Elegiamore

Roselover, I tried an brain damage therapist at $120/visit for six months. The training was just expensive tutoring. But it helped in one way - I gained more confidence in myself and began to push to try focusing on details, which I was avoiding, probably from fear of failure. The specialist trained me on how to grocery and drugstore shop, which lead to me doing my own shopping. And I re-learned to drive again. The cognitive training didn't go so well....I can't memorize at all. I forgot how to do my career (mortgage loan officer, which, frankly, involves complex ratesheet reading, memorization and learning all the details of dozens of loan offerings) and how to use software. I am desparate to find some kind of job that I can handle, but just figuring out how to drive and do the housework is an effort, so I'm not sure where to start. Open to suggestions....please. Elegiamore

Yes, let's get some more details on what you've read....I stopped retaining salt in 2003 and almost died of salt loss. My physician diagnosed that the salt loss was from Effexor, which was really helping me mentally. After cutting WAY down on water and salt intake, the problem disappeared. I also had an extremely low Vasopressin count, which helps your body hold salt. It was so low that the lab said it was a mistake! Would love to hear more.... Elegiamore

Thank you everyone for the input! I'm like Tearose - I'm EXTREMELY afraid of the cold/change of temperature when getting in and out of the pool. This is why I haven't tried it before. Jan's suggestion of getting PT was good, but frankly, that was why I wanted to try the YMCA pool in the first place - I just can't afford the PT, plus the first place I called made it clear that the did NOT want me as a client - they had no idea how to work with a person so deconditioned that they couldn't even stretch for ten minutes a day. So friends, I have to decide whether to risk $36.00 (a lot of money to me) to join the Y and see if I can tolerate getting in and out of the water. Looks like I will also need a kickboard. Flop, the washing your hair bit twice in a day got me concerned, also. A friend suggested that I go early in the day with dirty hair and just wash it afterwards! That's how I knew I was in trouble with fibro or something - not being able stand the muscle pain of washing my hair. Let's face it - taking a shower is one of POTS' biggest problems. Flop, I wish I had a good suggestion for you. Add to the hassle - washing a bathing suit and extra towel, driving - Roselover, I have nobody to help me at all during the day - thank God for your daughter - gas, getting a lock for the locker and shaving constantly - anybody else get dizzy when trying to look to shave under their arms? Probably I will try anyway - the pool is only open until 8:30 pm, but maybe my hubbie can go with me on nights he gets home by 7pm and eat afterwards (which screws up my stomach). Thank you for any further encouragement from anyone and Flop, let us know how you deal with the hair issue. with appreciation, Elegiamore

Dear POTS swimmers, Can anyone give me some ideas, or a website, of what exercises I should start with in the water? My POTS is under control right now, so I'm not afraid of syncope, but I am so deconditioned that I'm afraid I'll do too much. I am not supposed to be walking, as I have damaged my feet (tendonitis/two types) from walking too fast/long-once my POTS/CFS got better, I couldn't judge when to stop. The lady at the Y says that 15 minutes walking in the water is like 45 on land - goodness, how in the world do I start? My ortho doctor is absolutely no help and won't return my calls - any advice? I am in such pain from deconditioning/fibro that I can hardly wash my hair (not that showering is easy for any of us). Thank you for your ideas and experiences.... Elegiamore

Flop, Just read your posting and the responses - look at all the love going out to you from folks on this website! Wow - I thought I was the only one whose vision leaves instead of passing out sometimes....it's so strange. (((((((((HUGS)))))))))))) to you - keep up your great positive attitude. Lots of Hugs, Elegiamore

Hey, I've been eating from them too, but haven't gotten sick. And the cheap ConAgra won't refund your money at the grocery, but expect you to send the jar top, at your expense, to them and I bet they don't even pay you anyway! We had a mass salmonella poisoning at Thanksgiving Dinner a few years back from grilled turkey, so I emphasize and am glad everybody knows about this. You never know, Elegiamore

