jem15

Ha, this is so funny that you mentioned this.. believe it or not, I did attempt to try her program years ago.. .maybe over 6 or 7 yrs ago, after reading about her in one of the CFS magazines. Before the recent POTS diagnosis, for years they just told me it was CFS. Anyway, she's out of CA, but I spoke with her by phone/email... and she sent me instructions in the mail. I didnt realize she was still out there doing this... I dug into my files and found I kept a little packet of stuff she sent. She used to be with something called the Workwell foundation.. the website was www.workwellservices.com Ha, but when I tried that now.. the screen was blank.. but the title said something with "porno" in it.. ha, so dont know what happened there. I actually still found that I had her email: staci@workwellfoundation.org but dont know if that works or not either. Anyway, I cant remember why I didnt stick with the program for too long. I cant remember if i thought it wasnt doing anything.. or if I just wasn't consistent with it due to working and feeling sick already... I do remember touching base with her by phone a few times.. but sorry, cant remember much... What I do remember vaguely... was that the philosophy of the program, was designed to try and avoid the "post-exertional malaise", that CFS-ers experience.. Now I hear POTs people mention that too.. .so it might be beneficial if you are currently doing no exercise and want to work up slowly. I cant remember exactly what it meant, but she called it an "anaerobic exercise program".. and the basic idea was, that patients cant just exercise all at once.. something with the aerobic/anaerobic thing.. and basically she felt we quickly go into debt.. and the more we push it, the worse we get..so the program had you do a simple strengthening exercise.. .then stop and rest for at least a minute in between or until you feel "recovered".. and then slowly start again.. It went very slow.. with very few reps and rests after each one... and very few stretches... they didnt want you doing alot.. or increasing it soon... gradually you would, but not by much. Ha, eventhough I always feel too sick to exercise and feel even worse when I do.. I remember kinda being inpatient with it.. wanting to push it more, then crash.. instead of starting and stopping each time... I wonder though, how i'd respond to it now.. i"m much more committed/consistent with exercise since I've had to be on disability.. i force myself thru, even though i feel so ill, in hopes that it will help.. i've been doing it for over a year now.. the recumbent bike and leg strengthening, with no improvements yet. I was just looking into seein if i could try Dr. Levine's thing. but maybe if it doesnt work out.. i should change it up and see if somethin like this would work... I seem to gain no endurance from exercise and always feel sicker with it.... I wonder if it's cause i'm just pushing too much and have to do the kind of exercise she describes, at least first. It would be interesting to talk to her again, now that she's been doing this for years... it was relatively new when I contacted her.. or at least it was just being recognized more.... curious to see if she's learned anything new or has had success with patients... Let us know if you contact her. I'm curious to hear what she's doing these days.. And maybe less is more... maybe that's why I havent improved yet... who knows;-)

I agree, there's a connection here, and that for some reason doctors haven't explored or mentioned much, but it seems logical that somehow things are related. The vestibular nerve is just that, a nerve, so it seems likely that there's a neurological component. But is it and inner ear thing causing the autonomic dysfunction.. or the autonomic dysfunction causing problems with the vestibular system? or are they both interrelated? ha, who knows... i wish i had a good doctor to explore it.. but in the meantime I've just been trying to do that myself. I got 2 very different opinions from ENTs that were "neuro-otologists". I've seemed to have the best luck so far when the "neuro" prefix was put in front of specialists, like "neuro-optometrist".. or "neurophysiologist"... So I figured that would be the best kind of ENT to look for, and they are the ones that deal with dizziness. Though I havent found out anything too earth shattering yet... there are some "things that make me go hmm"... Like when my ENG results were a tiny bit off.. they said that could be caused by a virus, that damaged/irritated the vestibular nerve. My POTS symptoms came on after a virus.. so I wonder if the vestib. nerve was affected.... He said in some cases, they give you a month of Valtrex, and sometimes that heals the irritation/symptoms.. Ha, probably a long shot, but can you imagine if that worked? i might just ask to try it.... The other popular diagnosis is vestibular migraines... and it seems people with this are sensitive to a lot of sensory stuff and movement, etc... but again.. is that just a symptom of the POTS or it's own thing? The other thing is that the vestib/vision systems arent processing things right.. which again is like a neuro type problem... but again, which system is causing which? I just wish doctors put half the effort thinking about things, like we do, and maybe we'd be getting somewhere;-) I go for a brain MRI that focuses on the inner ear tomorrow.. then to the ENT Wednesday... we'll see what he has to say.. but he was the one stuck on vestib. migraines... but when thinking of treatments.. i'm wondering.. would treating the POTS, help the symptoms... or treat the "migraines" if that's what they are.. and do the POTS symptoms subsides... Ha, confusing... but there's a lot of overlap, that I'm learning to be very true.

