Neshema1

Sorry to revive an old topic but Im confused. I have low stroke volume bad bad bad pots, severe hypovolemia, was in excellent shape before pots, always fainted for unknown reasons to me, but had very low Bp. Ihave been worked up ad nauseam for pots and more (I have symptoms of msa). So, my heart is normal size, not small, as Levine claims and my EP recently mentioned he heard was cause of low stroke volume. I have had mris, pet scans, u name it. I am practically home bound. I have been approved for PT, but have no recumbent bike, and have developed this weird bone problem, the mito doc thinks may be characteristic of a mito. It's really messy. I want to get in shape and help myself and do anything to get better, but I don't want to get worse. I can't find levine's protocol online & do u know abt the heart size thing?

This is a sad subject for sure. Maybe I'll share when rested. My sleep-wake cycle is backwards again. It doesn't help matters but when my sleep-wake cycle is better, still have dysautinomia. I wasn't gonna let pots run my life either and I do my best but ya know, some limitations are real & I met Christopher Reeve once & think I try as hard as he did, but I would ask him to get up and run a marathon. Some things are just not going to happen... Today..maybe tomorrow. I had an amazing life. I tried so hard to keep it as it was. Inmay have wanted to keep it, but I'm not sure otters were as determined for me as I was. Ok, I'm not making sense. I better rest. When ya can't keep up, not everyone waits. When the ppl u thought would always be there disappear into the background, it's time to let a few incredible unexpected people ciome into your foreground. Grief & loss is very painful & sometimes the isolation gives us time to figure out what & who matters most. hopefully, we become more after we get over being seen as less. Still, few "get it." im still learning my new life, & I notice little goid things i didnt used to.,yes,,i think the social aspect is abt the most painful part of all this. Feel free to pm. I don't often remember to check, but I'll try. Hugs. -a fellow traveler ps, when you share my journey, u understand my plight. Few others do.

It happened to me. I could never gain weight & gained 36% of my body wt in 2 2 wk periods. No explanation. Docs cared more when I was underwt (I'm very small boned & never looked anorexic but tried my whole life to gain wt & ate like crazy). After I had pots abt 2 years I suddenly gained that weight. I hardly think that was possible from "deconditioning" in that time frame. The docs kept telling me I looked better As my blood tests & various other tests were getting worse. That is. I began shoeing signs of malnutrition with the weight gain. I got gastropareses around the same time & lost my appetite. My vitamin d was untraceable leading to parathyroid (not thyroid) problems. This remained a problem until I finally decided to ditch my rx D2 of 100,000 units per week plus calcium 2000 u daily d for d3 from the health food store. It worked. Vit D deficiency can cause obesity. However. I have only lost abt 1/3 of the wt. It's all centrally located & I NEVER had a tummy before. I'm super dehydrated but Also seem to be retaining water. It's called extracellular fluid. My albumin levels r low & that can cause it. I have severe hypovolemia. I also have anemia. I'm on ivs cuz I'm dehydrated! It's a mess. But I recently learned I have celiac disease & gluten sensitivity (both). These cause malabsorption & I actually had this as my first dx as a baby but the docs ditched it years later (long story) but now my tests results prOve it & gluten can be cause of my d & albumin problems. Sp I'm on strict gluten free diet. I recently had the best day ive had in years after a few months ago (before finding out abt the celiac) I was told my pots seemed to be crossing into paf & msa... Bad news. Then I ended up super dehydrated & in the Hosp abt a week on ivs 24/7. I actually lost weight with more fluids. Then, I learned of the celiac which could explain many of my other health problems. So, I guess I'm saying I had to push hard to get answers, & still I'm realky not sure they care abt my wt (although if it happened to them, they sure would). When I tell a doc the oercent wt gainand ask them to cobsider how they would feel suddenly gaining that much wt, they seem to pay more attention yet no one has taken much initiative abt it. You might consider D3 if ur on D2, push to find out why your d is low and get your other vitamins & electrolytes tested along with protein & albumin. You might want io get your cortisol & hornones checked. But all I can say is I've been through it & I know it's upsetting & I'm still trying to help myself. I'm doing exercise as much as my heart can take. My hr gets very high (and seems like I'm doing aerobics all day & should be skinny!). Also, none of my meds are causing it. So, if u wanb pm me, I'll let u know if I ever figure it out. And u can let me know. Fortunstely, I was underwt when it happened so I was looking a bit on the chubby side at my heaviest but I'm looking pretty normal now, though I'd be happier if I lost 12-15 lbs. I don't want to be as thin as I was (although that was better that feeling like I was abt to drop triplets). I empathize! Please let me know if you figure your out. Btw, my cholesterol has becone very high & I don't eat fats cuz they make me sick. Good luck. SOrry to hear ur experiencing this.. Bad enough to be sick with the pots/dysautonomia stuff. Hugs!

