jem15

Ok thanks:-) Ha, yeah I don't know why doctors can't just say, "I'm not sure, or let me check".. and I always thought it was like POTS 101 to drink gatorade or electrolyte type drinks..so it's funny this guy just had no idea. Ha, good to know I'm not losing it, and I did remember that correctly. and ok, good to know about the potassium.. if it can lower it, than it shouldnt be a problem to drink the water with it in it..ha, maybe it would help. And yea I have to ask him about how often to get the potassium tested, dont want to mess around with that! Sorry to hear about the issues you had with it, lotusflower. Hope things will continue to improve for you.

Hi, I'm about to start Florinef soon. I tried to read through other posts to find out about side effects and anything to/not to do.. and it seems like the main things were.. -continue eating salt/drinking -check your BP -get your Potassium checked While I was thinking about the Potassium, I wasn't sure if it highered/lowered it while on Florinef.. and was wondering, is it still ok to drink electrolyte water while you're taking it? since that has potassium,etc.. in it,ha i think? The fellow from my doctors office called me back, but sounded like he had no idea...he told me not to eat more salt, but my doctor told me to eat salt when I asked if I should cut back the salt on Florinef.. when i asked the fellow bout the electrolyte stuff.. he was all like why are you drinking that? i'm like, instead of gatorade, during the summer, just figured it'd be better than regular water at times..and he didnt think i should drink it at first with Florinef... then after i corrected him on the salt thing.. he was like, well just dont drink more than what you're already drinking.. ha,i dont think he has a clue, and I'm not going to call back with the same question, it's not worth it. so just curious if anyone here knew anything about it?

Yes, my POTS has slowly gotten worse from year to year, for the past 16years now. For the 1st 13 years or so, I hung in there, eventhough my functioning was declining. I still pushed through school, and then work. And just had to keep modifying my jobs/activities, and doing less and less. And like you, I'd be like "hey, I used to be able to push through ____, and now I can't even think of doing that".. So I share your frustration. It's so sad/scary to deal with. In year 13, my symptoms rapidly started to get worse, as opposed to the gradual yearly worsening.. and it turned out i had cancer, "on top of things".. so that made it worse, then chemo made it MUCH worse, and eventhough it's been over 2yrs since chemo ended, I'm still not better enough to work yet, and am still not even up to the level I was at before chemo. Which wasnt a good level either, I was barely hanging on working before my cancer diagnosis. The past year or so, I feel my symptoms worsening again, and I really don't know why, other than maybe I'm still doing "too much" for me. I can't work, but I have doctors/therapies 2-3week, and that just kicks my butt. I thought I should at least feel a little better by now if the cancer is supposedly in remission. Anyway, although the cancer adds an extra variable, my condition was worsening before the cancer (and the drs say it's a quick growing one, so they say it's not the cause of my POTS being worse for so long). And my one oncologist is adamant that things still shouldnt be affecting me... my POTS dr thinks chemo would mess me up for "a while"...but I still shouldnt be getting worse.. I should at least be staying the same... I haven't responded yet to any treatments/exercise, etc... still fighting, still trying to come up with something.. but the doctors have NO answers, ever.. I'm really going to force with them again about the decline in functioning.. i have no one else to take care of me, it's just me.. so it's hard, i beg them to hang in there and help me, but drs just dont seem to want to really put forth much effort.. it's the bare minimum, i guess cause they're busy and cause they really just don't know what to do. Anyway, dont mean to sound depressing/scary..but if it helps that others feel your pain and are going thru the same thing. One thing that I still wish i could look into is the possibly of mitochondrial disease as an underlying cause for POTS.. when I've talked to people with it.. i think it makes sense.. and would explain why my condition is progressive.. don't know if any of this helps you, but hang in there! it's hard enough dealing with this condition, to also have to deal with stupid doctors who make ridiculous comments, like oh, you just need to work! Again, I feel your pain.. I've had my fill of infuriating dr experiences;-)

