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Hi Noreen, Just to clarify what i meant with the certification, it's the therapist, usually it falls under PT(physical therapy), who would be certified as a vestibular therapist, not the doctor. Ha, this way your neuro-ophthalmologist doesnt look at you strange if you ask;-) It's possible the doctor may "specialize" or have experience with visual-vestibular disorders, but I'm not aware of a certification for doctors in that area, more of just a sub-specialty due to their interests/experiences. Also, in regards to the prisms, has your neuro-ophth. identified a cause for your vision symptoms? The cause would obviously affect the treatments used, but I'm learning there are different types of prisms, used for different things. I even had two different kinds I'm experimenting with. One for computer/reading, and one for walking around. With me, I don't have visual acuity issues, I have "good vision", no bluriness, but I have convergence insufficiency and visual processing issues, suppression of eyes, etc.. that cause me to feel more eye symptoms,( fatigue, lightheadedness/dizziness, nausea, headaches, etc) and also effect my depth perception. Apparently the prisms are used with convergence insufficiency, and the neuro-optometrist feels people with vestibular issues benefit, from the prisms getting them to use their peripheral vision more. Oh, and that's the other thing, I found the neuro-optometrist as opposed to ophthalmologist knew more bout vision therapy and prisms. So if you dont feel you're getting anywhere with your current doctor. maybe look into the other specialty. Lastly, if your dr does try prisms with you, i recommend a place that does 30day exchanges. I had to keep switching the Rxs, trying to find the prism that I tolerate the best. Luckily EyeDRX has been patient with that. I'm almost done trying them out. It seems they just might help a little bit to take the edge off the symptoms. When I increased the Rx to see if I got a more noticeable improvement, they actually felt worse. So it may involve some playing around til you find something that works. I dunno if they'll help much in the end, but even if it helps a tiny bit, might as well try it. It's also the vision therapy, that is the main thing that's supposed to help. And eventually the goal is to wean you off the prisms. So depending on what your issues/symptoms are, that may be something to consider.

Oh and one more thing, my POTS symptoms did get a lotworse about a year before I was diagnosed with Hodgkin's. So somehow it was aggravating things. If you have any swollen lymphnodes anywhere that have been hanging around for a while in your neck, armpits, etc.. and/or if you have night sweats, fevers, or itchiness that doesnt go away, due to your family history, maybe get it checked out if you have concerns.

Ha, I was curious about your post, cause I got diagnosed with Hodgkin's lymphoma at age 29, and POTS at age 31, though I've had symptoms of POTS since age 16. The doctors tell me they don't think the lymphoma is related, but I still wonder since it deals with the immune system. And my POTS came on after a virus, so I wonder if there's an underlying immune dysfunction that predisposes you to both conditions. I do know that epstein's barr virus, can predispose you towards getting lymphoma. and epstein's barr is often associated with Chronic Fatigue Syndrome. Though I didn't have Epstein's barr, they thought I had CFS. And I'm wondering if whatever virus it was that kicked off symptoms for me, also predisposed me to the Hodgkin's, but maybe hasnt been discovered yet. There was talk that the XMRV virus might be behind CFS, but nothing definitive proven yet. The XMRV virus is associated with I think some form of leukemia maybe? i cant remember, but it was something in the blood cancer family. Ha, so the answer to your question is I dont know, sorry cant be much of help, but those are some of my thoughts. If you ever do find out any links, let me know;-)

thanks again everyone for the warm wishes and interesting info. I never knew about the seizure like activity with autonomic dysfunction, and the spondylitis/auto.dysf.connection too, pretty interesting. Ha, I'll have to tell my dad, sounds like it may explain why he has the vasovagal thing. but yea, i guess all his stuff put together, may explain my genetic tendency toward it. The leg pain, still pretty clueless about, i dont think its spondylitis, but i do wonder about the bloodpooling/circulation thing.. i didnt notice it as a child, but have it now. and i have raynaud's.. and recently during this bad virus I had, my legs were turning blue/blotchy, so it seemed to either aggravate the pots or the raynauds. i'll bring it up to the drs again, when trying out to figure which specialist is best to see for the pain. And it's good to know that even when some of you experienced major setbacks, you somehow got the functioning back again. Ha, i'll hang onto that! And yea, i guess it makes sense, if a simple virus can really through things off. you'd think cancer/chemo would really mess things up, so i guess in the grand scheme of things, maybe 1 1/2yrs really isnt enough time considering how tough that was on me. and even if i think of how i get smacked down for a week after like a day or two of "activity"... i guess it's conceivable that 6 consecutive months of treatment that makes you sicker, with no breaks, might take its toll on you for a few years. I hope that's all it is and it's not getting worse on its own again. I have been feeling worse the past few months, kinda like i did the first time i was diagnosed, but hoping it's not that. I go for my scan this friday though,so we'll see. anyway, i guess part of what added to my frustration is my oncologist is so adamant and insists i should be better and there's nothing wrong, while any other dr is like, no, chemo can smack down a normal person for a while, so if you had other issues, of course you'd be worse for a while. I guess it's just quantifying what "a while" is. And i realize i just cant listen to my oncologist(and no, i cant switch drs :-() , but he's this big fancy world renowned expert, so I fell into believing him. but i realize, he just doesnt get it. and i cant keep making myself feel bad cause he doesnt understand. though i'm not going to push it with him anymore, ha, i will give him a POTS brochure this time, just as an FYI.. cause he never got why I'd say I felt worse with exercise. he literally made a face at me and stormed away.. anyway, getting off topic... i have tried alot of alternative stuff in the past. it never worked, but i have another newer internist/integrative med dr, i'm going to touch base with again next month. i was on a whole supplement regimen from a CFS dr for 7mo, but had no improvement and now it's too expensive to continue. so i'm gonna try and see if i can get this newer dr to suggest stuff to balance the autonomic system, eventhough she doesnt know bout POTS, and see how that goes. I also have to continue with vision/vestib therapy for those issues, hoping that will help. We'll see..... thanks again for the support, and "now what", i think striving to make the best choc chip cookie ever, is an awesome goal!

