Zap

From the National MS Society - this may be a slippery slope for us with autoimmune POTS: http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=7446 They're basically saying that studies have shown up-regulation of Th17 immune cells which cause at least some MS symptoms. Strangely enough, I was on a very low salt diet for some time. Despite the contradiction it was part of what helped me quite a bit. I've always wondered anyway if supplementing grossly large amounts of salt result in more purging by the kidneys of both salt and the water we want to hang on to. I've been in a lot of pain the last few weeks and stumbled across this while looking for some type of explanation. Love to discuss it further.

I have been dealing with this very problem myself. It is terrible - until the system is changed to not reward this type of behavior, it will be commonplace for too many of us. Those that find good doctors are lucky, as they are willing to try things instead of disclaiming all responsibility. If they aren't part of the solution, they are part of the problem - period.

I was suspecting that might be where you were going - funny thing is I had pain in my knee for a while, too. The foot where the autonomic neuro noticed reduced sensation, the heel is/was a bit numb feeling. I get the TMJ on and off over time, when it happens it drives me nuts. I've definitely had what I'd classify as migratory pain for a while now. Is there an early/mild phase before things can be detected via testing? I am curious to wonder how accurate some of the tests are - my primary happily obliged to run a Rheumy panel for me. I had HLA-B27, ESR, Cyclic Citrul Peptide AB (IgG), and Rheumatic Factor tests run. All were normal / negative. When everything comes back negative, it makes you wonder crazy things, like if they are not testing the right samples. In all seriousness, I do wonder how accurate the tests are, though. Very, very few things have ever been tested more than once. One thing I'm also curious to know, is if an immunologist will ever Dx autoimmunity of unknown cause. I would hope that, at some point, someone will be willing to attempt treatment so I can possibly return to a more normal lifestyle, even if it isn't perfect. I've had what seems like so little tried in the two years that I've been chasing all of this. I know I can do better. And speaking of migratory pain, I've got some random aches in my leg now.

Funny that you ask... One of the most common pains that I get is in my lower back (lumbar region)...... Can't say that I've really had pains in the buttocks (aside from my problems and unhelpful doctors, purely in the metaphorical sense, haha) So, of course I'm curious to know what you're thinking. I've been worked up for all sorts of autoimmune stuff, with no positives thus far.

Hmm... I've been given most of those diagnoses at one point or another. My symptoms are definitely not always constant, though there is some consistency to the fact that I don't return to what I'd call normal either. I'd say it was mostly spontaneous, during a period of very high stress though. Hmm, where do I start? I'd say dizziness/headaches/disorientation are a big one.

No hair issues here at 30 - I have enough problems, so I'm thankful that this isn't one of them. My grandfather on my mother's side had thinning hair as he got really old, but aside that still had hair. I'm wondering if one has to be prone to MPB via genetics for there to be any effect.

Rama, I actually wasn't aware of that at the time - but I stopped taking it as it started making things worse instead of better. Thought it was helping a bit at first, but I'm prone to things doing an about-face on me and causing more trouble. I've given a lot of stuff I was trying the heave-ho, and honestly am probably about the same or maybe slightly better on average, which isn't saying a lot. Still getting the dizziness and headaches often enough, coupled with strange pains (shoulder seems to be a more recent one). I'm tempted to ask my autonomic neuro what else I could try, possibly including LDN. Sick of having no improvements to speak of for such a long time, aside a few things I've discovered on my own.

Well, that was a while back now - I was never able to tolerate the SAM-e, but that was when I was on a whole slew of meds compared to where I am now. I have considered giving it another go now that there aren't tons of neurotransmitter altering things floating about in the bloodstream. I know I feel much more myself, but given the need for dopamine and methyl donors, I would think SAM-e would be the ticket. Still could be wrong, though.... but I now have genetic information available to me that I didn't before too, and I have fast acting enzymatic action that breaks down neurotransmitters, so having more building blocks should theoretically be a good thing. Considering that I'm having sympathetic fallout lately (OH, dizziness, etc.) maybe it would balance me. I wanted to give Wellbutrin a go, just for the fact that it doesn't modulate serotonin. Some of the theories I've been reading lately state that there may be excessive amounts, rather than deficiencies, of the neurotransmitters at work.

Florastor contains lactose to feed the yeast. If you seek out Jarrow Formula's version (Saccharomyces boulardii) it does not have the lactose. I have seen a lot of studies that show good results, better than a number of other probiotics - I don't have constant IBS-D, so I can't say that it has been beneficial in my case specifically. It does tend to slow transit time, though. Can't wait for REAL probiotics that contains 100s if not 1000s of strains of bacteria. They should be able to actually repopulate the gut correctly and result in amelioration of IBS all together. I'm guessing when I say they are probably 5-10 years out. In the meantime, it looks like Florastor and Align have some of the most clinical data and testimonials out there.

