Dsyautonomia...does anyone have this

Discussion in 'Fibromyalgia Main Forum' started by Sheila1366, Jul 3, 2007.

  1. Sheila1366

    Sheila1366 New Member

    I have been diagnosed with dsyautonomia.FM/CFS are a couple of the symptoms that go along with this diagnoses.

    Dsyautonomia affects the auto nomic system of your body.Blood pools in the feet and that causes stress on the body like your heart,brain,kidneys etc.It is treatable but very disabling much like fm/cfs.I have vasovagel,orthostatic hypotension,rapid heart rate,constant change in blood pressure and heart rate,severe pain and fatigue,brain fog,fm/cfs,confusion,memory problems,balance problems,troubl breathing,chest pain(heart is fine),raynaud's syndrome,body very sensitive to temp.....

    You might want to look up dysatuonomia.It is not very well known but it sounds like some of us that also have fm/cfs.

    Sheila
  2. greercl1982

    greercl1982 New Member

    Yes, I exprience the exact same symptoms. I have been diagnosed with Pots(postural orthostatic tachcardia syndrome)which is tachycardia upon standing and i have the same symptoms, the brain fog is the most dibilitating for me. I think that it just goes along with alot of th sufferers of cfs,

    Chris
  3. nightngale

    nightngale New Member

    Will post more later going to bed!
  4. nightngale

    nightngale New Member

  5. dshor

    dshor New Member

    hi sheila,

    I saw in your bio that you live NC...FYI, there is a world class center for research and treatment for autonomic nervous system imbalances not far from you at Vanderbilt in Tennessee. Just Google Vanderbilt and Dysautonomia. Dysautonomia is also a common symptom of CFIDS, but can also be a symptom of more serious complications like adrenal tumors/pheochromocytoma. It is important to rule these out. I am not a patient at Vanderbilt, but I too have dysautonomia and went through much testing to rule out the above.
  6. Sheila1366

    Sheila1366 New Member

    What kind of testing did you have to go through?
  7. dshor

    dshor New Member

    Hi Sheila,

    Epinephrine/catecholomine testing via blood and urine...if necessary, doctor might ask for a catscan of adrenals. You should speak to your doctor, if he/she thinks there might be another cause of your dysautonomia. An Endocrinoligist would be familiar with these tests, as well as your general doctor.
  8. dshor

    dshor New Member

    hi,

    Is tachycardia a big part of your dysautonomia?
  9. frankie78

    frankie78 New Member

    After not being able to sit up or stand for months (since my last relapse in January) I finally finished all my tests. I had an echocradiagram in April and a TTT yesterday. They said I passed out more quickly than any other patient they've ever tested!! (It felt nice to succeed at something again, even if it was only ironically.)

    They told me I had Postural Intolerance, and they are going to research more with the results of my tests to find a direct cause. Th Dr. said he thought it might be caused by EBV.

    They put me on Florinef to start, .2mg a day.

    I had assumed I had POTS but they didn't diagnose me with it. When I stand up my heart rate skyrockets, my blood pressure all but diappears. I have all the symptoms listed in the original post. I also have mild seizures upon standing where I tend to fall down, but I am on tegretol for them, and they are pretty much under control.

    What other types on medications are you all on?

    Frankie
  10. suz9601

    suz9601 Member

    I have dysautonomia and POTS that goes w/it. I take a beta blocker because w/o it my heart rate goes up to 195bpm for no reason. My bp drops upon standing and I almost pass out, never have fully, but have lost balance and got tunnel vision. These are awful symptoms and the worse of all the CFS mess in my opinion. My heart is also irregular and I have PVC's all day and night. Anyway, hope you get some help soon, I can't seem to find anyone that knows much about this and waht caused it, It just started one day out of the blue for me..My legs turn purple if I just stand still too from the blood pooling in them.
  11. oholland

    oholland New Member

    My 38 year old Son has had Dysautonomia for the last three years. He has both the general version and POTS (with CFS). I have FMS/CFS so have had some understanding of what he's going through.

    He's been fortunate to have a specialist who treats him in McKinney, Texas. It's not so easy finding POTS specialists so we were very lucky to find one in our state.

