davecom

I think you should continue to seek out a new doctor in your area if you are unable to travel. I would do extensive research - Yelp reviews, personal recommendations from other POTS people in your area, doctor review sites, looking into ones that have written journal articles that are even remotely relevant, etc. Doctors are service providers and are well compensated for what they do. It is time society stops putting them on a pedestal and demands they earn their exorbitant rates.

ask2266 - I am very sympathetic to the Earthing concept and everyone giving it a try; however I take exception to your sentence about there being no way to fudge a published research study. There are many many ways to fudge a published research study. I'm supposedly a scientist on some level, and I have seen some really shoddy research and read numerous stories of outright lies in very prestigious journals. And the lesser the journal, the more frequently it occurs.

26 now, 25 when symptoms started

I would second considering starting with recumbent exercise as per Levine protocol.

Have you had the neuropathy biopsies, QSART and such related to the POTS? I was evaluated today by an ENT for similar throat pain. She is doing a lip biopsy next week for Sjogren's (would explain everything including the neuropathy, POTS, etc) but her diagnosis of exclusion is neuropathic damage similar to that which caused the POTS.

Yes, this has been on and off for me. It is also a neurological thing they say. It comes and goes; I have read others have had a similar experience. So, rest assured, it can get better on its own over time...

Hey Andy, Sorry about the diagnosis. How did they arrive at the EDS diagnosis? You mentioned before that the doctor was impressed that you can do a reverse prayer pose... How did he diagnose the MCAD? I'm curious how doctors are looking at this stuff in the UK.

Thanks for sharing your story. You've been through some really awful illnesses and you're quite a fighter to have emerged victorious. I'm not sure I buy into Earthing 100%, although I am trying to do it daily outside in the grass for months now; Keep us posted. Not to be too cynical - but how can you be sure this is not placebo effect? Did you measure heart rates/blood pressure for example before and after?

This is a venting/crying on your collective shoulders' post; so let me say ahead of time that it is in no way valuable towards the discussion, but simply a recounting of my experience the last month and search for new direction. In June-July I weaned myself off midodrine, atenolol and my headaches dramatically improved. My gastro symptoms seemed to be resolving and I cut down on the amount of carafate I was taking. Of course, off atenolol my heart rates initially went back up, but after a withdrawal period, I was really excited about the progress I was making. I even managed to stand still for 10 minutes at a time with heart rates doing a sine wave between 110 and 80. Initial stands started to top out at 120, and sometimes, very ocassionally, didn't even break 100 which was incredible. My resting heart rate returned to around 70/high 60s sitting. I had this sense I was really starting to get better - that the doctors were right that my condition was post viral and I was going to recover on my own. I increased my walking to 105 minutes a day split between 6 walks (with the longest 35 minutes at a time), got biking up to 35 minutes/5 days a week, and continued some light weight lifting. I introduced a couple new foods back into my very restricted diet. I started on some work projects again. I thought my situation had finally become fairly manageable and was in this upward trajectory. Every conceivable blood test for autoimmune disorders had come back negative. Of course my skin biopsy showed extensive small fiber neuropathy and some complements deposits as I talked about in another thread. Then, throughout the month of August things have gotten worse and worse. I had a new symptom suddenly appear - burning/tingling in my hands and feet. Over the course of a few days it went from nothing to severe. Classic small fiber neuropathy. I started having extreme acid again and constant pain in my throat and back (all along the esophagus). I started losing weight again (dropped between 5-10 lbs so far depending on when you measure it). I started alpha lipoic acid and bentofiamine (B1 derivative) for the neuropathy. The gastroenterologist, my 5th and a supposed esophagus expert, is doubtful my constant excruciating throat and esophgaus pain is gastro related - atlhough I know it is... he's making me see an ENT even though I saw one before who looked in there and said I have severe esophagitis from reflux. I failed PPIs for the millionth time (severe headaches, worse POTS - I still think they had a big contribution to me getting sick in the first place even htough my initial use was only 10 days last october). My heart rates have gotten worse - back to often seeing numbers in the 120s, sometimes the 130s. I've had stands at 147, 140 multiple times. I tried clonidine and it didn't really help me. My feet are experiencing extreme coldness a lot and so is my right hand again. My left hand has started to turn red while walking like my right hand does. So... I have the appointment with the ENT, a follow up with the gastro after that, and a follow up with the neurologist. I think they basically have no idea what to do with me. I have a geneticist looking into my genes but that will take 5 months. I am going to push for a lip biopsy for Sjogren's and I have a prescription from my PCP for a glucose tolerance test which I will do. My most immediate problem is this extreme pain in my throat and esophagus and it seems I'm pretty much on my own with it. I am trying everything - EVERYTHING. I have failed every PPI. I am stuck with famotidine and carafate which for some reason has stopped working. I'm ready to go for a surgery but someone should help me investigate my acidity levels, etc and see what is really causing it - I'm upset because I've been through 5 gastroenterologists and all they do is say well since I had a ton of testing done when I first got sick last fall there's nothing to do for me now... well I've suffered with this pain for a year and when I have esophgus cancer it will be their blood on it for not doing further testing and figuring out what it is (and why I have weird anomalies like my gastrin level being 0). Rant over. Just frustrated. I'm still exercising, taking supplements, walking, following an extremely limited diet, and researching. I still think I will one day be healthy again, but I doubt it more. I'm doing everything I can for myself but I still have no idea why I went from healthy to "striking" neuropathy (causing POTS) over the last year, nor what the heck is going on with my stomach/esophagus. I feel once again at the mercy of doctors who don't 100% believe me, a position I hate to be in.

