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email: alwayshopefulh@gmail.com

29 responses to this post.

  1. Posted by kelly on May 12, 2010 at 4:20 pm

    Please email me and I will send you me and my girls story and how I may have beat this thing with the right meds. We are being studied by the researchers. It is a 4 page story. Kelly Pres Dys Of Florida

    Reply

    • Posted by tanya on June 2, 2010 at 7:34 am

      please send me your story. do you also have more problems in the evening and do you have trouble sleeping

      Reply

    • Posted by Kirsten on January 31, 2012 at 8:44 pm

      Please send it to me also. Thanks!
      kirsten.blum@prodigy.net

      Also, do any of you feel very bad when you’re sitting or laying down. I have pain in my legs and feet, nausea, muscle spasm, and a general ill feeling when I’m laying down or sitting. Which means that there is NEVER a time when I feel okay.
      This started after I had my daughter, 7 months ago. I’ve been seriously ill and finally went to Cleveland Clinic and got a preliminary diagnosis of dysautonomia, possibly POTS. My tilt test came back as slightly abnormal, but didn’t show a 30+ increase in pulse. My QSART was also slightly abnormal; all was normal except my leg. I’m going back for more testing this Friday. So, I’m not understanding why I feel to awful when the testing isn’t showing significant abnormality.
      I’m having a very difficult time coping with this. I have a six year old son in addition to my 7 month old daughter. I can’t take care of either of my children and feel so ill all of the time that I can barely function.

      Any advice, comforting thoughts, stories of recovery, etc. would greatly help right now. I don’t know how I can bare to live like this for a minimum of several more years, if not forever.

      Reply

    • Posted by Kirsten Blum on January 31, 2012 at 11:13 pm

      Hi Kelly,
      Please send that info. to me.
      Thank you!
      Kirsten

      Reply

    • Posted by Kelley on February 22, 2012 at 1:55 am

      Hi I would love to have any information you have on the study.
      Thanks Kelley

      Reply

  2. kelly my email is hopefulhillary@gmail.com please send me your story thank you!!!! 🙂 🙂

    Reply

  3. tanya, at first I was worse in the evening, and struggled with insomnia very much. now, I feel better in the evenings and sleep great. I have a post about insomnia, you might find it helpful!!! hoping you feel better very soon!

    Reply

  4. Posted by marcie on March 22, 2011 at 4:58 pm

    my son has POTS. I know girls get it more then boys, He is 16 now. diagnost at age 15. can not play any sports, sleeps all the time. He is on Atenolol and Fludrocortisone. He is having a hard time ajusting and these is not any support group in Westchester ny. if anyone knows of any, please let me know

    Reply

  5. Posted by Amy Rook on August 10, 2011 at 9:24 pm

    hello. my name is amy and i have been diagnosed with neurocardiogenic syncope,sleep disorder, chronic malaise and fatigue, vitamin d, folic acid, and vitamin B6 dificiencies, GERD, hypertension,restless leg syndrome, IBS, anxiety, panic attacks,light strokes and prior seizures, and glaucoma. i cannot tolerate heat, extreme cold, flashing or bright lights, or standing up quickly. i am 38 and have been fighting this for over 10 years. I havent been able to hold a full time job since 2006, or a part time since 2008. I cant afford more doctors, and am rather tired of being told that my tests are ok, so im apparently fine. I have found your information intresting, and am trying your advice. thank you for putting this information up.

    Reply

    • Hi Amy! So sorry to hear of your struggle with this complex disease. You sure are a fighter. Has any of my information been particularly helpful? I know it gets frustrating when you’re told the same things over and over by doctors, yet their recommendations don’t improve you. Most of the time, we end up being our best advocate and learn what helps each one of us on our own trial and error basis. I hope things start looking up for you soon.
      All the best,
      H

      Reply

  6. I now believe that dysautonomia IS curable for some people..perhaps the subset who have had traumatic brain injury is one potential population. If one population CAN be cured, then there is reason to hope that others can also hope for a cure. Sending you gentle hugs always and forever.

    Reply

  7. Posted by Desiree Zortorres on January 31, 2012 at 11:23 pm

    I just had a baby boy a month and three weeks ago and i too suffer from this illness. Im scared cause i need to be well to take care of my son…. im sleepy on the meds and sick off of them, can someone give me some advise please
    ;….(

    Reply

  8. Posted by Kirsten Blum on February 7, 2012 at 3:43 pm

    Hello Desiree,
    Were you ill before having your son? I had my little girl (second child) 7 months ago. I’ve been severely ill since. I was just diagnosed with dysautonomia and have more testing soon. I’d love to talk if you want to. It’s very scary and tough! I have had to hire a sitter to help take care of my children. Feel free to e-mail me. kirsten.blum@prodigy.net

    Reply

  9. Posted by Me on August 7, 2012 at 6:13 pm

    I currently have multiple dx and the last time I was at the hospital one of the doctors suggested this may be the problem. Can you recommend a specialist?

    Im working with my neurologist right now. But Im not sure that will go anywhere.

