davecom

Sue - I've gone down the exact same line of thinking that you express in this thread... yet I believe the other posters are right - it's all about insurance company justification. If the treatments didn't cost thousands of dollars (IVIG for example) then I'm sure given the knowledge we have of the nerve damage in POTS being autoimmune in nature more of us would be put on immune modulating therapies by our doctors. That's life unfortunately - money and luck of the draw. I had moments where I wished some of my autoimmune marker tests had come back positive because then I could justify some treatment... on the other hand the fact that nothing comes back positive also makes me think that perhaps what happened to me was a freak one time event (some bizarre reaction to a virus), I don't have an ongoing autoimmune disease, and this destruction won't happen again. Wishful thinking - but at least it's positive thinking.

Honestly, skimming the page it looks like another person trying to push something on sick people that don't understand their own condition (not saying that's you). What bugs me is that it's well understood in 2013 that more than 50% of POTS cases are caused by destruction, yes destruction of autonomic nerves. Anything that doesn't actually work towards healing those nerves is not going to be curative. In most people that will get better, that will simply be time. What I'm saying is that for most people with POTS it's not that the nervous system is "out of balance" - it's that you have actual nerve damage. So, you can try as much as you want to put it back 'in balance', and it may help as a coping mechanism - certainly building stronger muscles and decreasing your digestive system's load will help ease the symptoms - but will not cure the underlying nervous system disease that is actually causing the POTS.

I don't know if you can afford it or where you live, but have you considered trying to take him to Mayo Clinic or Cleveland Clinic? The doctors in your area have frankly had quite a bit of time to figure out the case, and given the severity of the situation perhaps they are out of their depths? Not trying to be negative, but I just hate to think of your son suffering the way he is when the doctors around him don't seem to have been particularly helpful.

I've certainly read about Mestinon helping a lot of people with POTS. That said, there are certainly risks. Anecdotally, my autonomic neurologist does not want to prescribe it because he has seen it cause some arrhythmias in past patients. Further, it has been implicated as a possible cause of Gulf War Syndrome. It was given to soldiers to protect them from chemical attacks during the Gulf War and some researchers believe it caused them to develop a debilitating disease known as Gulf War Syndrome.

I'm so frustrated for you, Rachel. Does your son's heart rate still increase the requisite 30 bpm when he stands? If it does, how can she say he doesn't have POTS? Of course he has more than POTS, but it certainly based on everything else seems like part of the picture. Of course it's just a symptom of an underlying disease.

Yes, this is a big problem for me. The only thing that seems to help is to avoid carbohydrates and eat smaller meals.

Hi Rosey, A lot of people follow the Levine protocol. A lot of the study's claims are quite controversial - but its basic exercise protocol is just common sense. It basically calls for starting out with recumbent exercise, specifically recumbent exercise biking and/or a rowing machine + some light weight lifting and eventually moving on to upright exercise. There are a lot of good threads about this if you do a search on this forum.

Hi Krystal, Very sorry you joined the club; but I want to encourage you like everyone else to seek out a specialist. Your experience with your cardiologist is not all uncommon. As previous posters said a neurologist or cardiologist that specializes in autonomic dysfunction like the ones listed on the DINET website are most likely to be helpful. Things can get better!

Hi krystal, There are a lot of threads about CCSVI. Be sure that when you search, the grey box no longer says "This Topic". You need to click the grey box and select "Forums" as corina described. CCSVI is an interesting procedure, but it's highly controversial and from my own exploration there does not seem to be much, if any peer reviewed data about its effectiveness in POTS in particular. If one's POTS is caused by autonomic neuropathy (as in 50% of cases), I don't see how it could be effective.

Hey Rachel, From what I can tell ANA and its subtypes are run quite frequently when there is a suspicion of autoimmune disease. A positive test on its own is usually not definitive since some healthy people will have a positive result. However, a positive result along with symptoms can be diagnostic. I think the Wikipedia article is actually pretty good in this case: http://en.wikipedia.org/wiki/Anti-nuclear_antibody For what it's worth, I know a lot of people on this board have had many ANAs tested (as have I).

Thanks for all the of the replies guys. There's a lot of good advice in this thread and some good anecdotes. Volo - that's very interesting about interval training. I may need to try that. Right now I do 7-8 miles each session on the recumbent bike... so around 30 miles a week. Of those, I do about 21/35 minutes of it on a higher resistance, but I don't constantly switch back and forth from high resistance to low resistance. I get my heart rate up to 160, sometimes 165 bpm - and no matter how hard I try I can't get it above that recumbent biking (of course just standing in place can easily get it to 140s )... Keep me posted on how your interval training progresses. I used to be an avid tennis player and used to do a lot of elliptical too, maybe one day I'll play tennis again!

I've read a couple of you mention that after months of exercise you gave up on it because your symptoms did not continue to improve. I saw this comment in the Neuropathy Association FB chat today: "Nicole Duffy I have a dx of pots and have started the cardiac rehab but I don't know the cause of my pots. I'm 27 years old should I be so concerned with the cause or not worry and stick with the program and hope for the best? Thank you! Dr Kinsella you are in good company- most of the time we do not find a specific cause for POTS. the lynchpin of therapy is fluid, salt and exercise. medication with beta blocker or others may be helpful. keep up with the exercise, as it has the best data to change your outcome." I've been exercising now for 6 months and I've kind of gone into maintenance mode. I'm walking 110 minutes a day (split up over 6 separate walks, the longest of which is 40 minutes), exercise biking 35 minutes 4x a week, and doing leg weight lifting with light weights 2x a week. I'm wondering if you guys think I should further increase what I'm doing. I feel like it's already a lot at this point and I'm not sure how much more I want to move forward on it if it's not going to further improve symptoms. Has anyone had success with symptom improvement that they attribute to exercise, more than half a year after starting exercise?

