jangle

You're a young man wearing leg hose.

I've noticed that since I developed POTS I haven't ever felt that sensation of "relaxation". Like in the sense of that feeling you get when you're bored and you feel sort of the rejuvenating feeling of being tired etc etc. Like in classes when one would be prone to day dreaming, it's hard to describe the sensation, but I think you know what I mean. I distinctively remember the feeling before I had POTS, but I just can't feel it again. It's odd and I'm wondering if others are the same way. Like have you been able to feel bored, like deep boredom or greatly relaxed? I truly think that consistent with all of us is that our parasympathetic nervous system is dysfunctional, and I think that's partly why I haven't been able to feel the typical feelings associated with parasympathetic activity. Relaxed, bored, etc. etc.

Sorry to hear that, I remember reading a study from Stewart that low flow POTS seems to respond well to vitamin C. Although in the study they used an IV form of it that's more bioavailable there might be some benefit with vitamin C supplements. Hope the swelling diminishes, also is the fatigue from chronic fatigue syndrome or something you're experiencing now?

Back when I worked at a grocery store I used to love the late night shifts around midnight. I guess it depends on how severe your symptoms are at the moment and if there's anything that can give you relief. I wouldn't recommend working late night shifts though because it throws off your circadian rhythms and probably would make your POTS a lot worse. Although if hard pressed to become a security guard, I'd be sure to rig up traps so that I wouldn't have to be doing any chasing in case of emergency.

This past week I've noticed in sort of random order time periods lasting a few minutes to a few hours where my symptoms have been decreased. Sometimes quite significantly, but unfortunately I always seem to return to baseline awfulness. However, this is really the first time I've noticed even a small break from baseline, I've not experienced a decrease in symptoms since I got this condition. I'm wondering if this means I'm entering a period of remission? For the other members on here who've had a remission from their symptoms, was it immediate, or did your symptoms begin to oscillate before you broke free?

There was this study on erythropoietin in POTS patients: http://journals.lww.com/americantherapeutics/Abstract/publishahead/Erythropoietin_in_the_Treatment_of_Postural.99689.aspx?WT.mc_id=HPxADx20100319xMP I only get the abstract to the study so I don't know why out of 200 patients they only selected 39 to study. But in that population of 39 patients it showed that 79% improved. Also it took about 6 months before they noticed their improvement. I don't think it would be easy to get this treatment, is there another way we can boost our EPO levels by ourselves?

I was reading this study:http://jap.physiology.org/content/99/3/828.full Which basically says that our cerebral blood flow is the same as people without POTS. There have been studies which contradict this study, but this study seems very rigorous (included 27 patients with POTS) and honestly the other studies show a difference of about ~9% blood flow between control subjects and POTS which I don't know is statistically significant. If one accepts this study as being representative of what's occurring in people with POTS, then what's producing our symptoms of pre-syncope? Could it be that our heart rates are so high that blood isn't given enough time to exchange oxygen and CO2 in the alveoli of the lung which would produce a lower oxygen level? This doesn't really make sense because SP02 (Oxygen saturations) are normal in POTS patients. But then SP02 can also be normal in anemic patients despite having clinical symptoms. I guess I was just wondering what other people's opinions are, do you think this study I linked is accurate or do you think our cerebral perfusion is lower than people without POTS?

I remember I was in my 11th grade English class. It was horrible

I had a nerve conduction test done recently that showed slight abnormalities in my sensory nerves. Following this test (it was scheduled two months in advance for something different) I began experiencing slight symptoms. Now a month later I'm noticing a lot of tingling and prickling sensations in my hands and arms as well as legs. Is this expected during the course of POTS? (To have sensory neuropathy) if not, do you think there's a real chance of this (this being whatever the cause of my neuropathy) attacking my central nervous system as well? Or does peripheral neuropathy usually stay in the peripheral regions?

I see a lot of anecdotal evidence as well as some published studies about fish oil supplementation being useful in a variety of autoimmune disorders such as lupus and rheumatoid arthritis. A few people have said it has lowered some of their respective autoantibodies. Obviously there's a lot of logical stretches I'm making here but here goes: POTS --> caused by autoimmune (in some people) ---> specifically it seems antiganglianic acetylcholine receptor antibodies are the most likely culprits. ----> fish oil has been shown to lower autoantibodies in a variety of other disorders (after many months) ----> maybe it can lower antiganglianic acetylcholine receptor antibodies------> Since it takes many months for fish oil to reach statistical significance in the other studies, it perhaps would take equally as long as being used in this regard. ---> hence 1 gram of EPA + 1 gram of DHA a day for 2-3 months might have some benefical effects in POTS. I was just wondering if anyone else on this forum might have been taking fish oil supplements already and for a long period of time. Also if they suspect they might have the autoimmune version of POTS.