Wow, that's a weird response from the doctor. I'm by no means an expert, but based on my experiences, I'll share a couple things. If it was me, I'd definitely re-pursue vestibular rehab, especially since you said you had one test done showing weakness there. Also sometimes vision issues are also present, as in my case, and can make you feel even worse. So they can help weed that out for you. They sent me to a neuro-optometrist who knew about visual-vestibular dysfunction, after they suspected addtl vision issues, and they were right. I'd make sure the therapist you see is a certified vestibular therapist. Otherwise you can get some misinformation, as I did in the past from someone who said they deal with vestib stuff, but wasnt certified. I'm glad I looked into it again, cause it led to whole knew discoveries. There's something they did at the therapy center called the Sensory Organization Test (you can google it) and that tells them if you're having both vestib and/or vision processing issues. I scored zero on both, even though other vestib testing came up fine for me, and that's what led them to know something was wrong with me. As for the exercises, it is expected that they will make you feel sicker at first and are likely to aggravate your symptoms. Not only will the therapist tell you that, but it even said so on the exercise hand outs I got. So I disagree with your doctor, that just because you got sicker, that therapy would be a waste. I dont believe they can tell that early what your response would be. True sometimes therapy helps and sometimes it doesnt. And depending on the person, sometimes it helps a little, a lot, or not at all. But I think it's worth a shot, and just due to the fact you initially got sicker, doesnt necessarily correlate with whether therapy will work for you or not. Ha, and if anything, I think it's a sign, it was working on the right area. It shows you have issues there if the exercises bother you that much. The thing is the exercises and how you were doing them probably needed to be adjusted. The exercises are working on the weak areas, and the exercises are taxing or challenging your system and trying to retrain it. So since our systems are off, it'll reproduce symptoms we have normally. The idea is you start slow, at a level where it slighty aggravates things, but doesnt send you over the edge and worse for hours afterward. You should be able to return to your baseline level of symptoms shortly after. But it will depend on you, how much is a good level to push. Eventually, the more you do the exercises, the less symptomatic you should become and/or you should be able to increase the time doing the exercises or the kind of exercises done. It's like regular exercise and if youre really out of shape, then do this intense workout, you'll feel beat down afterward. Doesnt mean you wont respond to exercise though. Also, another thing to think about. With me, I started with vestibular therapy, for about a month. And because I was so symptomatic, the therapist had to keep me on the most simple exercises, which involved a lot of eye exercises. I wasnt responding too much though, and the therapist felt my vision issues were getting in the way of my vestib progress, and that i should start there first, and then maybe either work back to vestib rehab at some point, or its possible the vision therapy might help the vestib issues, since alot of the activities are overlapping. I'm just recently re-starting vision therapy, so I'll see how it goes, but the vision activities always make me more dizzy, so I know i'm working on the right area. I'll probably have to give the vision therapy 3mo before I can see if it's working or not, they also have me trying prism glasses, to see if that helps as well. Sure, all this therapy may not work, or might only help ease things a little. But I think it's worth it to try, I've wasted time and money trying everything else(drs, meds) so why not this? Especially if there is an identified problem. Usually the response to therapy is based on the cause of the problem, like if you have permanent brain damage, you might not respond. but if it's more "wacky wiring", kinda more dysautonomia, a processing thing, but not necessarily a damaged structure, it seems you have more of a chance of responding to the "re-wiring", or at least that's how it was explained to me. Anyway, ha, sorry so long to explain all that. But I just get so frustrated when drs think they know everything and discourage a patient from something that can help. And who knows, maybe your doctor is right and is an expert in vestib. rehab. But if your financial resources allow, i think a 2nd opinion is worth it. I've had too many drs say things that were wrong. I even had an ENG done for the dizziness, and was told it was fine. And just recently, i was told there was a problem with my right ear. and now it makes sense cause that side was worse during vestib rehab. anyway, dont let him discourage you, based on your symptoms, it sounds like you might have vestib problems and perhaps vision too, and if therapy has a chance at working for you, I didnt want you to miss out on that. Best of luck to you!

I've had a colonoscopy and a sigmoidoscopy, for the colonoscopy they used the "milder anesthesia" not the full not breathing on your own kind, but for the sigmoidoscopy, they did that without any anesthesia or drugs at all. I'm not sure if there are different kinds of sigmoidoscopies , so yours may be different. But as far as I was told, that was kind of the point of doing the sigmoid. so they dont have to do the whole full colonsopy, with anesthesia and the more intense prep. Just to prepare you, cause I do better when I'm prepared, but ha, if you dont want to know about the test, maybe dont read on... I will be honest though and say it wasnt fun for me. It is a relatively short procedure, cant remember exactly, but maybe 15min? But the dr told me it wouldnt be painful, so I wasnt expecting anything. At a certain point, they will pump air into you and i think from that and whatever else they do, you feel, or I should say, I felt almost like sharp gas pains. So I didnt like that, but I think it was worse for me cause I wasnt expecting it. It wasnt for too long though, so it's manageable, not excruciating, but not pleasant. And I kinda get that vasovagal reaction to pain, so as the procedure was ending, after the pain had stopped, i started to feel like i was passing out. but i didnt. Anyway, some people dont have much pain, so it could just be cause I'm sensitive. Also, interesting to know that the anesthesia reaction can be related to the dysautonomia. i can get it, but i always feel so sick afterwards, like i'm always that patient that can still barely stand , after other patients would be home already. and with full anesthesia, i'll be more dizzy, weak, faint, for like 2 weeks afterwards and no one can explain why. ha, now i'm wondering if it's related to the POTS?

