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Any Hope When The Usual Treatments Fail?


jem15
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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;-)

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(((((Caterpilly15)))))

Those who've gotten better seem to have gotten to the root of what caused their POTS and treated that the best that they can. Even then, rather than a cure, most have symptoms that ebb & flow, abate & worsen.

Sorry if I've missed this, but did your POTS suddenly come on after chemo OR have you always had symptoms and now you have an official DX? Tell us more about your onset and daily symptoms.

Julie

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Please don't get down or give up(I know easier said then done). My son, after being sick everyday for over 1.5 years, is now doing so much better. He was sick frequently for 2 years before the daily events started. He missed 1/2 of his 8th grade year and his entire freshman year of school. The entire month of February, he was in bed for 20 hours a day. Things were not looking good at all. He just started back to school, only 4 hours a day, but it is great progress. He still wakes up nauseated, but it is not lasting as long into the day as it used to. He is now functional by 10 am, instead of 2 pm or later.

He took a turn for the better after a follow up appointment with his doctors at Case Western University Hospital in Cleveland on August 12th. At this appointment they upped the dosages of 2 of his medications and lowered another. They also added 2 more supplements to the list of meds to take. My son is now sleeping through the night, which the docs believed was part of his problem(not enough sleep = migraines- his were silent) It has only been a couple of weeks, so I'm keeping my fingers crossed that this is what we have been waiting for. We are hoping the new dosages keep working and that they don't stop being effective.

My son does take Thermotabs for his salt supplement. They haven't given him any negative side effects. I think that a combination of the new dosages, the new supplements and the water jogging my son has been doing has brought about this change. I give all of the credit to his two doctors at Case Western, they have been great.

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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?

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(((((Caterpilly)))))-

Thank you for sharing your story. Hard to read & even harder to have lived through. You are a survivor in every sense of the word :) You are an inspiration to me.

Your onset is very much like my son's. It seems like a typical post-viral onset, but probably isn't due to the fact that you never improved. When we look closely at Mack's medical history, there were clues. He had severe infant colic, cyclic vomiting, headaches following exertion, fatigue & stamina issues, severe constipation after dairy introduction, etc. I bet you have some similar early clues. Also, look at your parents, other siblings? Anybody have similar stuff- fainting, lightheadedness, dizziness, tachycardia, GI issues? I'm guessing that you have a genetic component and THAT's why you've not recovered.

Chemo, BTW, will most definitely set you back. Think about it, any trauma, illness, surgery, accident worsens dysautonomia. Cancer & chemo qualifies as all of those & more. Be kind to yourself. It will take a while to get back to your previous level of functioning.

I adore Mack's ped at Johns Hopkins. He specializes in treating kids and teens with dysautonomia. Whenever I ask about Mack getting better, he says: "We've only just begun to fight." I echo those words to you. I suspect that there are MANY treatment options you haven't explored. I am sending a link to a document that Dr. Rowe gives all of his patients:

http://www.cfsnova.com/OI_and_Treatment.pdf

In the middle of the document, it outlines meds used to treat dysautonomia & how & when to use them. Study that & see which might be helpful to you. Share with your local docs. Remember to try anything new- one med at a time in a tiny dose that you can titrate up to a therapeutic level.

Also, study all that you can about dysautonomia. There's a lot of information out there, even on the DINET home page. I first learned about MCAD there- as a cause of POTS. Treating that has helped me improve tremendously. No one cares as much as you do about getting better. I believe you will improve. You have lived through cancer. I suspect, THIS will not keep you down.

Hugs & HOPE-

Julie

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Julie-

Thank you so so much for posting the link to Dr. Rowe's article.

It is wonderfully written and offers many suggestions- it definitely is a go to article when problems arise or as use in making our own checklist (as in the Checklist Manifesto) Our symptoms and conditions can be as complex as coordinating numerous professionals in an operating room - after all most of us have to orchestrate care among numerous doctors (where oh where is Dr. Welby and Consuela?!).

tks again,

noreen

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Hugs Caterpilly,

it is tough to have one major illness but add cancer and chemo and there is no wonder that your body is begging for a rest.