Man that stinks, especially with all the outside stress that's inflicting itself on you. Give your mother in law a day in the life of POTS and I bet she'd start mowing your lawn for you thereafter. There's gotta be some type of medical reprieve offered at your work, and if not that's really dumb. I mean I guess I'm not well experienced in the real world but there's got to be some type of mercy in the case of illness. Obviously I'm not a medical doctor but I don't think your condition is going on a downward trajectory, it seems like you've had remissions and relapses in the past, hopefully it's just another relapse and it'll be over soon enough. Potassium + salt + fluids + florinef, hopefully gets you feeling better.

I was just wondering if since this thread has been created if anyone has started LDN for their POTS and noticed an improvement?

I can only answer the first and third question as I do not know about adrenaline surges or gluten free. I would say the diagnosis means that you have some type of dysfunction in your autonomic nerves which prevent adequate venous constriction or blood supply to your brain while you're standing up. This can result in the lightheadedness and headaches you were describing. The good news however, is that according to preliminary studies 80% of the people with your form of dysautonomia (people who began in the 15-17 year old range) typically recover by their mid 20s. So hopefully in the next few years you'll find your symptoms diminishing. Yes it is common to feel overwhelmed but I guess it's good to take to heart the fact that people have lived with this condition for many decades and have been able to function. There are treatments that can ease the symptoms and help you live day to day, it's just a matter of finding what works for you. Also there is this website which can be very helpful as a support mechanism. Hopefully you start feeling better soon.

I know this is a tough symptom to have. I remember when I first started college I had extreme bouts of nausea where I couldn't anything all day. I didn't know what I had at the time but I remember just thinking to myself "You gotta eat something or you're going to have to quit school." I found that I could hold down apples.

Would anemia show up on your complete blood count?

I might try this treatment anyway since I already live in Texas and Dani mentioned they take 3 insurances (maybe I'll be one of the lucky ones!). If I can get the cost low enough it might be worth the try. The thing I like about it is this seems to be the only center that's specifically designated for POTS. I feel like each doctor I've been to has very little idea about dysautonomia and isn't bothered to really spend a lot of time even studying it. That's nothing to say that biofeedback is all of a sudden legitimate, but it'd be nice to at least go to someone who has seen probably many many many times more patients with POTS than most doctors in the nation and has experience and dedication to treating them. (Maybe my bitterness towards the lack of insight into dysautonomia from the medical community is showing.)

Im 23 guess im old now but I started this illness when I was 17. Just took that long to get a diagnosis.

To be completely honest with you Ithink this doctor had been recently sued. Especially since you say this clinic had a history of bad care I think the recent lawsuit brought out a hypersensitivity in this doctor and he took it out on you.

Ya I also don't like the language about cures or only showing patients who improved significantly. It's not that I'm a pessimistic guy it's just that turns on my skepticism vision and gives me the impression that this is more of a business than a genuine humanitarian effort. Rather I would like to see a report on a number of patients outcomes and to be genuine with the presentation.

For the people who did go through this program can you please give a rough estimate of how much it helped you? Did it help at all with some of the common symptoms like lightheadedness, headaches, nausea, tingling? I did see that biofeedback was useful for Raynaud's which is considered (I think) to be dysautonomia. This is one of those things I really wish could work but I'm skeptical.

I'm guessing something like this is expensive (for out of town patients) which probably isn't covered by insurance. It's a neat concept but I can definitely not afford it. I'd be willing to try it anyway for that cost if there was RCTs or even prospective studies showing that it's effective, but I haven't seen anything and I can't risk losing that much money and not getting anything.

I'm wondering if there is a pattern for us POTS people. I had two ANA tests conducted 4 months apart. Both showed a 1:80 titre with "speckled" pattern. I'm wondering if this is the reason why my nerves haven't regrown after all this time (I'm still having an autoimmune reaction attacking them!)

Honestly as im learning more about the management of this illness it all just seems like a crapshoot and no one really knows what the heck is going on. The important thing is that it's working

Yes, but one thing that has always confused me is why our nerves don't seem to regenerate and we have these dysautonomia symptoms seemingly indefinitely. Now of course there is a significant number of people who seem to improve with time, but then there are others who don't and get worse. I wish there was more research being conducted on regenerating damaged nerves because I do think there's a lot of potential given the fact that the peripheral nervous system is naturally able to regenerate itself. Perhaps the best type of treatment for us would focus on providing the environment to accelerate and optimize our autonomic nerves regenerating.

http://www.news-medical.net/news/20100712/Scientists-discover-way-to-enhance-nerve-regeneration-in-peripheral-nervous-system.aspx According to this research team and others, it seems that inhibiting PTEN can drastically accelerate the regeneration of peripheral nerves. One thing I never understood was why our autonomic nerves didn't regenerate after being damaged. I was wondering if anyone could share their insight on the issue and what might be done that could help our nerves repair.