potsgirl

Futurehope, How interesting! Thanks for sharing. I know it's something I should look into more. I guess that a lot of POTS patients are gluten-intolerant? potsgirl

Are you talking am? I'm in Arizona...Right now, it's 3:10 pm.

Dani and Gayle, I have the same problem, and my doctors keep telling me I would feel a lot better if I put on some weight. I eat about 1800 calories a day, and exercise 4 days a week, but can't seem to gain weight. I'm 5' 8" and hover between 115 to 118. I know I'm just under an 18.5 BMI, which means I'm underweight. I'm guessing that you two are under your BMI by quite a bit. When you lose muscle, you weigh less, so perhaps that comes from sitting/lying around - I do plenty of that, too! But I try to eat a very healthy, low-fat diet...Either of you have eating disorders in your past? I guess that's quite common. I went thru treatment for anorexia about 20 years ago.... Peace, potsgirl

I just signed up for the chat room, now we need some people on it. I'll be on again Friday (tomorrow) at around 7:30 to 8:00. potsgirl

Hello All~ What an interesting survey. I'm 5' 8" and weigh about 117 (and like a couple of others have mentioned - PALE). I was diagnosed with POTS at the height of my career (archaeologist) and when I was probably the most fit of all. I really miss the hiking and running around. Diagnosed when I was 44, just turned 47. Peace, potsgirl

I take buffered tablets, and just salt the heck out of my food. I don't get near 10 grams, though. I get mine through my pharmacy, or you can also get them online. Make sure they're buffered! peace, janaa

Ernie, I, too, am waiting for results of genetic testing for a possible diagnosis of amyloidosis. I'm so happy you have the opportunity to explore your family history - I'm adopted and so don't have that info. Good luck to you~ peace, potsgirl

Mary, I'm so sorry to hear about your troubles. Just a couple of tricks my doc at Mayo recommended because I'm a fainter, too. Raise your headboard 4-6 inches so that you sleep at a slant. Take your Midodrine before getting out of bed in the morning. You need up to 10 GRAMS of salt a day - way more than I had been taking! The more lower leg exercises you can do, the better. If you stand up and feel like you're going to faint, cross your legs hard or bend over and put your hands on you knees and grasp hard. How much Mido are you on? And drink plenty of electrolytes (Gatorade, etc). I hope that perhaps one of these suggestions are new, and that they help you... Peace, Jana

Toni, What about your BP? What does it do when you're supine, sitting up, and standing up at 1 and 5 minutes? That's important, too... Peace, potsgirl

Maxine~ Good luck with your fundraiser, and dwell on as many good memories as you can. I really liked the graphics...here's to a big success! Peace, potgirl

Hola Jan, I recently saw an ANS specialist at Mayo Clinic, who told me to take approximately 10 GRAMS of salt a day! I couldn't believe it...I am usually hypotensive, however, so I think 4-5 grams might work for you. I'd try to increase it very slowly, and see where you feel the best. Also, keep good track of your BP, I've found that to be the best indicator. Peace, potsgirl

I smoked from about the age of 20-30, so I guess I would say I'm skeptical! Be interesting to see what others have to say... Peace, Potsgirl

Alicia, I have had to stop going to any social function that occurs in the evening. I can do dinner as late as 5:30, but need to be home by 7:00 pm or so, or else I get absolutely exhausted. I go to bed at 7:30 - 8:00, read, and am asleep by 8:30 or 9:00. Of course then I'm awake at 5:30 or 6:00 in the morning. Ugh. I try to do lunches and other social events during the day, but I really miss going to plays and other things that occur in the evening! It's really cut down on my social life...That, and not knowing day-by-day if I'll have the energy to even make it to lunch...I hope you're feeling much better today~ Peace, potsgirl

Toni, I'm like you...I seem to get more 'female problems' now, but I usually end up with bacterial vaginosis and pap smears that need to be repeated. I try to always wear cotton underwear and not let myself get sweaty in my vaginal area (ie, after exercise). I hope this helps a little! Peace, potsgirl