Becia I know how freaked out you must be. You have a right to be, there's no two ways around it - the whole experience is freaky. Yet, at the same time, reading several of your posts, I have this strange sense/feeling, I don't know where it comes from, that things are going to turn around for you and gradually, very slowly start to get better. I'm very glad they have referred you to Toledo. I can tell from the tone in this thread and some others you have written that you are determined to fight this, learn as much as you can, and get better. Don't let any setback deter you. Many good wishes your way.

Good ideas about the parasympathetic effects of these drugs. You're saying they actually increase parasympathetic activity? That should actually be helpful right... Any links to articles? I started Nexium yesterday at 5 AM. Hasn't helped at all so far. However, the severe headaches I had on all the other PPIs did return. I will probably give it another day since I am in so much pain in my esophagus/throat. I agree gastroparesis may play a role, although I think the primary cause is the LES not functioning. I should try a gastroparesis friendly diet - although my diet is so limited right now that it's not that unfriendly as it is (I was just reading Mayo's gastroparesis diet recommendation). Yeah I take a magnesium supplement. I have some Potassium salt that I also very occasionally add to food.

At this point regardless of its effects on me, I really have no alternative short of surgery - so I'm trying the PPIs again. I've tried every other option... I'll need to roll the dice. I'm starting Nexium, the only one I didn't try before (although yes I know it's an isomer of omeprazole) today. What's weird is one of my first symptoms a year ago was this unrelenting acid reflux (unrelated to what I eat, when I eat, etc). It seemed to finally be controlled on famotidine and carafate a couple months ago. But it came back with a vengeance a bit over a month ago. It's the real reflux - the acid is not so strong, it's the literal food or other contents moving back up the esophagus - even 8 hours after eating and sitting up/walking the whole time. The only thing I can figure is its continued small fiber nerve damage causing the LES to not function/other gastrointestinal regulation misery.

I don't really find most of the previous alarms about PPIs that surprising - by suppressing acid production they inhibit the breakdown of nutrients in the stomach which leads to vitamin deficiencies. Specifically, calcium and B12 need stomach acid for breakdown prior to absorption in the intestines; hence the higher rates of bone fractures with people on long term PPI treatment. I tried about 5 different PPIs over the last year but each seemed to make my headaches worse. In retrospect, this was all prior to the POTS diagnosis, so it's not clear if the headaches were just from that. My throat is in such constant excruciating pain now that I feel I need to give them another shot. For some reason H2 blockers stopped working, even though I've tried doubling the dose. Some extreme tolerance perhaps, but I don't know. I've tried every home remedy there is. I'm already on the plainest low acid, low fat, gluten free, dairy free, diet you can imagine so I feel I have no alternative at this point.

