davecom

Freaked, I'm also in my 20s and I agree with everything lejones1 said. As hard as just living is when you're sick, you have to advocate for yourself, and seek treatment yourself. I'm sure you've already tried all the non-pharmaceutical treatments (exercise, tons of liquids, salt) that you can do "for free". If you bring medical journal articles with you about POTS treatments to your PCP (or "GP" in Ireland?) perhaps he will be receptive if you approach it in the right way? But to answer your question directly - I was untreated for the first 6 months too, and while I had better weeks and worse weeks, as a whole it was just a decline until I ended up in the hospital on my back for 2 weeks, could hardly stand up at all, and then started exercise. Now, I don't know if the underlying condition causing my POTS is getting better or worse (Small Fiber Neuropathy in my case), but I do know that the 'treatment' has at least made living day to day more enjoyable. I'm still quite debilitated (and no my friends (and even family) don't really understand the disease or why I'm no longer around), but at least I can smile sometimes and feel relatively normal sitting down, which I didn't always when I was in the thick of it that first 6 months. So yes... not getting any treatment is bad in my opinion, but that doesn't mean when you do it will be too late to start to turn things around. Take things one day at a time, be an advocate for yourself, and find a doctor who will be an advocate for you too. I don't know the situation in Ireland, but you must keep seeking treatment. We're too young to not be treated. Why should millions of Euros be spent on some person in his 80s on his death bed and not on you... in the prime of your life in your 20s and significantly debilitated?

I agree with Andy 100%. It's a disorder where you need to do your own research to explore treatments and underlying causes. You may even need to gently lead your doctor in directions you want to go... especially if he has never seen it before, or only a couple times.

Keep up the good fight. I'll post back here when I get the genetics results back in a few months (I've given blood... apparently it's just that sort of process).

Your attitude is incredible, and you are an inspiration. Sending prayers your way. I hope the Japanese medicine helps you. I hope if it doesn't you don't give up hope that another one will come out that will.

They make it sound so easy... like we can just find the cause of our SFN and cure it. These articles that reflect on studies are always so upbeat to grab headlines.

I also developed eczema (which I had never had)/other bad skin at the same time as the onset of my POTS. I always had bad skin, but now it's close to its worst a year in with the POTS. Interestingly the eczema is on my right arm, which is also where my blood obviously pools. I have small fiber neuropathy though... and I read that the skin changes can be correlated with where the nerve damage is - and I have been found to have nerve damage on that arm.

To put it in perspective with regards to 'normal' - my physical therapist said I was the only patient he ever had where more activity made the heart rate go down...

Normal for people with POTS. My doctor has me walking 100 minutes + a day (split up in walks every 2 hours)... but whenever I stand still (and when I first get up to walk each time) there is tachycardia/the 30-50 bpm rise we're used to.

We're here and we're naturally underrepresented since we're only ~10-20% of the POTS population. It's an odd position to be in, but I have found doctors to be fairly sympathetic (in comparison to some of the horror stories I've heard about female patients).

I saw a geneticist and showed her the article and she was receptive. I probably won't get testing back for 5 months though... Keep me posted on what happens with you.

Yes that's completely normal according to my doctor and follows my pattern 100%. When I first get up my heart rate will go from around 70 to around 120 regularly, but with walking goes back down to the 80s, 90s, lows 100s. If I stand still (or make some weird movement like putting on pants)... it will spike back up. It makes sense since the movement (and your leg muscles in particular) help blood circulate... compensating somewhat for your heart.

Becia, my heart goes out to you. It was heartbreaking to read your story. I do believe you can get better, so you can't give up hope. I wanted to point you to a story very similar to yours of someone who recovered: http://www.dinet.org/stories9.htm#pots%20recovery It's called "POTS Recovery" by Kerk on Page 9 of Stories and he also had PVCs, PACs, POTS and multiple ablations (spoiler - he recovered... so I just wanted to give you some hope).

