erik

Yeah, it seems that docs don't have a full explanation of or insight into all this and how things relate to each other. One tries to treat things, like abnormal BP. Since it's one of the few visible signs, some docs expect everything else to fall in line if the BP shows normal! Not so!

My POTS stuff seems to have shifted lately. I used to have orthostatic hypotension to some degree... sometimes enough to nearly pass out, usually milder. Now I'm going through a really fatigued period but my BP is holding strong... even raising a little upon standing though I was still feeling lousy standing up and I do see some pulse pressure "narrowing" there after a bit. Have you all had shifts like this in your overall BP patterns... from dropping BP to raising BP upon standing? Do these readings fit with any particular POTS "profile" that you know of... like hyperadrenergic or anything? NEW: This evening's "Supine to Stand" readings: [font="Lucida Console"]TIME BP Pulse Orient 05:50:00 PM 123/75 55 supine 05:52:00 PM 135/75 56 " 05:53:00 PM 135/89 63 sitting 05:55:00 PM 144/100 110 standing 05:56:00 PM 141/112 101 " 05:57:00 PM 139/105 108 " 05:58:00 PM 141/119 108 " 06:00:00 PM 140/80 57 supine[/font] OLD: Less than month ago, BP dropout and approaching faint (this is more extreme drop than typical): [font="Lucida Console"]TIME BP Pulse Orient 10:02:00 AM 117/81 114 Standing for a bit 10:02:00 AM 108/77 120 10:04:00 AM 83/60 98 Fading out 10:05:00 AM 117/70 47 Supine 10:06:00 AM 125/81 46 10:10:00 AM 117/86 88 Stand again[/font] Overall symptoms are not very different, though I'm more fatigued than normal. I suppose the lightheadedness is less, only a couple brief episodes on standing lately but not entirely gone. Muscles are weak though. Been trying Folic Acid and CoQ10 on top of occasional sulbutiamine/choline/B-Vites as well as a little K + Mg daily. Oddly, I feel way worse overall... like I'm coming down with a cold at times but it comes and goes... but BP is better. Pulse still does it's thing.

I'd wait until after the DI-NET logo contest is complete... might be a design submission you want a tat of

Good to hear from you. Wish things were going better. Hope your partial return holds up and that you can make a full and triumphant return soon.

My condolences for the loss of your cousin. One consolation is that while he died unfortunately and quite prematurely, it sounds as if he was in a happy setting amongst his pets (assuming they weren't too much of a chore I've always enjoyed my pets and I knew a bird lover who loved nothing more than to be amongst her many birds even amid their chaos. I hope it was this way for your cousin. I haven't much advice on dealing with the IFs. One can take precautions and hope to minimize the occurrence and risk. Nonetheless life entails risk regardless. I think your attitude is sound and I expect a better feeling will come to you with time. I don't think it is uncommon to mourn for someone even when you didn't have the opportunity to known them directly. They are family and you have a bond with them. Perhaps your sadness is a sign that you are more connected to your remote family than you usually sense.

It's famous for the anit-emetic effects. A potential short-term side effect is orthostatic intolerance, too... not ideal for POTS but like with everything (such as coffee) one can work around undesired side effects sometimes and people tend to respond differently.

Did it sound like his "compound" is focused on a low level mitochondrial fatigue sort of thing? Like a muscle fatigue thing or a CFS sort of deal... or did it sound like a nervous systems sort of thing? Or something else? I understand he was vague, just wondering if he hinted as to what specific symptoms the compound was intended to address most directly (with the rest kind of clearing up in response).

That's a fun space-age tip! I can't think of a good one to offer, but thank you for yours.

Sounds like a Autonomic Dyslexia... very rare indeed

Good luck! I hope they can find some helpful answers for you. I am curious what sort of testing they do... please do let us know if you can.

Yeah. I've stopped short of full on vertigo (spinning) but have had bouts of lesser such feelings... things will feel like they're (we're) moving when not. It tends to be when up and about for me but has happened in other body positions too to a lesser extent. Seems to have started happening briefly and occasionally during BM's... but I don't know if that's a pattern for me or a coincidence.