The "old" Sudafed (pseudoephedrine) is still available behind the counter if you sign in a log book. This was done to deter people from buying large quantities, as it was being using it to make methamphetamine. The newer phenylephrine is considered by many doctors and pharmacists to be pretty much useless as a replacement for the original. However, just recently a company has come up with a pseudoephedrine that cannot be used as a base for meth, so I would expect the phenylephrine will eventually be phased out due to this discovery and the fact that it never was a good replacement for the original. At any rate, pseudoephedrine has warnings not to be used by those with hypertension - due to its vasoconstrictive effects. I would surmise that the cause of some racing heart rates is due to the fact that the body is trying to compensate for excessive vasodilation and/or low blood volume. Correcting this results in stabilization of the heart rate. Hence stimulants (including caffeine) actually having calming effects on some of us, because they bring us back into the normal realm instead of pushing things into hypertension and over-stimulation. This would possibly indicate a lack of sympathetic activity. I've found lately that drinking tea can sometimes pull me out of a bad rut - but as I'm also a fast metabolizer of caffeine the effects wear off quickly, and it doesn't always do enough. Keep in mind that amphetamines were used as some of the original antidepressants (opioids prior to that) - which resulted in tons of people that had long standing addiction problems. Pretty scary thinking about it.

This is all quite interesting - I have asked a few doctors to test estrogen / testosterone balance (I've had testosterone checked and it was OK). They all look at me like I'm crazy - so far, no luck getting some actual numbers to ponder over. For any Simpsons fans, I'm seriously wishing I could find a Dr. Nick - at least I could be convincing enough to get whatever tests/meds I'd like to explore. I should consider myself lucky, since my primary does order most of what I ask about, and she knows enough to at least put me at ease to WHY something isn't worth exploring. I don't always agree, but could be worse. Gut bacteria can cause estrogen dominance, so ..... well, this just goes back to my post on fecal transplant and bacterial modulation of the immune system. Guess if I end up trying it someday I will make sure to ask for a male donor, as that would confer more protection against autoimmune things...

Hmm, interesting that the LDN thread surfaces again. Given my response to steroids, I am tempted to try it (if I can get a doctor to issue the Rx) - since I suspect that I have autoimmune things at play. It is supposed to be helpful with hypotension, which has been plaguing me a lot lately.

This is AKA NasalCrom / GastroCrom - for those that aren't familiar with the chemical name. If you get that many reactions to food, it is quite likely that Mast Cell Activation Disorder could be at play, and this medication has helped others that I have talked with. I tried it, but I think it confirmed that I don't have MCAD when it didn't really change much. That said, I didn't have any side effects either (and lots of meds bother me) but I also only used the NasalCrom version. The full MCAD protocol also uses both H1 & H2 blockers (Allegra and Zantac, respectively, are frequent choices). Others will probably chime in soon with more info.

I honestly feel that the "leaky gut" diagnosis is usually given to a subset of people with a number of specific ailments that seem to jive together. My theory here is that there is a common syndrome at play (which the mainstream medical seem to dismiss completely regardless of cause). I do think there is enough evidence to suggest that some syndrome is at play. The other problem is, as Rama states, that the theory as described does not seem to make scientific/physiological sense. I propose, instead, that the real cause of what is known as "leaky gut syndrome" is our common but poorly understood friend, bacterial imbalance. Allergic reactions, yeast infections, raised levels of pro-inflammatory cytokines (e.g. IL-6), nutritional deficiencies, digestive distress, autoimmune disorders. The immune system is in the gut, and when it starts to malfunction everything else can quickly fall apart. It has come up in my research, but I'm not sure if anyone here has ever discussed the emerging research on fecal transplants. Probiotics can't touch this one with a 1000 foot pole. This is a direct transplant of all gut flora from another healthy individual, into someone who is sick. The thousands (or more) of different strains of bacteria that all work in a delicate balance to keep the body operating, in a symbiotic sort of way. When one realizes from the research, just how many things the various bacteria impact, we realize how little is known about this environment. So the old natural doctors that said that all disease begins in the colon had no idea how right they were! Thus, they are simply taking a working ecosystem and transplanting it, because at this point there hasn't been enough research to figure out what bacteria do what just yet. Hopefully sometime in the near future they will be able to find a more efficient way to perform this procedure, maybe even by creating a broad spectrum probiotic containing all the strains that can be taken in enteric capsules. For now, they are stuck separating fecal matter to isolate a bacterial culture. The study at the address below has astronomically high success numbers for normal medical intervention. We're talking 2/3 - 3/4 of people seeing very positive results and many of them maintaining those results for CFS, something that, like POTS, has proven very resistant to many attempted treaments. http://www.eventscribe.com/2012/acg/ajaxcalls/postersinfo.asp?title=6110 Some food for thought.