"Just curious though, since Vicci is so highly regarded-- what does he say is the cause of the problem? Does he provide any insight?" No not really, he doesn't have any one thing he can point to as a cause, it's all very murky. He admits we don't really know exactly what's behind everything. All he says is that he can kind of point out similarities amongst patients with these "visual-vestib." issues. Like they share similar symptoms and triggers... so he feels "experienced" in this area since he's seen a lot of patients like that, and recognizes it when he sees it. He did talk about some general causes, like if the vestib issues are more caused by the eyes... he feels this is cause of the person's lack of peripheral awareness/processing.. so when you start vision therapy, instead of starting with traditional "central vision" tasks, like for convergence, etc... he them do stuff with you that is more "peripheral" of a task. He also prescribes prisms glasses.. again with the goal of increasing the person's peripheral awareness.. then during therapy they add stuff with these "therapy prisms" which make the world look topsy turvy and that's more visual/vestib task.. my therapists added more movement/vestib activities, and that seemed to help me eventually perform better on the SOT test, though i didnt have less symptoms in daily life... and lastly they put more of the central vision tasks in. He says the vision therapy/prisms help some people alot and they like loove the prisms, etc.. But when vision therapy didnt seem to help me too much.. ( i mean i got better at the tasks, just not a huge daily life difference, except maybe i kept my balance better...and i do still use the prisms now and then to take the edge off, but there's not a huge difference with them.. like mild) that's when he said.. well sometimes these vestibular issues are also caused by either neck problems (like maybe you were in a car accident or something) or hormonal issues. And that's when i said, yea, my hormones are a mess, and i get sick with periods, etc... and that's what made him think of the light thing for me. He said it takes trial by error to try and find out which area to treat from.. but he had to rule out w/vision therapy 1st.. Anyway, I kinda know how you feel, he's talked of sooo highly, that when i went to him, i kinda expected this all knowing guru, full of insight.. adn though he understood the condition, listens to you, and knew the symptoms and triggers.. and had some new ideas, like with the prisms.. i didnt seem to get much else beyond that.. and maybe cause he's super busy, but i wasnt seeing all this extra special stuff going on with my case.. the therapists were the ones who tried to make sense of things and try different stuff.. but he also said compared to his other vis/vestib cases mine puzzles him and is different, cause i dont respond like they do.. apparently other people have responded quicker and better.. sometimes immediately after putting prisms on... ha, so if you're one of those people, you may want to give it a try again... i got the most out of , or got the opportunity to try the most things with the OTs doing vision therapy at kessler, so if you can afford it, it might be worth a shot... or even the prism glasses might be worth a shot, and there's different kinds too.. like i had one for reading which brings things "up" and helps with convergence... adn then there were the Vicci ones.. which i think brought things "in" to increase my peripheral awareness.. those i use for walking or moving around or just non-reading type activities.. Anyway, dont know if that answered your question, but ha, basically, none of these drs really know yet, so it's just a matter of hearing all the theories and seeing if there's parts of any of them, that work for you, treatment wise.. vestib migraines is another theory of why all this happens... but i personally think it's all from the underlying dysautonomia... the ANS is messed up and it affects all the other systems...if the brain signals are messed up, it makes sense that then the signals going to the inner ear, eye, wherever would be messed up too.... ah, if only drs collaborated!! they see the same types of patients, but depending on who you see, you'll get a different diagnosis/answer

Yes, it is Dr. Vicci. He is crazy expensive, just got charged $200 for a quick followup, just talking to him for like 30min... and I wasn't going to see him anymore since the vision therapy stuff didnt work, and he's always so busy, it's hard to get a hold of him. I heard really good things about him, but I didnt have a whole lot of contact with him during therapy, so i was a bit frustrated. but i figured i'd have one last followup and that's when he came up with this syntonic thing and i tried to push him to do it with me as like a "case study" type thing. And yes, i have good vision too, but the processing is messed up. I couldnt see Dr vicci for therapy, way too expensive and far.. but the Kessler Institutes work closely with him, they do his vision therapy programs. Vision therapy falls under OT.. you can see if your doctor can write you a RX to be evaluated for vision therapy or if they found anything in your optometry testing, even convergence insufficiency, you can get therapy. i actually saw another expensive neuro-optometrist before Vicci, since Vicci had a 6mo wait, he wrote the RX and I still went to one of the Kesslers and got the staff who knew/talked to Vicci. It was cheaper that way since Kessler was on my insurance plan.. don't know if that helps you, just a thought..