Oh, and one more thing to check into, depending on the size of your employer (cause it doesnt apply to small employers), the FMLA(Family Medical Leave Act) may be something to look into, regarding finding out what protections apply to you... i think it might be up to 12 weeks off? where your job and maybe even insurance are protected. I cant remember the details, cause i worked for a small employer , so it didnt apply to me.. but something work looking into maybe. The Patient Advocate Foundation might be worth giving a call to, they will do an intake and give you free advice on disability/insurance issues, if you need it.

"Ever Gonna Get Better?" ... that's the million dollar question, I wish someone could tell me the answer to;-) I've been getting worse for almost 16yrs now, and unable to work for the past 2yrs. I've tried the usual salt, exercise, betas(which also made me so much worse), and currently mestinon, but nothing has worked yet. It seems recovery just depends on the person, everyone is so different in their responses, and also on the doctor(s) treating you. So many are clueless, so a large part of the battle is finding the right doctors, and it's something I'm still struggling with. As for disability/working, definitely a personal decision based on your body. You know what you can/can't tolerate based on your condition. I pushed for years, and finally 2 yrs ago, couldnt do it anymore. I had been switching/modifying my jobs for years, from more physical things like a teacher, to more desk jobs like a case manager, then to no traveling, etc... If you're already doing the least strenous work, and have to stop working, i wouldn't recommend just quitting, but finding out about your states temporary disability policy first. Cause who knows, you may get better by then. In my state, that can last up to 6mo. Also, if your company has a disability policy, you should find out about that.. my company had one, that you could apply for, when the temp.state one ran out. You can also find out about SocialSecurity Disability. They are the hardest to work with in my opinion, and take the longest, but if you cant work long term, you need to at least try for it. Unless you have another means of income or insurance. I'm single and doing this alone, so it's essential for me to access whatever i can. I'm currently on employer disability longterm, but they also make you try for for SSDI. I'm still appealing it, they said it can take another year or two just to get a hearing date. And if you do get it, it's 29mo before you qualify for Medicare! That's the main reason why I need SSDI, for the insurance access, cause currently I have to pay to continue my employers insurance, and i wont be able to do that for much longer. As for recumbent bikes... I got a small one from Sears a few years ago that I'm happy with. It's called WESLO pursuit 360R. It was $100. And it just takes double AA batteries for the display screen, to show you the time, calories, etc. I dont have to change the batteries that often, but the bike works without it, so you can always time yourself by looking at a clock. I've been doing the bike and also strengthening exercises for over 1 1/2yrs now, and dont feel any better, but hoping it's helping on some level. It may have lowered my HR overall though. My resting HR is normal now, so that might be why. I'm still symptomatic though, despite a lower HR. Hang in there, it's a long crazy road sometimes, but for others, sometimes I hear a story of "recovery" or at least functionality again. Most of the stories I've read seem to be from people dealing with it for a shorter time, like a few years or less. So you're catching things "early" , ha, believe it or not. So maybe that will work to your advantage. Best of luck!

What's "Greens First"?