I have pots & celiac. I have the nasty seizures that can last 2-4 hours. It is awful, I know. I was dxd with celiac at abt age 13 mos. I was on gluten free diet for years as a child. Then the docs decided it was something else, which I now know is another symptom of celiac. But, I have been off the diet for years. Every doc sees all my dxs & deficiencies (I can share if u want) and thinks I have celiac, except my GI doc. So I kept telling them I don't have it, although I am a textbook case. I now know what led my false neg test results my GI found. I recently had DNA testing & sure enough I DO have celiac & gluten sensitivity genes. Celiac or gluten sensitivity can affect all kinds of things in your body. I read some people don't even have GI issues but the other symptoms. I have GI issues AND other stuff & even gastroparesis from the dysautonomia. So, I'm going back on the glutenfree diet & hope it helps me. Gluten can be in medicine and toothpaste. It's hard to escape. But I'm determined to help myself, so I'm really going to try to follow it 100%. U can look up meds online. Most of mine are ok but a couple I need brand not generic. Incidentally, I'm waiting a mitochondrial disease workup. I noticed in a link above it mentioned mitochondrial disease. From what I understand gluten intolerance can be associated with it & many of the other autonomic disorders, like PD, Huntington's, diabetes, etc. Celiacs often report neuro symptoms like migraine, restless legs, brainfog, fatigue. Many with mito also have secondary pots. You might be interested in articles by Bruce Cohen Md. And dr boles in calif (I think) who both are interested in dysautonomia & mito. Boles only sees children but he talks about mitochondrial dysautonomia & focus a lot on GI issues. Hope this info helps. Feel free to PM me. You are not alone.

Yes, my daxor BVA was at vandy. My red blood volume was something like 35%.,..severe. My CBC is even looking bad these days. My NE also is wacky high. Thanks for the info abt the daxor site. I need to check that out. If I didn't mention before, if u have severe hypovolemia, u might want to get your albumin checked.

I've had a bad experience at Mayo in Rochester. I heard goodman in AZ is good.

I had my blood volume analysis at Vandy and it was severely low (30%). As I understand it, when blood pools (e.g. to the stomach after eating to help digestion, or upon standing POTS patients don't compensate for the redistribution of water and blood), the blood and oxygen to the brain are decreased. I imagine one might have pooling without hypovolemia, but dont quote me on that. Seems CHF causes pooling, and im not sure they have hypovolemia. Also, hypovolemia can be caused by trauma to the body and severe bleeding. Sodium co-transports with Norepinephrine. Sodium is often lacking in POTS, and NE is overproduced but not absorbed in the receptor cells of the synapse. So, we often end up in a state of hypovolemic-hyponatremic shock (there are 4 or 5 grades, I think). So, the amount of blood volume depletion is a major criterion for which grade you would fall into. I had the Daxor test myself and was kind of shocked to hear the results. I do have blue hands and feet but no ankle swelling. I have super wacky high NE levels and autoimmune disease and neuropathy. So. I think the movement away from the POTS subtypes is driven by the lack of empirical statistical subtyping analysis, and the dependence on clinical observations by the docs who see lots of patients. However, as we all know, we all differ to some degree. and that may have to do with where in the vicious cycle things went wrong. The NE and BVA and hyponatremia all seem to play off each other. So. ya know it's very frustrating for patients. IF your BVA comes back severe today, it seems clear that expansion of blood volume is a goal in tx, along with hydration. If it comes back negative, it just might mean, at this point it hasn't gotten to that part of the cycle. If your NE is high, you likely will have labile BP, and the nasty potsy seizures. I had one on the TTT. I used to pass out cold. Now I fall more than pass out completely. I tend to have the convulsive syncope, which can be quite unpleasant. They happen most often when blood pools to my stomach after eating a few bites (I know it's coming). Some ppl pass out right away on the TTT without compensatory rise in HR. Some called my TTT result a "spell," whatever that means! Regardless, my tachy goes incredibly high and I have an ILR. I'd say after being around the block with all this, I wouldnt get too dependent on any one test result being positive to prove you have dysautonomia. Mine has progressed quite a bit, and what may have been normal once, sure isnt now. So, I will go so far to say I am not convinced POTS can't kill us, but I also go to another galaxy to get help so I can help the other patients someday. And, while I am ranting and raving (sorry friends!), I (wow. POTS moment) my last point is gone..poof! Love when that happens. UGH! OK. enough ramblings. Hope something I said was helpful to someone. Hugs to u all!