Thanks, yea, we'll see how it goes, it's worth a shot!

I'm still trying both traditional and non-traditional things to try and help my POTS symptoms since nothing has been working so far(no responses to meds, supplements, diet, exercise, etc yet...) A weird "alternative therapy" was mentioned by the neuro-optometrist I see for "visual-vestibular dysfunction". I was trying vision/vestibular therapy, various prism glasses, etc. but nothing has really been working. We got on the topic of hormones affecting vestib. stuff, and he said there's an alternative type therapy called Syntonics (you can look on the College of Syntonic optometry's website for more info or google syntoic phototherapy). Like some other alt. therapies, there's not a lot of official scientific data behind it, but it's one of those things he says sometimes you see results from and you know it worked. It tends to be used for certain vision things, but he was saying there's a theory it can affect the hormones and when I read more about it, I saw it talks about it affecting the ANS and balancing it. So this peaked my interest with the whole dysautonomia thing. My dr says he's certified in it, but hasnt done it in a while, but basically it's a form of color therapy, there's a special machine and like you look at various color light waves and certain colors are supposed to do certain things. He's gonna have to do some research and check with colleagues as to how to try and apply it to me on a more general level, but I told him I can be like an experimental case.. as long as it's not harmful, which it doesnt seem to be, we could experiment with it and see what happens. So I think I've hooked him into trying this, cause he's lending the machine to experiment with for free. i cant pick it up for another month or so, but just wondering if anyone ever heard of/tried this before? Ha, i know it sounds wacky, but at this point, i'm so desperate it, if it's not gonna make me worse, i'll try it;-)

Thanks for the poem, as I sit here too sick to go out to my friend's house today, ha, I can relate..i'm so angry at it.. i know to expect it, but i'm still bitter/frustrated. I've been feeling awful with the heat this week. I haate the warm weather, and when people walk around so happy and say isnt the weather great, ha, i know it's not their fault, they're normal, but i just want to scream! lol;-) Each year, I feel it gets worse for me, my body has a harder and harder time... the dizziness/faintness is at an all time high right now..though i'm never symptom free and my symptoms were still disabling in the winter, it just gets almost impossible to manage in the summer.. i already had to break out the cooling vest indoors:p Hang in there, and hoping for cooler weather soon!

I've had the same problems, every doctor saying "Not it!" ;-) What I'm trying now, ha, and I dont know how long it'll work for, but so far think it's my best shot.. I found a local neuro to try and be the "main guy" managing the POTS. And every 6mo or so, I'll consult with a POTS specialist farther away in the city. And the idea is that the two will try and work together.. the POTS specialist hasnt been great with returning my local dr's calls, eventhough they supposedly know each other.. but I'm gonna keep trying to work on that.. This setup is still relatively new. I also have my internist(pcp), who doesnt know what to do with me really as far as treatment/management goes... but I see her every 3mo to update her on what I've been doing with all my various drs.. and she's the one who's been filling out my disability forms thus far... I kinda just keep her posted on everything so she knows overall what's going on... but defer to the local neuro for treatment. when looking for the local neuro to manage things.. I called and sent info on POTS first, and explained what I was looking for.. a doctor willing to learn about POTS if he doesnt know much about it, and work with the other POTS specialist. Then went in for an appt or "interview" as I call it'-) and further reinforced what I was looking for, someone not afraid to work with me and try, and see if he still wanted the case... Like i said, it's still relatively early to tell how it'll be.. but that's all i can recommend, just calling/interviewing the docs and telling them flat out what you're looking for... i even tell them, i'll give them time to look over the paperwork, etc first and get back to me.. and to be honest if they cant'/dont want the case.. dont know if that helps you, but that's what i tried..

Ok, thanks so much Stace, good to know!

