pamyla

Hi Ling, when I first got sick I had the feeling of electricity going down my spine. For me, it was somehow related to a long-standing infection I had (2 years). Once I finally got treated for that it went away. I'll occasionally get the spine-tingling again if I'm coming down with a cold or something. Hope your doctor can help you figure things out. Take care, Pam

Propel doesn't have any electrolytes? I had no idea, I always felt more hydrated when I drank it - wishful thinking I guess. I can't tolerate sugar well either, but I've been buying the powdered form of gatorade and I just throw a pinch or two in my water. It seems to help. Sometimes I'll add a tiny bit of sea salt to my water, although gatorade tastes better Steph - What do the Frost, Ice, etc flavors taste like?

Hi James, I have the same problem you do with the cold weather. In fact, sometimes I seem to be able to tolerate heat better than cold. I recently asked my doctor about it and he said alot of his patients feel worse with the cold. It has to do with overconstricting your blood vessels. I usually just try to dress warm and have a space heater in many rooms The symptoms did scare me at the beginning, although I found it helped to educate myself on what was going on with my body. Then at least you can understand and know what is happening when you experience a flare-up. Pam

Hi Janet Just wanted to say a quick hi, glad to hear you are doing well! How's life in the education world? Take care, Pam ps - I need some of that polarfleece - brrrrr!!

Thank you guys so much! This board is such a help, not sure what I'd do otherwise! Tearose, actually I already have a parking permit. I dealt with that last semester, and even with a handicapped permit I had to get a special handicapped school permit. My biggest issue that I'm worried about is giving presentations. I have to sit, otherwise I get the shakes and start sweating which is pretty embarrassing Last semester my teacher was very understanding. However, this semester one of my teachers has on his syllabus that if you need accomodations you need to go through the disability office and come talk to him the first week of class. Stephanie, thanks for sharing your experiences with your school. My college has over 30,000+ so I relate! Luckily, my program, and hence my classes, are often small (15-20 people) and you get to know the professors pretty well. But, at the same time, it can sometimes be overwhelming because grades always depend on class participation , and on a bad day I might not have a clue what we're discussing

Thanks for your reply Tearose That will definitely help me get started. And, that's a good idea to bring a note when you fly, etc. Here's what the disability office wrote to me - <snip> You will need to bring a letter from you physician to our office. The letter should include a diagnosis, history, functonal limitations and recommendations for accommodations. </snip> How much detail do you think I should provide about what my condition is? Thanks again!

Hi everyone I need to submit a letter to the disability office at my school detailing my condition and any accomodations I may need. The letter needs to come from a doctor's office, but as pots doctors seem to have little time as it is, I thought I'd take a stab at writing something myself. I plan to just reference my condition and then attach information taken directly from dinet's web site, but I'm not even sure how to reference it. Do I mention POTS? Or do I call it Dysautonomia? I think my diagnosis is technically POTS and NMH, but I'm not a fainter. Any advice on how to proceed? Thanks! Pam

Usually my hands are ice cold and sweaty but occasionally they will become hot. Strange... There doesn't seem to be any in between for me either. Are you hands normally cold as well?

I was looking at that Roomba vacuum too - I think that product was made for us The way I sweep the floor is that I use a dustbuster and sit/crawl on the floor while using it. For vacuuming I'm lucky that I have a husband that can do that chore, because otherwise it just wouldn't get done.... While we're on the subject of cleaning, anyone have any tips for cleaning the shower?? That daily shower spray just does not cut it.... Pam

Tanna - yes my legs do turn purple, I notice it especially in the shower. I think this is pretty common to us potsies I haven't thought to notice whether butcher's broom helps the coloring, although I'm guessing it does as my legs usually ache when they turn purple... If you do try it, let us know how it works for you. Nicole's mom, you're right, butchers broom can act as a diuretic, in the same way proamitine can. When you squeeze the vessels you can squeeze out fluid and hence dehydrate yourself. I found I couldn't tolerate proamitine, probably for that reason - I got dehydrated and felt worse. I found Butcher's broom to be milder and I didn't notice that same effect. But everyone is different, so as always, use caution.

Hi Tanna, I sometimes take Butcher's Broom. I believe the effects are similar to what Proamatine does, which is squeeze your blood vessels. I find BB to be a pretty mild effect, but I'll sometimes take it before I go to the store and I've noticed my legs ache a little less. Here's more info: http://www.viable-herbal.com/herbdesc/1butcher.htm

Hi Nina, Just wanted to wish you well for your test. That's a lot for anyone, and I'm so sorry to hear that pots (and other stuff) is kicking in. Can you take a day or two off from work? I'm in grad school as well and there have been a few times where I've felt really overwhelmed as well, and actually you've been one of those people who inspires me to keep going. So, here's me saying - you can do this! Try and relax and take things one at a time (easier said than done I know!) Hang in there, and if you want to review some statistics stuff with me, let me know (such fun!) Pam

