled over here coming from a different website and thought I may as well check things out.
    I like what I see so i am just following you. Look
    forward to exploring your web page repeatedly.

    Reply

  52. Posted by Paula Brandl on February 10, 2013 at 1:53 am

    Hello! Looking for a good doc in Pennsylvania?? Thanks so much. Blessings..

    Reply

    • Don’t know any off the top of my head Paula. I have a friend who lives in PA and I will ask her and get back to you. Also, check dinet.org
      Does anyone know of any good Dysautonomia doctors in PA??

      Reply

  53. You are so cool! I don’t believe I have read through something like this before. So good to find another person with a few unique thoughts on this issue. Really.. many thanks for starting this up. This website is one thing that’s needed on the web, someone with a little originality!

    Reply

  54. Posted by Paula Brandl on February 10, 2013 at 7:54 pm

    Thank you so much for checking!!

    Reply

  55. Posted by Judy on February 20, 2013 at 11:12 am

    I just saw Dr. Blichsteyn for the first time and she is wonderful. I have many, many of the conditions that point to dysautonomia. I also have several other chronic diseases and it has taken so long to get to the diagnosis of dysautonomia and POTS. My immunologist final got a full picture of all that I have been going through after talking to me as well as my husband. He said “you know, there is this condition” etc. So many negative assumptions were made by people who should have known better that I have been emotionally hurt beyond repair (drunk, too many pain meds, child abuse, spousal abuse, hypochondria, munchausen, lazy, clumsy, etc.). I can get treatment for the conditions but I don’t know how I will ever get over the hurt.

    Reply

    • Posted by Judy on February 20, 2013 at 11:19 am

      I should say that abuse allegations were people who thought I was a victim of abuse not an abuser. As far as alcohol, I went for decades without any and only rarely have any drinks in the last maybe 3 years. Only one time was it too much. The other assumptions were 100% completely unfounded.

      Reply

    • Judy,
      I am sorry it has been such a rough road for you towards diagnosis but I am glad you found Dr. Blichsteyn. She truly is wonderful and I hope she can help you improve your quality of life and find more solid answers and get the treatment you need (and deserve). Take good care.
      H

      Reply

  56. Posted by Eddie R. on March 25, 2013 at 3:21 pm

    Hi Guys. I just need to vent last time a lot of people sent me good information for the Long Beach, CA area. The majority of my autonomic dysfunction has been in my legs and bladder area. I also have other problems like weak heart right but my blood pressure for the most part is pretty normal. I been having really hard time with my neurologist in Long Beach CA. There going to do a nerve conduction test but they never get back to me on anything I have to always call them. My General MD is great but cant really do too much because this is out of his realm of expertise. I’m only 33 yrs old and I frustrated and stressing out. I have a hard time urinating some days and certain days I feel like I might just urinate on my self. The doctors aren’t too much help. Through all this I still put all my faith in the Lord. I just been have a hard week. I was wondering if any of you have tried Chinese medicine or other natural products. If anybody can help me with advice or any other info. I would really appreciated. God Bless. My email address is LBEDDIE@hotmail.com. Also if you guys know of any forums I can join or support groups because I’m at a point that I need it.

    Reply

    • hi Eddie,
      I am sorry you’re struggling so much. we definitely understand & you are not alone.
      what sorts of testing have you had done in regards to your autonomic dysfunction? how about brain MRI’s? any abnormal results there?
      incontinence is actually a fairly common issue in dysautonomia however most are reluctant to talk about it.
      i understand and it IS frustrating.
      there’s just not enough research and medical help for us out there. it definitely sucks.
      I have heard some pretty solid success stories with Chinese (and other eastern) medicinal practices. i would say to give it a try. let us know the results ok?
      i seem to do better with natural treatments and i think most of us do because we are so sensitive. i have found a lot of relief in acupuncture and massage therapy.
      hang in there and stay strong — i think we are some of the strongest people in the world. :)

      best,
      H

      Reply

  57. Posted by Jessica on March 26, 2013 at 5:18 pm

    I live in Illinois . Any dr suggestions ? Also
    My daughter has chronic stomach pain. Any suggestions