Yea, just cause we don't know of a "cure" yet, doesn't mean we never will. that's why I get annoyed when doctors give up so easily, we'll definitely get nowhere if we don't try. but yea... alot of time, research, and perseverance has been spent just to get myself to where I am now...it's only now that I'm starting to get some sort of diagnosis, and am starting to gain some insight into the mechanisms that are off in me... so it seems premature to just say oh well, cant be cured after like one medicine, when it took 15yrs just to get some diagnoses... And yea, I'm trying the supplement thing again too, i've tried alot of alternative stuff before but it never worked, but now I'm trying again with an internist who does integrative medicine/testing... and she just started to try and tailor some supplements to me... i'm starting with some concoction for adrenals that has licorice root... which supposedly works similar to Florinef, which I never tried, but I rather try a more natural altern. to it anyway.. and giving Coenzyme Q10 another shot. we're going to give it 3mo to see if it works or not... Anyway, hang in there everyone. It's crazy hard, but I guess we got to keep fighting.. ha, I wouldn't be surprised if the cures for POTS and CFS are going to be discovered by patients like us who are mad, frustrated as **** and are not going to take it anymore;-)

Since vestibular migraines is being thrown out there again as a additional/related condition and I'm still experimenting with medications for POTS,(havent found any to work yet, currently on Mestinon but it's not yet working), I was wondering if any of you found a drug that they try for POTS, and that also is used for migraines... I know betablockers are used for both, but i've always done horribly on them. Anyone know of any others? I hate being on meds and tolerate them poorly... so if I go along experimenting with the migraine theory again.. i was hoping to find another "2 in 1" drug... but only knew of betablockers.... the guy who might treat the vestibular migraines wanted to try Calcium Channel Blocker... verapil? cant remember the spelling... and I cant remember if anyone here mentioned that as helping the POTS too? Just curious, of course i"ll do more searching online when I'm up for it.. but if anyone had experience with a drug that helped both?... or even if anyone found a drug just particularly helpful for vestibular migraines? I know they do use the same preventative drugs for regular vs. vestibular migraines... but i'm curious to hear from someone with vestibular migraines if anything in particular worked for them.

Lol, funny poppycock was ok but ***** got bleeped. Hehe..sorry

Thanks everyone for your replies:-) Yea, I know I have to "pick myself up, dust myself off, start all over again".. like that song;-) Ha, I just feel after over 15yrs, I'm pretty dusty;-) But know I don't really have a choice, if you don't move on and keep looking and trying, then youre guaranteed not to get better. I run on hope, and it just ***** when doctor after doctor takes that from you. I wish I could find the, "we've only just begun to fight" doctor.. a decade and a half and still looking... but hopefully will find him/her one day... I have looked at the dinet list , pretty much ran through it, but the one Columbia guy on there is who I'm going to try and get in with now. I found a local neuro who supposedly knows him, but has been trying to reach him for 2 months, so not sure how it's going to go.. but if I can get them to talk/collaborate it might work out.. I figure even if I've tried a bunch of meds and nothing has worked... hopefully a guy who does or is up to date with the research will know if/when something new comes out or if there's a study to participate in. Oh and I tried dr. stewart a few yrs ago when i was 29, i was rejected, at that time, 29 was too old for him, and i was referred by a good friend of his, and i talked to him personally, and he still rejected me. Ha, now he opened up his studies to 29, but i'm almost 32. argh!! And yea, CFS was always thrown out there too, as well as vestib migraines, and so if that's going on, or if there's some other undiscovered condition causing things... that could be why I havent seemed to respond to things yet.. thanks everyone for your support, and crossing my fingers I can get in with the autonomic guy at columbia, and have him collaborate with my local guy for treatment... we'll see!