Can you list the medications you have tried (and what effect or side-effects they had) as there may well be treatments you haven't yet tried. Finding the right meds is tricky and involves trial and error to end up with a combination that works for you.

Flop

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:( (((((Caterpilly)))))-

For my daughter, we found low doses of alot drugs works best for her. Midodine is only 2.5 mg 3-4 x.day. Mestinon is 30mg 2-3x day. Florinef is .1qd. wellbutrin xl 150. Lots of H1 and h2 drugs. Diet management. She started each med at a 1/4 -1/2 usual starting dose. She would up it until side effects bothered her. If she noticed ANY benefit at the lower dose, she stayed on the drug while we added a new one. Diet is very important for her.

This seems to be different than doses alot of people use but it took from homebound for 5 yrs to school fulltime (though suffering miserably this week :( .

Louise

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Hi Caterpilly ~

Yes you are a warrior when it comes to perseverance - and it does stink that you've had to be so -- I bet you are tired. Real tired. However under that tiredness is an incredibly strong person..... I know you never wanted to know you were that strong perhaps .... but you are. I understand and empathize with the doing this all alone part of your story. At age 50-ish I have four joint replacements that about killed me to endure -- and now a host of other things including orthostatic intolerance which brought me here to this website. The thought of having even one of those re-replaced -- well I just cannot go there.

Yet objectively we know I will likely to have not only one - but all four of them redone in upcoming years. That with small fiber neuropathy, Hypermobility Syndrome, wacky vital signs, chronic pain -- well to me the future looks bleak. Very dim - and as you nobody to help.

The way that I cope is to keep up with my spiritual life endeavors - which for me is weekly church and daily prayer...though just recently could I even attend church and to do so is difficult getting in and out of pews etc. But if I keep reminding my self to do things to bolster my faith - and not give into temptations that I am handling all of this 'alone' -- it seems Providence follows me and guides me.

Do I make mistakes as regards how to live? Which docs to see? How to deal with disability in my life? All the time. Yet I choose for that to not be my focus - my focus instead is to acknowledge how my never give up spirit will keep me in good stead. Persevering is my road - because in that I can never lose.

Then I like to remind myself of how I am doing at any exact moment ... for now a roof over my head. For now making payments on my medical debts. For now able to walk. For now I have food. For now I have some insurance. There are a lot of things I need to gratefully acknowledge as wonderful gifts -- though it's sad to think others are worse off than you - you know there always is.

I do struggle with the anxieties that this brings. Being alone and aging with all these issues can take it's toll on your psyche. I've cried. I've done all kinds of things to keep things in perspective and not freak out over it all. Yet if I look backward -- I do see that I'm more knowledgeable than I was before this all started, I'm more compassionate toward others and hope to help others, and I still have it in me to follow my dreams.....

The things I can control I take pride in - such as eating healthy, keeping as active as I can muster, trying to stay hydrated, trying to keep a positive mental attitude. For some these things may seem simple and elementary - but my guess is that they are not as simple as they seem as so many health issues stem from lack of proper diet, exercise, hydration etc.

Anyway - do stay connected with your own network of friends - no matter how small, maybe try a Meetup group function, or if so inclined get involved in a prayer group of some kind if you are able to sit through a meeting. Some sort of healthy diversion of some kind as a gift to yourself --- Your are so deserving of all good things and any respite that comes your way. Anyway a lot of babble just to say I feel for you - and I do know things never stay the same - so keep hopeful as you are - it's for good reason!

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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!

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Caterpilly

I'm so, so sorry that life continues to be so hard for you.

Even a mild infection can aggravate dysautonomia, leading to a loss of function and a very long recovery. I can't imagine what impact cancer would have - I would think that the loss of function would be amplified, and the recovery long but not impossible.

Last year I continued to go downhill after a succession of infections. I was honestly doing everything I could to stop the downward spiral, but my body just didn't respond. In the end, I walked out of my office (not even stopping to turn off my computer), I went home and didn't go back to work for 5 weeks. I cried in bed for the first 24 hours, then I went to my bookshelf and took back to bed all of my books on health and healing (I've got quite a few...) and spent hours looking for clues as to how to help myself. In the end, I re-read Deepak Chopra's old book on Ayurveda - the idea was to bring the body back into balance using an appropriate diet and health habits.

