Zap

Hmm, this is really interesting - alcohol is also an adenosine reuptake inhibitor. As are tricyclics and Indomethacin (which the migraine neuro talked about and is also on the helps with POTS list). Thanks to Rama for the heads up on Wild Lettuce and Valerian. I need to start taking notes on all these herbs - this is gold.

Yeah, add me to the list - I want to be able to move on with my life. I'm not making any progress with the local place (being told I won't be transferred between doctors, even though I'm not being treated). I tried calling to see how long it takes to get in to some other places, and it is a YEAR at some. That is absolutely nuts - what are you supposed to do if this interferes with your ability to lead a normal life, have a job, etc. ? I understand that things are out of control with provider availability, but at the same time I'm trying to get treatment, my disability insurance is somehow able to find quacks to say that nothing is wrong with me (even though they have never seen me) AND that I could work full time, despite weird sleep problems, chronic migraines, chronic pain, etc. The whole process just wears on you, and is unpleasant from every single angle.

I have the exact same problem - more water and salt results in more trips to the bathroom. It doesn't really make enough difference in how I feel. It should be noted that a recent course of dexamethasone made me feel GREAT, like normal better great and I did a tune up on the car one of those days. I'm wondering if this means I might be a candidate for Florinef. I'm back to pain and feeling crappy again. It was nice to be reminded what I'm striving for, though!

I think that I end up deciding that I *should* feel good most of the time. This means I probably need a translator: great => wow, for once I feel decent - might conquer the world today, try to make up for 20 bad days good => crummy normal, pain you are used to, things that shouldn't be acceptable okay => worse bad => be careful if you don't want to be eaten alive If you say anything other than good, usually it ends up with a bit of awkward silence or occasionally a little sympathy. I'm not looking for sympathy though, just to feel better!

Diamond, Yeah, I have all sorts of reactions to meds - nothing surprises me anymore. Even at the migraine clinic they don't give me normal doses anymore. I'll definitely mention if I try the SAMe again. As far as I could tell, I don't think it made the migraines any different, but that was also during the nortriptyline, too. It might be different off of that. Too many Serotonin things stacked plus something else on top of it was not a good combo.

COMT is one of the pathways in the methylation cycle which breaks down NE and Dopamine into their metabolites. SAMe is used in this process as a methyl donor. I'm not currently doing anything at the moment, though I tried supplementing with SAMe in the past to see if I needed more of it. Unfortunately, I think that was a failed experiment, as I couldn't determine if the meds I was on at the time contributed to the side-effects I saw. I would like to try again without anything else that would possibly interact in a negative way. I also think it needs more research, as it may be a target area where there is a defect of some type. I was on Nortriptyline - it worked great to stop my chronic migraines, but it made me horrible in almost every other way. My heart raced, my blood pressure was high, I had an insatiable appetite, and I had bad orthostatic intolerance. This was all from a 10 mg dose, ha! I'm super sensitive to most meds, but this was a new side-effects fiasco. In theory, most of the bad side-effects are due to the effects it has on the mACh receptors. I've considered whether another tricyclic that might have less mACh activity may help me, not sure if there still would be side effects, though.

I certainly have noticed the phenomenon that getting wired can have adverse effects later on. Funny thing, though, is it sometimes helps combat the general fatigue that comes along with things, too, which may be why exercise helps some cope better, depending on what combination of symptoms come on. This is one of the reasons I'm interested in the COMT pathway, as it helps get rid of the NE. Balancing this, would in theory get rid of the "vicious cycles" because there would be proper feedback. Speaking of which, I had a really bad surge two nights ago that didn't really make sense. I got super jittery and my heart felt funny, but checking my pulse showed that it was low, like 50's low. Granted I'm on the beta - but that was bit odd, made me short of breath, too. During my reading, one article that was by Dr. Grubb talked about Hyper-POTS behaving very similarly to Pheo, given the hyperadrenergic state. I was really curious if additional alpha blockade might help this, or if this is why the Pamelor was helpful with some of my symptoms, given its a1/a2 antagonism. It goes without saying that you never treat a Pheo with beta blockers alone, so I would argue that Hyper-POTS should likely be treated in this same way. I also would think that the lack of balance in the transporter could be the reason the catecholamines surge - another example of some place where balance is critical for feedback loops to work properly. I would think there has to be a way to figure out what exactly is causing this functionality issue.

Quite possibly, I think that some of these unexplainable drug reactions are due to the body's innate design to seek balance. In some people, depending on the etiology, most of the body's negative feedback systems are working but they are missing a piece or a link in the chain. By stimulating them further, the body actually enters a proper feedback loop and is pushed to seek balance (which due to the link, may cause it to over-compensate, for instance). So in a way, the body takes the over-stimulus and tries to compensate for it. In others, the functional ability to do so may be limited and so the same med will not have the feedback effect.

Nope - haven't had anything of that sort before. I think that (and Botox) are both on the migraine clinic's long list of possible therapies that they ask if you've tried. What I'm taking now are just pills of the Dexamethasone. It's really odd for me to be sleeping better and then to be up early without feeling run over. If nothing else, I'm focusing on enjoying things this way as long as they last.