Ha, that's funny you mention looking like your cousin with Autism. I used to work with kids with autism and often will tell my friends I feel like one of the kids, that i'm having "sensory issues". Yea, restaurants, malls, grocery stores.. things with either bright lights or weird lighting, noise, and people passing by me can make me more dizzy and lightheaded. In my case, I found out at least part of it is related to visual-vestibular processing issues. I often will close my eyes when people walk past me in a crowd cause I feel unbalanced. And my eyesight is fine, it's just the brain's processing of it. Which may be a dysautonomic thing. But apparently for people with visual and/or vestib issues... lights, sounds, and people passing by you, apparently are common triggers for people. It was on all the questionnaires when I went for therapy and the therapists mentioned it as being common too. Dont'know if thats what youre also experiencing, but figured I'd share, ha, cause I can identify with the feeling .

Thank you everyone for your helpful info and thoughtful words:-) To answer some of the questions... Mack's mom: I didnt get to read the whole link yet, but I definitely will, thanks for sharing! As for early signs, I don't think I had any POTSY symptoms as a child, I was really energetic, danced, and was never dizzy, ha, I even loved the heat! The only time I passed out was after getting a delayed concussion about 5 years earlier, apparently I seized then too. Then once when I was sick with the flu, it was after a hot shower, and apparently my mom said I was shaking then too, so I'm guessing possible seizure, but I've had EEGs, even the 48hr kind and that comes up ok. But I never had any other faint symptoms and always felt healthy before age 16. The only symptom I had as a child and doctors still dont know what's causing it til this day, and I now wonder if it's related, is leg/foot pain whenever I walk or stand for short periods of time. My knees get weird too. It'll just get more and more painful the longer I stand, and I start limping, the pain spreads further, and eventually feel like I just cant support my weight anymore. I saw several orthopedic drs, at first they thought it was just weak knee muscles, and a common knee condition, but that's not it, I also had orthotics, PT, but nothing helped. I used to be able to hold out longer when I was little, maybe 30-45min before I'd be in pain, now it's like 10-15 min. Shopping was always the worst activity for me,cause of the pain, and now with the POTS symptoms add faint/dizzy to it, and it's extremely trying. I might try one more doctor now since it's gotten so bad, but the POTS symptoms always take priority since I have to feel well enough to stand/walk 1st, before I even get to the point of standing long enough to encounter the pain. As for family history, no one feels like me, but my dad has that vasovagal reaction to seeing blood/medical situations where he'll pass out. but only in that setting, not daily. but maybe POTS is somehow related to that genetically. He also has fibromyalgia(but i dont have that, though they always said CFS for me, before the POTS) and spondlytis, an arthritis type autoimmune condition. Some people think i have autoimmune stuff goin on, but doctors havent found anything yet. I just saw a rheum,but i think the blood came out ok. Flop: Yea, i'm hoping there is stuff i havent tried. I'm sure there is, it's just getting drs to think of other stuff or finding new things to bring to their attention. and like many, I'm sensitive to meds, so that affects things too. I actually never tried Midodrine or Florinef, doctors never put me on cause my BP is good, and they said the Florinef is kinda harsh to be on if you didnt have to. the Midodrine i was gonna ask about, but i saw from the posts that it's leaving, so figured not to bother. I've never tried a "cocktail" or combo of drugs, but i guess that's cause i cant tolerate the individual ones, and never had any benefit from the ones I could tolerate. I'll try to remember most I tried below, but if you can think of others, feel free to let me know, i mightve tried it adn forgot to list it. and i always start with a low dose, and only go up if there was no change, usually when I go up I get worse. (Sorry bout the spellings, hope you can still make them out)... -Beta Blockers make me feel the worst of all(faint, etc): atenolol, propanolol, nadolol,and i forgot the other -Anti-anxiety/anti-depressants-often feel worse(dizziness, etc): Paxil, Xanax, Clonopin,Zoloft,Traznozone.. Lexipro was tolerated, but no change in symptoms... Ativan is tolerated in a low dose, but no symptom change... cant remember what else -Provigil-stopped shortly after, really faint/nauseous -Meclizine, no change or really tired -Topamax, tried lower doses, though still hard to adjust to -Lyrica, dont remember my reaction, but i did stop it shortly -Used to be on birth control to regulate periods, but am not on it anymore. didnt help with the menstrual magnification though. And I cant remember what else... trying the Mestinon is new for me, and surprisingly seem to have tolerated the 30 2xday for the past 3mo. just no improvement in symptoms. Now we're gonna try increasing to 45/30, and then to 60/30 if all goes well. But if the Mestinon doesnt work, the "pots" dr i'm seeing now didnt seem to have any other idea of what to try since BetaBlockers dont work for me and my BP isnt low. So that's kinda where i stand with the meds Nowwhat: thanks for your thoughtful reply. and my heart goes out to you for having to deal with things on your own as well. being alone to deal with it all definitely seems to be what makes things worse. but, it's funny, i too have used some of the "coping" strategies you mentioned. I also let myself feel upset, scared, bummed when i need to. i just try not to get stuck there most of the time. and overall i do it, it's just hard when things keep getting worse and you dont get a break. I notice i tend to do best when I just focus on the moment, like you said, and kinda say Ok, for now, just be thankful you have "xyz" and you're handling "xyz" and kinda give myself credit for hanging in there and figuring out things thus far, ha, and reminding myself it could be worse. and just dealin with the present, step by step. it's often pressure from other people that also makes things hard too, whether it's good intentioned or not, and then I have to bring myself back to the moment again, and just try to compare myself to me. when i think of the future, that's when it's really tough. the thought i may never get better and the consequences of that. it's also hard when so many around me are happy/healthy/not alone, and though glad for them, it hurts so much to see how far away i am from that, and how I'm unable to have that. That's when i try to say, ok, so how can you find happiness in what you have now, and youre right, it's all about the small things! For me, dessert;-), singing when i'm able, music, comedy shows, talkin to friends, participating in some online/phone volunteer stuff... those things make me happy so i try to focus on that when i can. I also try to remember back to how much sicker i was during chemo, and be happy that I right now have the luxury to do a little more than i could then. and at least i'm in my apt. and not in a hospital. Anyway, so yea, trying to hang in there, ha, but am nowhere near perfect. Just hoping I can hold out long enough to see things change for the better for once, instead of the worse!

