Sushi

Good going Ernie! I find a huge difference between biking outside and on a stationary one inside. I use an ordinary bike, just because I already have one, with tight bike shorts to help with the pooling. Hasn't bothered me yet. It is freeing, kind of like flying. Here's a tip for recumbants though: you are on the same level as dogs and they find that cool--you may not. Try carrying a squirt gun with half vinegar, half water if you think you might be nipped. They learn fast.

Hi Morgan, I had a verbal report on my sleep study that said mild insomnia--improve sleep hygiene. I got the actuall report and I work up 90 times, never entered stage 3 or 4 for even a minute and had only a few minutes of REM--but actually didn't have apnea. Still the neuologist's verbal report didn't really snc with what I saw in the written report. Get your written report.

Exercise has helped me a great deal. I started with 5 minutes swimming each day. At the end of the summer I liked it so much that I bought a wetsuit and have continued to swim all winter. I built up over about 9 months from 5 minutes 5 or 6 times a week to now where I can exercise about an hour 5 or 6 times a week. I vary it a lot--some weight machines at the gym (the upper body ones give me the most symptoms), I ride a bike outside, I take 2 pilates classes a week, and I walk if it is a "tired" day. It has helped me enormously and I have been able to cut down my meds.

Bravo! Keep us posted.

Ernie, What kind of researcher is she? I'm sure we'd all be interested to know what she is working on, and what she tests you for. Hope it goes well for you.

After 25 years, a few referrals to psychiatrists, and a basket of blank stares, and "let's change the subject," you really, really appreciate it when you find a doctor who is very knowledgeable about dysautonomia, listens to you and values your experience as much as lab tests, and always includes you in decision making. My life turned around with his help and my hard work. Guess why? I'm told he was an excellent internal medicine doctor on the staff of a local hospital, but then he himself got POTS and had to leave the career he had put everything into when he was at the height of his career. After a couple of years of being totally out of commission, with the help of an expert in the field, he went back to medical school to specialist in the autonomic nervous system so that he could help others. And, in this mid-size city, his story really caught the attention of the medical community and now a great many of them are aware of dysautonomia and its symptoms and refer their patients to specialist care. He now practices 3 days a week, and yes he still has POTS but he is much, much better and certainly gives me and others hope that there is meanful life out ahead of us despite our disabilities. And, when you describe a symptom, he doesn't just nod like a good actor--he gets it, cause he has lived it himself. He he helped my restore self confidence also by showing me how so many of the vague and often debilitating symptoms I've had for so many years were related, had a real physcial cause and that I wasn't a hypocondriac. Applause for good doctors!

From what I've read, "to coffee or not to coffee" depends on they type of dys you have, and how you individually react. I am a total slug in the morning and without some caffeine and a bit of adderall, I'd probably just stare at the wall trying to figure out what day it was, for hours. Usaually I drink tea, mainly cause I have to watch my bones, and I put an electic kettle and tea pot next to the bed--almost like a butler! One think I've read about provigil, though I know it is miracle for some, is that it increases nitric acid and there is a school of researchers who feel that this addes to our overall problems. But it is by no means proven. I spose that Adderall has been said by others to have bad side effects long term, but for now it is a good friend and doesn't raise my BP too much at the low dose I take. But now and then I know I won't even get out the door without a cup of coffee.