i came across this thread when looking up info on the mito cocktail. so, I am kind of reviving it to see if there have been any updates. I also was suspected of having MG and tested negative. I was told I had "Adies Tonic Pupil" in about 1996, back in the days when my dx was "easy fainter." I also have autoimmune disease. My pupils do not react to light well, and one pupil is bigger than the other. Also, they have become droopy (they used to be quite big) in the past year or two. Also, I have retinopathy, among so many eye dxs that it's amazing i can see (with some blind spots & a lot of blurriness that seems to be worse at some times than others)! Light can really be bothersome. I have read about Horner Syndrome, and have heard different names for my pupil issue (sorry, having a POTS moment and can't remember the others), but they are all autonomic. but back to mito. I am supposed to go for a mito workup since my POTS has turned to PANS (pandysautonomia) and has basically hijacked my body and life, despite my protests and efforts to hang on to the life I planned..that's another topic. The docs all agree that something more is going on, be it some cross between POTS, PANs, MSA, PAF, or mito. Kind of kooky, IMHO, since it seems MSA and PAF ppl dont get tachy. but with the droopy eyes, seemed to come neurogenic bladder, speech problems, some ataxia, beyond brain fog, hyporeflexes (not much happens when they bang on my deep tendons), and all sorts of lovely things. I have a lot of positive findings, such as sky high NE levels, severe hypovolemia, and u name it. Now, I am dealing with very low resistance, and keep getting fevers that put me in the hospital, and no one knows why...even had HIV test, which was negative. I DO have EBV (as do many ppl, but mine is a form that recombines DNA and RNA, which could support the acquired mito theory). Havent had the XMRV test yet and been to ill to go for my mito workup. Tried the cocktails, and found riboflavin to be the best supplement so far. Im on daily IVs and a bunch rx meds, which I sometimes wonder if the treatment has confused my ANS more. So, to the ppl who wrote in to this thread, I'd be most interested in hearing your updates. I am a researcher turned deadbeat (sorry, but it feels that way) and am able to understand most of the medical journals when it comes to the stats and neurophysiology...most, depending on the day. Stats part is no problem. I can do advanced stats in my sleep. Connecting the medical dots is another issue. I am not sure dr cohen is still seeing adults, since he moved. I heard a talk by Dr Boles, the dysautomomia-mito pediatrician. It's interesting to hear the mito people talk about dysautonomia. I am not sure we will find many answers in my lifetime. I'd sure like to hear more from all of you.. Thanks!

Alas, one last thing. Niacin scares me. Isn't it a vasodialator? Causes flushing. Ok nite for real! Profs talk too much!

Oh & btw, my b12 was wacky high befire I went on b vitamins & it came down to 400s. Seems like my NE, which is >1600, severe hyoovolemia measured at vandy, hyponatremia, hypo this hyper that. Now the epogen already (my second try with it) causing severe iron deficiency... Blood counts been wacky. Used to have perfect CBC for such a sick Person but dig a bit deeper & find stuff like untraceable vit D, gastroparesis, neurogenic bladder, dysarthria, dysphagia, raynauds, sjogrens syndrome, adies pupil.. U get the picture. Oh and lest i forget a tiny brain lesion that doesnt explain anything, but hope it doesnt open up amd bleed. I thought one of the funniest dxs was "ataxic encephalopathy." What the bleep is that? Translation: clumsy, slurred speech, & brain kinda malfunctioning for some reason we hate to admit we don't know but bang as much as we want & no deep tendon reflexes. Oh, btw, I get daily IVS & have an implanted loop recorder. I actually got tO sit in the shower today... Finally got a home health aide from my insurance. Too good to be true but rather go on a date again before I die! Used to be quite social. Hate the isolation. Probably said that 5 times already! Btw,my reaction was to a rubella vaccine & oddly I am not immune to rubella. I won't get flu shots even. Get tamiflu to have on hand instead. Nite nite.