Hi Stace, Did you find Dr. Pecker to offer more or different treatment solutions than usual? or just persevere more? Just curious. And it lists him as "internal medicine"..with "expertise" in autonomic dysfunction and hypertension.. does he act as more of a primary care doctor then? or more focuses on his "specialities"? Ha, and yea, I was confused for the longest time about what Columbia Presb. was/wasnt. Then a friend of mine who's a nurse there explained to me that "Columbia Presb." is made up of the two hospitals.. Weill Cornell and Columbia.

Hi, I'm not sure how good he is yet, I've only seen him 2 times, but Dr. Weimer at Columbia works with POTS and other autonomic disorders. Another dr has to refer you to him in order to be able to see him, like you cant just make an appt. yourself. Initially I just had tilt testing/autonomic function tests done by him. Then later on, after the other dr I was working with basically gave up on me and called me "treatment resistant"... I pushed to have a consult with Dr. Weimer and to see if he'd work with my local neurologist in order to treat me, since it's not easy for me to get into the city. I hadnt seen an "autonomic specialist" before, so at least talking to him validated a lot of my symptoms.. ha, and at least he knew what POTS was, cause other doctors just look at me blankly. As far as treatment goes, that I'm still unsure about.. my local dr did his fellowship with Dr Weimer, so i thought they'd be good working together, but it seems he can never get a hold of Dr. Weimer, at least not yet. We did come up with a "plan", but ha, it was mostly based on all questions/suggestions i brought to him.. which is good that he listened, but i think he just thought i was ok taking care of myself. Nothing earth shattering though, just to try midodrine, compression stockings.. basic stuff.. I go back to him in July, and that'll be the real test of him. I haven't responded to the midodrine,etc and dont really know if there's many other things to be tried, based on what I've already experimented with. My goal is to find someone who at least wont give up, even if there is no cure or treatment i'm responding to at this point. i've been getting progressively worse for 16yrs, so i know things dont look too good, but i feel like if we officially give up, than i dont stand a chance. though he wasnt as harsh to say I'm "treatment resistant" like the other dr... he did seem to be trying to tell me in a nicer way, i might stay sick like this... he did say there are some more things we could try first though.... He does a lot of research apparently and only sees a few select patients, so it may be tricky to get a hold of him. But right now, for me, the combo of seeing him every 6mo, and then having my local neuro try to carry out the rest is my best option, since i have trouble with transportation. There's no way i could get to Mayo, ha, even getting to the city is really hard, but since I'm on disability, it's even more important I have an "expert" on my case, that can at least attest to some things.. and i figure, since he's supposedly up on research, if anything new does come out in the field of POTS, keeping some sort of relationship with him, seems my best chance.. even if he doesnt seem so amazing yet. Ha, dont know if that helps you,but that's been my experience thus far.. since there are not many POTS drs around at all, i'm taking what i can get.. and for a fancy specialist, at least he is fairly nice and civil..he lets me talk/question him..so I dont have a problem there.. I just dont know if he'll have many suggestions beyond the basic stuff as far as treatment goes.. the NYU guy, my other dr knew, and told me he deals with dysautonomia, but never hooked me up with him, he doesnt take insurance anyway, and i had previously been rejected twice by him... he didnt seem too nice from what i gathered, and i do think they mostly do familial dysautonomia, and other more severe conditions there. Dr. Nicholas Tullo is in NJ, i havent seen him yet, but some other patients on this site have reported liking him.

Marinol was prescribed to me during cancer treatment for nausea and pain.. they never mentioned any motility benefits though I had severe constipation during chemo.. but the motility issues you're talking about may be different.. anyway.. though I didnt get my POTS diagnosis till after treatment, I had POTS symptoms for 14yrs at that point.. Like someone above said, everyone reacts differently, but my personal experience was I got sicker on it, it made my lightheadedness/dizziness symptoms worse.. didnt' help with the nausea or the pain for me... and also, I saw you mentioned compazine.. that was another drug they gave me, but i never tolerated it well, got more dizzy, so it didnt work for my nausea.. then after treatment.. i read/heard somewhere.. maybe it was a presentation on OI.. oh, i think it was a link someone on this site provided, maybe it was a dr from john hopkins talking about some medicines that tend to make POTS worse.. and compazine was on there.. i knew it! my drs never believed me that it made me worse.. anyway... that was my experience.. but i agree that if you want to try it.. getting the rx is the safer way than trying unregulated stuff off the street. and then your dr can monitor your side effects more,, you can adjust the dosage..etc.. things you cant do with the real stuff

