sarahm

Great thanks for the tips.

Next week I am taking my first flight since I got sick. If you have any helpful tips or positive feedback I would love to hear it. No horror stories please!!

Hi. I am curious about Dr. Levine's exercise program. I have heard a lot of people mention it, but it does not seem like the details of the program are readily available. How do you go about getting a copy of the actual program? I am a big fan of exercise and it has helped me a lot. But I am kind of making it up as I go along. I am in a cardiac rehab program right now, but I am their first POTS patient so they are in the same boat. I just thought a little guidance might be nice.

Is this protocol readily available? I am a big fan of exercise. I am currently in cardiac rehab, but I am their first POTS patient and I am curious to compare the differences. It would also help my current therapists as they are still trying to figure out how to approach my rehab.

Why? If I had a dollar for every time I wondered that.... I do think it is totally normal to have good days and bad days though. I have done four TTT's. My max hr was approximately 150s, 110s, 130s, and 130s. I wouldn't worry about it, if fact you should be happy it wasn't so high. 110 is still not normal so Im sure they got some good info from the testing.

I have been on Midodrine for about a month now and I feel no different. I am on 2.5mg 2X a day. Is it possible it just doesn't work for me? How long does it usually take to feel the effects?

I didn't know they give nitroglycerin during ttt sometimes. I had it once during a clinical study I participated in. I was laying down and still almost passed out.

Brye I am glad to hear you had good results with the program!!! Emma actually I kind of stumbled on it accidentally. I was living with my parents and started PT there with great results. When I moved back to my own home I wanted to continue. My PCP wrote a prescription and I started calling around. MY POTS dr didn't know anyone that had worked with POTS patients before. There is a very big, famous rehab hospital here so I called them. They looked at my info and actually suggested going to a cardiac rehab program at another hospital because they didn't have one. I was lucky they were honest and knew about a program that would suit me better.

I survived my first week of cardiac rehabilitation therapy. It was so exhausting. I am completely spent physically and emotionally. The people are super nice though. I am their first POTS patient so we are trying to figure things out together. It was a lot harder on me emotionally than I was anticipating. Mostly because I am 31 and in there with a bunch of people at least twice my age. And I could compare how my heart rate was doing to a 70 year old that just had a heart attack.... it was frustrating. For those curious on how it goes. They hook you up to a heart monitor. And take your bp before, after, and at least one time during the session. Then its 10 min of stretching and warm up, 10 min on three different machines for 30 min total ( I did rower, recumbant bike, rower), 10 min of hand weights, and 10 min cool down and stretching. We meet 3 times a week, and there is a one hour class afterwards twice a week going over healthy lifestyle topics. They limit how hard you are working and really want you to go slow and increase difficulty gradually.

My advice would be to go to a specialist that is nearby and can follow you regularly. I feel much better taken care of now that I have a POTS specialist that is close to where I live and can see often. I am happy with my dr., but mostly I am happy that I have someone who understands POTS, is nearby, and I can see regularly. I was so frustrated bouncing around from dr to dr. I think it would drive me crazy if I had to travel cross country to go to Mayo or Vanderbuilt for every appointment. I certainly wouldn't hesitate to do that if I had no other option. But if you have a good specialist nearby I would recommend that.

I didn't really date when I was a teenager, but I grew up with 4 sisters so there was a lot of dating going on. My parents rule was no dates that required getting in a car with a boy alone until we were able to also drive, so basically 16. They basically said, if something happens you need to be able to drive yourself home. Most of the "dating" that happened before then wasn't exactly dating. It was more talking on the phone, school dances, and being able to say "I have a boyfriend".

I was constantly hot and sweating a lot when I first got sick. I found having a fan blow on me helped a lot. Just having the ac on was not always enough, but the circulation from the fan made a big difference. I also went through a lot of ice packs, I would fall asleep with one on my chest.

This sounds exactly like me.

I stopped driving when I got sick in April of last year. I actually drove to a dr appointment and was too weak to get out of the car. They had to come down and get me, sent me to the hospital, and thats when all my POTS fun began. So starting to drive again was very nerve wracking. But I am doing it. Like others mentioned I started slow. I actually went to a park with my Mom a couple times first and drove around in the parking area, like I was 16 again. But it helped me get comfortable and overcome some of the anxiety. I started with short trips in areas with no traffic, and I would plan in my mind the whole time where I could pull over if I had to. At the time I was living with my parents in Indiana so things were nearby and no traffic. Now I am at my house in Boston. I limit my driving distance to a few miles, I go when traffic is light, and I have yet to try going on the highway. But I can say it is getting much easier. I used to have to plan ahead when I would drive because I knew I would be exhausted after. Now I can jump in the car and run a quick errand. I have found driving takes a lot more concentration than I realized before I got sick. But it seems like the more I practice the easier it is to concentrate for longer periods of time. Another thought. I also use a program here in Boston for people with disabilities that takes me from door to door. I use this for longer trips like going to doctor appointments. I don't know where you live, but you should looking into a similar program. Its not as nice as being able to drive, but it does get me where I need to go without having to rely on others.