Thanks for the suggestions. The pharmacy had to order the salt pills, they don't say Thermotabs, just Sodium Chloride tablets, 1g each, and I'm supposed to do 2g. It didnt say how to take them, but I figured I'd take them with food due to the stomach upset others mentioned, and now hearing what skyblu said, I guess I'll continue that and with water. So far I havent noticed any effects, bad or good. So we'll see. I do wonder how I know if it's too much salt, and when/if that becomes damaging for us. Since there will also be all the regular salt in my diet, but I figure I'll try it for a month and see if there's any difference, and just monitor my blood pressure. I guess if there's no change in symptoms, there's no point in staying on the pills. I'm assuming if salt is going to make a difference, you'd feel that within the first week or so?

No, I never heard of Himalayan salt, or "Celtic" sea salt, is that different than regular sea salt? Sea salt is what I've been using to add to things.. but ha, dont know if it's celtic or not. Where do they sell the Himalayan or Celtic, a Whole Foods type place?

My symptoms came on suddenly at the age of 16. I had a flu/stomach type virus the week before and when I went back to school the next week, I was marching around in band practice, felt faint (but didnt pass out), and a really intense feeling of heat. After that day i never felt the same again, the symptoms just lasted and were constant, I never had symptom free days again(faintness(pre-syncope only), lightheadedness, fatigue, heat intolerance, and nausea, were the biggies). I was out of school alot that year, but after doctors had no idea what was wrong, I just trained myself to walk around feeling awful all the time and "fake it" with a smile (since I didnt actually faint I could "push it"), it just felt awful the whole time. it was very hard and I'd feel sicker and crash hard when I got home, but I didnt know what else to do. I just kept thinking if I pushed thru it, it'd go away. Ha, so much for that idea;-) I went undiagnosed for 15yrs, which is this current year, now 31,(lymphoma came the end of year 13, at 29). And they dont know what the cause of my POTS is. I just asked my dr about possible mito disease but he kinda blew it off saying i've been online too much, and that they dont really know what causes it. I may try to see if I can get other drs to look into it. But thats the problem, I've seen literally 50+ doctors by now, and they all pretty much stink, they dont keep trying and dont put much effort in. And I only stick with the "better" ones at this point, but even they are not cutting it. Anyway, each year my same symptoms would get worse,(some new ones would be added in the latter years, like bouts of headaches, vertigo, visual disturbances, etc) but the main disabling symptoms are the constant lightheadedness, dizziness, faintness, extreme fatigue, and heat intolerance. And everything gets even worse before periods. Each year it'd be harder and harder to modify my activities and adjust functioning. But I had no choice, so I'd just keep pushing and crashing, feeling worse the whole time, it was the only way I could get by. I had to keep changing jobs and lessening my activities. Then the year before the cancer diagnosis my symptoms really got out of control, same symptoms, but just quickly worsening, and so I guess it was the cancer making the POTS worse at that point. Chemo killed the POTS even more. I could barely sit up and had all "atypical symptoms" according to my oncologist. It's been almost 1 1/2yrs since chemo though and I still cant get my functioning back to my pre-chemo level, and that wasnt even a good functioing level. I thought the chemo would take me back maybe 5 yrs, and I'd feel a little better, and be able to somewhat "push things" again, but it hasnt happened. Of course I try to stay hopeful, I wouldnt have lasted this long if I didnt have that hope. But now, it just keeps getting tougher, I thought after cancer and finally the POTS diagnosis, I'd be on the right track, the search for what's wrong would be over, but things still seem bleak. But hoping the mestinon or salt increase will be somewhat magical;-) or maybe can always hope that some researcher will come up with something new to try. It's just difficult dealing with the reality of my situation in the meantime. I have no one to take of me, but myself. If i had someone to support me, it'd be a bit easier, but I dont , so I have to get better. And I've fought so long and hard, had to be such an advocate, take all of the responsibility on myself, I'm my own doctor, i manage everything figure out who to see, etc, cause the doctors just dont know how to help me, it's just after 15yrs, I'm out of ideas at this point, and have very limited financial, transportation adn support resources left. So I feel like I'm running out of time, it's now or never kinda thing. Maybe I should push looking for an underlying cause? Is there anything specific I can ask drs to order/test for? any group of conditions I should look to rule out? When I read a little about causes, it seemed since my symptom onset was after a virus, that either, that was the cause, or possible mito disease sounds like me at times... i dont know if there's anything else i should be looking into?