    Reply

    • University of Chicago is excellent.
      There’s also a pediatric autonomic specialist there , she’s a female physician, but i forget her name off the top of my head –sorry.
      chronic stomach pain is hard for many of those with dysautonomia. stick with natural, easy-to-digest foods. plenty of liquids. and maybe research or see some naturopathic doctors for help with the pain.
      keep us posted.
      best,
      H

      Reply

  58. “This is the best advice on this topic and you have tackled it in a noble fashion”

    Reply

  59. Posted by Kali on March 30, 2013 at 12:21 am

    This blog helped a lot! I am 18 years old and was diagnosed with dysautonomia last spring. Unfortunately, my doctor basically told me nothing about it.. I had to research all of it. He did not run any tests, give me any advice, or recommend any other doctors for me. My symptoms have recently increased, added, and become much more severe. Everyone is always getting annoyed with me for laying around all the time and not getting anything done. The nausea is probably the worst part for me, next to the fatigue. I’m not even sure what exactly I have. No one has ever tested or mentioned POTS to me, but I feel as though I need to check into that. Personally, I have way too many different symptoms to even keep track of. I want to know specifics about my particular case. I want to know what exactly is going on with my body! I am also and asthmatic, so I’m not ever sure if the breathing troubles have to do with that or something related to dysautonomia? I recently started getting headaches, but I have pretty bad allergies, so maybe they are just sinus headaches? It’s all just really frusterating, especially with college classes weighing me down. I need some doctor reccommendations, ANYTHING. Thanks so much for this blog though!

    Reply

    • hi Kali,
      I am sorry you are suffering so much. Where do you live? You definitely need to do some testing and then see a specialist for further evaluation. You are not alone and there IS hope but you definitely have to be your own advocate (sad, really) but it’s the only way. Educate yourself, pay attention to what helps and what doesn’t, keep record of your symptoms and try to look for any consistencies. Research and read and anything that hits home, take note of. There are many of us out here struggling and have been down that some road. It is very frustrating but definitely worth it if you are able to find help. You can always contact me if you need some direction.
      Best Wishes,
      H

      Reply

  60. Very nice post. I certainly love this site. Keep writing!
    green coffee bean extract

    Reply

  61. Youre so cool! I dont suppose Ive learn something like this before. So good to find anyone with some authentic ideas on this subject. realy thanks for beginning this up. this web site is one thing that’s wanted on the internet, somebody with slightly originality. useful job for bringing something new to the internet!

    Reply

  62. Posted by Daniela on April 2, 2013 at 8:03 pm

    Hi kali i totally understand You, i lived the sabe situation with doctora, friends And family the first 3 years…. I had to look it up by my self And show plp around me what does dysautonomia pots is… This blog its very useful because everyone here, knows how it feels. I am aliso asmathic and i hace bar allergies too i am gluten And lactose intolerance And alergic to sugar cane …. And very time that i eat something with sugar, i start having breathing problems…. Some doctors says That is not related to asthma some others do…. Some told me that sugar is not godo for your nervios system And it makes You moré sensitive to st reses And that a why i get those asthma attacks… I really dont know for sure… But i stopped eating sugar And i am felling very good, actualy i stopped having migraines ….
    I recommend You to keep looking videos in Youtube about plp with pots And show them to your family And friends to start dysautonomia awareness… This worked for me..

    Reply

    • Hi Daniela,
      Thanks so much for reading and sharing your story on here. Every piece of advice is helpful and we love to hear your own stories of success. I definitely agree that your diet plays a major role. I also do gluten-free and dairy-free and try to stay away from sugar. It’s really difficult but I know you are right about the benefits. Glad you are feeling better and staying strong. Hang in there and feel free to reach out anytime.
      Thanks for spreading awareness!
      Xo
      H

      Reply

  63. Posted by Eddie R. on April 3, 2013 at 2:32 pm

    Hi H
    Thanks for your reply. The doctors have done an MRI of the brain and spine. The also did a nerve test, but it involved placing sticky pads on my legs. All test have came back normal the next test is a nerve conduction test on my legs. I also have other symptoms as well. I have told my general doctor my heart doesn’t beat as strong as it use to but he said its fine since my blood pressure is fairly normal even though it’s on the lower end eg. 106/56-119/59. I remember in the past my heart would beat harder. I would even get tachycardia on a regular basis and they would just classify it as stress. I realy want to thank you H and all the other people that have been really supportive on this blog. Thank you and God Bless.

