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treatment for dysautonomia

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by uni, Mar 23, 2012.

  1. uni

    uni

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    What are some treatment choices for dysautonomia? This, along with HPA dysfunction and immune dysregulation, seems to be central features in many patients with CFS.

    I use to have orthostatic intolerance, but that has pretty much gone with daily hydrocortisone usage. I do, however, still have many lingering symptoms of what seems like a dysfunctional autonomic nervous system. I have poor regulation of body temperature and feel hot when others feel fine or cold. I also have poor regulation of blood glucose (regardless of HC supplementation). In the past, when I experienced feelings of low blood sugars, my body would respond by raising it and I would feel fine. Now, however, it's like the body is unable to raise the blood sugar properly (at least until a point until my body feels good), and I have to eat carbs in order to reduce symptoms of neuroglycopenia.

    A search on the internet revealed that there are many causes of dysautonomia. But it seems extremely hard to pinpoint what might exactly be the cause. I have an ANA titer of 1:40(+), perhaps this is meaningful but most doctors don't see that as something to treat.

    Thanks
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    It depends on the cause of Dysautonomia. My cause is Autonomic Neuropathy. (POTS) The nerves are affected so in my case I am healing the nerves.

    Finding the cause is always helpful then you can treat. Lupus and many other illnesses can cause or trigger it.
     
  3. ramakentesh

    ramakentesh Senior Member

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    Potential causes of POTS alone:

    Autoimmune mediated destruction or blocking of a3 ganglionic nicotinic receptors (1 study)
    Neuropathic POTS (either idiopathic, secondary or autoimmune) (2 studies)
    Angiotensin II mediated hypovolumia and upregulation of NE through low nNOS (7 studies)
    Genetic or acquired norepinephrine transporter deficiency (3 studies - still considered speculative)
    Activation of nitric oxide vasodilation (eNOS or nNOS) specific to the stomach (2 studies)
    Activation of hydrogen sulfide vasodilation in POTS (1 study)
    Abnormal vasodilatory response of Beta 2 adrenoreceptor (1 study)
    Autoimmune mediated activation of beta 1 receptors (study pending)
    POTS as a sign of postural vagal withdrawal (studies pending)
    POTS hemodynamics as a result of cardiac deconditioning (2 studies)

    Note that all these suggested etiologies (and many are not universally excepted) are all peripheral causes. Many of the symptoms of POTS and related dysautonomias are CNS - suggesting that perhaps in some or even most cases, the condition could either have CNS consequences or perhaps even a primary CNS source.

    In POTS there is loss of cerebral autoregulation through reductions in thoratic blood return.

    Many POTs patients also exhibit signs of chronic innate immune system activation - through chronic activation of TFN alpha and perhaps other cytokines.

    Finally sensitisation of the sympathetic and beta receptor system could expose POTS patients to the effects of minute changes in sympathetic activity such as through normal blood sugar fluctuations.
     
    ahimsa likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    sorry Im going to say what the others said. You need to have some idea on what is wrong to be able to treat it. What anyone suggests for dysautonomia, may be completely irrelevant to the kind you have.


    Some forms have even been successfully treated by surgery.. where as something like POTS (which is a form of dysautonomia) may be treated with high salt, high hydration levels and support stockings.
     
  5. Ocean

    Ocean Senior Member

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    Sally, what was the method through which you were diagnosed with Autonomic Neuropathy?
     
  6. uni

    uni

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    Unfortunately I am not sure what is causing my dysautonomia. I feel like the cause of that is also the underlying cause for my chronic fatigue/exercise intolerance symptoms.
     
  7. fawkes

    fawkes Yesterday's gone.

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    This, to my mind, is a brilliant analysis and a map of where research and development of diagnostic tests should go - thank you!
     
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Ocean, it was a test where I blew into something. Heart/lung test. They could tell with that test and what the heart was doing. I forget the name. I was SOOOOOO TERRIBLY ILL!!! I just tried to do everything the best I could. Unable to walk at all. In a wheelchair.

    I told them I would not take a Tilt Table test. That was impossible. We did a lot of Poor Man Tilt testing. I can't remember what else. They were wonderful since I was much to ill to go to a neuro for the TTT. I have heard one doctor say he doesn't even give them they are so hard for people with Dysautonomia.
     
  9. ramakentesh

    ramakentesh Senior Member

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    Since there is no established consensus of the cause of most forms of Dysautonomia all treatments are based on theoretical symptom reduction rather than tackling the primary etiology other than perhaps florinef in idiopathic hypovolumia or Losartan in Angiotensin II mediated Low Flow POTS. NCS appears to now be the best understood.