Does it help taking the pills with food or not really? They wanted me to take 2g at once, but it comes in 1g pills, so maybe now hearing your replies, I'll just start with one and see. If it doesnt work, i cant try the broth thing. I forgot about the chicken broths being high in sodium. I have and old bottle of those chicken bouillon cubes, but they are probably loaded with additives.. Trader Joes might be the way to go if the pills dont work out. thanks everyone

Interesting to know about the categories.. And as for the heart rate demo, my symptoms are different and my heart rate doesnt consistently increase that high. It's often borderline. and that was one of my concerns, the day I got my recent tilt it was 29beats, so that doctor's report had to write "suggestive but not diagnostic of OI".. but he did write that the extremes in the valsalva testing and almost 30beat increase, as well as other things like my prior positive tilt and symptoms, etc.. are "other features supportive of OI" . I then just had the other doctor who diagnosed me (not the dr who did the tilt), write a letter to explain eventhough the HR might not always be 30+, the diagnosis still stands. And he did catch it at 30, 34 in his office, so I have that progress note to document it. Also, it seems that the amount of increase in heart rate doesnt necessarily correlate to symptom severity, so even though I might not jump up 50 beats, my symptoms can still be disabling. So hopefully I'll be able to find a way to explain all this to them that makes sense. One thing that I think shows how my symptoms were worsening each year til I couldnt function anymore, is my work history alone. I modified my jobs from year to year, from more physical work , to less and less physical, til I couldnt even tolerate a desk job anymore. So I'm hoping that will be in my favor, that I tried to hold out as long as I could, but after about 14yrs, my body called it quits. We'll see.

All the stuff I've read about people who have "recovered" or gained a significant amount of functioning back after POTS, is all the basic "POTS 101" stuff that I've tried before and have never felt any improvement from... fluids, increasing salt, exercise/leg strengthening, betablockers,etc. Also things like supplements like vit D(eventhough it was low),B,etc and other "alternative" methods and diets have never worked. My symptoms seem to get progressively worse and I lose more and more functioning, it's now to the point where I can't work or drive, granted chemo seemed to seem the straw that finally broke this camel's back and I still seemed to be knocked down from that, but even before that I was just getting worse, and eventhough I didnt know I had POTS until recently, I've tried the same strategies as treatments as my doctors were guessing on what to do. And of course, now trying them again, full force, but still no relief and I even seem to be worsening the past 6mo. The only new thing I'm trying is Mestinon (caused betablockers always make me worse).I was on 30mg 2day for about 3mo with no change, and am about to start increasing it, so I'm hoping maybe a larger dose is all I'll need, but dont know if that realistically will be the miracle I'm hoping for. I am going to try salt tablets, (which I also just posted about), but just don't know if there's anything else I could be doing. I feel over the years, and especially this past year or so, I've tried and re-tried it all, and dont know if this is how it's going to be, and will have to permanently accept being this disabled and not knowing if i'm going to be able to support myself in order to survive? or if there's other stuff to try, or other people that just took longer to recover? or found something different to work for them, other than the "usual stuff"? I'm just so disheartened, cause I thought once I got thru chemo, and then got the POTS diagnosis, after 15yrs, things would finally get better, and it just seems things keep getting worse. I know I cant expect a sudden miracle, ha, though I can still hope, but even more realistic measures seem hard to obtain. I've tried soo many doctors and I just cant find any real "fighters" , ones to really try and support you and not give up. I know they dont have answers, but at least some effort would be nice. I don't know, I guess it's just I get so excited and then so sad when I read something about people with POTS who got better, ha, of course I'm happy it worked for them, but I feel so hopeless that I've done the same things and more and no recovery in sight for me. And things are just really serious right now, I'm pretty much alone in this, I dont have anyone to take care of me, my parents are moving away, I can barely get around as it now, and I was getting by on the hope that it would be a temporary situation til I got better. now with the prospect of things staying this way, and struggling with how to get/maintain disability, insurance, rides to drs, etc.. just curious is there's any tales of hope out there for the hopeless;-)

I've never had any improvement in symptoms when increasing my salt intake, and recently I've tried bumping it up even more by adding more salty snacks and adding it to foods I usually wouldnt add it to like peanut butter or cheese. I also cant cook so I have to eat a lot more processed/frozen foods, (though I try the more "natural" or "organic" kind), but basically, I would think my diet would have enough salt to feel a difference, and I never have. The doctor I'm seeing for the POTS wants me to try salt tablets, just starting with 2g a day and see what happens. Has anyone ever not had any luck just increasing their salt on their own, but noticed a difference when put on a pill? Also, any side effects or things I have to watch for when taking it in that form?