Funny. I noticed the same thing 'bout energy drinks for me... Monster Lo-Carb happens to be my preference. They work better overall for me than coffee but cost is an issue. While I love the aesthetics of coffee, I also get an odd sick feeling at times like something in there isn't so compatible for me. I happen to have a supply of Taurine as well as various B's (including 1 lipophilic variant, sulbutiamine) and a few other things for similar experimental purpose. I hadn't thought of a cancellation factor to any of the stuff but that is possible... like curbing side effects. Other than guarna (which is mostly just another source for caffeine), I think the related chemicals get a bit touchy with potency or side effects other than diuretic effect, but maybe there's one out there or that can be found or formulated.

That is a serious challenge. I suppose there is a remote chance that you've developed an allergy to one of the inert ingredients of the meds??? I don't know if every detail is listed or if a pharmacy consult would be needed but it might be worth looking at to see if there is crossover between the meds that are triggering this. Just a thought. I've no idea how likely it is. I hope that this allergy subsides or can be suppressed for you.

Welcome! I'm sure you will find this forum a great place to learn and find comfort. I'm sorry for your severe symptoms and loss of functionality. It is quite a loss to you and your family I am sure. Let us hope that you are one of the folks who is able to make a solid recovery. It can happen for some. The way you describe the crying feeling onset does sound like either an aura (to seizure or migraine) or a simple-partial seizure itself. Different types of seizures can be quite invisible and also not respond to some anti-seizure meds but respond to others... or none at all. The autonomic problems, dehydration/hypovolemia itself, several meds, hypoglycemia (or extra sensitivity to such), hypoperfusions (blood flow variations especially to the brain), and it seems a great many other things can lower seizure threshold. I guess these things can also just happen from weird blood flow in the brain as we are prone to... rather than requiring full on seizure activity. Seizures can escape detection too, especially the localized partial kind like TLE. Emotional "lability" can come from many things and from peoples reports it seems autonomic dysfunction is indeed one of them... it is also reported to be common in post trauma processing and symptoms. Even if that is not the source in your case, it will likely be worth addressing the traumatic impact the illness has had on your life in some manner that you and your family see fit. There is a lot to absorb, it can take time and effort especially on top of physiological problems, and one problem can feed into another... it is almost never as simple as finding a clear cut cause & cure with this stuff. It also seems almost universal for those with autonomic problems to fall anywhere from "told you are depressed but not feeling so at all" to "having significant depression but knowing that is far from the whole story"... same with anxiety. I've gone through years of frequent crying and also dry years (I think my record is 5 years never crying or feeling much at all)... hard to say for sure exactly what's going on and you kind of get to take your pick as to medical approaches since many of us fit multiple medical "templates". I've also had what periods of seizure/pseudoseizure (hard to say which it is) that is associated with sudden intense emotion (pain or sadness) that hits in waves and kind of subsides in a calm afterward... may or may not have been tied with my POTS stuff. I have heard of people having sudden lability specifically upon standing... and one kind of assumes it is related to blood flow abnormalitites, like a syncope problem except one isn't passing out, instead perhaps the limbic system or similar is getting under nourished and going unstable. I tend to take the philosophy that it matters less what the ultimate cause is and matters more what approaches & treatments end up helping you. That can just take time to work out, I suppose. I am not too up on the head pressure and pain issues, but I think for some *very* rare cases it can relate back to cerebro-spinal fluid pressures (high or low). Its good that an MRI has come up clean for you. Glad it is not a tumor... those could tie in with undue pressure/pain and emotional lability. I cared for a relative in that situation and even though the problem wasn't epilepsy itself... dilantin was prescribed. I really hope your family is hanging in there with you. It is horrible to have extra complications from inter-family problems tied in. Please feel free to let us know how things go as you see fit.

I would say that a lot can change in the body in 25 years so it could be worth revisiting cautiously. I get a modest benefit from it overall, but like tearose have to quit it periodically to keep it "working". Also, I must keep a flow of plain water interspersed too... otherwise it can be a net negative. I haven't tried caffeine pills yet but as others mention, those could be handy to know (and minimize) a trial dose. Maybe being diligent about staying hydrated when trying could help??

Some of those are pretty far from normal... you all should see a doctor about that :) I've read stories about hypothyroid being noticeable in temperature variations... more subtle ones. Also, if the body feels cold it is "supposed to" increase thyroid activity, which may or may not happen or if the thermostat is set low perhaps an hypothyroid condition can result? These sites have some cool stuff on ANS and hypothalmus (and other stuff too). So many intricate parts & interactions and more than a few spots where things might be dysregulated in some way: http://thalamus.wustl.edu/course/hypoANS.html http://www3.fhs.usyd.edu.au/bio/homeostasi...BodyTC_Pg02.htm I don't think my temp is too far off but haven't checked in normal circumstances. When I get tremulous (almost all mornings now) I have wondered if my body "thinks" it is cold or something... or vice versa, I am cold but don't feel/know it.