I know what you mean, about finally feeling like you may have an answer, but then being afraid that if the testing was borderline you'll be back where you started again. That's kinda where I was... The doctor pretty much diagnosed me in his office based on symptoms and borderline heart rate increase. And when I went for the official tilt testing. I was one beat off from the "diagnostic criteria". So 29beat increase, instead of 30. I'm struggling to get disability and was afraid this would hurt, cause in the report, the doctor wrote "suggestive, but not diagnostic of POTS".. to my face though, he said this is probably what I have and would pursue treatment in that area. He also wrote later in the report, there are "other factors that support the diagnosis, despite the less than definitive degree of tachycardia".. With the autonomic function test results, there are some patterns common to POTS, also I think based on symptoms and history, things like if your feet turned reddish/purple during the test, as well as associated things like having Mitral Valve Prolapse and sensitivities to medicines. All this paints the POTS picture he said. And the other doctor who diagnosed me, gave me a note, saying eventhough the testing was technically borderline, it's a clinical diagnosis based on several things, etc... and when he retook my heartrate at another time in his office, it came up 30, 32, so he added that in too. Don't know if that info helps you, but figured I'd share, cause even before the tilt testing.. with the dr's in office borderline increase of 27-29, he already wanted to start me on Mestinon. So something to consider would be if the doctors dont have any other ideas, are there treatments they'd feel safe having you try, and seeing if you respond? Of course if you don't, it doesnt mean you dont have POTS. I havent responded to any treatments yet. But if youre one of the lucky ones who do respond to diet, exercise, meds.. maybe they can still try it without the exact tilt numbers. Good luck!

So when I asked the dr who finally diagnosed me with POTS,"what's the next step if i I don't respond to the increased dosage of Mestinon?"....he basically said your condition will be considered "treatment resistant" and "you have to adjust your expectations". Now I understand there's no official cure, and sometimes people don't get better and stay disabled... and that I've already tried Beta Blockers and anti-axiety/depressants in the past and none of them have worked and usually they make me worse..... But still... is there really nothing else to try? I thought I read somewhere about stimulants like Ritalin being tried... or if even there is no meds... does it mean you just give up and leave the patient with nothing to try? I know I cant expect any POTS miracles and I may be sick forever... but it gets me sooo mad for doctors to give up so quickly... I don't have the luxury of walking away from this, ha, neither should they;-) they're doctors... i think it should be their job to at least make an effort, even when they dont know what to do.... there's no researching.. there's no talking to other doctors... there's no educated guesses to try their own things, whether pharmacological or not... Argh! Anyway, sorry, guess this is more of a venty post.. but just wondering if any of you out there who have seen "POTS specialists" or "autonomic disorder specialists", if they've used the term "treatment resistant" to describe you or what happens if you dont respond to some initial medications... Though this dr was the one to diagnose me after 15yrs, his main expertise is sleep medicine... so i know i need to try and find another doctor... it's just the pickings are slim.... the only other autonomic specialist that's around but not easy to get to is in NYC. I'm guessin I'll have to try him again.. he did my initial testing.. but I've been let down by every doctor i've seen so I know I cant expect much. I seen a ridiculous number of doctors, probably over 50 and still have yet to find one that will tough it out and at least hang in there trying to treat me....if any of you are from the NJ/NY area and found any doctors willing to put in some effort, please share! :-)

I need at least 180mg, and sometimes even more.. Thanks, good to know.. maybe there's still hope for the Mestinon working for me:-)

I think it depends on the person. My level was 7 too, like Christy D's son. I was put on the 50,000IU pill 1week for 8 weeks, it brought my level up to normal, and now I take 2000IU to maintain, but I have no difference in fatigue or any symptoms. And I really was hoping I would! If anything, my fatigue and other symptoms have been growing worse, ha, so who knows..

Both doctors I've seen for POTS wanted to me to give Mestinon a good try. They said it's one of the more recent and "progressive" ways of treating POTS. Generally, I don't tolerate meds well at all, beta blockers never worked for me, along with many others. Surprisingly, I've been tolerating the mestinon with no obvious side effects yet. I have been slowly working up the dose using the syrup form since June. Started with 30day, to 302x, to 45/30, to 60/30, and now to 60/45... Ha, Only problem is I'm seeing no change in symptoms whatsoever:-( I think the drs said if tolerated, to work up to 60/60 or 180 before giving up.. Anyone not notice a difference doing 60 2xday, but find 180 work for them or the timespan work for them versus the syrup or regular 60mg pills?? And which symptoms improved? I've heard stomach, but anyone's faintness, dizziness, fatigue go away? those are my most debilitating symptoms keeping me from working..