    Reply

  64. Posted by Kali on April 12, 2013 at 2:20 am

    What is that heart and puzzle piece symbol to the right? Love it

    Reply

    • Not really sure of its technical meaning or origin but I liked it because for me it symbolizes that we are still trying to figure this out. And we’re still loving. And it’s hard…. but that’s okay.

      Reply

  65. Hi!!! I was diagnosis 3 weeks ago with pots. Since I started drinking all the water and trying to increase my salt intake I am urinating all the time. Do you have any suggestions on this???? Thanks for all the helpful information. God bless!!! :)

    Reply

    • Hi Julie,
      So sorry you are struggling but glad you have a Dx. I hope you have found a good Dr. The increase in urination is normal, you will get used to it and your body has got to learn to retain the fluids. Make sure you’re drinking and increasing salt and the same time so that the salt holds the liquids. Also make sure your sugar intake isn’t too high as that can also cause increased urination. Try “holding it” if you can when you have the urge to try and teach your body again… it will get better, I promise!
      Thanks for sharing on here!
      Best,
      H

      Reply

      • Posted by Kate on February 9, 2014 at 2:40 pm

        Hi Hilary

        Thank you for providing so much great information about dysautonomia :)

        I am waiting for an appt to see a specialist which is in a couple of months. Although I haven’t been diagnosed I’m pretty sure I have M.E with some form of dysautonomia. I wanted to ask your advice on something. As I haven’t been given any support by my local doctors on what to do I have had to read up on things but I’m unsure whether I’m doing the right things.
        First of all, would you get post extertional malaise with dysautonomia? For example, I can do very little cognitively before feeling ill. I haven’t been able to read or watch tv for a couple of months. I am trying to differentiate to see if I have got M.E. I know how important it is to have complete rest for this illness so it kind of contradicts what I should be doing to improve my dysautonomia. I definitely feel better after serious resting with no sensory input.

        Thanks in advance
        Best of health
        Kate :)

      • Kate,
        You can definitely have post-exertional malaise with Dys. It’s usually pretty common but can come in various forms and severity and depends really on the root cause of your autonomic dysfunction. For me, since mine is neurological, cognitive work is much more exhausting than physical. Cognitive over-exertion can certainly make me feel pretty bad even if I was just sitting or laying while doing it. For some people, they have a delayed reaction and for me this is true when it comes to physical over-exertion. I won’t feel terrible right after but I will usually pay for it the next day.

        Please keep us posted on your progress.

        Warm Wishes,

        H

  66. My 26 yr old niece was recently diagnosed with dysautonomia and Pots, and her physician has not begun a treatment regime, She is experiencing swelling in the hand and arm , swelling, redness and pain and the surgeon opened the area and the pain and swelling decreased and she was released from the hospital, but after three days at home the pain and swelling is again recurring, Is there a medical facility which has a research going on in this area? She is living in Phoenix, Arizona and is being treated at Barrow’s Neuological facility. What other options does she have?

    Reply

  67. Posted by Delina C. on June 3, 2013 at 2:34 am

    For Nicole H.

    Please hang in there. My son (21) and I both have dysautonomia, and have both been so bad off we were unable to drive in the past. Some days he would pull over for a while–some days I’d just stay home. But we kept trying things–gluten free diet, Gatorade, salt, etc., and driving–a little more at a time. We both take Nadolol, which really helped the physiological causes of anxiety. I can now drive several hours away with no problems (but NO very high bridges yet). My son just drove along with his wife from Florida to Seattle. That was amazing considering how hard it had been. You will get there, too. I’m now looking into research about avoiding electromagnetic fields. We both got sick when we moved to a new house with Wi-Fi. Good luck and God bless…

    Delina

    Reply

  68. Posted by Shellie on June 7, 2013 at 6:20 am

    I can completely relate to everyone’s story. My prayers and thoughts are with you all. All I can say is…I get it..and I KNOW. Sometimes, at least for me, knowing someone else truly understands…that helps.

    Hillary-How amazing you can find the energy and strength to encourage everyone who shares their story/struggle on here. I pray encouragement for you as well. God specializes in making the broken more beautiful than ever.

