Patricia

Ernie, Due to my health, I have missed many important family functions that are out of town. As my parents have aged, I have been concerned about being in your situation. I am glad your family is so understanding and hope that you will be at peace. The sadness, without the traveling, will be alot on your body. My condolences. Patricia

Hi Everyone! I read the replies to the post on summer heat, but wondered specifically if anyone has trouble literally taking a deep breath just walking out into the heat/humidity? I feel I am suffocating and have to run in and sometimes breathe in air conditioned air over a vent. I had a bad episode last summer because of this. Sounds a bit extreme, but I am losing courage just to drive short errands knowing if something happens to the car, I can't breathe outside! It is sooo frustrating and scary. I don't have asthma, and my cardiologist just shrugs his shoulder. I am on Inderal for the POTS. Thanks guys, Patricia

I grew up in New York on the Canadian border on the St. Lawrence River; now live outside of Charlottesville, VA. How I miss the Northern summers! Patricia

Earthmother, What you describe, the methods beyond traditional, is what I will see he if he is willing to do when I speak to him, hoping it is enough to help the problem. This is my first introduction to chiropractic work, and I am obviously "green" on the subject! Thanks for your input. Patricia

Thanks for your responses everyone I think physical therapy may be a safer route for me, but I am going to keep my appointment with the Chiro on Monday and see if he can offer exercises, massage; things "non-invasive." It was a relief to have everyone respond so quickly so I feel more confident on Monday. Have a great weekend! Patricia

Hello everyone, I believe this was a topic on the NDRF forum a long time ago, but I could not find many posts on it. The debate was whether manipulating one's neck by a chiropractor could be dangerous because of the possibility some people's dysautonomia could originate from the brainstem area and also some may have undiagnosed problems with their spine ie. Chiari. Does anyone have an opinion or know factually? I am having great shoulder pain and this Chirpractor, who does not know anything about dysautonomia, discussed manipulating my neck. I am trying to seek guidance if this is a safe path. Appreciate any insight! Patricia

Hi Gayle, Do want to talk about drug sensitivities?! It is my curse in getting better. I do not even tolerate 1mg. doses of some of the SSRI's without a reaction. I have even tried to compound some medicines in smaller doses to give them a try. That might be an option for you. I only take a baby dose of Inderal which lowered my heart rate 20 beats per minute! and a small dose of Ativan also. It is so frustrating to be so severely ill and unable to tolerate the medicines that could improve our quality of lives. I so understand and am sorry. Yes, I tolerated medicines before I got ill. My doctor thinks it could be a couple of things causing my reactions. Either my immune system is so activated it reacts to medicines as an "enemy" of sorts, or my liver that was enlarged during my initial virus was affected and does not break the medicines down properly which is why I have had even a toxic reaction at a minimal dose of a med. I know you developed dysautonomia after surgery, so it could be your brain, but obviously I am not a doctor. I wish I had an answer! I know how scarey and frustrating it is. Patricia

Hi Leah, Could you tell me what your ferritin level was? Mine was 40, low normal; normal range 9-204. My TIBC was below normal as was my Transferrin, but I am not anemic ( normal hemoglobin and hematocrit) and I have a normal iron blood level. Confusing or what? I am not taking any supplement for it. I always wondered! Patricia

Radha, I know exactly what you are talking about. I do not know the reasoning. Some POTS patients who do not have their symptoms under control appear as very hyper,anxious individuals because of all the adrenalin. I can get that way at times. At other times, after I have been upright for too long, it is as though I have speed inside of me that I can not release even when I lie down and try to deep breath. I feel it in my chest like I have all of this energy, but I do not have the energy to physically express it. It is not "normal" energy and is scary at times. I myself wish I knew how to stop it when it happens as I am usually crashed from it afterwards. Too bad it doesn't allow me to run a marathon when I get this way Patricia

Deb, PLEASE do not have your mind putting you in a wheelchair! You are still able to work aren't you? Did the doctors explain what else they thought might be going on and if you will have further testing? I know how frustrating it gets, but you may be just going through a bad spell if this is your first summer with POTS. If there is something else, maybe discovering it will make you feel better overall with specific treatment. Patricia

Michelle, Thank you for the article. I called my town's medical library and they are emailing it to me. It is not exactly what happens to me, but it shows people can pass out when lying down even without extreme stimuli ie. intense pain. I will show my physician as a hopeful "clue" into what is possibly happening to me. Patricia

Thanks Lorrell. I have had speed-like affects from Midodrine and some of the SSRI's; also Mestinon. Then I crash VERY hard when it wears off. I too have Chronic Fatigue Syndrome and wondered if that was the culprit versus just having dysautonomia. I will bring it up with my doctor. Thanks! Patricia

Can anyone on Adderall say if it asks as a "speed" and then when it wears off you feel as you did before the Adderall, or does your overall condition improve generally consistently? Thanks, Patricia

Hi all, I hope I am posting this correctly! Do any of you get presyncope warning, lie down,pass out, THEN go into a sleep from 20 minutes up to two hours? When I awaken I feel awful the rest of the day. This happens almost everyday. Also, one of my main symptoms is chest fatigue and chest weakness. Can anyone relate? I appreciate any input! Patricia