    Neuropathy is tested usually by QSART assuming the acetylcholine receptors in the sympathetic system are comprimised. Autoimmune gangliopathy can be tested for via serum antibody essay at Mayo.
     
  10. Ocean

    Ocean Senior Member

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    Thanks Sally. I keep hearing that from people, getting scared about scheduling my test but I'd really like a firm diagnosis.
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    If you are well enough that is fine. I was much too ill. Good luck!
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I also found the TTT to be extremely hard on the body, though it did give a lot of information and a positive diagnosis. I'd say, if you are going to consider it, question the doctor about exactly what will be done in the test to make sure it is done properly to assess autonomic dysfunction. A lot of the TTT's done by cardiologists are not done properly to test for dysautonomia. All TTT's are not equal!

    Also, you would want to have a clear understanding about how far they would take the testing. For instance, I was tested by an autonomic specialist and he did not want us to faint--he said to stop the test any time we really felt too bad. For me, that was after about an hour of testing when my pulse pressure got down to 8!

    By then there was plenty of data for a positive diagnosis...but it did take considerable time to recover from the test.

    Best wishes,
    Sushi
     
    ahimsa likes this.
  13. Ocean

    Ocean Senior Member

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    Thanks Sally. I'm not that well, so I don't know. I'm still leaning toward doing it but leaving a very long window of time to rest afterward. I'll take Sushi's advice and check with them about at what point they'd stop the test, so I have a better idea how far they'll take it if I'm feeling unwell.

    Thanks Sushi. I don't think I know enough about it to be able to evaluate if what they tell me will be adequate for the testing or not. I know the test will be long, 45 mins. for part 1 and that they will give nitroglycerin if part 2 is needed. And will test hr and bp. At least that was my understanding. Is there more I should be looking for.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, they should do other autonomic tests during the TTT. I don't remember them all but as Sally mentioned, one was blowing into something, then there was one where I had to grip something, one where I had to read into a recorder while hearing distracting background noise (all the time your BP and electocardiogram are running), and there were some elements that I don't remember.

    You might find a good description of what should be done on potsplace.com. It is very important to have the continuous electrocardiogram. I was not given any drugs as my doctor wanted to see how I responded in my "natural" state. Also, you should be fasting without food or water for about 6 hours.

    And again, I have to say it was extemely hard on the body to be stressed so much. I really felt very ill when I asked to be taken down.

    Can you talk to the doctor to ask him what he would be looking for in the autonomic system?

    Best wishes,
    Sushi
     
  15. Ocean

    Ocean Senior Member

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    Thanks Sushi. At that site under "detection" they describe the TTT as same as was described to me, monitoring bp and heart in laying and tilt positions. 40 minutes and then medicine may be given in second part of test.

    Are the other tests you and Sally refer to actually done while you are on the TT? I thought they were just additional dysautonomia tests that could be done separately? What is the purpose of the other tests, what do they test/determine that TTT alone doesn't?

    From what I've researched it seems these tests other than TTT aren't done at many places? Did you (and Sally too, if you are reading) get them done where you lived or travel for them? I saw places like Vanderbilt, Mayo, etc that may do more tests beyond the basic TTT but it doesn't seem to be that common.

    As far as my test, my understanding is they are looking for changes in bp and heart rate from laying down poistion to upright position. Isn't that the standard for TTT to diagnose POTS, NMH, etc.?
     
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  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Ocean, I was too ill for the TTT. I took all tests in the office. My integrative MD's are in a small town. There are integrative doctors here too , but I have not used them.
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The other autonomic tests were done during the TTT but I was not tilted at the time. But the electocardiogram and BP tests were going continuously.

    I didn't have to travel just because I was lucky enough to have an autonomic specialist where I lived. It isn't so much the medical center as the doctor who prescribes and designs the test. The medical center just carries out his/her instructions.

    My doctor became an autonomic specialist because he himself had POTS and had to go on disability. Then he went back to medical school and specialized in the autonomic nervous system. He didn't want to give drugs during the test as he didn't want to stress you more. He had endured many TTT's himself and knew how hard they were. That was also why he didn't want to you faint if it could be prevented. He knew he could get enough data by taking you to a point before fainting.

    Best wishes,
    Sushi
     
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  18. Ocean

    Ocean Senior Member

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    Thanks Sushi. That clarifies it. For now I'll do the TTT, that will give me more info than not doing it. Then I can ask my doctor about the other tests and research it more if he's not familiar with it.
     
  19. ramakentesh

    ramakentesh Senior Member

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    Probably the most effective treatments are exercise.
     

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