Hi, I applied for SSDI too, I've been sick since for 16years now, but have been out of work and on company disability for the past 2 1/2. I also had cancer/chemo, which seemed to throw the later diagnosed POTs for a loop, and they're still giving me a hard time. I have lawyers that were provided to me for free through my company's disability, so they've been handling the case.. It's been a while now.. well over a year, and we're still waiting to hear back on if I have to go to hearing. I've already had it denied the 1st 2times.. so a hearing is the next step and can take another 1 1/2 to 2yrs... but last i heard, they were seein one last time, if i could avoid a hearing. Anyway, when i was applying for the 1st time, they made me go for the "mental health" testing. and my lawyers said it is common practice for them to do that. especially since i'm young, etc... i was really concerned they'd somehow find a way to deny it because of that, but they didnt say it was due to that, my lawyer found out it was due to my age, but on the form they wrote it was due to my cancer being treated.. which wasnt even the diagnosis we were using, ugh!!. But Ha, the mental health thing was the biggest waste of time/resources.. such a joke.. the psych just read off a paper, a list of questions in a monotone voice.. like "do you hear voices".. "have you ever want to hurt yourself" .. "have you ever wanted to hurt others"... ha, like completely unrelated.. it wasnt focused on my health issues at all or "anxiety" even.. i was ready to defend myself fiercely, but i kinda didnt have to.. i still did a bit, but the guy was just like.. "sounds like you have a lot of medical issues to deal with, and youre doing the best you can.." i was like, yep, you got it.. anyway, they said you can request a copy to be sent to your physician, and yourself, and i requested it many times, but NEVER got it... so annoying and shady.. even my lawyers havent been able to get a copy yet... anyway, i dont think it made any difference... anyway, just know, they make a lot of cases do it, and its stupid, but it's just part of the process sometimes.. they're super tough to deal with, and funding for ssdi is down so much this year, its gonna be even harder.. and if youre young, even harder.. i even have these lawyers and notes from my doctors saying here's her diagnosis, symptoms, why she cant work, etc... and they still dont care... thankfully i'm on my company's disability thus far otherwise i'd be homeless.. i need ssdi though, cause if i dont get better, i'm gonna need insurance thru Medicare cause it's too costly to keep "cobra-ing" my employers insurance...(you can apply for medicare after 29months of qualifying for SSDI) well dont know if that helps you. though your exam might be a joke, like mine..just go in knowing how to explain yourself just in case.. explain a typical day, how youve tried and give anything to get better but cant (which i'm assuming is the case with most of us)...and just stay calm and focused.. i even commented on how i feel my "strength" is my mental health.. how remarkably, i keep a positive hopeful attitude and havent had anxiety or depression.. just wish my physical body was as strong.. but see how your psych is.. you dont want to sound like your overselling yourself either... just be honest, that's all you can do... and you can also call the Patient Advocate Foundation.. they gave me some tips on dealing with disability if i didnt have a lawyer.. so maybe they'd be helpful as you go along. best of luck to you.. it really stinks having to deal with them.. i feel ya..