Proton Pump Inhibitors (PPIs) are an immensely popular drug class and undoubtedly a ton of POTS patients are on them. A recent study shows that they seem to have a cardiological effect and it is related to Nitrous Oxide. This is especially relevant for POTS patients. Here is the study: http://circ.ahajournals.org/content/early/2013/07/03/CIRCULATIONAHA.113.003602.abstract Thoughts? It appears to me that the researchers are indicating that PPIs may actual inhibit blood vessel dilation. Is this a correct interpretation? Could they therefore actually be helpful for POTS?

If I read that link correctly, neuropathic POTS patients actually have too much nitrous oxide availability? So I don't know if y'all have seen this recent study about PPIs having significant effects on blood vessels by reducing nitroux oxide availiability by 30%. I've been afraid to try them again (got severe headaches from all of them before) because of this... but maybe it would actually be good for me it seems.

According to Wikipedia "Agmatine inhibits nitric oxide synthase (NOS)..." http://en.wikipedia.org/wiki/Agmatine

Yeah I've been on a gluten free diet since this started almost a year ago and dairy free for many years; in my case at least I don't think it makes a difference; but I'm not willing to go off of it and risk it with all the GI parts of this whole picture.

Well I take an H2 blocker for GERD which also started at the same time as the rest... so do millions of Americans. Why would taking an H2 by itself be dangerous? Is there an article about this danger?

I've been curious about mast cell stuff in my case. I had the 24 hour urine methyl-histamine which I know is not accurate versus the 4 hour. I don't think realistically I will be able to see mast cell specialist anytime soon. I take a lot of H2 Blockers. I tried Zyrtec for a week in addition to the H2s - didn't seem to make much of a difference. How would mast cell disorders be related to small fiber neuropathy, if at all? Since I have discovered the "striking" autonomic nerve denervation via biopsy, I have put my exploration of mast cells on the back burner. I kind of felt like I had figured out my POTS sub-type and now I was trying to figure out the cause of the neuropathy. Of course I know you can have multiple sub-types co-commitently. I could try more H1 blockers as a trial. I don't have much to lose I suppose.

Andy, I'm sorry about the unfortunate day. But on the bright side, you did get some possibly valuable information and a way forward. From what I have read mast cell disorders are quite uncomfortable, but there are a lot of treatments to try. With how hard you have pursued the disease so far before even knowing the sub-type, I am confident you will get better.

Issie, congrats - that's really inspiring to hear and must feel great for you. You have mentioned bits and pieces of the regimen you're following in various threads - low fat vegan diet, supplements, addressing a parasite infection. You also had a great long thread about it. Could you summarize in a couple paragraphs your regimen? What would a typical day be like for you in regards to how you are addressing your autoimmune issues.

Couldn't find page 26-27, but did a search for c5b-9 and found some interesting stuff. Certainly seems associated with several skin diseases. I've had these skin things going on too... I will need to piece these things together; but once again Lupus was associated with low total complement it seems; a lot to follow up on. It also seems possible that I have a co-morbid skin condition like the Porphyria cutanea tarda mentioned. I did have a slightly elevated liver enzyme at one point. And this all started with right upper abdomen pain; so it's definitely plausible, if a little far fetched. Thanks for the links!

Given that around 50% of POTS patients have some kind of small fiber neuropathy according to Mayo, I would look into it. I'm certainly not saying that you have it though. There are probably a lot of causes for that sort of uncomfortable feeling.

Oh and I see the exact DNA DS was on the test as well. Mine is listed as "<1" with < = 4 IU/mL being considered negative.

Yes, Zap - you got it. That is what I'm saying. I did have my complement system tested, about 2 months before this biopsy. My Complement Total (CH50) is listed as ">60 H" (H stands for high). Unfortunately, it was no more specific than that, saying the normal range was 31-60 U/mL. The primary care and POTS doctors told me this is a non-specific marker of inflammation at the time and attributed it to my exercise program. Now with these deposit results, I think it makes more sense. I have found with the almost year of researching and exploring my condition with doctors that given how poor you feel all the time, it is easy to jump to the worst conclusion (Lupus, which may not even be the worst conclusion since at least then I can maybe get on some immune suppressants and get better - but then again who wants to have Lupus - I feel awful for the people I've met who have it). Yet, it saves you some worry and such to just aggressively pursue the worst conclusion to rule it out, while believing what the doctors have previously told you if it's positive (which they've all been all cheery about how I'm going to recover with me). So, I'm definitely going to pursue the lead you guys have given me, but I'm not going to jump to any conclusions for a good while.