lgtaylor100

Thanks Bren. I have requested that my doctor prescribe Mestonin but he is hesitant somehow. Please let me know how it works out for you. Chronic fatigue is my most disabling symptom so if the Mestonin could help both things I would be thrilled. If others are taking Mestonin for weakness please let me know.

I have been suffering with POTS symptoms for about a year now but recently have a disturbing new symptom. It seems as if my legs feel weak much of the time when I am standing on them but also when I am lying down. I don't know if they actually are weak or if it is a sensation caused by blood pooling, although I don't understand why I would have this symptom while lying down or sitting. Midodrine doesn't seem to help much. My primary doctor is sending me to a neuro muscular doctor so maybe he will be able to shed some light on this symptoms. Does anyone else suffer with this? How do you deal with it? Do you think it is time for some compression hose?

It's amazing to see that so may had no known trigger. It's frustrating to me that I can't point to an identifiable trigger for this illness. What does everyone think about particular demographic.

Fatigue

I find that some days I am able to exercise but afterward I experience extreme fatigue and muscle weakness which lasts for hours or days. I believe that in a recent post someone discussed the mechanism by which we are able to exercise but the symptoms appear afterward. Does anyone remember that post? Lynne

I feel the same as the rest of you. I have been struggling with this disorder for 16 months now, 11 since I stopped working. So much of my life has been taken away. I liked working, now I can no longer do that. The fact that I recently was awarded disability helps financially but the fact that it was so easy to get makes me realize how really disabled I am. ( I was awarded it on appeal but by reevaluation, no hearing necessary.) I haven't had a good day since September, 2010. While I try to remain positive and find new activities that I can do at home, I still think often about my old life and how wonderful it was. I sometimes get out for an hour or two but come home exhausted. If I try to exercise very mildly, I pay for it the next day. I am not able to go places with my grandchildren, although I can visit for a few hours. My primary wants to put me in the hospital to figure out what is wrong with me. He doesn't believe that POTS is idiopathic and thinks something else is going on although he doesn't know what. I know that these hospital visits are frequently useless because once they know you have been diagnosed with dysautonomia they say all symptoms are indicative of that. My husband believes how sick I am, as does one of my daughters because she works in healthcare, but my other daughters and my mother do not get the seriousness and the debilitating nature of this, although the approval by social security disability does give credibility to my mom about what I am going through. One of my daughters still doesn't get it and thinks if I had a glass of wine every night that would solve everything. People have stopped calling. I agree with whoever said that those that have cancer get a lot of calls and attention, but people do not take this seriously. Well there is my rant. Thanks Naomi for starting this thread.I needed it.

I have no idea what kind of POTS I have. The elecrophysiologist who diagnosed me said I have low flow POTS. He said he knows that because my heart rate went up ONLY fifty points during the TTT. This doesn't sound right to me. I don't know if my POTS is primary or secondary or hyperandregic (sp). Who knows what kind you have and how did you find out? It seems this affects the treatment and I am lost because so many doctors have suggested different treatments. I have not been able to find out what caused the POTS. The last theory was that it was idiopathic but I at least would like to know what kind I have.

My primary doctor is now treating me as if I had Lyme disease even though I never had a positive test. The story behind this is that I went to a University opthamologist for dry eyes. I was diagnosed with blepharitis and given a prescription for doxycycline in order to "open up my glands". It has been almost two months now and my eyes are a lot better. My primary, who believes that POTS has to come from something ( he just doesn't know what), told me to double the dosage because perhaps I have non serogenic Lyme disease and that is what is causing all of my symptoms. I've been doing that for a week and of course do not feel any better. I also don't believe that I have Lyme disease but am also desperate so I'm following his protocol. Fortunately I'm not experiencing any side effects from the Doxycyclene so I'm willing to go a while longer with his theory.