Wow, congrats on getting through on the 2nd try! I just got denied and have to go to hearing:-( Problem is I first had lymphoma, so initially that was put on as one of the diagnoses, along with CFS. The POTS diagnosis arrived in time to do the 2nd appeal, but they still didnt address any of the other conditions and just kept denying me due to lymphoma. I made the lawyer check with SSDI to make sure they received and looked at all the other info since they only referenced lymphoma, and she said they did, they just didnt write it in the letter. How stupid? If they're gonna make us go through this , at least fill out the rejection letter properly. Alot seems due to my age, I'm 31, so thats "too young" for them to give the benefits up. But for the hearing, I'm not messing around, I'll submit POTS brochures and research articles that say the condition is disabling, and good idea, I'll try to get a copy of the video too. Ha, and I'm gonna cut/paste what your lawyer wrote and see if it helps mine. Thanks for sharing! It's such an ordeal as you know to go thru this. I'm also on my companys disability, thankfully! cause that's how I've been surviving this past year and a half, but its' so scary. they make drs fill out paperwork every few months or more to keep it, and doctors suck so much, i'm having a hard time finding a reliable dr to do that. if ssdi goes thru, not sure how often they require updates. Anyway, thanks for the info.

thanks lissy, helpful to know! it's weird, my other POTS symptoms have been so constant, same symptoms that get worse for 15yrs, that's why this kinda threw me this last time. But if i think of it, I guess as things progress, it's not so unlikely new symptoms may get added with a viral trigger, or worsening of some of the old. Ha, the mottled thing is freaky;-) I'm used to just my feet looking weird, so when it was like all over and darker, I was like, what's going on? Knowing it can be a POTSY thing is helpful, thanks.

That's great that you're trying to volunteer your time somewhere. Don't let those negative environments discourage you. There are sooo many volunteer opportunities out there, many different types of work, and I really think you can find something that fits your health needs. It may be doing some paperwork or something like that for a non-profit organization. Something less physically intense right now. And you just have to screen the place before hand. When you call say youre looking to volunteer some time, but due to medical conditions, you're looking for something like you stated, flexible, when you don't have to be somewhere or do something at a particular time, and tell them how many hours a week or month, etc. you are looking to commit. There are also alot of organizations that you can contact online, and even some volunteer work you can do online, depending on the agency. I actually am currently on disability, not well enough to even work part time yet or drive. And a young adult cancer agency had asked me if I had wanted to help with an event they were throwing. That was physically too much for me, but i asked if there was anything I could do from home, and told them depending on how i feel, i might not always be helpful certain weeks. But they sent me up with a simple task, once a week, reading thru a bunch of articles that get sent to them, and picking out the good ones for them to see. It sounds not that important, but they said it's an important task that often gets put to the side, so they're happy to have someone do it now. My point in sharing that is maybe a place that has something like that, some paperwork or project that's been put on the backburner cause they dont have time to do it, so having someone help with that is wanted, and it's not anything urgent or requires a set day of work. You mentioned NJ. I don't know if you're close to Bergen County at all. But there's a number for a Volunteer Center, I think where you call up and they can tell you different volunteer opportunities. If I'm wrong, I'm sorry,I have like 100 agency numbers in my book, cause i had to look for a lot of social work resources for myself. the number is 201-489-9454, and maybe they know of another group that's in your county if you're not close to Bergen. or maybe they can tell you how to find more opportunities. Also, the Division of Vocational & Rehabilitation services is an agency that helps people w/disabilities find jobs, it's meant to get people working, but you might call and see if they'd help you find a volunteer position to suit your health needs. ADA is the law that protects people with disabilities from job discrimination, but not sure if that applies to volunteer work. And you have to meet ADA's definition of disability. Something else you might be able to do on a drop in basis is hanging out with senior citizens at a local nursing home. Other big non profits, like the American Cancer Society, have a bunch of different volunteer opportunities and if you call and tell them you want to help, they might give you the local # to your branch, and see if they need office or phone help, or whatever. Look online at some of the nonprofit websites and there's often a link for volunteer opportunities. Good luck and try not to let the negative people bother you, you don't want to volunteer in an environment like that anyway!

Funny you post this now. I've been going through something somewhat similar, though not the exact symptoms. I have had an extreme worsening of symptoms, not like my usually POTS worsenings. I have weakness, fatigue, faintness, and intense feeling of heat. I also started to get shortness of breath the other day, which is not a usual POTS symptom for me, and they sent me to the ER. Also, my legs/feet started getting much more bluish (not the usual slight discoloration in my feet that i get when standing or still), and my legs and arms were all like blotchy and "mottled" looking. Now it's calmed down to a little more reddish/purplish but still weird. Anyway, I have been sick a few times now this summer, this is the 3rd time, and I feel kind of "fluish" as opposed to simply POTSy. I also have nasal congestion/my ears feel clogged. It's been 2 weeks so far that the symptoms seem so bad. I have to lie down all day pretty much, and if I try to do anything, I get worse. The faintness/weakness is the worst symptom for me. So I'm wondering if it's a virus causing the symptoms, and/or a virus causing a severe worsening in the POTS symptoms.. especially now since my circulation seems all funky. Anyway, don't know if that's what's going on with you, but with me, it's the only thing I can think of right now that seems to be triggering the worsening. Normally my symptoms get worse when sick, but has anyone experienced new POTS symptoms they havent had before, or just a more severe kind then they usually would when sick?

