Zap

Wow, congrats on the quick decision! I'm starting to think that I need to consider finishing my application. It has to be hard to admit that it is the best decision to pursue it.

arizona girl, I have been researching my results on this genetic panel recently - and I am heterozygous on a number of SNPs, but I definitely have an issue with Folic Acid and am supposed to be supplementing with 5-MTHF. I'm currently looking at the best supplements and will be ordering some soon. There are detox issues, issues with heavy metals, and other processes with BH4. Also issues with too much protein, as the body cannot handle it, and low Dopamine levels. I presume that you may also have the MTHFR A1298C mutation? I'm eagerly looking to chat with others about this...as I am homozygous on that particular gene and have been thoroughly researching it lately.

I certainly think that while it can be controversial with many doctors, that adrenal imbalances could be a very reasonable explanation for things being out of whack. What was the regimen you used, and for how long? I know that things started going downhill for me during a period of high stress. I presume that this was a diagnosis made based on symptoms rather than tests?

Most of how I feel about this has been said - there may only be one problem, but POTS/Dysautonomia doesn't describe its cause. The only thing that will provide real treatment is a cause. What is most cruel for me, is that low amounts of steroids used to break cycles of migraines pretty much make me normal again. I could sleep at the right time, feel rested, get up earlier than I had in years without issue, not have migraines, not have pain, not feel off, eat without paying for it later - pretty much eliminate the daily amount of fear over when, not if I will feel worse. I stand between a prescription no doctor will write (albeit with risks, but which are also known) and my life as I used to know it, or maybe even better. Otherwise, I'm in pain and frustrated often - and now that I've gotten sick, I feel like beaten death warmed over. Being sick is AWFUL with autonomic problems. If it wasn't for my primary doctor, I wouldn't have even had the opportunity to run so many tests and try more things. I feel lucky by many regards, which just means that most of us get far from ideal treatment as people, let alone as patients.

I've done a number of regimens over the years - but one thing I did notice was that anytime I tried to do a parasite cleanse, I felt a whole lot better than normal. The effects wore off after a bit, but it is rather interesting to say the least. My digestive function regularized a whole lot, too. The formula I personally used had a lot of supportive herbs, so I could never tell if that was the reason or if it was actually doing something to reduce one or more types of unwanted guests. I have tried a number of these herbs over time, but never had the same results.....

Hmm, I haven't tried DHEA, however I do have the sudden weight gain problem. Keep us posted, as I'm sure I'm not the only one that this has happened to! I've had cortisol testing and it was normal at the time.

One of the many processed food ingredients I've avoided for some time now. This one is only in certain flavors, usually citrus based (though ironically not in the "classic" Lemon-Lime). At least most of the original flavors seem to have the least extra junk, FWIW. Keep in mind that the "food colors" are based off of coal tar. Another big one I wish they would do away with.

I wish I had some articles, or I'd be pushing even harder than I am now... I'll be sure to post if I find anything at all that might be useful. Ellen - I honestly think that many of us have been fed a line of BS from doctors over this. "It's probably just inflammation" to "It has no clinical significance". Nothing else has helped me to nearly the same degree. I also think that not enough have come across our conditions, so they can't realize what they don't see firsthand either.

Whoops - I should have been clearer, since Florinef is so prevalent for POTS. I had intended the poll to specifically be for glucocorticoids only (Prednisone, Dexamethasone, etc.) Florinef is primarily a mineralocorticoid (with little to no glucocorticoid effects), so its behavior is quite different.

In light of the discussion in my other thread addressing Immunology and Rheumatology, I thought it would be interesting to poll on the use of steroids. Please leave comments if there is anything noteworthy about your response to the polls, such as other underlying conditions that indicate a reason for a steroid Rx. Thanks