The dirty truth comes out! Sometimes I don't think most of the doctors know what the medications they are using are capable of. I weigh more now than I EVER have. I've been off all the various meds for more than a few weeks now and have noticed a little difference, so hopefully the weight is leaving. I'm just afraid that it is going to take a while to lose it all. I had more than one doctor look at me like I was nuts when I said I thought the Lexapro made me fat. The scale doesn't lie, though. 20-30 pounds over my worst ever weight for someone that has usually been quite thin is just disturbing. It also made me tired and sleep a TON, we're talking 10-12 hours a day many days. Honestly, at this point I'll take the other symptoms over all the side-effects. At least I know now that I'm not the only one who has had these "undocumented" issues with SSRIs.

Well, isn't it funny when things cross paths. I'm starting to figure out some of underlying problems, with genetics intertwined. I've been trying Velvet Bean (Dopa Bean) as a supplement, which basically provides L-Dopa. It has helped a little bit - but what seems to be even more critical is that it ties into my research about BH4 deficiency and how it prevents formation/recycling of neurotransmitters. I know at least some of us have the MTHFR mutations - so it seems that some of the research is starting to converge.

This thread is of major interest to me, given my response to dexamethasone. I recently had a bunch of tests done by my new autonomic neuro. She has a decorated history and is definitely on top of research AND thinks that POTS is just a part of the bigger picture. My recent tests have some things finally starting to fall out-of-range. I consider that a start. I've suspected for a while that autoantibodies to the alpha/beta receptors could definitely be at play. Inquired with Vanderbilt once I read somewhere that they found them - but they weren't aware of any test panels. This is definitely interesting and the research to keep a watch on.

Sorry to hear about your situation - it is terrible to be stuck in limbo. I'm in the same boat - I FINALLY after a year and a half was able to find a doctor who thought it warranted to at least test me for pheo. I have almost all the symptoms that seem to come on in bouts of adrenal surges - sweating, abdominal/chest pain, irritability/nervousness, headache, sleeping difficulty. It is miserable. My normetanephrine was 0.71 (though it was taken at a time when I wasn't very symptomatic). I wish I could draw a blood sample (and have it tested) when I experience the symptoms to see how much things change. I think that most of these doctors, no matter how well meaning they seem, truly will never understand our plight. The ones that do have a very different approach to finding an answer, even if it might take some unconventional thoughts. I feel very lucky to have found my new autonomic neuro - she has a decorated history and wants to find out WHY I have eluded a solution now for almost two years. Granted, I've been having a lot of luck with bypassing genetic mutations lately - but it is only taking me so far. I know there is still an answer out there for all of us, and hopefully it is coming sooner than we expect. Whatever the case - please don't let the doctors make you think it is in your head. If there is one saving grace about all this, it is that there is medical proof that there is definitely a physiological problem with the nervous system - and while it may make us all look like a bunch of nutcases at times, I have found that if anything I think this disorder has made us some of the most proactive, informed, and empathetic people that are out there.

I will second this - for some time I figured that I should just accept the diagnosis of dysautonomia and feel the relief of using it to blame for my problems. I just recently had an appointment with a new neurologist who has worked at a lot of the big places, and is incredibly on top of it all. During our discussion, she mentioned things that other doctors never told me before, maybe due to ignorance I don't really know. But she did say, that I appear to have small fiber neuropathy - but that what really matters is not confirming that, per se, but finding out WHY I have it. She said that my autonomic tests, which were done in late 2011, seem to indicate mild dysautonomia - but that my symptoms are anything BUT mild. Obviously, we know that often dysautonomia is secondary to something else - but it is critical to find out the cause, because it could be much more serious or be causing/ most of the symptoms. So we have started another journey of attempting to turn over stones to see if there is anything underneath - and find out the WHY. That is the only way to really achieve proper treatment - and now I feel I've been running in circles until recently, because I was doing most of stone flipping (or twisting regular doctors' arms to check things for me). I was re-assured when we went over my two binders of test results, and she mentioned that I've done a LOT of legwork - we really are our best advocates, and we can't forget that!

It is entirely possible that this is due to excipients or dyes that are only in the generic form. From experience here on the forum and from my research, I am finding out that there are a lot of things that one can be sensitive to if the genetics fall in certain ways. I'm starting to wonder if it at all underpins my sensitivity to so many of the meds out there. I can say that I know some of these unneeded ingredients will definitely set off people with MCAD. So this can definitely be limiting as to what meds may work for some of us.