This is my personal opinion just based on reading your paragraph and how I would interpret it if it were me - he can't technically diagnose you with POTS because you didn't meet the clinical 30 bpm rise on the TTT. You just missed it by a few beats it sounds like - so he's saying in laymen terms "well you're close to having POTS so you should try to prevent it getting any worse."

Yeah the total igg was normal. Yes, my PCP told me high ch50 was a non-specific indicator of inflammation and likely due to my aggressive exercise program. Personally, I would rather have Sarcoid than severe Sjogren's (I think, but what an awful choice) since in many cases it resolves itself. I have not seen a Hematologist. I never had recurrent viral infections (just the aforementioned bacterial that took a while to go away), and in prior illnesses always developed a normal fever. Clearly there's something off; I don't think I have any idea what it is; I hope it resolves itself - but I clearly need to find a good immunologist to be sure. I'm a bit scared of choosing the wrong guy/lady for the job. I have found it can actually be more harmful to go to a bad/wrong doctor than it is helpful to go to a mediocre one. So, I really want to be sure I'm going to a solid investigator who's interests fit my problem well. Still not sure who that is exactly; but will keep looking.

Well I think in my case it would be assumed that since it is thought I had a virus last year and I had no history of anything particularly interesting before that virally, it would be the virus of last year... although of course some people have mono, etc as a teenager and don't even realize it.

I also have a low resting diastolic pressure (not quite as low as you though - more like 60, high 50s), but for my gender/height/weight that's pretty low! Sudafed contains phenylephrine - a known vasoconstrictor. If you search penylephrine on the forums you will find others who have experimented with it. You can talk to your doctor about it - he may even say it's okay for you to use regularly. Are you sure it is the blood pressure itself that is causing you to feel cold, or is it just that when whatever the other mechanism that makes you cold is active, it also causes you to have low blood pressure? Is it a catch 22?

Thanks for the replies and suggestions guys. These were some of the most helpful replies I've gotten on this forum. Really appreciated. Yeah no symptoms going back to childhood, or even back beyond a year ago - was definitely a fairly sudden thing. Only really bothersome definite infections I can think of were a very bad sinus infection once that lasted for months (but I have overall structural sinus issues/previously had nose bleed issues so that was no surprise), horrible food poisoning preceding this by probably too long a time - 8 months, a recurrent/hard to eliminate staph infection (lasted like a year) on my legs, and acne. Very rarely got sick actually in terms of colds/other infecitons, etc. It's funny I took a bunch of classes in computational biology and genetics for my masters and studied so many viral models. Now I wish I had continued on to work in it so I could fix myself! Enlander seems to have his own clinic now. Looks like it might not quite be what I'm looking for. I will keep him in mind though - I'm checking out the others too. I had a mostly normal basic IGG (think they only did 1 through 3) panel before except for one slightly high value (don't have it with me atm) and an elevated CH50. I really want to get a ton of viral antibody tests. I know a bunch may still be floating around in you a year later; I'd love to have a positive mono (ebv right?) for example and have an explanation; or alternatively of course I want to know if I have sjogren's, sarcoidosis (the two I think most likely) or some other autoimmune and get onto treatment asap. The thing is I can't really be sure I had a viral attack. It is suspected since I suddenly had extreme digestive issues after never having them before (that have continued but gotten slightly better). I also had a lowered LVEF on two echos at the time, that has since returned to normal. For those reasons they suspect maybe post-viral. Yet, I never had obvious signs (fever, very elevated white blood cells, etc). I also have such continued systemic involvement - skin changes, digestive, neurological, cardiological, etc that I doubt it in some ways and think the autoimmune issues being suddenly triggered by an instigator is more likely in some ways (trauma, etc). Natural Killer Cell Function sounds interesting, but I feel like I wouldn't have been so healthy before if I had issues there - definitely worth doing though. Of course in my opinion... and this is probably a lot of us... almost everything is worth doing! Why society spends millions on octogenarians in the last 2 weeks of life, but is more reluctant to spend tons giving back someone in their 20s their life by figuring out definitively what's wrong is something I won't ever understand!