How frustrating. That certainly doesn't sound normal to me. It might be worth giving the Dr. a chance though. You only got to hear the nurse and Dr. assistant opinion. I have had multiple TTT's and one was kind of boarderline and the Dr. assistant was very hesitant to call it POTS. But when I talked to the Dr. he said it was POTS right away. I have never had them check my pupils during the test by the way. But they have checked them when I am off the test.

According to my doctor this is one of the things they are still trying to figure out. I was in a research study and one of the days was devoted to an attempt to classify people with POTS. In this case they were attempting to do so by looking at my sweat response, heat sensitivity, and sweat gland biopsy. I don't know the results yet though or if they were even successfull in being able to classify people. Like Lenna's son my experience with this kind of testing has only been as part of a clinical study.

Thats funny I couldn't read when I first got POTS either. About half of the books I "read" were actually books on tape.

My bp has never been an issue. I have increased heart rate but my bp always stays normal. According to my Dr. this is classic POTS. I don't know why you get lightheaded. I usually get nauseated and dizzy. I did a research study for my Dr. and they monitor everything during a TTT. At one point I had to stop because I got really nauseated. He said my bp was kind of going in a wave, and that seemed to correspond to the waves of nausea. So that might be a clue. My bp was never in a dangerous range, but apparently my body was responding anyway.

I don't know about the rest of you, but I read A LOT since I got sick. I thought it would be a good idea to share some of our book recommendations here. I have read 33 books over the last year. Here are my favorites from that list. - Hunger Games Series - Water for Elephants - Rocket Boys - Alsolute Power - The Red Tent - Unbroken - The Help - The Boy Who Harnessed the Wind

I was on Celexa for about 9 months. The dr that prescribed it said it would help with the fatigue and sleep issues, but I later found out he just thought I was crazy. Now I have a POTS expert as my Dr. and he took me off it. I had to wean off, and I have not taken any for only 2 days. He said unless my fatigue and sleep issues are related to depression, it was useless to take it. I am definitely not depressed, although I have had my share of rough days. I believe all my improvements were unrelated to the drug. I also am pretty functional now, taking walks, cooking, etc. But I believe most of that was due to exercise and time, not the drug. Also I was getting halucinations at night from the Celexa, so I was on a low dose 10mg. I am curious to see if being off will actually help with my sleep. I wouldn't rush anything if you think it is helping. I guess it can take a while to see an effect. And if you feel depressed I would definitely give it some time. It took me a while to feel comfortable going off the drug, mostly because I wasn't sure if it was the cause of my recovery or not. And I think its really impossible to tell. Good luck.

I just have POTS. I agree there are a lot of people that seem to have a lot more complicated health problems and have been sick for ages. Its good to know there are others with a simple case, if POTS can be considered simple.

I have autonomic testing done at Beth Israel in Boston. The test bp, heart rate, and breathing with one of those chest bands during the TTT. They also did a sweat response test, and some breathing tests that I did laying down. And they took my measurements free standing also. Hope that helps, good luck.

I grew up in NW indiana

Hi I was just curious where in Indiana you are living. I grew up there and my parents still live there. I lived with them for 9 months last year when I got sick. I didn't have much luck with drs there, so I am glad to hear you are going to some good hospitals.

Great idea for a thread! I always say I lost a lot when I got POTS but what I have gained is more valuable. - I am more compasionate - I don't take the small things for granted. I didn't think I used to do this, but now being able to take a shower is something I will never take for granted. Before I got sick it was something I never thought about at all. - I have found out how important my family is, and who in my life will always be there for me. - I have become oddly more relaxed. I think once a stranger has given you a shower, you can put lifes small embarassments in perspective. - I have used this opportunity to learn new things and develop new hobbies. I was very athletic and outdoorsy. I had to learn new hobbies I could actually do, like playing the guitar, crocheting, basketweaving, and gardening. - I have learned to slow down, you can still have a full and rewarding life at a slower pace. - I have become more open toward people. I can no longer be shy about sharing how I am feeling or what I am going through. I used to be very private.