I forgot my entire career - how my job worked, over a period of three years of not working. I found that depression and personal trauma, along with a sudden increase of severe insomnia, brough this on. My heart goes out to all of you struggling with this worst-of-all symptom. I went to a brain damage specialist (while I still had the money) and she was somewhat of a help, allowing me to focus on details better, but I'm still forgetting how to spell (blast that Word for Windows for making it too easy!) and have huge organizational problems. As mentioned above, yes, worrying and fear makes it much worse. Just plugging along each day with something mentally challenging, even if it's responding or reading this board, is a good idea. Got a memory software product and failed it so many times I can't seem to make myself try it again. Let's hear any suggestions on how to improve this cognitive failure. No question that the lack of sleep is a big factor. And as for beta blockers, been on them for over 20 years (first treatment I tried), so kinda scary to think they are involved. Like others, I'm a little relieved to hear that I'm not alone with memory problems. My husband gave me a pocketbook sized notebook to write down things, but I just can't seem to interpret my thoughts. Any suggestions on how to hold down a job with this problem? Elegiamore

Rachel, For me, the biggest challenge with the hose is getting them over my heel. On bad days, I have to get my 6' 4" strong husband to pull them over my feet. I, too, am in Georgia and wore the pantyhose, as my thigh are just too chunky to fit the small legs part...and I got better help. Like the others, I stayed indoors most of our humid GA summers, but I always wore pants (self conscious) and just stood it, except for one day around 2002 when it was 102 degrees in Atlanta. We POTS people are stuff cookies. Thanks for mentioning the gastroparesis and hose - never made the connection - and I thought I was the only one with that ailment.

GREAT article, thanks so much for posting it. However, Dr. David S. Bell, a pioneer in CFS treatment, one of the pioneers of Charlotte, NC, along with Dr. Cheney and Dr. Lapp, has written an entire book on how CFS IS POTs. He treats his patients with IVs and has plenty of research data to elaborate on this conclusion. He has a website at www.davidsbell.com where you can download a pdf of his book and sign up for his newsletter, which I highly recommend. Reading his chapters on dysautonomia made me feel like a regular person. Too bad he moved to Lyndonville, NY and only treats locals now. BTW, Dr. Lapp is still in Charlotte for those of you in NC who are looking for a good doctor for POTs. Elegiamore

When I was able to work, my office mates would warn ME I was about to keel over, because instead of itching, mkoven, I would turn white in the face. It was very helpful! As for low BP, my neurologist told me that the problem was HUGE swings, not particularly high bp or low, that would do you in, as in a stroke or related event. As I went through a period of bp as high as 250/135 sitting and 70/who knows standing, I was not allowed to get up and down much. This is what lead to my severe deconditioning that is doing me in now. So, I think the organ damage with low BP depends on the swings, IMHO. Elegiamore

Y'all, Count me in on dry eyes since about 35 also, at the peak of my POTS experience. I have plugs in my bottom two tear ducts and that did me well until this fall when the heat came on. Suddenly, I'm LOTS worse. As others have stated, I also have a very dry mouth, which EVERYBODY should be warned about - I have easily spent $20,000 on crowns and bridges, lost teeth, etc. to the dry mouth syndrome. However, in my case, I have been going through menopause, which is probably why I'm worse. Here's a GREAT site for dry eyes - www.dryeyezone.com. They have their own medium thickness brand of drops that are often on sale, with a preservative that is harmless (at least to me and others), and a great discussion forum. You can get lots of questions answers and meet some great people there. Be sure and check it out. I can't afford Restatis, as my insurance doesn't cover prescriptions. Does anybody have any experience with closing all FOUR tear ducts? Might be cheaper for me. Good luck, Elegiamore

Mkoven, Boy, you are a brave person! What a challenge you face! Thank you so much for the advice - right now, even one stretch anywhere in my body hurts. I injured myself by trying hip and knee exercises. The pain in my groins keep going on, 10 days after I stopped any exercise. I just got some new shoes, as the old ones were the reason I damaged myself so much - didn't know that walking in bad shoes could hurt you so much. I believe that I have trigger points that need releasing all over my body, but don't I need to see a pain center to analyze this? Can't find a rheumatologist that knows the difference between trigger points and tender points yet - would a PT know this? My otho was not helpful at all, and suggested I find another doctor when I suggested I might have fibro and have POTS. Should I get a copy of my x rays and reports before I see a PT? I thought that biking was too rough on the knees; they suggested elliptical to me. What is your opinion? Bri...what did you find about muscle weakness and muscle mass loss? I am also wondering if this is part of POTS, or just because I was negligent and didn't move around enough. Thanks again, Elegiamore

