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.

117 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!!!!

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  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.

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  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

  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

  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

  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 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

  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

  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

  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

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