    Reply

  10. Posted by Tia is Healed on August 31, 2012 at 10:22 pm

    Hello, I was just diagnosed with P.O.T.S/ Dysautonomia by Johns Hopkins Hospital in Baltimore, MD. They did alot of testing, but the tilt table test was the sure answer to all of my problems. I had racing heart, shortness of breath, excercise intolerant, couldnt walk very long, couldnt do stairs, dizzy, couldn’t sing anymore and sometimes talk without being short of breath, allergies, blood pressure inbalances, anxiety, panic, near fainting, heat intolerance, blurred vision, stomach discomfort, overactive bladder and I couldn’t stand without losing balance. I have had many doctors dismiss my complaints and say it was just anxiety. I have had to fight for my health and decided to travel to the best if need be. To my understanding Dysautonomia usually has an underlying cause or reason for happening so when you can eliminate the root the symptoms may generally get better, but not always. There is a long list of could be’s such as anemia, adrenal problems, to serious immune problems or stress. Sometimes they can’t find a cause. I’ve had mixed reviews. Some doctors to say this is a lifetime disease because the Autonomic Nervous System can’t repair itself and some to say it can who believe more so in the spiritual and holistic way of healing. I have had many factors in my life such as mold exposure, extreme stress, vitamin deficiancies, fibromyalgia and thyroid disease which are all on the list of possible reasons Dysautonomia shows iteself. None-the-less, I am keeping the faith that God can do all things. Christ already died for this terrible disease on the cross and I don’t choose to lay down and let it take me over. I do what the specialist tell me and what has helped while I wait for my physical body to line up with the spiritual truth. I excercise lightly(only what my body can accept), ankle weights, walk short distances, rest alot, go to sleep at same times each night, increase salt, plenty of water, make sure no vitamin deficiencies, eat well in smaller portions and I have found that the medicine, Fludrocort has helped greatly. Since starting this medicine I haven’t really felt faint or dizzy and can walk up a flight of stairs or walk my children to the bus stop. In the past, I would just lay down flat and put my feet straight up in the air to stop the fainting episode. I have my up and down days, but we have to try to stay positive and be around positive people who have compassion and understanding. STAY AWAY FROM TOXIC RELATONSHIPS AND NEGATIVE PEOPLE IF POSSIBLE. The church and my famly have been a great support. We are spiritual beings and need to meditate and find time for ourselves to visualize our healing. It is a process but nothing is to impossible for our God. I am trusting him for all of you and myself. I think this site is greatly informative and it has been a blessing. My prayers are with all of you.

    Reply

  11. Posted by Kirsten Blum on November 12, 2012 at 1:15 am

    Hi Everyone, I finally know why I’m so sick and what’s causing the POTS/Dysautonomia. I have Lyme Disease. I have probably had it for many years and the immune system is suppressed during pregnancy, which allowed the Lyme to become active. I was diagnosed 3 months ago and have started abx. treatment. For any of you that have been diagnosed w/ Chronic Fatigue or Fibromyalgia, I would highly recommend finding a LLMD (Lyme Literate MD) and getting tested for Lyme. I had many symptoms that did not fit a post-pregnancy POTS diagnosis, such as muscle and joint pain, vision changes, muscle twitching and so I continued to search for answers as I became sicker and sicker and my Drs. were not finding anything other than POTS. I asked MANY Drs. about Lyme and all were dismissive. One did test, but order the ELISA, a very inaccurate test that typically gives a false negative. Anyway, Ijust wanted to provide that information. Best wishes to all of you :o)!

    Reply

  12. Kristen,
    My most excited congrats to you for finding your cause (and being assertive and educating yourself enough to do so!) and for starting treatment (which I know is rough for Lyme) and heading on your way to a better life of RECOVERY! Thank you for sharing. Lyme disease is one of the causes of POTS but will go undianosed without seeing an LLMD and getting specific testing. I will be writing a post about this specific cause shortly as to raise more awareness since this is one of the causes that can be treated and potentionally lead a patient into remission of POTS/Dys. Wonderful news for you!!
    Best of luck,
    H

    Reply

  13. I really love the layout of your blog, and how you flow with your words. Very eloquent. I will definitely keep updated on your blog posts. Take care and have a pain free Blessed Day. Hugs.

    Reply

  14. Posted by Jess on November 20, 2013 at 1:24 am

    Hi, do you know of any meds that help with headaches? Also I can’t get on the EDS page that you suggested reading.

    Reply

  15. Posted by Kate on July 8, 2014 at 5:18 pm

    Is there a way to subscribe to this? I’m on mobile, I’ll get cramps writing out all my symptoms …..

    Reply

  16. Posted by Beth Andrews on December 15, 2014 at 6:47 pm

    Anybody hear know anything about “chronic ptsosis”
    My daughter has Mito, EDS, POTS, chronic Lyme

    Reply

    • Beth,
      Yes I know of this condition. It has many causes however if you daughter was Dx’ed with EDS this could potentially be causing the ptosis because of the connective tissue disorder.
      H

      Reply

  17. Posted by kaydee on January 5, 2015 at 5:29 pm

    Hi I’m wondering if you Hillary, and any of you ladies in the comments section have had a child AFTER being diagnosed with pregnancy-induced POTS? I’m not finding in the studies that they make the distinction between pregnancy with women with POTS of different origins. I have heard from a dysautonomia forum that women whose POTS was pregnancy-induced should be very cautious about attempting another pregnancy.

    Reply

    • Kaydee,

      That is a GREAT question but absolutely relative. I do not know of any cases personally or off the top of my head, but I am sure they are out there. Let me do some digging and get back to you. Also, if you find out anything PLEASE let me know. Thanks!

      H

      Reply

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