Thanks for the suggestions! I looked up Dr. Cunningham-Rundles and I may try to make an appointment Monday (I imagine there's quite a wait). I'm not sure immune deficiency is really the avenue I'm looking to explore, but maybe I just don't understand it properly. Well my neuro flat out told me based on my test results that my immune system destroyed my small fiber nerves. He thinks it is probably post-viral, and wants to take a wait and see approach before doing more testing since auto-immune blood tests were negative. Me not so much. He is co-director of the neuropathy clinic here and was very adamant that small fiber nerves can regenerate when there is no underlying auto-immune disorder (and even if there is given immuno-supressant drugs he said). He said my outlook was pretty positive since I have shown some signs of recovery already in his mind. I really want to believe that, but I'm not so sure since I'm still substantially disabled. I don't really think I have a defective immune system. I think the neuro is right and I had some kind of immune response that triggered the sudden destruction of my small fiber nerves. I want to know what that immune response is/was (auto-immune, virus, etc).

I noticed that a bunch of you are followed by an immunologist. I think that maybe my next step in the NY area. What I'm afraid of doing, as has been my experience with some specialists in the past, is going to a mediocre one and/or one that has no idea about what we're dealing with. I've looked through all the immunologists' sub-specialities at Cornell and Columbia and nothing caught my eye. I'm at the point where I have confirmation that my underlying sub-type of POTS is neuropathic(small fiber neuropathy). My neurologist suspects it was post viral and expects me to recover on my own now that some of the more glaring auto-immune diseases have been ruled out by blood test (lupus, scleroderma, sjogren's, etc - although I know sometimes these still exist even when initial blood tests are negative). He expects me to recover over the next couple of years and doesn't want to run any more tests or put me on immune suppressants unless I get worse. Well, yes, I am a little better than 3 months ago - but as he said it's not really clear how much of that is actual disease improvement and how much is my aggressive exercise program. Despite exercise biking 7 miles 5 days a week, weight lifting the other two and walking 100 minutes a day, I am still miserable; in bizarre pains, unpleasant chest and neck feelings/pains, gastro issues, and with an erratic up and down heart rate while upright. So basically I want to be sure I don't have an ongoing immune thing that continues to destroy my small fiber nerves. It would also give me piece of mind to find some anti-bodies and be able to have an explanation like... "oh yeah you had mono/some bizarre herpes/etc last year that caused this." So how do I go about finding a dedicated, intelligent, qualified immunologist who will be willing to work with me? I don't even know what sub-speciality of immunology to look for!

Thank you for sharing, Issie. It is a very interesting article. I believe the protocol he prescribes is helping a lot of people. On the other hand, I of course read the interview with a fair bit of skepticism - he is making a very very big claim. I would think it would be more well known by now... but then again I am also skeptical of the medical and media establishment. So, I am unsure what to think. I hope his clinical trial gets approved and more data is published.

Hey Zap, Great work looking this stuff up and doing some research. The sodium channel blocker idea is actually mentioned in the original article. I have an initial appointment with a geneticist in about a week. I am going to bring this article with me now that I have the SFN diagnosed by biopsy and the suspicion that it is idiopathic. Reading your past meds and diagnosis; seems like we might have something in common. Let me know if you progress.

Thank you for sharing your story. It is inspirational. I wish you a safe journey of continued progress.

Checkout the article; the gene is in there.

My understanding is that it means it's much much more unlikely, but that a skin biopsy is still the definitive diagnosis. If it's not otherwise suspected though, probably no reason to do a skin biopsy, right?

I hope this article wasn't already posted. 2012 from a team of mostly Dutch authors: [PDF] from researchgate.netresearchgate.net [PDF] Interestingly they refer to autonomic dysfunction amongst patients with the identified gene and suggest it maybe worth testing for in idiopathic small fiber neuropathy patients. * I meant to write 28% of IDIOPATHIC Small Fiber Neuropathy.