When I felt I was ready to start exercise again I looked at Curves and other gyms. For me a conventional gym is better in that I know what I can do for how long, and it is not always the same every time. I too could not do the cardio part or the upper body. I found another gym which is very close and they had a trainer work with you the first time to help you find the right size settings on the machines and make a program that is right for you. They also have free classes if you are a member and the pilates has been perfect, though in the beginning I could only do about half the reps the others did. Now after about 8 months, I can almost do the full class and can even do a "little" upper body work on the machines--like starting with the lowest weight and feeling good if I could do one repetition. Now I can do 12 very slowly and with a heart rate monitor as my guide. So, for me, I do better if I can choose and control my own exercise program and the gym I go to is more than half "oldies" trying to keep in shape, so I don't feel out of place. If you can find a a gym with a warm water pool, that is even better. In the summer swimming was the first thing I tried and I started with 5 minutes and would need to recover and pant after that. Now I can do 40 or 50 minutes, but again I pace it with a heart rate monitor and stop as soon as I start "getting those feelings." But it has been marvellous for me in gaining stamina for ordinary life tasks. I think the secret is to go very, very slowly and refuse to do anything you know is not going to work for you. I only increased my exercise sessions by about 2 minutes per session per week. If Curves gives you that freedom, go for it. I just didn't want to be pressures to do things "their" way, and of course they know nothing about dysautonomia and were using conventional cardio training methods. As far as payment, I signed up on a yearly basis 1) becuase it was cheaper, and 2) because even though there were weeks on weeks when I wan't up to it, I always knew I could walk in the door any day I felt up to it, and that mattered to me. If I paid by session, I'd have gone even less. Sorry for the long riff, but exercise has helped me so much I want others to know, but not to let anyone push you into something you know will have consequences. I also found a pilates teacher who has NCF and is living an almost normal life, largely do to pilates because it strengthens and trains us to use the muscles in the core and legs that help with pooling. I take a private lesson with her each week and she know how to set the level correctly for ME, she has been there. Also read the article in the lastes Dinet newsletter on exercise--interesting and unexpected results coming out of a study with POTS and exercise.

I've found a comfortable easy to get-into combo that is working for me. I found a pair of neoprene zip-up shorts by Everlast that comes up several inches above the waist but doesn't roll. By getting a pair that was small and tight, they give really good compression and go to the knee. Then I wear Bright Life Italian cotton 20-30 knee socks and only my knees aren't compressed, which bothered me anyway with the pantyhose.

I had to titrate up on cymbalta (my doctor said I could start by taking one (30 mg) every 3rd day. When that was too hard he said to open the capsule, shake out half or more, then very, very slowly go up to a full capsule. Took me about 5 weeks. I expect that if I ever need to stop it, I'll have to do it the same way. Not totally accurate, but it worked.

W & R Mom, I got an arctic heat vest last spring and it made a big difference over the summer. There are lots of different kinds, different technology, and people have their own preferences. I like this one because it is lighter weight and looks like a normal vest. It can also be warmed in the microwave for winter. I used to put it on as soon as I went out the door (in summer) and then when the car cooled down I'd pop it into a small cooler with freezer blocks, then use it again when I got out of the car. The minus with this style is that is doesn't stay cold quite as long as some of the others. The pluses are that it is light-weight, good looking, can be heated, and they give a medical discount. They are made in Australia and I actually ordered mine from there because even with shipping the exchange rate made it cheaper than buying it in the US. Good luck.

My doctor also recommends an abdominal binder for the same reason. Some research has shown that splanchnic pooling is more of a problem than leg pooling. I found a really high compression Maidenform flexees girdle type thing that zips up making it easier to get in and out of it. At first I hated it. Now I don't even notice it and it does help.

Maxine, I'm pretty sure I have EDs, though mild. I have most of the markers and have always had a pop in my sternum when I bent backwards. I had a bunch of doctors listen to it, and guess what? They weren't interested. I'm lucky though, there isn't really pain but a feeling of tightness, or of something being caught, and it is relieved by popping myself. Though I'm pretty sure that I have mild Eds, and my dys comes from that, I don't feel like investigating it and jumping through all those hoops. I do find that pilates stabilizes my joints a lot--probably from strengthening alignment and building muscles where they count.

Exercise has helped me a great deal too. Started with 5 minutes of swimming in the summer, and built up in infinitessimal increments. Added pilates (all done lying down), outdoor cycling, cause I love it, walking, yoga (the hardest for me cause you are standing and often the pace is too fast in a gym class.) Also use weight machines. I love exercise and it is a real discipline not to do too much. After about 9 months I'm up to around 30 min to an hour (depending on the type) and 5 or 6 days a week. Huge difference. In fact I didn't want to give up swimming when it got cold and my gym doesn't have a pool so I got a wetsuit and it is really fun. It is harder with all that cold water gear on, so takes less time!