    Reply

  69. Posted by Debbie Mason on July 5, 2013 at 12:13 pm

    Where did you go? I just found this website and there have been no posts since April. I was diagnosed with dysautonomia over 30 years ago by a very knowledgable primary care physician. Soon after, he retired and for years I went to many physicians who never heard of this thing called “dysautonomia”. I gave up. Then, it happened. I had to have a pacemaker implanted at age 44. Finally, five years after that first procedure, my cardiologist confirmed my original dysautonomia diagnosis. I have all the symptoms and they are exhausting and difficult to manage. Most family and friends just think I am a crazy lady who craves salt and has all these ailments along the way. I don’t go to doctors, period….unless I have some life threatening event and of course I see my cardiologist every 3 months. (I had my pacemaker replaced last June.). I have so many stories to tell that may or may not be helpful to others; however, if this site is no longer functioning, then I won’t bother. Just let me know. About to turn 56. Have 6 grandchildren and one on the way. Retired a few years ago after 30 years of employment with the same agency.

    Reply

  70. Posted by Victoria Siegle on July 19, 2013 at 7:01 pm

    Hello
    I have had Pots since 2002! Got my first pacemaker in 2003, the next one, 2006 and then another one, 2012. I keep getting the updated models! I am always willing to try anything new to include medicines. I was trying the shots, epogen, but it did not help me. I am the guinea pig that it may not help me, but could help someone else. I currently pass out with no warning about 6 to 12 times a month. It used to be 30 or more so a decrease. I used to see Dr. Benjamin Levine in Dallas, Texas and he is very good so anyone near there should look him up!!! But, because I have such a severe case he sent me to Dr. Blair Grubb in Toledo, Ohio. So, for about a year I was flying here every four to six months and my husband said we are from that area so lets just move back. He had retired from the Army in 2000, he did about 23 years and we settled in the Dallas area. We both loved Texas and did not want to leave. So, we came back to Ohio and he quit his job. But, he is now a plant manager for an International Company and I got to school online because I was so bored just sitting at home. Nobody would take the legal liability of me passing out at their establishments. I was in banking when all this started. What a life. Now because of this I have had three strokes, but I wake up everyday with a smile because I am alive and each breath I take means that I can enjoy life. It is hard not knowing when your going to pass out, but now it is just part of our life and we just deal with it. I see our granddaughter every four months or so, they are out of state, Nebraska and she just says MawMaw went boom. She asks me if Iam okay and then goes on aabout her little business. She is just now three years old! I have two kids and my husband who are all so supportive and loving.
    Doctor Grubb is just wonderful! I could not say enough about this man. He is truly a godsend and joyful person. He is knowledgeable and so caring that I would wait ten hours to see him!! I was just recently hospitalized and the loving attention and how he also dealt with his residents was just great. Having him as my doctor has made the move to Ohio bearable. Not only is the weather horrible, but being sandwiched between two families has been not easy as well. Being away for over twenty-five years and not dealing with the family dramas was wonderful, but now being here with it has been not an easy task to manage. But, I have been doing it even though right now there is a rift with my brother, but all families have some kind of drama. Oh, well, I have my husband and my own joy within myself and that is what keeps me going.

    Thank you for your site and I hope you still keep good health. I am in a holding pattern with just having issues with some mini-strokes and some issues with my pots, but that is what life is all about handling those issues and being able to live ones life with joy, peace and happiness!

    Vicky

    Reply

  71. Posted by nurse with pots on August 24, 2013 at 1:34 am

    Did u or r u receiving disability? I am living n my private Hell daily fir almost 2 years. Few months bedridden here n there. Dizziness plagues me. I suffer from cervicogenic and vestibular migraines too. Limited ability to use computer and read too.

    Reply

  72. Posted by Theresa on September 7, 2013 at 5:51 pm

    Hello! I am so glad that I happened to find this site! I would just like to share my story/symptoms and ask for a little advice. First of all, I live in Michigan and I have been ill for 7 months now and have been from doctor to doctor with no luck. They always find nothing “wrong” with me. Back in February of this year I was overcome with dizziness. I went to my family doctor to which she thought it was a simple inflammation of the ear because I had a cold virus at the time. The dizziness never went away.

