ellen

Ami, thankyou for the followup. You and your family have been in my prayers.- Ellen

Sign me up Alexa!- I have POTS in Tucson, Az. Let me know what you want me to do. I love science projects.

Tammy you are not a wimp! 57 degrees is COLD. I take a cup of tea with me and hold the cup to warm my hands. Fill a sock with rice(uncooked of course) and put it in the microwave for about a minute and it stays toasty warm for half an hour Always have gloves in all my coat pockets. Always wear socks to bed. The best is "Therma-Care" therapeutic heat wraps for back pain. They stay warm for 8 hours! I bought it for a back ache, didn't help my back, but it felt so good for so long!

Hey, I'm over 50 (52) and I still have POTS!! I'm not the only old lady on this forum, am I ? I have had these symptoms (fainting, brain fog, fatigue, tachy, allergies, asthma and I can't remember the rest), since I had a virus about 16 years ago, and have had some improvement, but I am still sick. My Cardiac EP said I probably would not get better since I have had it for so long. I hope all you young people could have a full recovery, but I'm afraid some of us will deal with this for an indefinite time.

Suzanne- I had a total abdominal hysterectomy a few years ago and it was a PIECE OF CAKE. Maybe because I was so worried that I prepared so well. My PCP told me to take double dose of florinef that morning, so my bp was higher than usual. I told the OR nurses I had POTS, and sure enough, my bp dropped when they gave me the IV. No problem, they lowered my head, gave me oxygen, and I came back to normal. After the surgery, I asked the nurse if I could get up as soon as I got into my room, because I knew I would be made to walk anyway. My positive attitude made them cautious- instead of encouraging me to push myself, they wanted me to wait! (I also told them I have POTS). Except for the catheter problem that Sophia mentioned, (urinating did not come easy!) recovery was simple. Be sure to eat (drink) the salty broth, tomato juice etc. Good luck, I hope you have as smooth a recovery as I did. The bonus is no more monthly period, no cramps, no PMS- no PROBLEMS!

Lisa- you have my sympathies- I had immunotherapy (shots) for 5 years and it really helped improve my symptoms. However, when I did have a sneezing fit afterwards, the epi treatment caused severe tachycardia (very unpleasant). However, my allergies are now so mild, I just use Allegra. Here's a simple tip- you can eat locally farmed honey to help boost your immunity to your local flora. The bees get some of the pollen on them and the theory is, your body will build up a tolerance to your local pollen.

I have always been a fainter, maybe once or twice a year as a young person. My mother took me to a neurologist but he found nothing wrong with me. I always had very low blood pressure. As an adult (around 35) I got a virus, which seems to have triggered the full blown POTS.- I was so fatigued, asthma, allergies, fainting every day, sore throat, body ache etc. for months. So I would say I had a predisposition - I always fainted easily, but nothing very serious.

Yes when I was really syptomatic, I would feel faint just walking in the sunlight, or sitting outside. Now I still feel uncomfortable without sunglasses, and notice that my eyes do not adjust to changes in light as they should: shine a light in them and the pupil shrinks, then opens again and fluctuates.

Thankyou for posting this encouraging article!

I switched from Florinef to fludrocortisone (generic) a few years ago because of my insurance , and noticed no difference.

Yes, I went into shock on the operating table, I heard the anesthesiologist say, " I can't get a pulse!" , then heard alot of noise as he jumped on me with a shot - Afterwards, my doctor, who was very upset, told me not to have surgery unless it was absolutely necessary and to always tell my doctors that I faint easily. That was 25 years ago, before I was diagnosed with POTS. I ALWAYS tell my dentist, doctors, etc. and have had no trouble. I had a hysterectomy 3 years ago and was told to take a double dose of Florinef beforehand, which I did, and I STILL started to lose blood pressure in the pre-op when they gave me an IV. But they were watching me closely, so they quickly lowered my head and elevated my feet, and I was fine. If you have a concern always tell your doctor, and every nurse who handles your case, and then relax. They can handle it.

I have been on Florinef for over eight years with no complaints. When I have occasionally forgotten to take it, I definitely feel weak before the day is out, so I know it makes a difference for me. Not everyone has this positive result, but you don't know if you don't try it.

Great website! Thanks for the beautiful photo!

I also have persistent muscle soreness. I do LIGHT exercise at Curves and always feel it the next day, even though I have been a member for years. But if I don't exercise, I feel so weak, the weakness is worse than the soreness. I think it may be fibromyalgia, but have not asked my doctor about it. Anyway, you are not alone.

So CUTE !! - ellen

I had immunotherapy (shots) for weeds, trees and grasses for 5 years. I also have slight food allergies to raw fruits (mango, banana, avocado, cantalope, peppers, etc.). Also bug bites cause big welts which multiply over a few days.

Here in the desert, our Walgreens sells a kind of necktie that you soak in water, it swells up with a gel, stick it in the fridge and it stays amazingly cold for much longer than a few minutes. $2 to $3. I have kept one in the fridge for several years!

Me too! It feels like I can't breath. I especially have this feeling when I'm swimming, from the pressure of the water on my chest. When I get my chest up out of the water, I can breath again! Can anyone explain this sensitivity?

Jacquie, I use fexofenadine, generic for Allegra, and my insurance covers that. I had been using Clarinex (great stuff) but the insurance didn't cover it, so I asked my doc for 180 mg (max strength) generic instead. I also use store brands of "Claritin", which occasionally goes on sale, and needs no Rx. Have you asked your doc for samples? Mine gave me a handful before to try before I got a prescription. Don't be afraid to ask! Good luck, Ellen

Definitely Yes, it IS embarassing- my family knows not to enter the room suddenly because I also jump out of my skin when startled. Oh well, it's the least of my symptoms. Nice to know we're not alone.

Yes, Nikigrl, I have that experience also, although I'm on Florinef. I like to think it's a sign of improvement- may the good days increase and the down days be further apart!

Michele- Based on my personal experience with Lamictal, please be aware that it can cause a serious (life threatening) rash. My daughter was on it for a few days and developed a rash which progressed into a nightmare. Her psych was not ontop of it, but because I had contact with the drug rep, he told us to discontinue it immediately. We have excellent pediatricians and a dermatologist who supported us through that time, but I would not want anyone to experience that side effect! Good luck with your PMS. I hope you find a doc who will take the time to answer all your questions.

Definitely! I get told "you don't look sick!" repeatedly, from people who know me as well as medical professionals, especially the receptionists -I had one say, "this must be the wrong chart, it says you're fifty". And my PCP's receptionist called over another girl and said, " Guess how old she is!" I got asked if I'm old enough to buy wine the last time I bought it at the supermarket. Ha! I not only look good, I look remarkably young. I went to my investment guy to ask how much could be deposited in an IRA annually for over fifty, (it's higher for over-fifty), and he said, "but YOU can't do that much. " I think this is why it has been so hard for us to get diagnosed.

Thankyou all for your replies. I did see my PCP today and will be getting further tests. It's good to know it's not associated with POTS (,although I was kind of hoping it was just another "normal" potsie complaint ). - Ellen

I have pain in my joints, especially when it rains, and it has gotten more intense. I have an appointment with my PCP tomorrow, but I'm afraid he will blow me off like he did when I first told him about my POTS symptoms. Although he did send me to a cardiac EP and I was diagnosed with classic POTS, I still feel he doesn't take it seriously. I don't see arthritis mentioned here often, and I'm wondering is it related to dysautonomia or is it a separate issue? Anyone have any experience with this?