Mkoven, Many thanks for the thoughtful reply. If is stopped the popping, etc. for you, I'd love to give it a try, once I can stop the immediate muscle pain. Hope your problem wasn't degenerative like mine.... Suski, I would be remiss if I didn't say follow your doctor's advice on hose strength, as you have to have a prescription from her/him for 30-40 strength hose. But, from my ten years of experience, let me just say...I tried the 20-30 weight about five years ago, and they didn't seem to do anything for me. Yes, the 30-40 hose are almost unbearable at times; when it was 102 degrees, 90% humidity one Atlanta summer, I ALMOST took them off. It is truly a test of bravery and determination to go this route, but in time they became like contact lenses; I just didn't notice I had them on. My biggest fear is that one's legs adjust to wearing them, and it's difficult to get rid of them, at least I still fear naked without them, even though I have stopped syncoping. But if you can afford them, and you have a prescription, and your POTS is serious, I'd buy one pair of pantyhose (for me, the full effect was missing with the thigh highs) and give it a try.....a REAL effort, testing it a little at first, and then once you've gotten used to them, trying standing or doing something that usually gets to you....and see what's what. Get more than one prescription from the doc, get fitted properly locally, and in the future you might can buy them cheaper online. I paid $95 for three pair at the local health store. Send me a PM for advice on putting them on, or buy one of the metal devices they sell, as getting those suckers on your legs is the hardest part of each day. The good news....everybody asked me if I had lost weight once I had them on.... Good luck and thanks so much for the reply, Elegiamore

Dear Flop, Thank you so much for taking the time and effort to answer my message. Since they are basically "support" hose, I thought that they were supporting my muscles all these years, instead of my own legs. I DEFINITELY felt muscle strain that I never felt before when I wasn't wearing them. Yes, that was one of the leg exercises I tried, but just 10 minutes of stretching and five of strengthening, plus five minutes of walking, there was so much pain after 11 days that I could not stand to sit up (pain in my hips). This is why the doctor has no idea how to get me started to recover quad strength, as well as other muscle strength. I am considering the water approach before I go to get therapy by joining the YMCA where I can swim in a heated pool. But I have read repeatedly that hot water is makes your veins swell, which would be REALLY BAD for POTS. I am VERY cold intolerant and couldn't swim in a cool pool. Open to any suggestions - again, many thanks, Elegiamore

Hi, folks! See my recent post asking if compression hose could cause muscle loss. During the last year I have been very sendentary, but have had very few POTS symptoms, and quit wearing my hose. Then I tried walking and ended up with inflammed feet and osteoarthritis of both knees, which appears to be caused by weak muscles that cannot support me. Can people with POTS build up muscle mass with exercise? I don't have enough money for doctor appointments with a specialist anymore (diagnosed by Dr. Low at Mayo in 1995), so I'd love to hear opinions on how to build back muscle mass without excrutiating pain. How do you explain to a physical therapist that you are exercise intolerant? Nobody believes this illness is real. Elegiamore

So sorry for your suffering! IC HAS to be related, as I TOO have had POTS/CFS for all of my adult life, and also have bouts with IC. I believe that there is a connective tissue situation going on here. Recently I started having bladder problems, too. Read up on fibromyalgia and you'll see that all these problems are involved. If Dr. David Bell is right and CFS and POTS are the same, then this makes, unfortunately, plenty of sense. Just try to hold on and remember, if it went away once, it will go away again. Good luck, Elegiamore

Help! I'm a POTS patient for 11 years and until last June, I HAD to wear Jobst pantyhose for TEN YEARS to function at all. For a while, I was well enough to work and off and on was able to walk 30 minutes a day IN THE HOSE. This summer, after I lost my income and my POTS was lots better, I quit wearing the pantyhose. In November, I found out I had osteoporosis (probably from Prevacid) and started walking 1.3 miles a day. In four weeks I was in terrible pain. Ends up I messed up my knees from extremely weak quadracep muscles and now have degenerative joints in BOTH knees. Rested five weeks and tried to do minor walkng and exercising WITHOUT the hose. Terrible pain. Osteo dr. diagnosed me with severe deconditioning and/or fibromyalgia (which I probably have), telling me that I would need PT and gradual exercise for TWO YEARS before I could exercise enough to stop the joint deterioration. ANYBODY know anything about MUSCLE ATROPHY FROM COMPRESSION HOSE? Should I put them back on and try to exercise with them? Can somebody with a good doctor, like Dr. Grubbs, check this out, for the sake of ALL OF US who found relief with the pantyhose? Would appreciate any advice; I can't afford the PT, as my insurance is reduced and I am trying to live on a small fixed income. Want to WARN Y'ALL. THANKS SO MUCH for a quick response - Elegiamore in Atlanta