I decided that this was the approach I'd take. I didn't do too much that was different, I just kept going with a diet and with health habits that were soothing to my illness. It was like trying to turn around the Titanic, but my decline slowed, and then slowly reversed. My bladder had started to fail - I had become incontinent and my bladder was over-active - it slowly resolved itself (after about 12 months); my night-time respiratory symptoms also resolved. In the end, I was left once again just with basic dysautonomia symptoms such as fatigue and nausea. I saw my physical therapists weekly, then every second week, then every month, now every two months.

Two years after my last big exacerbation, I've recovered a lot of the functioning I lost. I think you are entitled to despair every so often, but I want you to know that recovery of functioning is very possible, even when it seems to be implausible.

Re your problems with weight-bearing as a child - apparently children with rheumatic heart disease often present with odd rheumatic symptoms and a reluctance to bear weight on affected feet/legs or whatever. Failure to treat RHD results in damage to the heart. I'm not suggesting that you have RHD, but it does sound as though there are some similarities, just with a neurological impact.

I'm not very prayer-ful these days, but I'll say a heart-felt prayer for you tonight.

With best wishes

Dianne

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Thank you :-) For your thoughtful reply too! We have no guarantee of any future -- so yes let's hold on to the now and run with it.....or walk.....okay sit LOL! I notice if I 'live' today well - my tomorrow seems to be a bit better - because I have a better past -- wow does that make sense? Haha -- Yes looking back we can see how far we've come....since some darker days for sure. So time to celebrate life now - and dessert is a passion of mine as well as I will create and at times consume such treats - for me giving them is as good as eating them (almost). Other people, their judgements, their lack of concern or care - even family members or especially family members can be a huge source of 'yuck'.... But yet every single human being has trials of this nature I'd venture - that seem to come at times where you need the exact opposite...healing and support, encouragement and hope. And if they escape those pains well sure enough everyone has some sort of issue to deal with - life's just like that. What that has done for me is give me so much pleasure when I hear people behaving in loving ways just in seeing it is healing.....today I saw a woman in her 60's I'd guess trying to pay for her daughters very expensive medicine at the drug store....there were issues as it wasn't 'her' medicine but her daughters medicine bill - you should have seen her struggle and fight for the privelege to just 'pay' so her daughter wouldn't have to -- it was very moving to me to see that kind of love. So while I may not 'own' such experiences of love in my own life - I can sure thank God for any love I see around me. And as every person has the capacity to love - I will continue to do this...have concern and compassion for those around me. So that no person should feel as left out or rejected or lonely as we know life can be. I'd spend my life well to just ease one person's pain, make one person laugh.......bake someone the best chocolate chip cookie they've ever had!

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Hey Caterpilly-

There is documentation of seizure-like activity (separate from epilepsy) that occurs during syncope in autonomic dysfunction. Sounds like that might describe those early faints. (I've had one like that too.)

There is a strong connection between dysautonomia, fibormyalgia, and chronic fatigue syndrome. And, a quick google search shows a correlation between spondlytis and dysautonomia as well. Here's one link: http://www.springerlink.com/content/f47015044p4724t2/ Does the spondlytis explain the foot and leg pain? Do you pool blood when you stand for long periods? Could that also account for your pain symptoms?

With your Dad's VVS and fibromyalgia, there is a good chance that you do have a genetic component to your symptoms too, which may explain WHY you haven't recovered as quickly as you would like. I would hang on to the fact that you DID have years that were relatively symptom-free. With time, the right meds, and lifestyle modifications; I suspect that you will get there again. I might even look into some alternative treatments to nurture your body's own defenses to try to restore a balance to your autonomic nervous system.

You have a great attitude considering all you've dealt with. You are so wise to focus on the present and finding happiness in the small things. I'm sending prayers, good thoughts, and positive energy your way :) Be patient. You've been through a lot.

Hugs-

Julie

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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!

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