Okay, so I've been in a nasty cycle of migraines lately. So much so that I was given 1 mg Dexamethasone AM and PM to break the cycle, for just 5 days. I haven't felt this great in a long time - most of my symptoms are slim to none at the moment, and I can't believe how much I've been able to do the last few days. What I'm trying to figure out is WHY. It would seem to indicate that there is some sort of adrenal issue, or it is somehow helping suppress an autoimmune issue, or it might just be building blood volume. At any rate, has anyone ever noticed this connection before? Any thoughts on what avenues I should explore with this in mind? I'm seriously beside myself - I haven't been up for much, especially with the migraines going full tilt. However, the other day I actually worked on my girlfriend's car to give it a tune-up. I've even been getting up earlier than I have in months. I feel like my old self - which is incredible, yet I'm obviously afraid that this will all end when the pills run out. I also know that it isn't a good idea to take something like this long term, anyway, but I know it has to mean something that is worth paying attention to. Thanks for any input!

Well, I'm currently on a mixture of Toradol / Zofran to attempt to break the vicious cycle I'm stuck in (just 5 doses). I don't know WHY, but before getting these meds I decided to try an experiment. I hadn't had much luck with salt loading lately, but I decided to try it again. I was popping ThermoTabs like crazy, and it would hold off most of my symptoms until it "ran out" at which point if I took another, it would again alleviate symptoms. I have NO clue why this was working, but I suspect it could suggest hypovolemia? I'm also wondering if the Propranolol is making things worse migraine-wise more recently, as I believe it can lower renin/aldosterone. If I'm already having volume (or vascular tone?) problems, maybe something else would work better...

Hmm, did you notice any difference before/after the arsenic levels dropped? Certainly enjoy a number of dishes served with rice - though many of them are Indian and are also served with Cilantro! Seems like the cultures that rely on rice already use some of these natural aids with their foods - sodium alginate comes from seaweed, and in Japan while they eat a lot of rice, they use a lot of seaweed, too. Pretty neat.

Is there a list anywhere of the definitive tests that should be done to rule out autoimmune POTS (and therefore see if LDN would be beneficial)? If not, maybe it wouldn't be a bad idea to compile a list of "tests of significance" as a quick reference for all causes. I only have my generic "dysautonomia" diagnosis so far, but I still believe that the underlying mechanisms are the same (POTS or otherwise). I have not been given ANY reason for my dysautonomia, and I think that would be most helpful in attempting to treat it! I'd definitely be game for trying this, if there was a reason to. At least I know from my research that it won't help with migraines.

I wish there was someone close that performed ANSAR testing. I spoke with the company, though, and it appears that everyone is at least somewhat far away. If I end up travelling at some point, maybe I can get testing done then. I do think that their method is unique in the way it tests both sides of the ANS, and that is probably helpful in finding a better treatment method.

I've been really interested in this lately due to further reading, though I have never had blood in the urine. I have had a CT scan, so I'll have to see if someone can look at it to make the diagnosis. I can view the images myself, but I honestly can't see nearly as much from the CT as MRIs I've looked at, so I don't know if I'd be able to identify anything without help. I'm actually going for a cardiologist appointment tomorrow to make sure my abnormal EKG was a fluke and not an indicator of another problem, so I'm going to ask about it there.

WOW - this sounds like an incredible 180 from my experience at Froedert so far. I asked on the phone to be transferred to his care, so we'll see what happens with that - it sounds like a long, red tape, process. Needless to say my "treatment" so far has been a mess - put on a drug that's on the don't use with POTS list. The only other options I've explored have been salt tablets and exercise. I have seen little to no change from any of it. When asking about other suggested meds, I was punted over the fence back to my migraine neuro. It is really frustrating that most specialists don't treat both migraine AND dysautonomia, as there seems to be a huge crossover segment that has both and many of the medications also work on both. I want my TTT redone, as the finger blood pressure cuff broke before I could be tilted. Plus, at the time I'm not sure I was off supplements long enough to really allow my body to fully show all the symptoms I normally have. My sweat test and my QSART were both abnormal, though, so I definitely wasn't passed by any means. The QSARTs were especially wild. I'd be happy to see an NP for all it matters. I just want to explore all reasonable avenues and try what others do to see if anything can help. Out of curiosity, what other testing have they run for you? I've just had the autonomic tests, some bloodwork, an EMG, and a glucose tolerance test. I would think there has to be something else that can be checked if my symptoms are this bad.

Just a heads-up, getting in from INSIDE the department is next to impossible and Dr. C is booking out into March right now. *sigh* Also, you MUST have had autonomic testing already done, FWIW (I did, almost a year ago now).

Well, whatever was in the XR Propranolol (an excipient, one of the coatings or something else?), or the change in med dosage/frequency sent me into a migraine storm. I've been taking Imitrex WAY more often than I had in the past. I couldn't take it anymore, as I was feeling horrid almost all the time and couldn't get anything done. So I switched back to the SR version, and I'm doing a lot better. However, I seem to still be getting the migraines. Looks like I'll be calling the migraine neuro's office about this. This is exactly why I'm so frustrated at times, as I'm so hypersensitive to drugs and the least little change can set things off big-time. I honestly think that there has to be SOME way to find a diagnostic rationale to choosing migraine treatments. Russian roulette doesn't work for me and I'm sure others must deal with this, too.