Dianne--That's awesome your date went so well, and encouraging for the rest of us;-)

Funny you mention this, it's a popular topic amongst the young adult cancer community too, I guess it's the same with any illness really. It's a good question and tricky one, i still wonder how to deal with it myself, if I'm ever well enough to date. Ha, and there's really no one answer or right way it seems. I think it just depends on you, the other person, what you are looking for out of the encounter. Though in general, some say waiting too long and then springing cancer or chronic illness on someone might not be good, like if it's a serious relationship. The cancer community in general said maybe after 4 dates or so and if you want to pursue things. I dont think there can be any hard and fast rules with this though. But with POTS, i think it's a little different. I think maybe it depends on your functioning level. How noticeable is it, how much does it affect you? Ha, depending on that, you might not have much of a choice. Years ago, I could "fake" it more, and it wouldnt have come up right away. right now... i'm on disability, unable to work or drive. so ha, even if i met someone at a doctor's office;-) it'd come up very soon for me since so much of my functioning is affected. the , "so what do you do?" question often comes up quickly, and i'd be "outed" right away , unless i lied. and i wouldnt want to lie directly. I just may not offer up a lot of details depending on the situation. If i just want to get a nice date or two out of it, i might not have to mention things. if i like the person and want to see them more, it's going to come up. and then people always say, the "right" person will be able to deal with it, but it's hard. not many active people are going to want to deal with someone so limited all the time, with all these illnesses. So I dunno, i hope the magical people are out there, and I hope you find them too. Ha, i wonder what type of person could possibly deal with all my issues.. then the other part of me is just like whatever, if any opportunities come up , just go with it, and whatever happens, happens. part of me lowers my expectations, knowing if i'm this sick, i cant expect people to stick around, but i guess you never know. Good luck, and if you figure anything out, let us know;-)

For me, I was always a "pusher" cause I had no choice. I had to finish school, work, etc.. I needed to support myself, and I went undiagnosed for 15yrs. So when you don't know why you feel the way you do, you really can't get disability or anything else. The problem is, with POTS, when you over push, you just keep getting worse, or at least that's been my experience. So each year I'd get progressively worse. I'd go to work so sick,not thinking I was going to make it thru each day. Somehow I did, and as I got sicker, I just kept saying to myself keep going, and took pride in the fact that if i pushed, though i'd feel sicker, I still somehow got by and made it thru. i just had to modify and/or drop the nonessential things, the social activities, hobbies, etc.In year 13, I got cancer, so I wonder sometimes if it was the year after year of pushing though my body told me not to, so ha, Lieze, you may be onto something;-) And now, I'm unable to work or drive. Now no matter how hard I push, i can't get thru "normal" functioning anymore... and when I "push", it's just to get thru simple things like lunch with a friend, a doctor appt, a shower, etc... Anyway, if you want to "go there" with your friend, cause like Erik said, it may be something you might not want to push if her condition is fatal, she may always feel like your condition cant compare with hers and her ability to push thru and maintain some normalcy gives some sense of control in an uncontrollable situation... it did for me too..... but when other people say things like that to me, I try to explain how no matter how much I want to do something and want to push thru, "pushing" too much, can just make you continue to get worse. So if you over push, you'll be able to do less and less despite pushing, and the only way to improve functioning is to listen to your body and learn how to balance/modify things. So i tell people it's a tricky thing i struggle with everyday, finding how much i can push, without losing more functioning. I tell people everything i do is forced, nothing is easy, i have to push thru everything, so yes, they are right, i do have to push, it's just a question of how much is too much and it can vary day by day, it's the nature of the disorder. Also, in response to the wheelchair use, I'd say, I know it seems like i'm giving up, but ha, it's funny, that's actually me pushing, because instead of just staying in bed all day, or not participatin in certain activities, that's a way i found that helps me "push" thru things, so that i can still be as "active" as possible, w/o completely giving up when I feel so sick. Maybe i'd say I wish my body responded better to me pushing, but unfortunately it's out of my control. There's a line from a book on young adult cancer called "everything changes", which i so identify with. She says, "Life's circumstances don't necessarily comply with will or effort"... I feel like that's been the theme of my life;-) and sometimes I say that to people.. And maybe i'd also validate her in some way, like that's awesome how youre able to push thru , that it works for you, and you can have periods of normalcy, despite what youre dealing with. Ha, if she's really interested, you can show her one of the dinet brochures on pots, but that may be too much. i snuck it in when emailing my friends when talking in general about things, and not acting like it was directed towards them in particular. i liked how in the brochure it mentions POTs is sometimes similar to living w/congestive heart failure. that sometimes makes people think, when they see that in print. my grandma has heart failure, and when i talk to her, our conversations are very similar at times, in fact sometimes she's able to do alot more than me;-) I mention that sometimes... And sometimes people jsut dont get it, unless they experience it. they think it's the same, that they push, why cant you, but it's not. So sometimes, i know with certain people, i'm just never gonna get anywhere and I just have to try to accept it.

All my symptoms started after a flu-like virus at the age of 16, now 31. We didnt know what type of virus it was then and I never was thought to have 5ths disease since I didnt have the rash or other stuff. But, just this past year, I got a bunch of bloodwork done by a CFS specialist, and Parvovirus was the only virus I showed up positive for. Now it doesnt necessarily mean the virus I had at that time was the parvovirus, and parvo is supposedly common, so the blood couldve picked up on it from another time I had it, but nonetheless, the CFS guy felt is was a possibility that it was the parvo virus that started it all for me. There was one study I read and the people afterwards complained of dizziness, and a strong heat feeling, which are some of my main symptoms. Anyway, it seems like from what I read and just talking to different people, these viruses, no matter what kind, have the possibility of throwing people off sometimes.

