Jersey Girl

I almost feel "normal" again for a short period of time after swimming. I would go as often as I could without overdoing it. It is highly recommended form of exercise for those with POTS. I try to swim even when I don't feel great because it makes me feel better. But I don't have near the tolerance that I did before POTS.

I also get this same phenomena. I am not sure if it is related to how much I have eaten or not. I usaully try to have a salad for lunch and it still happens. I feel very tired and dizzy so not sure if it is related to just being exhausted at that time as well. I usually lie down for at least 1/2 hour, sometimes an hour. and it helps for the rest of the day.

I also "pee" all the time, but I also believe that I "peeed" alot before I was diagnoed with NCS and POTS. My 24 yo daughter also urinates alot as well and has IBS but does not have any other symptoms of NCS or POTS. It is generally worse after my period. some days it is hard to maintain a good fluid balance. I like Propel made by Gatorade to replenish when I exercise or mid-morning snack. Extra salt just makes me go even more. Marty

I was on Neurontin 400 mg four times a day for a year and a half. The only side effect I had was being more tired than usual but at the time I needed it-that was the least of my problems. It is a miracle drug and enabled me to get out of bed at the time. I am now off of it but feel like at times I could use it when the myalgias and neuralgias act up in bad weather.

Sorry you have been going through so much lately. I was pregnant at 41 with my 4th and delivered at 42 (Now I'm 51 1/2) and I developed POTS at age 49 1/2, but always wonder if I didn't have symptoms all along, especially after what happened after the last delivery and I ended up in the hospital for a week because of the terrible leg swelling --my legs had no shape to them and I couldn't walk (Was this a predictor of things to come?) I was totally deconditioned initially but finally felt great a couple weeks later at home. I had been on bedrest for 12 weeks prior to delilvery for premature contractions. I truly believe there is a hormonal connection to POTS (mine possibly perimenopause at this point)--and Dr. G at NIH agrees with me, he just doesn't know what it is exactly. I don't know how we manage to get through anyone's elses crisis when we are continually having our own, but we do! This board is wonderful for those of us with POTS.. I think we're the only ones that can really understand what each of us is faced with. I will hope that your next IVF is successful but don't wait too long to get onto an adoption list--the older you are, the older the child who is available to you for adoption.

I went with my family on a Disney Cruise over X-Mas this past December and I was pretty much the same as if I had been at home. My only problem was when we went on an excursion and supposedly lunch was included, but they didn't serve lunch until the bus ride back to the ship and I was expecting it at the normal time they served lunch on the ship. So just carry food and water with you if you go off the boat. I brought a lot of bottled water with me to the ship because they wanted to charge alot to purchase one. But I would go again if given the opportunity. I think I gained 5 pounds from all the food. Have fun!

Hi! My initial application was denied for SSDI yesterday--not totally unexpected. I live in New Jersey and don't know of a good lawyer to go to. I would like to file a class action suit on behalf of everyone with POTs who was ever denied. I believe that because this disorder affects mainly women--not that men are any less affected when they have POTS--that we are denied equal access to benefits. I went to the disinissues website and they don't list new york or new jersey attorneys. does anyone know of a successful lawyer in New Jersey that has handled an appeal? Also the Vanderbilt University website has an outstanding explanation of orthostatic intolerance and the future direction of research. Even though OI has many different causes, it shares an "abnormaly enhanced sympathetic drive to the cardiovascular" system. Future research there will study the estrogen dependent changes of the plasma. This center seems miles ahead of anyone else. Their web address is www.mc.vanderbilt.edu/gcrc/adc

Thanks for answering. I tried Zoloft, Paxil, and Prozac and had terrible reactions to them all. Yes, my moods are definitely worse at this time. I am taking Xanax as well but it doesn't do anything for this kind of headache. I also tried Alesse and prometrium 2 years ago and almost had a stroke both times.

I have the most debilitating headache during my period. It is a neuralgia--the nerve that runs behind my left ear, above my left ear into my temple and in the back of my eye. I have had this kind of headaches since my POTS began and took huge doses of Neurontin for 18 months which I tapered off this past December (I don't feel near as tired or fatigued as I did while on the Neurontin). I react to NSAID's so have been stuck with aspirin and tylenol to try to deal with it. The only thing that makes it feel better is to lie down and fall sleep. Does anyone else have this phenomena and if so how do you deal with it or what med do you take?

I "used" to be school nurse so I know that you're entitled to accomodation without discrimination in your schedule by federal law. The nurse should have a copy of your plan in her office and if you are 18 you can ask to see it. If not yet 18, surely your parents can ask to see it. You certainly don't need any more aggravation from the lunch duty squad. You are to be commended for making it a full day in school during a usually challenging year. Keep up the good work!

Everything you feel is totally valid. Possibly there is a support group of persons with chronic illness in your community you could meet with, because some of these issues are the same for any family with a member who has a chronic illness. You are not alone and we all need each other. Hang in there.

What Outrageous Behavior on the part of the psychiatrist. I would file a complaint about him to your state board of medical examiners or the hospital patient advocacy dept. He has no business treating you that way. It really makes me angry to hear about that type of behavior on the part of someone we have entrusted to help us. I was treated that poorly as well before I was diagnosed with POTS and it still hurts. I usually post on NDRF website but this site is more for just POTS people I assume. I feel terrible for you and just hope the rest of your day improves.