I believe he did - I'll have to keep your recommendation in mind, as I'm looking for an autonomic specialist. I know there has been a lot of turnover in this area as of late!

Wow, quite interesting! It sounds like the Ca+ channel blockers appear to be effective in those with dysautonomia... and it isn't something that has been tried yet. I've also heard decent things about other anti-convulsants (e.g. Depakote) aside from Topamax. I too, used to have all sorts of GI symptoms but I'm not sure to what extent my specialist is on board with a diagnosis of "abdominal migraine". It seems that only some doctors support it as a unique diagnosis, even though my experience has definitely shown it to be very real.

And it progressed into worse and worse, yet the pain was still quite mild compared to my normal migraines. Lots of vertigo and spatial perception issues though, which isn't all that common for me. Maybe the Propranolol is interfering with at least part of the cycle of the migraine phenomenon. At least the Imitrex still worked to abort things, though about an hour later I'm just starting to feel slightly better.

I've been in a rut lately as this happens to be one of the hardest things to pin down as well as one of the hardest to deal with. I get what some might refer to as persistent migraine aura. I don't get the visual symptoms, per se, that many others seem to get as part of aura, but I do get disorientation, a bit mentally spaced out, some pain, fatigue, etc. Sometimes it will bloom into full migraine, and others it subsides eventually. It also tends to drag on for somewhat lengthy periods of time, rendering me quite useless and interfering with what I'm trying to do. I've recently been switched to Propranolol XR 60 mg to see if it helps with the insomnia that I was getting from taking my evening dose of Propranolol. Otherwise, I have been on Propranolol 20mg (AM/PM) and it has helped with actual migraine prevention to some degree, but not with the aura symptoms. I haven't tried a massive number of drugs yet (and I'm really not eager to with how many drugs I get side effects from or that just generally don't work) but I have had one other drug that was like a miracle for the migraines, and that was Pamelor/Nortriptyline. Unfortunately, though, it gave me raised blood pressure, heart rate, anxiety, palpitations, and OI. But during the time I was taking it, I had almost NO migraines and the aura was little to non-existent. So, at this point I'm a bit curious to know - is this aura something that anyone else has? I'm curious if it might be possibly classified as a form of mild seizures. From my reading, I REALLY don't want to try Topamax, as it causes mental problems quite often. The migraine "drug flowchart" goes: Antidepressant (Tricyclic / SNRI) > Anti-hypertensive (Beta blocker / Calcium Channel Blocker) > Anti-convulsant > Botox > Combination > Re-evaluate Diagnosis I'm curious if anyone here that also has migraine has had any success in treating it, and what they've used. My theory is that since the Pamelor worked so well, there must be one of its key actions that was balancing the migraine reactions (as I was having daily chronic migraine without any preventatives). The biggest stress so far is that nobody wants to treat me as a WHOLE. I've got a migraine neuro that won't treat the dysautonomia, and can't really say even I have an autonomic neuro anymore. The simple fact is the two are intertwined and meds for each affect the other in various ways. The Propranolol has been a HUGE help in lowering the racing heart problems and the anxiety that follows the adrenal rushes. I don't want to give it up, but I need something to handle the migraines AND aura both, or there is no way I can ever think about going back to work, as they were a major part of why I had to leave. So, I eagerly await input from anyone else that has a convoluted situation of this nature. Amidst this I've had an abnormal EKG, which I'd like to investigate further, too. I know there has to be some type of better answer than what I've got so far.

That's awesome to hear that you were able to be approved AND escape going through the scathing remarks and the **** of having to fight back when you feel sick. I'm currently waiting on results from an appeal myself, and was flabbergasted by the initial denial letter - it was a complete joke! On the positive side, hopefully you'll have a bit more peace and less worry as a result of getting LTD - which should help in trying to find more ways to cope and/or things to try to find a better quality of life!

One thing worth noting is that Metoprolol DOES cross the blood-brain-barrier. In a similar fashion to Propranolol, though it is Beta-1 receptor selective, which means that its action does differ somewhat. I've only tried propranolol and Eucommia bark (a non-selective herbal Beta blocker) so far, but it seems like it sometimes takes trial an error from what I've read to find the right one. I've found that the propranolol has helped a bit with some of my symptoms, but I think it is giving me issues with insomnia/sleep cycle, as I seem to easily have issues there.

For what it is worth, I was told once diagnosed with dysautonomia, that it was likely the cause of most if not all of my migraines. (Go figure, as I had been practically migraine free for a number of years and all of a sudden with no changes, I started getting frequent and then daily migraines out of the blue). I do think that the autonomic problems can trigger conditions that lead to frequent migraines in those predisposed. That said I have been responsive to somewhat common preventative meds so far, but the side-effect profiles have not been so kind to me. Still searching for some answers - a lot of it deals with your individual makeup and any specific problems.