I just checked and I have access (through school) to that article as well as the other 4 listed in that supplement issue. I'd be happy to send you any of them, just let me know which one you're interested in. Or, if it's okay with Michelle I could post them (didn't want to upset any copyright issues, and they're also pretty long) Pam ******************** 1. Update on the evaluation, pathogenesis, and management of neurogenic orthostatic hypotension. Low, Phillip A. MD[update On The Evaluation, Pathogenesis, And Management Of Neurogenic Orthostatic Hypotension: Introduction] ? ? pg. S4-S5 2. Orthostatic hypotension: Causes, mechanisms, and influencing factors. Mathias, Christopher J. DPhil FRCP[update On The Evaluation, Pathogenesis, And Management Of Neurogenic Orthostatic Hypotension] ? ? ? pg. S6-S11 3. Neurally mediated syncope: Pathogenesis, diagnosis, and treatment. Kaufmann, Horacio MD[update On The Evaluation, Pathogenesis, And Management Of Neurogenic Orthostatic Hypotension] ? ? ? pg. S12-S18 4. Postural tachycardia syndrome (POTS). Low, Phillip A. MD; Opfer-Gehrking, Tonette L.; Textor, Stephen C. MD; Benarroch, Eduardo E. MD DSci; Shen, Win-Kuang MD; Schondorf, Ronald MD PhD; Suarez, Guillermo A. MD; Rummans, Teresa A. MD[update On The Evaluation, Pathogenesis, And Management Of Neurogenic Orthostatic Hypotension] ? ? ? pg. S19-S25 5. Recent advances in the treatment of orthostatic hypotension. Robertson, David MD; Davis, Thomas L. MD[update On The Evaluation, Pathogenesis, And Management Of Neurogenic Orthostatic Hypotension]

I have continuous problems with dry eyes (but not dry mouth). I use eyedrops as needed with the disappearing preservative. My eye doctor said that she often sees patients with connective tissue disorders that have dry eyes. That goes along with my EDS diagnosis. I also have a friend with Sjogren's Syndrome and I don't think the dryness I have is as severe as hers. She ended up getting her tear ducts plugged. Hope it gets better for you.

I've also had good luck with chiropractic care (mostly!) Over the years I've seen 3 or 4 different chiropractors. I'm not sure if my pots symptoms improved, but the pain in my back and neck definitely did. Michelle, I had to write when I read your story because I had a very similar one! A year or two ago my back locked up and I called a doctor out of the yellow pages. I was in some serious pain and all she did was tap on my back a few times. I don't remember all the details, but I do remember her commenting on how my legs were now the same height. The pain wasn't helped at all and I was pretty mad I had to pay her. Luckily I had gone to chiropractors before and knew that was not the norm. The next morning I tried another chiropractor who did the normal back cracking, as well as electrical stimulation and ice packs to get the swelling down. I felt much better. Anyways, I think that gentle manipulation is called Logan therapy and it's *very* different from regular chiropractic care. Pam

Hi runnergirl, I have a lot of the same symptoms as you and tend to believe I am of the hyperadrenergic type too. I currently take atenolol and zoloft - both very low doses. If I had to pick one though, I'd take the beta blocker. I take a 25 mg pill and have half in the morning, half at night. Anything more and I'm too tired, but this amount is just enough to keep my heart rate down. I also have a prescription for xanax. I don't take this much at all, but occasionally I'll get that panicked feeling and it helps me out with that. Keep us posted on how it works out for you Pam

I thought some of you might be interested in this as I know Paxil (and other SSRIs) have been discussed here in the past. GlaxoSmithKline to Release Paxil Data

When I was in college my best friend broke out in a rash all over her body. She had these big red spots about the size of a nickel all over. She went to multiple doctors and they finally figured out that her body was reacting to a yeast infection. I never would have guessed that was the cause, but treatment cleared it right up. Hope it gets better soon.

Hi Paige, I'm usually a light sleeper too and tend more towards insomnia. However, occasionally my body goes into a deep sleep (I feel almost drugged) and I find myself sleeping long periods. When I drag myself out of bed I usually spend the entire day feeling foggy. For me, this usually only lasts a few days and then gets progressively better. When I hit these periods I try to get more rest than usual. I think my body is just trying to achieve balance and for whatever reason I need the extra rest. However, I agree with making yourself get out of bed at a reasonable hour, cause the last thing you want to do is mess up your sleep schedule even more. So, I'll let myself stay in bed for an extra hour or two and then I'll get up and have a low key day. Hope you get to feeling more rested soon Pam

Hi, you may want to try posting this on the Virginia forum. I've talked to someone who was taking that, but I'm not sure how often she checks the forum. hth, Pam

Hi Sue, here's another post that talked about how much sodium to take daily. http://dinet.ipbhost.com/index.php?showtop...c=739&hl=sodium hth, Pam

I've been on zoloft for years. I don't specifically remember any problems with irregular heartbeats, but I know I had a very difficult adjustment period. It took me about 3 months before I felt "normal" again. (before that I felt very spacey and tired) But I was feeling pretty low, so I stuck with it, and it did help me feel better eventually. My advice to anyone trying an antidepressant is that only you know what you can tolerate. Go slow, and if it gets to be too much talk to the doctor about trying something else. While it helps some, it's not an answer for everyone unfortunately. Pam

Blackwolf, do you know what kind of thyroid hormone you were given? I think the normal is T4? (sorry, my bad memory is kicking in!) And I think I took T3... Anyways, here's some more on that if you're interested. http://www.drrind.com/thyroidscale.asp Also, I thought this was interesting. This was the doctor that helped me to raise my body temperature. I notice that 'orthostatic hypotension' is now on his symptom chart (I don't think it was before). Maybe he's seeing more dysautonomia patients than he realizes http://www.drrind.com/scorecardmatrix.asp And as I said before, this falls into the alternative health realm, so take what you will from it Pam

Thanks for the links everyone, that makes for some interesting reading. Maybe I missed this, but how does a rare disease get placed on the list? Is it by politicians? doctors? etc? Also, I saw that EDS is one of the rare diseases recognized.

I experienced something similar when I first got sick with pots. The itching came on after a dose of antibiotics, but there was no rash. The doctor gave me some claritin and sent me on my way. It didn't really help me. Luckily the itching abated after a week or two. Hope yours does too!