Down with the gallbladders... no more bile... no more bile. Sorry, I don't even know what I'm talking about but I got caught up in the moment! Dang. That sounds quite backwards with the heart rate. Not fun. Is it now, after your body's reversal, that you're weening off the beta-blocker since you're not exhibiting the hyperadrenergic stuff anymore? Is there a chance once that is removed, that things will re-adjust and perhaps HR will start to behave modestly better? Or am I misunderstanding?

That sounds like great progress. I hope other pieces fall in to place as best they can in the future. A recliner sounds sweet... how enlightened! Happens to be where I'm most at home too... Mr. Lazee-boy Despite the brand name and stereotype... it can be a very productive device. Seems to hit the baroreflex sweet spot and things settle down nicely. One thing sunk in that you mentioned above... it sounds like he's learning stuff reasonably well when studying and the recall or test performance is more of the issue. Hopefully that will improve with the accommodations but also one consolation in that is that the key process is still happening pretty well... the learning part! It's frustrating to have test scores come up lower than they should, but there's a good chance with all the extra effort he puts in he's actually getting more out of school than many classmates! Sorry to slip in my self-pity above! I appreciate your sympathy for the issue, Julie. Hope the nephew stops being a lazy bum! (sarcasm of course . There's an odd aspect and art to being an underachiever... it can bring a certain sense of ironic accomplishment... as does surviving the gauntlet of usually well meaning folks that misunderstand! The cool thing is that things have improved so much even though not perfect. I think a great many folks have put it valiant effort and heart to helping kids maximize their potential and lives. Kudos to the parents that wear themselves ragged advocating for their kids over these complicated issues... it's amazing. You're amazing.

It seems newly approved. It's an SNRI like Cymbalta & Effexor. I've not tried it.

With orthostatic intolerance and known interstitial lung disease this condition comes to mind... I'm no doc or anything and I could be way off base, but it's one of the things that half-stuck for me (but isn't super likely): http://ghr.nlm.nih.gov/condition=alpha1antitrypsindeficiency The "false positive and negative" thing with TTT is a valid concern over the procedure but in my opinion a doctor should simply take it in the context that any other clinical presentation... look at the *whole cluster* of symptoms. If you have several other common POTS symptoms and a positive TTT that's how a diagnosis is made (provided other more clear causes have not been identified). One is not asking a doc to look solely at the TTT. In their terms, the TTT has poor selectivity and sensitivity... but the TTT combined with analysis of symptoms is better and is what the doc should use to make the call. But basically you just have to shop for a more open minded doc. Have any docs mentioned fludrocortisone? I don't know if it's contraindicated due to any of your known conditions, but perhaps it is a possibility. It can help some people at least a bit.

It is over my head, but I read about it as best I can. I think I bumped in to it as a tangent to exploring brain injury stuff, and I'm not finding my original links but below are some at least: http://www.pdf.org/en/pubs_scientists/all/19582534 http://www.pubmedcentral.nih.gov/articlere...cgi?artid=28119 http://www.iovs.org/cgi/content/full/49/8/3631 Hopefully there is a better "overview" article I can find rather than obscure research. I do think it is nice that someone is looking out for the stroke survival rate of gerbils... very compassionate, however those I knew usually were more at risk of household trauma accidents or scuffles with other household pets I hadn't heard of the eye thing before... I've heard of stroke, parkinson's and I think Fibromyalgia research into these somewhat newly discovered potentially beneficial side-effects. Antibiotics came up in the context of post lyme POTS... but if the neuroprotective factor is helpful perhaps the original harm needn't have even been from a bio-bad-boy. I don't fully understand the definition (and full implications) of "neuroprotective". My sense is that it implies two things... 1) if known bad boys are out there, some neurons can be spared, perhaps in the context of toxic-flood in injury or in slower disease processes... 2) in the context of overall "turnover" of neurons from natural degradation, some protection could skew the odds and result in "increased" overall presence of key neurons (an effective increase in "regeneration" rate where such regeneration exists to begin with).

