POTSHusband

As always I am writing for my wife so I will give you her information. 1. Stacy 2. 26 3. POTS 4. I think that she was officially diagnosed in April, but she diagnosed herself in 2001 5. Seattle, WA 6. Her symptoms at worst are stomach upset, extreme fatigue to the point of sleeping almost literally all day, passing out, depression, joint pain, and extremely foggy mind 7. At absolute best she is almost normal just still can't take heat at all and gets tired quickly 8. Klonopin, several beta blockers, depression medications, misdiagnosed probably five times so of course things like asthma medication and allergy shots didn't help 9. Florinef, fluids, Adderall has helped some but the doctor won't give her more than 10 mg/day, atenolol, exercise when she can, and moving to the temperate Pacific Northwest.

Hi I don't have a whole lot of suggestions, but I totally understand. Since my wife hasn't been able to work for the past three years. We are living off of savings from a great job I had two years ago, but that will not last for much longer. Hang in there!! Talk about everything you are feeling with your husband. You're marraige is more important than money issues! POTSHusband

Hi My wife has had POTS since she was 22. She is now 26 and is marginally better. Try to find a doctor that has had some experience with the disease. If not then find a doctor that will listen to you and do your own research. The people on this board have been a huge resource for me so go back and read a whole bunch of old posts. POTSHusband

Stacy definitely has to eat in the right pattern. She not only has to eat at certain times, but she also has to be careful what she eats. She needs to eat something that is caloricly dense so that she doesn't get hungry too soon. She hardly ever can eat sugar anymore. She feels best when she is on a high fiber low sugar diet. This diet has really helped keep her energy balanced throughout the day. She still has low energy, but at least it is constant and she isn't passing out from lack of food.

She is not on the extended release, but she is only taking 5mg twice a day. It seems that others that have tried it are on much larger doses. Has anyone tried both extended and not? I wonder which works better. Unfortunately, we are on the west coast so that doctor wouldn't help. We haven't been able to find any doctors that have experience with this illness. I just basically take research to her doctor and ask if we can try stuff that you guys have tried.

Hi, I have researched both here and other sources for good doctors. Dr. Grubb seems to be the expert in the country. Since we are far, far away from him, can anyone ask him to send us information so we can at least do research to give to our doctor here? Our doctor seems to be willing to try what we can to get my wife better but he doesn't know much about the condition. Thanks

How long did it take to see results? My wife has been on it for about 3 weeks and it has helped some but not a significant amount. The first few days it seemed to give her a lot more energy, but now she is back to being tired all of the time.

Hi, I have been reading the forum for a few months now, but thought that I would join so that I could ask some questions. My wife has been a POTS sufferer for four years. She was misdiagnosed for about two years and then she finally diagnosed herself and went to a cardiologist that confirmed it. We have tried every kind of medication possible and she is now better than she was but still not consistently good enough to enjoy life. It seems that every time we try a new medication it helps for about a month or two and then stops working. Has anyone else experienced this? Any advice you guys have is appreciatted.