Wow! Thanks for all the replies & encouragement & sharing! I agree on the MCAD issue. I need to 1. Go hack and read the manifesto I wrote u all so I dont repeat myself - been brain dead from a nasty potsy seizure & b. Get some rest- did I say I'm brain dead from a nasty potsy seizure & don't want to repeat myself.. Lol! Don't forget the mitoaction dysautonomia mito mtg tomorrow at noon EST. I hope I remember! Night, friends! Xo

Cont'd (sry abt length but hope you will read, as u have time, "energy" & patience)... Even with the free weights, I'd get so sore that in college, I remember many times sitting on the grassy quad/mall with friends & not being able to get up. Now, when I fall or faint (I used to faint out cold most of my life but since I got really sick abt 5 years ago, I tend to be unsure if I fell or fainted unless I feel my heart sink & the room go dark first & I get convulsive syncope, which is those nasty seizure ppl talk abt here). I'm having one system after the other involved & wish I were a hypochondriac - we can work with that! Too many positive tests & finally, like a photo becoming clearer in a dark room, the dots are slowly being connected. Although, I believe my maternal grandfather had dysautinomia (severe headaches, Parkinsonism, sudden cardiac death, and my mom exhibits some similar symptoms & OI, I've got neuropthy on both sides of the family), but I think mine is acquired & viral as I'm pos for Epstein Barr recombinant (recombined DNA & RNa) form, and that is believed to have been passed onto me during my mothers pregnancy. Also, I had a severe reaction during childhood to a tainted vaccine, which was taken off the market shortly after I was among the first to get it & my case is documented in the state health dept. It caused lifelong problems with autoimmune disease & afterward, I had a bit of an awkward gait & never could figure out how to do certain physical activities like diving or somersaults or (anything head first & requiring much coordination), but I was a prime target for a severe reaction with my hx of health issues since infancy. I say I grew up lying on the couch. No matter, no cognitive issues until the big pots onset (one day my hr was 68 as usual despite my low bp, which I thought was a good thing -no one said that was why I was an "easy fainter."- the next day I thought I had asthma cuz I was so short of breath I couldn't get from my car into my building at work & was passing out in the middle if the busy street I had to cross (my car was as close as one could get to my building at work). My students (I'm a tenured full prof at a major Univ & ran a doc program) staged an intervention & sent me to the doc)... Well, eventually I saw a doc who knows Grubb & who is hugely famous in pacing & he dxd me in three minutes & shipped me off to mayo, vandy, & Grubb to confirm. But while all agreed, all have watched my "pots" deteriorate severely and have looked for answers but can't figure out why I have speech issues, beyond fatigue, hyporeflexes, among a long list of systemic problems- more all the time. Needless to say, my stellar career is starting to feel like a distant memory & my full time job has become dealing with trying to sit up & find help & meet my basic needs & get help with ADLs. It so is not my bag to be stuck in bed rambling abt my health on an iPhone! I used to be very "active" at my pace, always on my own schedule. Being a prof was a high stress job (contrary to common belief we live cushy jobs & play golf after making our last promotion, which I did relatively young), but being a prof also let me control my schedule & work from home or see docs without being on a rigid schedule, although I often wrote my publications at 3 AM! But the past two years I haven't been able to even teach distance from home (we tried that for a while). I was a heavy hitter in my field & now I'm reduced to feeling like an infant hoping home health shows up to feed me, change me (ok i mean help me shower & get into clean pjs or clothes, & get me a warm blanket! It ***** ***** *****! But I've found a ton of support from both the dysautonomia & mito communities. So maybe u can message me more abt your mito, treatment, docs or whatever ur confortable with. Thanks for reading & best wishes to u.

Hey todd- thanks for the quick reply. Was it all conclusive? Can u believe umdf asked me to be a patient ambassador? I'm just learning by talking to ppl, reading & participating in the online chats. Seems like they all ask me abt their dysautonomia-I know too much abt that! So I'm looking for a mito doc, preferably one I can travel to without dying from the trip. I'm really very much beyond pots, unless there is some progressive form of pandysautonomia. At this point, the big guns in dysautinomia think I either have mito or some overlap of every pots subtype, msa, & paf. The whole thing is hugely frustrating & I'm on so much medicine that I think it's made my ans completely confused & unable to regulate itself. But the thing that really makes me lesn toward mito (even though I have some classic signs of msa) is the stuff that doesn't go with dysautonomia, eg, retinopathy, consistently low creatinine (serum & csf), parathyroid issues, and my hx since infancy (failure to gain wt, delayed walking & once I started, I later stopped for a while, lifelong severe problems with aerobic exercise, despite countless attempts to build up endurance slowly - although I was successful with free weights for 12 years, but now can't lift anything without my heart going bonkers,