I agree, I really think there's a connection cause too many of us have similar issues. I'm curious how many of us with these vestibular issues had POTS onset after a virus? I mentioned this to dizzde in a PM, but thought I'd share...the ENT I just saw said sometimes if your ENG comes up off in the caloric portion(water/air) part, it's possibly a problem with the nerve pathway. I asked what causes this, and he said usually a virus.... so I'm wondering if it's the virus itself that messes up the ANS and inner ear structures... and/or the dysautonomia resulting from it, that further causes the signals to be screwy.... I went undiagnosed for so long, and now in the past 6mo, was told I have POTS, possible inner ear issues due to the ENG and ECOG results(possible fluid problem), and also "visual-vestibular" dysfunction, which they describe as a problem in which the brain processes info from the sensory systems. Other than the fluid problem, it all seems plausible that the same wacky ANS is messing up the signals throughout the body, causing all kinds of fun. I desperately am trying to get these drs to talk to each other, but of course they don't. It just seems so obvious there's some sort of correlation there... even if it's just related conditions or whatever, I dont know how drs havent noticed this yet. Also, the ENT said, he notices patients with inner ear issues tend to have similar "syndromes" of symptoms including visual symptoms and fatigue. so who knows what is causing what? Another interesting thing is when I'm at therapy, and they're taxing my vestib/visual systems with a challenging activity, it's not cardio, but i'll start to get hot and faint, and sweaty... so i dunno.. some reflex being triggered there... again makes me think there's a lot of overlap in how certain systems relate to each other. ha, dont know if any of that made sense.. but just some thoughts...

I TOTALLY feel your frustration! Ha, it's like the post was written by me. I don't have any helpful advice, but unfortunately share the same experiences and it's sooo frustrating! So just letting you know i feel your pain. I have to be my own doctor and I'm sick of it, and feel I can't do it for much longer. I have so much on the line though so it's scary, and as tired as I am, as much as i want to give up, i cant yet, cause then I know nothing will happen. I try to get the drs to talk, and they won't, and youre right, you as the patient are left to weed through it all, figure out who to see, what to do, etc.. even some of my doctors agree I'm my own internist.. it's crazy. they seriously should be paying us! then i wouldnt have to worry bout disability;-)

My experience is similar to that of Dana and JanetM. Onset for me was at 16, after a virus, and I've been getting progressively worse since then for 15yrs now, to the point where I havent been able to work or drive for 2 yrs. I was just diagnosed this year, but inadvertently had tried some treatments for POTS over the years. Like Dana mentioned, the "POTS" doctors I have now don't seem to have many suggestions other than the typical meds, salt, etc.. and if that doesn't work they have no other ideas. It's even harder to find other "non-pots" doctors to help, as you guys know, and of course they know even less. I've also tried exercise, especially in the past year and a half, was extremely consistent with it, despite feeling worse from it. I used the recumbent bike, also added more strength training with weights, etc... and never got better. Actually I'm probably getting worse. So it's frustrating when I hear teens and post viral POTS people have these amazing recoveries supposedly, cause I haven't found it to be true, and I've tried soooooo much! I wonder why I haven't been so lucky? I'm facing serious financial issues/ability to continue to support myself, keep insurance etc, and despite desperate pleas to doctors, they have no ideas and aren't helpful. In fact, many say what I have is very hard to treat, and basically say there's not much I can do. I keep seeing dr after dr hoping to stumble on something to help me, but if it was so treatable,and so many people improved, i dont know why so many of us still seem so sick and have so much trouble finding drs to help us. Maybe it's cause of other unknown related conditions.. who knows.. I've read the articles too that say many improve.. and I was so hopeful at first.. but I'm struggling so much and getting nowhere.. so I dont know... ha, maybe that means I'm just in the smaller percentage that doesn't recover? I think I remember reading somewhere 20 or 25% stay disabled??? Maybe the people that recover are those who get diagnosed/treated right away??? Maybe it depends on how their POTS presents? like the specific symptoms they have?? It doesn't say... Anyway, I still have to have hope, but it's hard, I havent found a treatment to work yet, or found that a majority of people get better when talking to my doctors or others online. Hope for someone's sake the articles are true though:-)

Hmm..interesting, I'm not familiar with the cervical issues/topics. I don't think I have any cervical problems myself, ha , but who knows. I think I had a cervical mri done years ago... So I'm not sure how or if the vest relates to that. I'm only familiar with it's use for people with sensory issues. But you never know, the same treatments work for different conditions sometimes, maybe a PT would know better?