Yeah, I wasn't able to reach the link so I couldn't read more. That approach seems to make a lot more sense, logically. Otherwise, why could some have such heart rates with so little exertion. My higher heart rates tend to be just below the number in question, but that is generally not during more taxing activity either. You also said the magic words - "just get it done, push through". That was my problem for years, juggling way more than I should have to boot. That is probably the hardest thing to accept any (greatly) reduced limits. If it would be for an end goal of re-adjusting things, then I could see the value, though.

There seem to be a few different groups regarding reactions to SSRI class drugs. Personally, I am hyper-sensitive to meds. Most bother me, and I immediately know the ones that are either less severe or that don't have severe side effects. I've not had good response to SSRIs both in the past and more recently. I'm normally a very enthusiastic and passionate person, but small doses ended up making me indifferent to almost everything - basically causing some depression. I feel so much better re-adjusting, having recently titrated off. I've also started taking supplements to help bypass a homozygous MTFHR mutation. It should also be noted that my genetic data says I am many times less likely to respond to SSRI class drugs, and that if anything I would be prone to low dopamine. Given the interconnection, higher serotonin could actually further reduce dopamine levels - a very bad thing. So, your mileage may vary - if you have genetic information it generally won't lead you in the wrong direction when it comes to medication response and effectiveness. I think this is a very important piece to everyone's individual puzzle, since there really isn't a science-based explanation for the underlying cause(s) for dysautonomia. Given the throwing darts/slapping bandages approach with meds, finding the best ones is generally achieved by having as much personal knowledge as possible. I certainly wish I had this a year ago - I might be in a lot better shape than I am now, trying to regroup from the wrong meds and still find the right ones.

Excellent - more immensely valuable research that involves genetics. What I would like to know is what Dr. Klimas does to get the autonomic nervous system back on track. This also makes me (and I'm sure a number of others, as well) feel quite validated when it comes to the age old exercise/deconditioning theory. I still think that the simpler answer that a number of us were in good shape, and some very well conditioned, should have discounted it long ago, but old habits (and theories) seem to die hard.

Interesting - a surge of hormones causing onset. I suspect that this would also apply to those of us who had onsets during other stressful times in life, including post-viral and massive stress triggers. It could explain the gender bias, too. It is interesting that it also seems to keep coming back to steroid levels. Just as on the exercise thread, modulation or adjustment of these levels helps symptoms greatly, but left to their own devices they return to a dysregulated state again.

I only got my results fairly recently, long after I was researching stuff, but it is interesting to find that it is starting to tie together. COMT -/- and VDR Taq +/+ Also MAO A + and MTHFR A1298C +/+ So, from what I've read (possibly plus other SNPs) I'm low on Dopamine. I've been asking for Wellbutrin for a long time, this pretty much proves that it could be quite helpful given the low Dopamine. This also correlates with the fact that I should be getting methyl groups - so even though my B12 level was fine, maybe it was the methyl groups it (methyl-B12) donated that were helping so much. Turmeric also donates methyl groups! This is making lots of sense, but I'm wondering why it only became a problem more recently. The A1298C causes BH4 deficiency - and it means that methylfolate is required to supplement (5-MTHF = 5-methyltetrahydrofolate). It appears that this also causes issues with proteins (and resulting ammonia detox which seems to be impaired), which I've always felt bothered me. The resultant situation isn't all together too different from having PKU. The body has issues with phenylalanine, it runs low in BH4. There have been trials where PKU patients have been given BH4 to see if it helps them overcome some of the issues and have better quality of life. I'm not sure that the rest of these mean as much, as they are heterozygous, but I feel like 6 of them is a lot! Also, I'm not sure if there is an epigenetic mechanism that could theoretically switch OFF the good allele - which would complicate things a ton. At any rate, I have seen data that states that hetero alleles generally result in some reduction in function, maybe enough to slightly elevate homocysteine in the case of the CBS genes. MTRR R415T, MTRR A664A, BHMT-08, CBS C699T, CBS A360A, SHMT1 C1420T. I haven't looked much into the P450 stuff yet, though I know it is super critical too. Is there a place to do that analysis by itself yet, or a list of SNPs to check? I have a lot of data from Promethease that talks about individual drug response. Ironically, I am 7x less likely to respond to most psych drugs - most of what I'm taking is worthless for me, but I kinda knew that already. It is nice to have hard data to go back and ask for different things, though! At any rate, since I don't have any homozygous CBS mutations, I think I am cleared to take the methyl folate, though I wonder if getting BH4 (Not sure yet if it is still Rx Only) would be better. That is the bigger deficiency, and it can be taken orally BUT I don't believe it crosses the Blood-Brain Barrier, so it may not work for everything.