Issie- yeah, youre right, it's sometimes easier to cut some slack to those outside of our situation, cause they don't know what else to say, and you know they're just trying to say something "helpful". So yes, it does make it more surprising and hurtful that it was a fellow group member. And I'm totally not saying that person was right in how she said things, there's no need to be hurtful when Leize was just clearly trying to help and offer support, and did nothing wrong. Everyone should be able to express differing opinions without feeling chastized. So yea, I totally get why Lieze felt bad about it. And I felt bad when she said it makes her not want to participate in the group anymore, so I was just trying to make her feel a bit better and maybe not take it as personally, cause eventhough we are all in the same boat, obviously we handle things/cope differently, and a comment like that person made, can reflect a lot more about them and where they are in there coping process. Or ha, like I said before, the person can just be a mean person, and then yea, the person shouldnt bother being in a support group, if they're just there to criticize others. And of course I wasnt there, and I dont know if that person has a pattern of being insensitive or not, so the person couldve totally meant to be hurtful, but just my initial impression reading the comment for some reason, and maybe my frame of reference was skewed due to my own experiences with it, it struck me as someone not necessarily trying to come off mean, but based on the subject matter of the comment, was more trying to express frustration over hearing postive advice when she's hurting, of course the person just did so in a really inappropriate way. I hope the other group members appreciated Lieze's advice and that the experience was just an isolated incident. It's a shame and defeats the purpose when a "support" group becomes an unsupportive place.

How sad that all of us have to go through the same infuriating issues! I was just diagnosed recently after 15yrs , so yes, have had my share of " just anxiety" doctors. Way too many! I too, don't faint but feel faint so yea, that sometimes causes them to take you even less seriously. I too had seen psychologists, psychiatrists who said it was medical and I need more testing, so I repeat that, but it doesnt always mean anything, maybe a letter would work like some said above. But sometimes, if that's the type of doctor they are, nothing changes their attitude, tilt tests, etc.. I've realized I'm just not going to get anywhere with that type of doctor and don't waste my time anymore. Sometimes I tell them, I wish it was anxiety or depression, or all in my head, cause then I could fix it. I don't care what's causing it, I just want to get better. I've tried treatments for the above and it hasnt worked, I've tried every lifestyle and psych approach you can think of, and still no better. So please help me, if you know of something I havent tried that has the power to give me my life back, by all means share it. Usually that quiets them. Also, I used to make a deal with them, if they came up with something else "psychological" to try, I'll say, yes , I'll do that, but for the sake of the argument, lets say it's not actually a psych. condition, what could we do then, what are possible next steps.... But honestly... to not even have to go thru that, I would just keep looking for another doctor, as frustrating as it is... and i've seen probably literally 40-50 specialists over the years.. and it is just not worth it having someone who doesnt believe you. It's hard enough getting the doctors who do believe you to help you, that's where I am now. I've had better luck with "neurophysiologists" in relation to the POTS, so if any of them are by you, they might know better. If you're near NYC, Columbia has a guy to do testing and some consults. In relation to your eye stuff, I would definitely pursue that further. I dont know how they'd chalk up optic neuritis to anxiety. Either a neuro ophthalmologist, or maybe even a neuro optometrist might help. One of the neuro optometrists I saw actually did VEP testing at his office. That's another test that picks up on eye stuff, and they sometimes use it to pick up on MS that may not show on a brain MRI. I think 5% of MS cases dont show on brain MRI.. sometimes cervical or thoraic is also needed. Sometimes the VEP catches it if there's eye involvement, so if you havent had a VEP yet, maybe ask about that? if that would help diagnose anything? just might be costly. Also, if you dont already, my advice is to get your own copies of any testing you have done. I've had too many bad experiences due to not knowing exactly what my results said. And its also so much easier when you have the copies at your disposal to bring to whoever you want. They have to give you copies if you ask, so dont let them tell you you cant see them. I even sometimes get copies before I see the doctor, I do that with my oncology stuff so I can prepare for the visit better. So when you get the test, ask who you contact to get a copy.. if it's at a hospital or facility, sometimes they have a separate dept for that. If they say, just get it from your doctor, say, no I need a copy before. PS: one last funny , ha or sad story, to show I feel your pain, but why it's impt to get your own testing and switch drs.... a few years ago, i saw a cardiologist who told me i didnt have anything wrong and it was in my head. I was pushing for the tilt test, and he's like, we can do it if you want, but i highly doubt it'll show anything, you wont pass out, etc... the tilt test was done poorly(wont get into that), but they told me it was negative. the dr told me if the tilt was negative, that i have to pursue the "correct area".. that i probably fell off a merry go around when I was 8 or something, and am somehow still bothered by this today. LIterally, what he said, no joking! (ha, i've also been told I need a vacation w/ boys fanning me, that what I was saying was "star wars" .. which doesnt even make sense, but he meant, made up stuff...but i digress....) Anyway long story short, I got a copy of the tilt later on, but didnt know how what to look for other than low blood pressure, didnt know about POTS and the HR increase. Just recently, upon getting a 2nd tilt, I brought the old copy to the new dr, and said I just noticed my HR went to 123 upon tilt, was this test positive for POTS? and he said yes! How crazy, the idiot cardiologist didnt even know how to interpret the tilt test he ordered, but told me I must have fallen off a merryground that scarred me for life... ha, a far more likely explanation indeed;-)