Hi dizzyde, Glad my post could be of some help. And it's helpful to me to hear your post as well, I always like to know what others are doing/finding with similar symptoms. (Oh and first, before I forget, it's a neuro-optometrist that I had seen, as opposed to neuro-ophthalmologist... the first is the one that deals more with vision therapy and functional problems eventhough your eyes themselves may be "healthy" and eyesight fine... that's the one that picked up my vision issues, not the opthalmologist, who would deal more with conditions, diseases, etc.. that affect the eye) So to answer some of your questions/comments...(and sorry this is long, but ha you dont have to read it all if you dont want, but in case youre interested..i know i would want to know everything if it was me;-) so i'd figure i'd share) I also have not responded to Mestinon yet either, still trying to increase it though for now. And always responded poorly to betablockers.. not sure what they'll try next. I've had some true spinning vertigo, occasionally lasting for hours, but that's more rare for me, it's usually the constant lightheadedness boat feeling, and dizzy imbalanced feeling. Before the POTS diagnosis, "vestibular migraines" were mentioned to me as a possible diagnosis. It didnt explain the other POTS symptoms of faintness, fatigue, heat intolerance, etc... or why my symptoms get progressively worse each year... but the doctor thought possibly it could all be migraine related, and yes, you can get the symptoms without headaches. They tried me on Topomax, but it didnt do much, and it was hard to tolerate, and they kept just wanting to increase it, but it's a strong drug and I wouldnt have been able to go up that high. I get headaches in phases too, when I get them they can be daily or every other day, and then they kinda fade away. So yea, there could be some sort of migraine component, cause i sometimes get occular migraines too... but i dont think that's what's causing my day to day constant lightheadedness. i thought maybe it was possible in the beginning, pre-diagnosis of POTS, etc.. but now I dont think that's all that's going on.. cause that would mean i've had a migraine 24/7 for 15years now... my symptoms are too constant... perhaps, some of the occasional spinning vertigo or increased dizziness is from that.. sometimes around headaches, it worsens. but i havent ever responded to any meds for headaches either..so it's hard to tell how much of a part it plays... ha, so who knows... so yeah.. it's a theory I've heard... and for some people, depending on their symptoms, may explain everything... if the dizziness is a new thing for you, and/or on and off thing.. it's possible.. for me though, it seems like a lot of interelated overlapping things... and i still wonder if it's the dysautonomia just causing all of it.. As for how I'm feeling, still pretty bad, if not worse, i keep getting sick for some reason and it seems to be aggravating my POTS symptoms, I also had bad vertigo for hours with it, and since then things have been rough. I had to stop the vision therapy over the summer due to insurance, and just started up again for about a month. 1wk only this time, and with a different focus in therapy, and no response yet.. so this week they're gonna change things up again, and add more vestibular stuff to the program,though not vestib therapy by a PT yet.. i may have to go back to that at some point. but right now, we're trying to deal with it, in relation to the vision stuff first. Also to answer how i got started with all this... i was the one who initially asked my "regular neuro" to send me to vestib rehab. this was before the POTS diagnosis. so at that point, we still had no idea what was going on with my and i was undiagnosed for 15yrs. it was there at vestib therapy, that they did the SOT test which showed the vis/vestib problems. the 1st "development" in my case and then it was the vestib therapist who suggested the neuro optometrist. it was him who recommended the vision therapy, and to be done by an OT, cause he considers the vis/vestib thing a kind of sensory integration/processing disorder and since some OTs have sensory background, he thought they'd be better working with the vestib stuff. The center i go to has some patients with vis/vestib issues that they treat with vision therapy there, so it just worked out that i had that kind of place nearby. After discovering the vis/vestib dysfunction, i then happened to be diagnosed with POTS by a neurologist whose specialty