    March I saw a neurologist and had an MRI with normal results. Also saw an eyedoctor, to which nothing was wrong. The dizziness was still very prevalent. I also noticed at this point that I would get so overcome with fatigue, ( to the point of almost falling asleep) when I get only the slightest bit hungry. I soon found myself eating all the time. Eating every 1 or 2 hours or I would become so tired/fatigued/dizzy/irritable. I figured that I could have an endocrine problem, so I went downstate to see an Endocrinologist at the University of Michigan in Ann Arbor. I had several bloodtests and sugar tests for adrenal problems, but everything turned out okay. It wasn’t autoimmune or a hormonal problem, I got sent home. However, one of these doctors noticed that I had a high heart rate and gave me an EKG. I ended up having to wear a heart monitor for 30 days as my heart rate goes way up when I do the simplest activities. It goes up to 150 BPM after stepping out of a shower, for example. (I know 150 may not seem that high, as I know others who have 200/250). I have gained 20 lbs throughout this whole ordeal. I’m just waiting to go back to my Cardiologist for a second time. He told me the first visit that he had an idea of what it could be, that something could be affecting my nervous system.

    I think the thing that gets me down the most, aside from the 24/7/365 dizziness, is the heat intolerance. I can’t even go outside unless the temperature is around 60 degrees F or lower. And living in Michigan, our summers are around 80-90 degrees normally. I am just so sick of this, staying home all the time. I had to quit my job, and drop a class in my first semester of college. I guess I really just left this comment to vent and finally get everything out. I guess I’m just wondering as well about how to cope with this. I don’t leave my house, I can’t exercise or my heartrate skyrockets. I’m not currently on any medication though, and thankfully my bloodpressure has always been normal. I had a bad bout with anxiety back in April/May while trying to finish school I was getting panic attacks left and right.

    Thank you for this site! It’s comforting to know I’m not alone in dealing with this.

    Reply

  73. Posted by Jess on November 20, 2013 at 12:53 am

    I can’t get the Eds page about what helped this person. Is there another way to view it?

    Reply

  74. Oh my gosh! I’m so happy to find your website! I was diagnosed about a year and a half ago, given beta blockers and sent on my way. My life seems to be de-materializing out from under me. I seem to be getting weaker and weaker and am constantly fatigued. I am 56 and have what would be considered by anyone’s standards, an unbelievably high-stress life. My doctor sent me to a cardiologist who did the testing and diagnosed me. My doctor, a holistic doctor, is very frustrated because he says me symptoms won’t improve until my life simplifies. Now, the great and wonderful news that will finally be announced next week is that my life is really about to change!! I’ve been praying for three years or more that I cannot handle this life anymore and, sure enough, a big big change is about to happen which should hugely de-stress my life! Thank God!! But from now until the middle of May, things are likely going to be really hard and stressful as it involves a huge move, huge in many more ways than just distance.

    But, my health has been spiraling down badly over the last year. I feel like the dried husk of a cicada you find on a tree, sucked dry by life. I want badly to learn more and start getting healthier before the new life starts. I have started researching some and think if have this Ehlers-Daniels (?) syndrome, also. Exercising has come to a grinding halt, waking up is almost impossible and if it weren’t for this change on the horizon I would feel like I was on my last legs. I have major goals in life still, but it seems like my body undermines me constantly. I also have another chronic condition that messes my life up pretty badly and is life-threatening. I found your site looking for “dysautonomia diet” because I have noticed references to eating a high-salt diet. I thought this might explain my craving for anything very salty: chips, french fries, or edemame.

    I hadn’t realized there was a possibility of having insurance pay for physical therapy. Of course there’s the problem of getting a physical therapist who knows how to deal with dysautonomia, but I do know one who I bet would be willing to learn. That idea alone is very encouraging.

    What did you mean about moving to the northeast from Florida helped your symptoms? I, too, will be moving northeast from an incredibly hot state. I can hardly bear the heat anymore, it just wipes me out which is awful since I’m an outdoor person.

    So thank you, thank you! I’m lookingofrward to learning a lot from you.