I live in Pennsylvania (Bucks county) and have also been feeling much worse this week. I am short of breath even without a respiratory infection. I feel more tired and more achy even when I am in the house which is most of the time. I attribute it to the weather. There was a feature on the news last night saying that everyone's heart rate gets elevated by the heat, so that is not good news for us who already have elevated heart rates. I have difficulty recovering from short trips outside.

I was just thinking about this yesterday. My worst symptom is exhaustion. I was thinking back pre POTS and remembered the same type of exhaustion for several years pre POTS. The major difference was that the exhaustion pre POTS relented with a good night's sleep and now it does not.

Caroline - I'm glad to hear you are taking that big step despite past experiences. Good luck to you and hopefully you will get some relief as a result of your efforts. Lynne

Todd- As a result of the info that they were able to determine from the sleep study what were they able to do to help the problem? Mine had a nice environment too, but no help with my sleep problem. They said I had insomnia which I already knew.

I really don't know what type of POTS I have. What interests me is are the meds that help different depending on what kind of POTS you have?

I had a sleep study done. It's difficult to fall asleep with all of the wires but I did eventually fall asleep. I woke up twice during the night but I usually do that anyway. At the hospital where I had my sleep study the only thing that they are able to determine is if you have sleep apnea (I don't) and if you have restless leg syndrome (I do). I didn't find it particularly helpful. Perhaps it is done differently in other facilities. I would ask them what they are able to determine as a result of a sleep study. Lynne

Just got the lab results from tests that my rheumatologist ordered. Everything was normal except low Igg1 Igg3 levels. The nurse said that if I do not get a lot of infections then don't worry about it. I don't, but with trying to find the cause of dysautonomia every piece of information is important to me. I believe I've seen on this forum info about Igg. Does anyone know what low levels mean?

Just wanted to say you and your family are in my thoughts and prayers Lynne

Like most of you, I have been searching for the cause of my dysautonomia. My primary doctor thinks that it is likely autoimmune. I began this journey by visiting a rheumotologist even before I was diagnosed with POTS. Although I had the signs and symptoms of Sjogren's (dry mouth, dry eyes, dry everything)with the exception of a positive ANA the rest of the lab studies were negative. I went to a doctor at the University of Pennsylvania who also was not sure if I had Sjogren's. He indicated that all of my symptoms may be attributable to dysautonomia and said that dysautonomia could be idiopathic. Has anyone else ever heard that dysautonomia could be idiopathic? We try so hard to find the cause and maybe it just is. What have you heard on this subject? Lynne

I agree also. A wealth of knowledge and true caring. I am so happy that I found this forum. I would be doing much worse if this wasn't available.

Thank you everyone for your wonderful replies. One thing that kept coming up over and over again is acceptance of limitations and that is something that with which I have a very hard time. I am trying to engage in more activities but it is very hard and the next day I find that I am exhausted and need to lie on the sofa for most of the day. I am having a very hard time accepting myself as a sick person.

I decided to go for it this weekend since I felt not too bad Saturday night. I had a raspberry martini. After just a few sips I was extraordinarily dizzy, got very sleepy and starting sweating. It was a very strange reaction. I remember early on in this process my doctor asked if I had any strange reactions to alcohol and I said no because at that time I didn't. I wonder why he was asking. Does anyone have an idea?

Tearose - Could you explain the non-drug based compression treatment? Lynne

I've noticed that many of you say you are doing better now than before. People have mentioned that they were housebound and can now get out and do activities and in some cases work. What has helped you the most with improvement. If it has been several things, please list them. Thanks, Lynne

I am also considering Mestonin. I mentioned it to my doctor and he said it would be like killing a fly with a sledge hammer. Apparently, he doesn't understand that I am in need of a sledge hammer and that dysautonomia is no fly. He also said something about it increasing the fatigue. I'm confused because I read on several posts that it helps the fatigue. I also feel that if I could show my doctor these posts maybe he would consider letting me try it. What are the side effects and please confirm if it has helped you with the fatigue. Thanks, Lynne

Thanks. That makes sense.

How does one add the email and private message icon by your name. I noticed that everyone has these except me and I can't figure out how to add them