So sorry to hear what you guys are going through. Cancer is enough to deal with, and it's even worse when that's just "on top of things". Though my symptoms aren't as extreme as your wife's, (I dont have fevers or super high heart rate), I can relate somewhat to your story, cause I too got diagnosed with Hodgkin's, "on top of" whatever other mystery conditions were going on. My symptoms started when I was 16 after a virus, fatigue, lightheadedness, faintness, heat intolerance, etc....they said it was probably CFS cause they didnt know what else it could be...then about 13yrs later @ age 29, got diagnosed with Hodgkins. Then at 31 was diagnosed with POTS(form of dysautonomia). In the year before the cancer diagnosis, all my usual symptoms got worse. The only really new symptom I had was night sweats, but no fevers. The cancer is supposedly in remission right now, but I still have the night sweats..with no other known cause. Also, like your wife, my symptoms got crazy out of control during chemo. I got severely dizzy, weak, faint, etc... my heart rate was often high(though not as high as your wife's) and I was not functional at all.. i had to move back in with my parents cause just sitting up took sooo much out of me. The thought was also that the "pre-existing condition", which was unknown at that time, was getting exacerbated by the chemo. I too got weird and "atypical" symptoms from the chemo.. everything I had they told me was atypical. they said people dont respond that severely to ABVD, ha, but i surely did. i got some neuropathy, but not in the form of pain, but numbness.. but what really helped for some reason was taking B12 and folic acid.. the pharmacist suggested it and surprisingly it seemed to work. Dont know if that will help your wife at all, but just throwing it out there just in case. I finished chemo about 2yrs ago and though I'm better than I was during chemo, I'm still unable to work or drive yet due to the dizziness, lightheadedness, faintness, and fatigue. And I'm still worse than my "pre-chemo" state, and even then I was having trouble functional and missing a lot of work. Anyway, dont know that this info helps you at all...but just wanted to let you know that yes, chemo can definitely piss off whatever other condition is there, no matter what the drs tell you... and i still have night sweats for no apparent reason.. eventhough the cancer is supposedly gone... unfortunately i've found drs just dont know alot... but there is a reason for this stuff even if they cant yet figure it out, so hang in there.. the fevers are a strange symptom.. not sure if that's ever related to autonomic failure or not, but doesnt hurt to ask your doctors.. the lack of sweating can be related.. i think someone posted on here once about "autonomic fevers".. if you type it in the search engine on this site it should come up.... and I think someone mentioned this above, but you might want to try applying to the Undiagnosed Diseases Program in Maryland, run by the National institute of health. Ha, i applied a year or two ago and was rejected, but they like to find cases with more tangible things wrong.. dizziness or fatigue they cant see... but fevers.. hot patches of skin... that they might take a chance on, worth a shot.. though I know it'd be a distance to travel... Best of luck to you and your wife, I know it's a crazy journey, but hopefully if you hang in there, you'll find answers one day:-)

Thanks for letting us know Benny. Glad it's working for you:-) And ok, good to know, that you were managing not too bad with compression stockings before the protocol. Helps to know and put it in perspective. I'm actually just about to try a pair of thigh high compression stockings...then they want me to try midodrine first, before trying the protocol, so we'll see what happens... Continue to keep us posted as you make your way through.

Ha, yea, I usually wouldn't just accept the blow off of the other dr's diagnosis as lightly... but for some reason, at the time it made sense.. i specifically told the 2nd guy to look for it, and he swore it's not there.. the 1st lady was quite hyper too, so i'm blaming it on that;-) Anyway, that's great the cardio knows about connective tissue stuff too, good luck with the echo!

Mack's mom- I'm curious if you had a 2nd echo yet, after the first one which stated diastolic dysfunction? About a year ago, I had an echo that showed "grade 1 diastolic dysfunction". I've had mitral valve prolapse w/regurgitation show up over the years, but never the diastolic dysfunction. The cardiologist didnt know why I had it since I'm young.. she thought maybe it was a result of the mitral valve prolapse all these years putting some sort of strain on the heart. Anyway, she didnt think I should do anything then, but said if it progresses, they use diuretics to treat it? ha, which i didnt really get, and i already pee all the time, so dont think that'd work out.... but anyway... since that dr was a bit hyper/high anxiety.. i went to another cardiologist a year later and he didnt note any diastolic dysfunction on his echo... he said it sometimes just depends on how they read it, it's subject to interpretation.. but the 2nd guy didnt think there was any diastolic dysfunction at all... and he said even if i had grade 1 i shouldnt really feel any symptoms.. cause i've felt chest heaviness since chemo, but they're tellin me it's not the heart. and he didnt think the mitral valve prolapse would cause it either..who knows... anyway,i kinda just accepted what the 2nd guy said cause i have too much stuff going on.. ha, and i rather the "you dont have it" diagnosis.. maybe when i'm due again in another 2-3yrs, i'll try a different cardio and see who he/she agrees with. anyway, i just wanted to mention that, cause i'm curious if you got a 2nd opinion, if they also saw the diastolic dysfunction or not?