    Lee

    Reply

    • Lee,
      I am glad your life is simplifying,
      ABSOLUTELY YES to the physical therapy. Just make sure you listen to your body even if they tell you something different, you know it best.
      Make sure they are sensitive both to the Dys AND the EDS.
      Best of luck and please share your progress with us.
      H

      Reply

  75. Posted by Kim on February 23, 2014 at 7:05 am

    Hello from Australia, I have had NCS as long as I can remember. I was tested for Epilepsy and an Insulin tumour, both were ruled out. I only got diagnosed with NCS when I thought I was having a heart attack and had an attack with a heart monitor attached in hospital. I have Spina-Bifida and constipation or a heavy meal makes me dizzy. I have found your hydration juice the best idea. Bowel control is my major problem. Kim

    Reply

  76. Posted by Bryan on March 7, 2014 at 6:12 pm

    Does anyone know of a specialist in Washington state? Or any surrounding state? I have looked at two different sources (one was DINET) and I can’t seem to find anyone. I am a 37 year old male and have recently relocated to the Northwest corner of the country.

    Any help you can provide would be wonderful.

    Bryan

    Reply

  77. Posted by sweinbe6 on March 18, 2014 at 11:34 am

    Info. Connect with others

    Reply

  78. Posted by Jeri Landrum on March 19, 2014 at 4:18 pm

    Hi my daughter who is 12 has pots. We are having such a rough time finding a doctor that understands and treats my daughter with respect along with us. We live in Iowa and would really appreciate some names of doctors in the Midwest.
    She is currently in the hospital but they are being of no help really besides saying you need to just live with it. She has been passing out and having migraines along with stomach issues.she drinks at least 90 oz up to 120oz of fluids daily , exercises and salts everything. Any help would be great. We have found if we can catch her crash before it happens fluids help her for days feel like she use too.
    Thanks!

    Reply

  79. Posted by dawn on May 23, 2014 at 2:27 pm

    Our 15yr daughter was diagnosed with dysautonomia in March. She is on medical homebound from school she started becoming ill last august and it snowballed to multiple symptoms and specialists. She can be fine one min and drop the next. We went to a neurologist yesterday we were told was an expert in this…it was the worst experience. She

    didnt take us seriously and would not
    give my daughter any hope. We are
    begging anyone to tell us if they know of
    a dr in the indiana area to help her. Two
    childrens hosptals have no one. I keep
    calling and no one . If there is anyone out there who can help please…we are begging…please
    Thank you

    Reply

  80. Posted by hisabundantgrace@juno.com on June 9, 2014 at 8:33 am

    Looking for a Doctor or a Clinical Trial for a college age studes to participate in. She is college age and has POTS. We would like to find someone in Washington state. Any referral, clinical trials or other things she would love to become part of: Please let us know if there are any specialists on the west coast and we’ll travel. Thanks so much.

    Reply

  81. Posted by Donna Lehrman on June 13, 2014 at 1:15 am

    Hi So Glad I came across your site… I feel like a now have an “instruction manual” for this condition! Can you please tell me which food allergy and food intolerance tests are the most accurate. Thanks :)

    Reply

  82. Posted by Kelsi on September 18, 2014 at 5:51 pm

    Hi I live in the mid west and was wondering any doctors you recommend?

    Thanks
    Kelsi

    Reply

    • Kelsi,

      Try the following:
      Vanderbuilt University in Nashville, TN
      Dr. Margaret Frazer of JWM Neurology in Indianapolis, IN
      Cleveland Clinic in Cleveland, OH
      Mayo Clinic in Minnesota

      Also try to reaching out to or searching for a well-renown cardiologist or neurologist at your local teaching hospital.

      Best of luck and warmest wishes,

      H

      Reply

  83. Posted by Susan on September 23, 2014 at 1:15 am

    Just found out, after 6 years of being sick, I have dysautonomia. Just read the above. All I can say is where have you been my whole illness? The thoughts written above are what I’ve been learning the hard way. Now I have good advice to turn to when I’m overwhelmed with my symptoms. Thank you.