The mumbling is a mixed blessing He also kind of mumbled sumpin bout blood test anomalies and remote possbl tumor... then said clearly "but don't worry about that" and changed the subject. I appreciate that he shares some of the speculative process and I just roll with it! Or maybe he was baiting me, doing a quick psych assessment for anxiety... who knows. Medicine is "a process" I haven't made up my mind about the choline but I think it has super mild positive effect... I trickle a little of it in my water/NUUN/gatorade-powder stream (is it already in gatorade? might be)... I assume most of it ends up directly in the subsequent out-going stream. I've tried the "bitarate" form... don't know if that matters. Don't as me what the "right" dose is... I've no idea. At one point recently, I had my first ever event of measuring totally normal pulse/BP holding steady as I stood up! That day did include choline, NUUN (for several days), high-salt/water (for months), Zyrtec-D + modest caffeine earlier (gotta watch the caffeine on top of pseudoeff cause I'll get flutter/tachy and have ). I think I had some sulbutiamine & piracetam shortly prior too. Just maybe, the combo came together and helped... I am mostly after mild energy boost/focus, "pressor" effect and whatever can make me kind of functional.I'm continuing with different variations and pseudo-scientific measurements hoping to identify potential benefit of these things! This is mostly just to keep some sanity and trick myself into feeling less helpless as I wait for more direct medical options

My brain is *intermittent* too. Does he happen to have a few especially good hours at a certain time? I've gone through phases where the AM gives me an hour or two of feeling normal... and times when the evening supplies a few hours of normalcy. Does he have a pattern like that which could be taken advantage of? Would his teachers allow him to take tests 'ad hoc' like on his own call... or on his own schedule? Is temperature a factor? It is for me. I just read my first book in 20 years (first since dropping out of college)... it took a month and I had to run my A/C constantly and alternate between coffee, naps, walking, laying down, crying... like a crazy ritual... but A/C was key. I will go into instant daydream mode when warm (or back in the day when in school... if the female classmates were provoking a more general warmth Could he get a quiet A/C environment for testing? Could he take a nap just prior... sometimes I get "clearer" briefly right after a nap. I don't know, I'm just brainstorming... back in my day there was no such thing as "accommodation"... we just became losers and learned to like it. He's lucky to have you as such a good advocate. I am envious.

I got fludrocortisone scrip from my primary care doc from simple Orthostatic Hypotension test and he even mumbled something about an acetylcholine thing (so I assume he was contemplating Mestinon)... I imagine you are hoping for more or different meds than that but it could be a start for you (if you hunt for a compliant GP/Internist). You'd probably end up stopping it later for more testing. Just a thought in case you do end up waiting. Other specialty centers can take a while too. Isn't like a year wait typical at places like Mayo or Cleveland??? I don't know but I thought I heard that. This is a NO NO but I fake a "pressor" effect with pseudoeffedrine & coffee (but those are very problematic and not for everybody... not even good for me but I manage)... I hope that midodrine works for me later when I get my hands on it. I've also taken Adrafinil (the predecessor of Modafinil) which one can legally acquire without a scrip though it cannot be sold here in US nor prescribed by a doc. I've supplemented with choline to maybe get a little acetylcholine boost (like super mild Mestinon effect). I've done these things less as treatment and more as a clue as to what meds might help me in the future... but also out of impatience. This info/confession is offered without warranty

I've taken fish-oil (and some flax oil) to various degrees and periods of time (usually as the "good fat" portion of a fat restricted diet). It's touted for helping weight loss, epilepsy, depression, whatever... even being somewhat neuroprotective. I didn't notice anything profound but it might help overall and is generally accepted as being beneficial to stuff like cardiovascular health (though who really knows). It kind of won me over and I tend to be a skeptic on most stuff. Some "regiments" that showed benefit in research are rather high quantities which gets expensive though. I tried that for a bit and I sensed that it was kind of good (but I was doing plenty of other healthy things too). Also, after the initial week or two of "pain" I tend to operate better when in metabolic weight loss mode... hard to describe. I got goated in to trying L-Tryptophan in the 80's just before it was pulled from the market... don't get me started on that issue... people insisted I was depressed when it was more/different than that and I'll never know if/what damage came from that venture I did not want to take. Supplements are virtually unregulated... meds have known bad effects... I personally deal with known bad things better than unknown bad things. YMMV.