I am on both Paxil and Klonopin, and neither of them seem to have increased my migraines. I take low doses, since I'm intolerant of meds like most of us. I've tried other anti-depressants, but Paxil is the only one that works for me. Klonopin also helps you sleep, which is a blessing for me. I hope you find the right drug for you - work with your doctor closely, and you may need to try a couple of different drugs to get the best result for you. Best Wishes, potsgirl

Jenwic, Last time I had a conditioning treatment in the salon and they put me under a dryer for 20 minutes, I got such a horrible migraine from the heat on the back of my head I had to take several breaks...Weird. Potsgirl

Suzy, Great! It was nice to hear from you. Now I get to sound ignorant. I'm pretty new to the Forum, so I'm not sure what PM means (I assume it means personal email, but how do I do that?) Potsgirl

Angela, I'm so sorry. I completely understand what you're going through. 2 1/2 years ago I had acquired my dream job in archaeology, and 1 1/2 years ago I lost it due to this illness. I couldn't make it through a full week anymore. I, too, understood why it had to happen, but it took away a big part of my identity and self-worth. I had gone back to school to get my master's degree later in life (40 years old) and boy, did losing that job sting, especially since I used to be very active. My sympathies, and I hope that you can feel good about yourself much more quickly that I could. And for hope...I'm now looking for another job. It IS possible. My very best, Potsgirl

Hello Arizonans, I live in Tucson and have noticed that other members are from the Arizona area also. I'm interested in getting a support group together, and was wondering if anyone else in the area could use a friend to have coffee/tea and discussions...I hope to hear from you! Thanks, potsgirl

Firewatcher, Thanks for expanding my initial exercise poll. You've got some good questions that are really interesting to read. I had to slowly work myself back to being able to complete 30 minutes of cardio, and I've recently added strength training for my legs and abs to help stop pooling in my lower legs. Yogini- I agree with you in that in have to take it easy enough to not make your symptoms worse. I go through 'troughs' where I feel really horrible, and then I'm lucky to even make it to the gym. But I was prescribed exercise by my Mayo Clinic doc, so I try to at least do something 3-4 days a week. It's great hearing from everyone about their exercise abilities! Potsgirl

Rachel, I'm pretty hypotensive, and after being on the Midodrine for a week, my blood pressure before getting out of bed is around 85/60 with pulse 60, and when I stand, it falls to 65-75/55-65 and pulse between 110 to 140. It hasn't seemed to raise my BP at all, plus I feel nauseated and get migraines. How long did it take until your sister had to go off of it? Did the Midodrine work right away for you, or did it take a couple of weeks? I cannot tolerate Florinef at all, so I'm hoping I can make the Midodrine work.... Thanks so much for your help, Potsgirl

Hi all, Just wondering if anyone else has problems taking their Midodrine? It seems to make me feel fluish, with a nasty headache, and I'm only on 2.5 grams 3x a day. Anyone else have this intolerance? Thanks, potsgirl

Thanks for the info. I had no idea I could take sleep meds to help me relax. I'll go ahead and set one up... Thanks again! potsgirl

Thanks for the input! mkoven, firewatcher, fallon holt, and jump: My neurologist at the Mayo Clinic also prescribed exercise for me, so I try to make it as many days during the week as I can. Some days I can definitely do more than others, but I think the exercise is more beneficial than not. I believe in the long run it helps more than it hurts. I also used to be an athlete, so it's frustrating that I can't perform at my old 'level', but at least I can still do something. My pulse gets high pretty quickly, and I am pretty tired otherwords, too. Firewatcher - This is my first poll, and it looked like we could only do 3 questions? You're right, your question would be a valuable addition. Do you know how to add a fourth question? Thanks & peace, potsgirl

mkoven, Thanks a lot for your input. I find this subject very interesting, and how encouraging that you've been able to increase your exercise. I try to go 4 times a week, 30 -40 minutes cardio, and strength train legs and abs (this helps to stop blood from pooling, I've heard) 2 -3 times a week. Keep up the good work! My best, potsgirl