Bright Life (Allegro, their much cheaper house brand) fit me well and they give you 30 days to try them and will take them back without question if they don't fit, don't work, you hate them, or anything else. They are also having a one-third off sale on 3 different products each day, till Christmas. They are very nice too. I just ordered a new line of cotton knee socks using their sizing chart, and they were too small. Not only are they sending me a larger pair, but said to keep the old pair--less work for everyone! So once your doctor guides you on the compression level you need, they will help you fit them over the phone or online through size charts. If the ones from WalMart don't list the level of compression, it probably isn't enough to help you much.

Don't think you worry too much. Nobody told me I might not want to drive after my TTT, so I went by myself. Had to sit there for hours before I could drive home.

I just had blood tests results that show I can't utilize either B 12 or Folate, no matter how much I take. I have been supplementing them for years and still test low. It seems to be related to some mutations in the genes involved with the methylation cyle in the cells. One of the ways to get around it is, (at least it was prescribed for me) the other form of B 12--hydroxocobalamin. (hard to read the small print). Also I've been given another form of folate (L-5-methly tetrahyrofolate), Intrinsic Factor and a couple of other things, the idea being to very slowly re-activate the methylation cycle which is, at present, blocked.

God help us if we were stopped while driving and asked to walk a straight line!

Nope, run into everything. Grab hold of things as I navigate to steady myself. It isn't that I'm dizzy, I just seem to aim wrong. I've found one thing that helps with this balance thing (a tip from an autism therapist)--press the tongue into the roof of the mouth and for some reason balance is improved.

Cymbalta has definitely helped me a lot--but it took me about 6 weeks to get up to the 30 mg my doctor wanted me to take. It seems that for some it has to be introduced very slowly in tiny amounts or even every 3 rd day. Now it is one of my "count-ons" and I wouldn't want to be without it. Dry mouth? I think a couple of mine do that. I live with it and it is a good reminder to drink water. I also had bad reactions to florinef and midodrine--we are all so different.

I don't know the medical whys and wherefors but klonopin was precribed for me just for that reason--I have more exercise tolerance, can be out and about longer, etc. I believe my doctor said it has some anti-seizure properties, working on electrical misfires, (boy that's great technical language). Anyway, it helps me too.

Angela, Just to throw in another 2 cents, you can make all the right arrangements for wheelchairs, (and they should try to seat you in certain seats that are more accessible), but I find that it is necessary to keep checking--before I board one flight I ask that they make sure there is a wheelchair at the other end. And sometimes they put my handluggage in the overhead without being asked, usually I had to ask. Same with getting your luggage at the end, you may need to ask your wheelchair person to stay with you and drag the luggage off. But it is SO much easier than flying without a wheelchair. Oh, and if you can get one of those transparent wallet things that hang around your neck with your boarding pass and ID, that helps a lot. Good flying!

For flying I also take powdered electrolytes in sealed packets so they don't look suspicious. You can get packets of Emer'gen-C with or without sugar in health food stores--full of electrolytes, or, from the same company, just the electrolytes without the C--called electro mix. Then take a large empty water bottle with you through security and fill up at the 1st drinking fountain and add the electrolytes--and keep glugging. Also the compression hose and a tight girdle helps. I asked the airline to give me wheelchair service last time, and it made things ever so much easier. Happy flying. With all that, I had no trouble.

I often get this too. I think the sunlight shining through the trees gives a kinda strobe light effect, which many of us can't tolerate. My way of dealing with it is to keep a baseball cap in the car and angle it to cut out the sunlight/tree business. Works pretty well.

Dear Mary, I think most ANS specialists want a referral--will your PCP give one? I see a good one in Pensacola. He is probably listed on the doctor section at POTS place. My PCP gave a referral. Good luck. Write to me if you want more info.