    He can't drive, due to the possibility of blacking out and has all of the Dsyautonomia/POTS symptoms. He lives with us now and can't be left alone. He is on a beta blocker, a calcium blocker, two other heart medications, etc. (over 20 meds in all)plus lots of salt tablets. His heart rate has gone up to over 160 when having an episode. We never know what is going to happen to him. Once we have one symptom under control the Dysautonomia shows up somewhere else.

    A tilt-table test will diagnoise. We were told it's common for a POTS patient to have CFS. The doctor thinks his was proably caused by having a bone-marrow transplant as a teenager or resulted from a heart anuresium (sp?) when in his late twenties. His doctor has also just done a hair analysis to test for heavy metals as he has had a doctor patient actually be cured from POTS with a detox of her heavy metal diagnoises.

    We're waiting to find out if he shows any signs of this.

    In his case it is far worse than my Fibro/CFS because he can't be alone at all and blacks out often. Otherwise we both suffer from PAIN and FATIGUE to the utmost degree.

    Olivia
    <br>[<i>This Message was Edited on 07/07/2007</i>]
  12. Sheila1366

    Sheila1366 New Member

    I wonder is dysautonomia is very rare.

    I have had a TTT.Fainted within 5 minutes of being upright.Not sure what that means.

    Any one have any suggestions on maintianing a healthy diet.I know if I eat a normal size meal I end up in a lot of pain and I becoem tired and lightheaded.

    Sheila
  13. TerryS

    TerryS Member

    I have it. Was diagnosed with mitral valve prolapse and dysautonomia at the Mitral Valve Prolapse Center in Birmingham last year.

    Funny that the list of symptoms are pretty much identical.

    The diagnosis of MVP was just the beginning of a very long, strange year...

    TerryS
  14. dshor

    dshor New Member

    I've been told my POTS is the hyperadrenergic kind, hence the pheo testing...prior catecholomine levels were very high. I also have almost a constant tachycardia (IST) and treat with low-dose beta blocker...which can help block the excess flow of adreneline. I also have been diagnosed with MVP (trace regurg.) I believe they (POTS, IST, MVP, OI, Dysautonomia) are all related to my CFIDS. I try not to get alarmed by the various diagnosis' as they are all interelated and most often symptomatically overlap with one another. Prior to suddenly becoming ill (over 5 years ago--came on like suddenly like a flu), I was the picture of health, a runner with no cardiac issues. I didn't even have a regular GP, as I was never ill and never went to the doctor.
  15. Hope4Sofia

    Hope4Sofia New Member

    I have dysautonomia. I have POTS,OI,MVP all of the above. My neuro says dysautonomia affects every autonomic system including: GI, BP, Reproductive (I also have PCOS), Skin....

    I had a TTT and ECG which helped confirm.

    They believe I have Lyme. Have you tested for that? The tests are highly enreliable anyway, so don't know if it would help. I think I'm going to try natural treatment before attempting months of antibiotics.

    Blessings,

    Sofi
  16. TaniaF

    TaniaF Member

    I have MVP (regurge), tachycardia, palpitations, dizziness, and all the other symptoms of a dysfunctional autonomic nervous system. However, I really don't have low blood pressure--it fluctuates but sometimes stays on the higher side.

    Does everyone with Dysautonomia have low blood pressure?

    T
  17. Sheila1366

    Sheila1366 New Member

    From what I have read not everyone has low bp.Low bp is common with POTS Syndrome which is 1 of the disorders that cause dysautonomia.
    I started out with low bp now I am mildly high at times but low at times too.
  18. djcollett854

    djcollett854 New Member

    Yes, I have just been diagnosed with this recently. I have had many years of very disabling symptons always told it was related to stress and anxiety. Some days I can feel just fine, other days not good at all. Fatigue, migraines, confusion, memory problems, balance, low blood pressure, vision problems, vasovagel. After a total cardio work up I was told my heart was fine. One last test to be done, a tilt test. This is the test that finally showed my problem. My sinus node is not fuctioning correctly. If you have not had a tilt test - you should. I am scheduled for a pacemaker next week. This should help with my passing out and hopefully my mirgraines.&lt;BR&gt;
    I will also mention that I also have a thryoid disorder - Hashomoto - which is also an autonamuni disorder.