Well, I didn't expect that much feedback so soon! Sue - I've seen an endo and cortisol was tested (salivary samples and blood draw), but it came back normal. I was surprised, as at the time I felt like that could easily explain what was going on with me. It sounds like your response to Cortef is very similar to how I felt on the Dexamethasone. Relax - Sounds like the steroids may even help re-balance something, at which point they aren't as necessary. Now that's a solution that sounds even more appealing. I don't think I've had ANA tested yet, but it is on my to-do list of Rheumy tests. It does sound like we're running in tandem. Good luck at your appointment! ukwildcat - I know how you feel. I think that the doctors making the interpretation are as important, or more-so, than the tests themselves. Many are looking for negatives to reassure patients and tell them they are fine, but what if you really aren't OK? That's the situation that most of us are stuck in. We really just need TREATMENT - even in spite of the tests. The statistics don't lie, and it is looking like a lot of us are helped by glucocorticoids, so why not come to the realization that giving someone their life back is no different for POTS than say for Lupus, where they use low dose steroids as a treatment. We just don't have a POTS-factor test yet, but it isn't rocket science! Sue - It is frustrating to sit on the fence - like you, I greatly prefer natural methods whenever possible BUT I have come to realize that the lesser of two evils may eventually be something that gives me my life back. I'd rather have a full life, with some risks than to have a greatly reduced life with none. Besides, following natural protocols on top of any medications has a great likelihood to help the body cope with them. There are so many people that do nothing for their health, take a bunch of meds, and seem to come out fine - so if we actually try a bit to support the body, I would believe that can help reduce risks. It is interesting that the holistic testing seems to indicate one thing consistently and that you've had positive results from following it. Diamond - That is the terrible issue that I'm chasing. I've had others ask me the same question - why won't someone just let me use it, if it changes my life! Who knows if it will be another two week miracle and a moot point, but it did more than any other drug ever has. If they let Lupus patients use it over the long term, and it is fairly safe, then what is the harm in trying? I could maybe even go back to work! Money doesn't grow on trees, as sure as the disability company hires quacks to deny legit claims. I'm to the point where I don't see why we can't use it, since nothing else will work. Doctors today seem content to use negatives to push patients out the door, rather than treat them. For shame! LMG - Thanks for the information! From looking, I would say that the 2 mg is a low dose if 0.75 mg is the starting dose (the one reference I checked said up to 9 mg/day - but didn't say it was for long term use either). Sounds like you are yet another that has had at least some help from the treatment. It makes me quite curious - I should run a poll!

In the massive process of turning stones over, I've now seen an Immunologist. She ran a bunch of tests (9 vials of blood) and checked my prior test records. Everything looks normal, but I have not yet had Rheumatology work at this point, and there has to be some underlying answer for my myriad of inflammatory symptoms. It is just frustrating to sit here feeling like crap and keep getting told by all the specialists that everything is normal. And the only time anything has been off - there is no proposed treatment. That would be fine if it wasn't a life-altering problem. I can't stop thinking about the week where I took the course of Dexamethasone (1 mg AM, 1 mg PM) and I felt like myself again. I was doing car work, waking up at a normal time, feeling rested, not aching, not dripping with sweat and not having migraines. It was like a miracle. Not sure if it would have lasted or not, but it would have been worth a try I think. At this point I'd like to find a doctor who will treat the issues instead of having to focus on tests, which cost a fortune, don't find anything, and serve as an excuse to do nothing, even though I am most definitely not okay. I'm somewhat curious how many dysautonomia patients end up having rheumatoid related issues that cause and/or exacerbate their symptoms. Since I haven't looked here yet, I figure it is worth a try. I won't get my hopes up too much - they've had more than enough opportunities to become disillusioned.

I'd have to say it is a close call, but seeing as how it has been something that has practically untreatable I'd say the excessive sweating/temperature sensitivity. They seem to come along together, and trying to work on things with clammy hands or be around others and be sweating all over is just super unpleasant. The migraines have proven to be better to control, but they royally suck too. Having had them for so long, I have gotten used to tolerating large amounts of pain, I guess.

It would be greatly appreciated if you could pinpoint these specific bloodwork panels by name or other identification so that they can be more easily identified. I poked around the Mayo Labs website and I think I found the heart autoantibody panel, but I did not see any alpha/beta receptor tests. I know this was something new they were doing at Vanderbilt - is Mayo doing these tests now too? Given my almost total lack of treatment progress over the past year, I'm tempted to seek out an Immunologist or another involved POTS specialist to get more effective treatment. The 5 days I spent on small doses of Dexamethasone tells me there has to be a better answer out there. I went from sitting around to spending 12 hours doing an engine teardown and tuneup. Tells me there is something there worth exploring further even if some of the doctors don't think so. The really interesting thing I was also told is that certain autoimmune disorders, like Lupus, are treated with steroids. I don't honestly understand why there is such a pick and choose mentality out there for these types of disorders and whether they get treated or not.

FWIW, I went on Dexamethasone to stop a migraine cycle. It made me feel normal again, which was a wonderful, if short lived, blessing. Your mileage may vary. Prednisone stopped migraines, but made me sweat like CRAZY.

I've used preparations with licorice in the past, and in the past put some powder into my smoothies. Especially given my positive response in the past, I need to try using it again by itself. This is a wealth of information to read, too. Absolutely incredible how the science is coming together on some of these awesome herbs!