happens to be sleep disorders, which is why i initially went to him, to see if it was anything with my sleep causing my symptoms. But he also has neurophysiology background, so i think that's why he happened to pick up on it. He doesn't have anything to do with the vis/vestib stuff though. i just asked him about it, if the POTS causes it, and he said it may or may not be related, or part of it may be related, they just don't know. In relation to the POTS, when I went for 2nd opinion/testing, it was also a neurophysiologist at Columbia who knew about the POTS, so I've had the most luck with that kinda specialty hearing of POTS. I think it's a subspecialty of neurology though not exactly sure. I did just try a new local neuro, in hopes that he'd work with the POTS guys so i dont have to always travel, and he happens to know the POTS guy at Columbia.. apparently this local dr did his fellowship in neurophysiology there... ha, so if you find anyone that has "neurophysiology" listed, maybe youll have some luck there?? And it's funny you mention the ENT.. i'm actually goin to see one tomorrow who's supposed to specialize in dizziness/vestibular stuff, "neuro otology" ... so since the "neuro" prefix has helped before with the POTS and the optometrists, hoping it'll help here. i just want to see if he has any insight on things, what his perspective is.. if there's anything he can treat or any causes he determines. i did have an ENG done few yrs ago.. it came up a a little bit off in my right ear which i just learned recently.. the first dr told me it was totally normal. so i'll see where this dr weighs in tomorrow. i didnt have any VEMP/ECOG yet. I'll let you know if this dr has any interesting thoughts to add. And one last thing.... at therapy, i'm learning more about how the vis/vestib stuff relates to sensory issues.. my experience with sensory issues is when i worked with kids with autism. many had sensory dysfunction and i used to joke that sometimes i feel like the kids. well apparently there's truth to that.. not only did the first neuro-opt. mention it. but the other day, during retesting on the SOT machine, i was getting more dizzy between trials.. and still felt the floor moving... the therapist pressed on my shoulders, giving compressions, something i'd do with the kids w/ autism... and i laughed... but it actually kinda helped a little, to reground me. and after he put a weighted vest on me.. something else we used with the kids... well it was hilarious, but when i walked across the gym, dont know if it was coincedence, but i was a little less lightheaded/floatey.. i felt the ground more firm/flat.. not like walking on clouds like usual... this fascinated me... especially with my teaching background.. .and some i contacted some of the agencies i used to work with, and had them find a "sensory OT" for me to talk to.. i'm gonna call one on Tues... to see if there's any things they can suggest to help. i might get myself a weighted vest, and see if that helps when walking.... it does make sense though... 3 systems control your balance... vestib.. vision.. and somatosensory, which is your sense of touch/proprioception... and my first two arent working.. .so i'm relying on my touch to figure out where i am in space.. and now it makes sense why i hold onto walls when i walk or why i stamp my feet when i come off an elevator or feel really floatey.. .i'm trying to give myself that input/grounding... and the vest i guess did it more... and it was weird.. i never feel a difference with anything.. but with the vest i did that day..... so anyway, just thought i'd throw that out there too, not sure if you have a sensory background, so ha maybe my babble didnt make sense, and not saying that's even what's going on with you... but with me... it's a very intriguing part to what's going on.. again, not everything.. but it's related... and again... sensory issues... the theory is that it's a wacky neuro system to blame... so it just makes me wonder if this is all dysautonomia/POTS related and drs havent figured it out yet. they all work separately... i'm trying my damndest to get them to talk, but if they wont' , ha, i'm trying to piece it all together. even if i address each separately,.. meds, etc for POTS, vision/vestib/sensory therapy for the other stuff... maybe it'll work??? ha , probably not, but still hoping, gotta try... i'm 31 and have no one else to help/support me.. .so gotta get better somehow, we'll see.... Good luck to you and let me know how you make out!