    Reply

    • So glad to help. You’re definitely not alone, there are a lot of us that have been through this and are going through it every day. Please know that and know you can reach out anytime. That’s why I made this website 5 years ago and continue to try to bring us all together.
      Xx
      H

      Reply

  84. Posted by Delina on September 28, 2014 at 6:15 am

    Thank you for your blog. This is just one of those periodic times when I stay up late and feel sorry for myself because the dysautonomia isn’t any better. I had to sing just a few songs in chorus at a funeral today, but had to keep sitting down. It really bothered me that I’m not any better. I just read about the TVAM treatment but it sounds pretty scary. After my diagnosis several years ago my policy with Dr’s is to avoid them whenever possible. Then I get frustrated that no one is helping me get better! Thanks for the forum to vent to others who know what it’s like to deal with this every day.
    Delina

    Reply

    • You’re definitely not alone in that feeling.
      Times like that are more mentally hard in my opinion — just because your emotional state gets so low when your symptoms brutally remind you that they can be in control.
      Please hang in there, we’re all these with you.
      Xx
      H

      Reply

  85. Posted by TonyL1 on November 15, 2014 at 9:26 pm

    Hey all, been reading about this dysautonomia for a couple of days now, and it’s got me curious to if I may have it. I’m Male 47 years old, who has suffered weakspells, fatigue, stress etc as well as anxiety / gad / and agoraphobia, I only go out with a
    Safe person, and ha rarely ventured out alone, maybe 20 times in 30 years.
    I do not, nor have I ever worked a job, I live with my low income father in Ottawa
    Ontario Canada, and I reside on medical welfare, called ODSP, I have a psychiatrist
    Same one for 16 years, and I’ve done long runs of many meds with no help.. I have symptom attacks frequently, and also have cold hands, chest pains, over active bladder
    Which is about 6 months now , ( I get up 4-6 times a night) feel as I age I’m getting worse, I just don’t know anymore? And I’ve seen my psychiatrist maybe 150 times now…so yeah I want to fix these issues, but, I keep being told its anxiety etc.. When to me, I’ve always felt its been physically Caused ,regular blood work comes out fine
    Which confuses me further into thinking , I know I have something wrong and have
    For years ..
    Tony!!

    Reply

    • Tony,
      I would seek more testing than just blood work. You need full workups by cardiology and neurology to help narrow down the cause of your symptoms. Get back to us with the results of these consults and testing. Hang in there!!
      H

      Reply

  86. Posted by Amy South on November 17, 2014 at 5:10 pm

    I have autonomic dysfunction and need to find a Dr who specializes in this. I live in new albany Indiana. If you can help me at all that would be greatly appreciated.
    Amy South

    Reply

    • Hi Amy,
      If you can drive up to Indianapolis and see Dr. Margaret Frazer of JWM Neurology, she will be able to help you so much. You could also drive a little farther and go south to Nashville, TN, where Vanderbuilt University has a department devoted to the research of autonomic disorders including POTS. Let us all know your experiences.
      Warmest Wishes,
      H

      Reply

  87. Posted by Anna Martens on December 9, 2014 at 3:48 am

    Thank you so much for the information. It really helps to get some answers and know that I’m not alone. Do you have any resources for pregnancy and POTS? I havnt been able to find much on the internet. Thanks, Anna

    Reply

    • Anna,
      Please read my post on my home page about pregnancy and POTS. I have a first-hand account that might shed some light on what helps, and what doesn’t. However over the years as I have read a bunch of articles, case studies, and seen several experiences I have to say that honestly everyone is a little different and it’s very much trial-and-error to figure out your case specifically. The biggest thing is that you dehydrate much quicker and easier so PLEASE keep up with fluids. I can’t stress this enough. And don’t underestimate any new symptoms. Stay in close contact with your doctors, seek cardiology consult along with your OBGYN, and make sure they are monitoring you closely and consistently.
      Best of luck and warmest wishes.
      Most importantly, Congratulations!
      H

      Reply

  88. Posted by Sharlene Smith on January 17, 2015 at 2:31 pm

    Thanks you so much for such encouraging article, I was diagnosed in October , as a patient care provider I never thought that such illness would be my journey 32. It’s has been quite rough ,but I keep pushing and I will not let Pots stop me. Love you guys I hope to get some contact.

    Reply

    • We all love you too and are here to support you. We are in this together and together we are stronger. I am so glad you are fighting and it sounds like your mind is determined to OVERCOME. That’s half the battle. Please don’t give up, it DOES get better this I promise you.