I read thiamine is also helpful (b1). I'm also on cerafolin NAC (rx b with NAC). also b5. These are not the usual b6 and b12 & folic acid ppl talk abt. Yes, I also have been thought to have mito but been too sick to go for my workup. So I've long been trying variants of the mito cocktails. Riboflavin is best one so far. I'm curious if anyone here with dysautonomia & mito had a muscle biopsy or genetic tests. Btw, there is a "dysautonomia mito" meeting (see mitoaction's site for info) on fri. U can call into a toll free nbr to participate. If anyone knows a mito doc near Chicago, please let me know. Thx for your feedback!

I felt horrible on ssris & snris! I even got depressed, which is abnormal for me. For me, adderall helps my vitals. But I'm on other things too, epogen, ivs, mestonin, clonidine.. When I say it helps, it's not been a cure by any stretch of the imagination. My case is pretty severe. I've reduced my dose of adderall over time & feeling I need to go back up a bit. It works like midodrine, but midodrine had worse side effects for me.

Riboflavin helps energy levels. It has an effect on mitichondria, which are parts of cells that carry energy. I'm kind of brain dead today & will try to write something better later. Ugh! Oh, but you might want to read about dysautonomia & mitochondrial disease. Two heavy hitters on that topic are dr. Boles in calif & dr Cohen at case western (recently moved from Cleveland clinic). There's a lot of info at UMDF's website.

I learned meditation & it helps to a point but there's too much Stigma in this country about taking drugs ppl need. The reseach shows people don't get addicted to drugs they really need & I think it's a personal choice to live in pain or nOT. In those with sky high NE levels, it's not due to a character flaw or so something they can completely control. What was described in the original post was written by a person with medical reasons for debilitating stress. It's a shame psychiatrists, thus patients, tend not to know of the many underlying illnesses that can cause their " mental health" issues& don't even know how to test catecholamines. Then they prescribe meds without knowing the underlying cause. The patient doesn't know there is a reason they could benefit from a medicine & it may be a simple as severe vitamin D deficiency needing suppementation, which actually can lead to quite serious medical problems.

Anyone try riboflavin. Wow, it gave me a boost of energy - not a cure but better than most supplements I've tried. I read it is good for dysautinomia & mitochondrial disease. I'm curious if anyone else has tried it. Oh, & it also is known to help migraines!

I agree abt the klonopin. Also clonidine for bp spikes. High bp and high norepinephrine (NE) will explain it. Have you had your NE levels tested? Could be hyperandernergic pots..seems to have secondary anxiety from bp & NE. not fun!

Pandy I'm another pandysautonomia person & my WBC is almost nonexistent, making me very susceptible to infection. In fact, I recently was hospitalized for almost a week with a fever of 102. This had happened twice recently. As my fever improved, my WBC got lower. It could be from autoimmune disease, which I also have, but they treat me with immune suppressants & I can't be back on tx until my WBC goes back up to minimally acceptable range. I have hypovolemia but that really affects my red blood cells. So, I also wonder what's going on, but I have a lot of weird levels of various things. The blood count and immune stuff concerns me. I really have to avoid sick ppl because getting a cold or fever is pretty devastating. Hope u improve soon. I have no answers but wanted to share.

I think that's one reason he's so compassionate, sadly enough.

I heard things are bad but I'm not sure.. It was third hand info. Anyone who has updates now or anytime, I'm sure many of us are concerned & would appreciate if you would let us know. Thanks.

Does anyone know the latest on the status of Dr Grubb's wife?

my known high was 240/204. my known low was 52/25. happened within 20 min of each other, no alpha or beta blockers. I go wayyyy high, and generally low is 80e/50s...used to be low (and lower all the time). I wonder if all the treatments have messed me up more, but now that im ona break from some of my meds (on IVs still, and epo & clonodine), my BP is all over the place & super tachy. So, I just dont know anymore. Im having "doctor, medicine, illness fatigue/burnout" right now.

PS. My endocrinologist is now testing any pots patients for vitamin D deficiency, because i was her first. Cool?!