It's funny you mention this. I keep getting sick too lately, but dont know why. This past summer whatever virus it is just keeps coming back and I dont have much time in between. My POTS symptoms have also been out of control, and I feel like I've been regressing more than usual. And I already am unable to work/drive. I thought it might be due to my Hodgkin's but the scan and bloodwork came out fine. So not sure what's up, but it's quite frustrating.. I usually dont have it linger for so many months, bout 4 mo now.

Thanks for the info. Ha, wow a lot of things to consider I didnt even know about. And good idea to do a search, I forget you can do that on here. I didnt know you can get them specially fitted, ha, or that they seem to be so hard to get on! I can totally see myself having issues with that. Maybe I'll start with a lighter, cheaper pair, cause if I cant tolerate that, might not be worth it to go more hardcore;-) really curious though if it'll make a difference. Fluids, salt , and other POTS treatments never had, but my circulation issues seem more apparent than ever now, so worth a try. Thanks for the tips, alot to look into before making a choice:-)

Yea, like others said, I think it has something to do with the night sweats being related to inflammation. And yea the cause of the inflammation is what's hard to pinpoint, can be a variety of things and I dont know if they'll ever know. I have night sweats too for about the past 2 years. I got them the year before i was diagnosed with lymphoma so thought they were related to that.(ha, not to scare you but if you have any swollen nodes, or itchiness, etc, just get it checked out). Anyway,now that I'm supposedly in "remission", I'm not supposed to have them anymore so the oncologist says they're from something else. One dr said to take a trial of steroids, and if they go away, you know the night sweats are from inflammation, but again, doesnt tell us the specific condition. So when Dianne mentioned the advil, that made sense to me being anti-inflammatory, so I tried it for 2 days, and didnt have the sweats those days either. I didnt want to stay on the advil long term, cause i'm on another drug that youre not really supposed to take much of the advils/aspirins with cause of stomach bleeding risk. But i found it very interesting and plan to tell that doctor when I see him this week. If I find out anything interesting i'll let you guys know. Glad you got some relief:-)

I never tried the whole compression garments thing due to my heat intolerance, and just thought they'd be too uncomfortable. Recently, my legs/feet have been more bluish and I've been feeling worse, so I'm desperate enough to give it a try now that the cooler weather is coming. I'm also wondering if it will help with the unidentified leg/foot pain I have when I stand or walk for short periods. Out of those of you who used them and find they helped, what kinds seem to work best? what's most comfortable? and where did you get them/what's the cost? I'm wondering if abdominal stuff is better or more tolerable to use then those that go down the legs? or are they less effective. Or I heard the one Dr. mention Spanx, and I'm wondering it that might be better to use, since they have the abdominal part, and can also go either to mid thigh or to calve? don't know if they'd be more or less tolerable than traditional compression garments?

I experience muscle weakness too. I've noticed it more the past 2 summers in the heat. But I also have the problem of never seeming to gain endurance or strength from exercising. I've been consistently using the recumbent bike for almost a year and half now and dont feel any improvement. I also have leg weights and would walk briefly with them and do leg strengthening exercises, but feel weaker now then I did 2 years ago. Very frustrating!! I also have always had since a kid, before the POTS, leg pain and foot pain if I stand or walk for a short amount of time. I used to hold out longer as a child, maybe 30-45min before a lot of pain, now it's like 10-15min, and that's after all this exercise, i don't get it. I feel your pain and frustration. I lately am wondering if it has anything to do with circulation, at least the pain, I"ve never tried compression stuff due to my heat intolerance, thought I wouldnet tolerate it. but i'm lookin into trying to find something now.

Ok, yea, if your vision is supposed to be "corrected" and you're still having problems, that sounds more like when an optometrist, vision therapy, etc.. can be helpful. They'll look at the functioning of the eyes, not just test for diseases/eye problems, which is the usual job of the ophthalmologist. Often optometrists say patients will come to them after having been told by opthalmologists several times, their eyes are fine. Which, technically, they're right, they may be healthy, but the person can still experience problems. One of the tests the one optometrist did actually views your eyes while reading to see if you skip lines, etc.. I didnt have problems with that, but it sounds like that's an issue for you. Issues like convergence insufficiency (where the eye muscles are weak and dont like to work together) can also cause problems reading and in some cases blurred vision. If you find looking out of one eye, helps a little, that points more to convergence. Anyway, good luck and hope you find more answers!