At least for me, I had a panel of autoantibody testing done (sent off to Mayo). None of these came back positive, but maybe they are all for other known disorders. I do agree that it seems to be some type of inflammation/autoimmune pathophysiology at the root of at least many cases, as in my own experience I had wonderful results from a tiny dose (1 mg, twice a day) of Dexamethasone. Both my migraines and my dysautonomia symptoms were practically non-existent for the entire time I was on it, and even for a little while after. I didn't really have any side-effects at this dosage, that I could tell in the short term. I had Prednisone to attempt to stop migraines previously, which it did - but it made my sweating issues worse. It was a larger dose, too, FWIW. My guess is that we have a few different "targets" at play, depending on the type of POTS involved. The recent article seems to indicate alpha and/or beta receptors as the immune targets. This makes a lot of sense for certain subgroups, and these are novel tests (not part of the Mayo panel). A lack of response, an excess response, or excess amount of triggering substances in serum - all seem like logical reactions to interference with these critical autonomic receptors.

I was put on Nortriptyline for migraines and neuropathic pain. I had the rise in heart rate, blood pressure, etc. It was wonderful for stopping the migraines - but I could not tolerate the side-effects. Everything came back down after I stopped taking it. Mind you, this was all at 10 mg per day - I am VERY sensitive to meds. I'm on Propranolol 3x per day now, and that isn't working as well, but it is helping the dysautonomia symptoms. I have separate neurologists for migraine and dysautonomia, and I'd like to consolidate. I want someone who will properly treat me as a whole.

Stephania (han fang ji in TCM) is a plant that I was once asked about - I wouldn't recommend its use as it contains large amounts of aristolochic acid, which can result in kidney failure (or other adverse urinary/kidney problems). It is only used in TCM with great caution, and it is something that is most likely only used in a formula in very small parts. Given the possible connections to kidney function/renin/aldosterone in POTS, I would take this into consideration. Andrographis increases immune function, possibly by its effects on enzymes. This herb has liver-protective effects that have been studied, too. They have even explored it for its anti-cancer effects. It has been trialed for use in colitis, so it seems to have some promise for other inflammatory conditions. This is one I'll be researching further myself, as it shows some potential! It also has numerous scientific studies showing its safety, which is definitely not a bad thing!

Well, this is interesting - I found this presentation the other day but I didn't realize it was new. From the data it looks like someone has the capability to test Angiotensin & ACE, as they have test data from a number of patients. I was planning to have either my primary (if she'll do it) or a nephrologist test my renin/aldosterone. I know that I've heard talk of some nephrologists prescribing Florinef in instances where the test data indicates it would be helpful. I wonder if there is anything else that might be helpful. One huge question this brings up, again - are beta blockers making some problems worse due to their effects, at least in some cases? Propranolol reduces renin. If one already has low renin, that can't be a good thing. This definitely appears to be making strides in the right direction. The next thing to ponder is if any of these particular issues have genetic connections that 23andme will confirm - or if they are outside what is currently tested.

Not to take things too far off topic, but Yoga has marked effects on the ANS, and specifically the parasympathetic nervous system. Both the lengthening and strengthening of muscles AND the relaxed, slow, and rhythm based breathing are why. Bringing stimulation and tone to the parasympathetic helps balance the ANS as a whole.

I've been away from work for over a year now - unfortunately I don't know how much longer I can afford to stay this way, however there has been a bit of resolution to a number of things that were festering prior to me leaving. I also still have a lot of things that are waiting for my attention still, so I can't say it has been a "vacation". That said, there have definitely been a lot of changes. I was in a chronic stress nightmare that wasn't ending, and I definitely think it made something that used to be iffy end up being a lot worse. I've learned a lot in the process, and I hope to continue being able to change things more and move on. I wish that I could say that I've improved more, but it has been quite a slow process. Being a perfectionist doesn't help things, that's for sure. I have considered a month-long, out of the country retreat as a possible help. It would have separated me from needy family members, annoyances, obligations to truly step away for a decent period. I may still do this next year, as I think it would help me find some peace and perspective.

Welcome to the "dysautonomia" club - I too have no further diagnosis, which can be frustrating. I have symptoms across all my various body systems. Some cases can be autoimmune - depending on where you're going for autonomic diagnosis, they may run the Mayo autoantibody panel. This will tell you if you have any underlying immune cause. It is a huge stress to have so many things going wrong and be told everything looks normal. The stress just makes the symptoms worse - so try to step back from it as often as you can and breathe. Being here is a major help and there is a lot of knowledge here, too. Sadly, sometimes a lot more than even some of the specialists have, so you will have to be your own best advocate!

This is what they said at the migraine office when I asked about this. Although they were a bit perplexed that they helped me sleep better - and then attributed that to possible pain relief.

Agreed - I haven't seen him post in some time. We can at least hope that he's feeling better - though it would be nice if he had some secrets to share with the rest of us!