Thanks Rachel and everyone who worked on the newsletter. It's another really good one!

Hi Andy, My understanding is that one of the top autonomic doctors in the UK is Professor Christopher Mathias. I'm sure it's hard to get an appointment with him, but given the severity of your situation, I imagine exceptions may be possible. If I were you I would immediately try to make appointments with all the top doctors in the country. Especially since the appointments may take so long to actually happen. I know that several members of this forum have seen Professor Mathias. It is my belief that the more rare your condition, the more specialized and respected the doctor you should see. David

Hi Andy, I'm very sorry about the severity of your condition. I want to encourage you to keep seeking answers and treatment. I don't know if "dysautonomia neuropathy" is the same as autonomic neuropathy. If it is, it is certainly not a rare condition (quite common amongst diabetics in fact and of course all of us with POTS). However, the severity of your case and the underlying condition causing it maybe quite rare indeed. I'm sure your doctor knows better than I do. I just wanted to point out that autonomic neuropathy in its self is not rare. Best wishes. I'm sure your daily life must be very difficult. I pray things improve for you.

http://www.bbc.co.uk/news/magazine-24532996 Notably I guess the average normal person's heart rate goes up 10 bpm while upright.

I had the panel done (actually via Quest who can send it out to Mayo for this) and they were all negative for me. The specific tests performed were: ANNA-1, S ANNA-2, S ANNA-3, S AGNA-1, S PCA-1, 5 PCA-2, S PCA-Tr, S AMPHIPHYSIN AB, S CRMP-5-IGG, S It includes interpretive comments: No informative autoantibodies were detected in this evaluation. However, a negative result does not exclude neurological autoimmunity with or without associated neoplasia. The mystery continues! Have there been additional antibodies added to the panel recently? This was from May 2013.

Just for the record, Klonopin is also an anxiolytic like Ativan. Both are also anti-convulsives (seizure drugs). They both have on-label use for anxiety. My understanding is that they are fairly similar drugs with Klonopin's main advantage being a much longer half life. http://en.wikipedia.org/wiki/Klonopin http://en.wikipedia.org/wiki/Ativan

Since you have an official diagnosis of POTS, if I were you my next step would be to find a doctor (cardiologist or neurologist usually) in your state that deals specifically with POTS (not a cardiologist who happens to have a couple patients who have it). He or she can put the pieces together for you. It's a specialized enough discipline that most doctors may be unlikely to give you meaningful insights beyond taking a beta blocker to slow your heart down.

Hi arizona girl, How did you figure out that you have the mthfr gene defect?

Unfortunately, I feel like it is very unlikely many, if any of the people here have the expertise to interpret your MRI images. However, I applaud you for having the bravery to post them. I think in the future people will be less likely to be concerned about privacy and more likely to post medical records online where they can crowd source help. It will be a revolution in medicine.

Hi Janet, In regards to your thought on restraining a compensatory mechanism - although I can only speak to my own personal experience, I agree with you. I think it depends on your underlying cause... yet again... but if your tachycardia is in fact a normal response, and not hyper-pots, hormonal, etc or an over-compensation then you may feel even worse not having it. I certainly did. Although it feels awful to suddenly have your heart rate double, it may feel even worse to not have enough blood going to your head. Perhaps for some people there is a balance.

Thanks for the replies guys. I never had a reaction to the flu shot prior to last year. Thank you in particular for the case study, Alex. It is the same strain of H1N1 vaccine that was included in the combined flu vaccine last year. I have decided to not get the flu vaccine this year. I have no evidence to indicate that I have any kind of immunodeficiency, and I have never had a problem getting over viral infections, nor been someone to get abnormally high amounts of them (actually probably the opposite, I'm not prone to getting sick). Since I did clearly have a reaction to the vaccine last year, and it maybe the cause of my POTS, it just does not seem worth the risk/reward ratio. I may still do the pneumonia vaccine challenge, undecided. Thanks again for all the replies.

So one of the things that happened to me when I first got sick a year ago was an extreme reaction to a flu shot - not sure if that's the actual trigger of the autonomic neuropathy or not - but basically I got a flu shot, and a day later I completely lost use of the arm. For a week and a half I couldn't even open my car door with it. The elbow (shot was in the shoulder, not elbow) hurt like **** and the arm was numb from there down. Now I saw an immunologist finally and she was pretty stumped. I showed her all my old records. The only thing she wanted to order was a T-Cell panel, some EBV antibodies, Tryptase (after I mentioned MCAS), and a vaccine challenge. I have a choice of either the flu shot or pneumonia. I'm leaning towards not doing it at all since I had that reaction at the same time that I came down with POTS/SFN. If you were me and had had the same extreme reaction to the flu shot last year at the same time that you got sick, would you do the vaccine challenge? If yes, why? I have no reason to believe I have immune defficiency. All my basic IGA, IGG, IGM, and complements have been normal.

Guys there is hope this procedure will be commonly available some day soon if the drug companies don't find a way to shut it down: http://gizmodo.com/you-can-get-a-poop-transplant-in-a-pill-now-1440813186 Sorry, I couldn't find a the more reputable AP article that I read... but this was covered in all major press outlets so just do a search if you want something better than Gizmodo!