I'm 32 and my functioning is the lowest it's been so far, unable to drive or work. I also was diagnosed with Hodgkin's lymphoma a few years ago and was told it was unrelated. but i really wonder about the immune component. my pots seemed to come on after a virus at the age of 16...symptoms worsening each year.. then by 29 was diagnosed with cancer... i dont know if it was just my body breaking down from trying to "push through" all those years... or if the same immune issue that caused my response to the virus.. or the same virus itself predisposed me to both conditions.. But yea, i worry about if this is what my functioning is like now.. .and the 70,80 yr old seniors i have to ride the bus with are functioning better than me,.... what the heck am i going to be like if i get to their age?

Yea, my symptoms always tend to get worse about a week or so before my period and into the first few heavy days. It's funny cause sometimes it will still surprise me.. I'll be like, why am I so faint today or so much dizzier.. and then realize period is coming soon. Sometimes even right before I get it, I'll suddenly get really hot/faint, or have a small vertigo episode and shortly after when I go to the bathroom, there's the period! it's the strangest thing.. though I hear it's common for POTS , as well as other conditions, to worsen with menstruation. I've learned the medical term for it is "menstrual magnification".

Thanks for keeping us posted, I'm super curious to see how you progress. The one POTS specialist I recently saw thought the protocol was "too extreme" , but I still may try to see if i qualify and if i cant do it, I can always drop out and modify the program. We'll see what my local doc says... i'm so desperate, i kinda want to try it, eventhough I know just going anywhere 3x a week, let alone a gym, really knocks me out. I did read the abstract of the article they published and i kinda agree with firewatcher, had some questions, and cant say i agree with the philosophy, well not for all POTS patients. And it was a small study, i think 19 out of 25 people completed the program. I'm not sure what happened to the other 6, but i wonder if it was just too much for them. It's interesting too that no other ANS abnormalities were found, cause that was one of my questions after reading the abstract. They seem to conclude patients dont have ANS dysfunction, but just small heart, etc.. When emailing his assistant Tiffany, it seems they focus on the HR piece of it. But with me, even when my HR is lower I still have symptoms. I also have several other autonomic symptoms. And may have CFS as a co-existing condition, as well as had Hodgkin's/chemo...so I'm not sure if i'll qualify or if the program helps people who have a lot going on and have been sick for a long time. I'm also curious how the patients started out.. were they unable to work/drive? or were they still functioning? I'm wondering if you have to have a certain degree of health/functionality in order to benefit... How would you describe your functioning level and most debilitating symptoms before starting the program? Anyway, continue to keep us posted as you go through the "tougher" 2nd and 3rd months...I hope your one of the cases his protocol helps:-)

thanks, i'll give it a try explaining my situation. we'll see what they say..

ok thanks, ha, just heard back from them today.. And wow, people weren't joking, it does sound hardcore.. she said you "start" with 50min, 3x a week, plus the 30min strengthening. i've currently been trying to push thru 30min total on the recumbent bike, but adding the extra 20 for warmup/cool down will be a lot.. plus i'm guessing you have to do it fast, if you heart rate has to be in a certain range.. what I do already, makes me worse, so who knows what'll happen if i try to commit to this program. I'll run it by my doctors and get their opinions on it.. i'm curious if they've heard of it and their take.. so doctors tell me to not do as much.. this one seems to be about doing more.. Oh, one other question, I dont know if you know the answer yet.. but did it say where it progresses to? like all the equipment needed , etc... cause i cant get out to drive.. so having to go somewhere 3x week will be really tough.. but i do have a recumbent bike, leg weights, and arm weights at home, so i'm wondering if that would be all i need??

Ha, yea. for me, it was kinda like I rather push thru it all and get it over with quickly since I'm already so tired.. then when I rest, I can just rest.. having to stop and start again.. it kinda dragged it out more..cause when I rest i want to stay resting, having to gear up again was kind annoying;=)

Does the THR-IEEM-POTSRegistry@texashealth.org email still work? Maybe they're backed up with the holidays but I emailed almost 2 weeks ago and havent heard back yet.. just curious if they changed the email to contact for info..