      Reply

  89. Posted by Julie hoyt on January 28, 2015 at 10:55 pm

    My 14 year old has dysautonomia and pots, I would like to ask you some questions. Please reach out via email and I will send my phone number

    Reply

  90. Posted by EG Cameron on February 10, 2015 at 6:29 pm

    I am so relieved to find your blog, Hillary. I live in Nashville and was diagnosed with Dys (POTS) and mitral valve prolapse (with regurg) in 2005 when I was 24. I have had 2 major relapses since and am currently experiencing one now, after about 4 years of no episodes. I recently experienced a miscarriage and I think that triggered it. I had forgotten how scary the episodes are and how hopeless I feel. I am about a week in now and finding your blog is really helping me cope right now. I don’t take any medication except the occasional low dose of xanax during an episode just to relieve the anxiety symptoms. This really does help. In the past, my doctor has prescribed every medicine you can imagine – from midodrine to florinef to anti-depressants to beta blockers. For me, being on medication didn’t benefit me enough to continue with side effects. I am currently researching magnesium supplements and other herbal remedies. I have seen just about every kind of doctor you can imagine. I have been to the Autonomic Clinic at Vanderbilt in Nashville. I have seen Dr. Janice Gilden in Chicago. I have a cardiologist I see regularly. I have been to so many ERs, I can’t even count. Not once has anyone ever told me that this is life-threatening. It is manageable, there is still just so much they don’t know about Dysautonomia. During these episodes all I can do is just rest and try and drink and eat as much as possible and as healthily as possible. I am now 34 and own my own business and am trying to finish a degree. You are so right, Hillary, when you say that sometimes you just have to stop despite what the consequences may be. This is your body and you know it best. No one else has to live with this. I have an extremely supportive family and friends. Here are some things that I have found that help:

    1. Find ways to take your mind off of your uncomfortableness. The anxiety can definitely feed into the episodes, make them worse and last longer. Try and stop the cycle. If you need help from an anti-anxiety med, that is okay. Talk to your doctor.

    2. Try to get out of the house and not lay around constantly. I know this is so hard, but you don’t want to decondition yourself. That makes it harder on your autonomic system when you do become active. Just simply try and start by walking around your house, getting the mail, taking a walk in the yard.

    3. Fluids, Fluids, Fluids! no sugar!

    4. Talk about how you are feeling. Don’t hold these feelings in. It is horribly frustrating and sad and lonely. Talking and even having a good cry can help relieve those feelings.

    I promise that this will get better. Living with a chronic illness means having relapses. But each time it happens you will learn more about it and yourself and how to manage this condition better. Your body will recover. Sometimes, it might take a little longer than you want. Our bodies are machines. They want to recover, you have to believe that. I know it feels like your body is betraying you. Just know that it will pass, eventually, and you will feel back to normal once again.

    Thank you to everyone that has posted on this blog. It has really helped me today. Be good to yourselves and I wish you all love and support through this.

    Reply

    • EG Cameron,
      Thank you so much for sharing your heart and experiences here on the site. THAT is what this is all about and why I do what I do on here. I am sorry about your current relapse but SO EXCITED that you had none for four years! That’s fantastic. I definitely would agree that a miscarriage could trigger something like this. Any similar situation in my life related to pregnancy hormones or female issues has always exacerbated my symptoms. Hang in there and know that you WILL get through this, as you always have, and you will come out stronger than before. Thank you mostly for sharing your advice on my site. This is what we need more of — to help eachother and share best practices.

      Again, thank you for sharing your wisdom and being a beautiful solider on this journey with all the rest of us.

      Warmest Wishes & Gentlest Hugs,

      H

      Reply

  91. Posted by Morgan on February 14, 2015 at 1:07 am

    It’s so weird to see so many people dealing with this. I never even heard of this until last year when my doctor diagnosed me. It explained so so much, but to be honest it felt like he was just making something up to make me feel better. I kinda ignored it for a bit, but my aunt was going through the same thing and thank the Lord got me to do what i needed. The smallest amount of extra salt or energy drink revived me so much even when I didn’t realize I was feeling so bad. Everything in this post explains so much I started crying a bit. I’m so scared I’m going to be thought of as slow or childish for needing help. I can’t drive without having a panick attack. I don’t know how I’m going to be a mom with this, but this post gave me so much hope. Thank you so much!!

    Reply

  92. Posted by sylvia keenan on February 17, 2015 at 8:49 am

    Thank you for the informatio. This gives me reason to keep trying! Everything you mention is so true, the lack of one’ family support is the worst. I don’t know if they don’t believe it or just want to ignore it to pretend everything is the same as before?

    Reply

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