btru2all

FYI, I sent you a private message. Katybug’s post explains how to find it and read it. Thank you!

Thank you everyone. I have to check my temperature, it’s been awhile since I have. I will follow up...

Oh, thank you for explaining heat intolerance. That makes sense, can’t tolerate heat. You have to have a sense of humor I guess- haha I was thinking because I can’t tolerate my heat!

Depending on your age, premenopause can happen much younger than we think. 30, maybe younger? I was very surprised to hear this. I went off my hormones a couple months ago, and my dysautonomia symptoms are worse BP, and over-heating). Now I have hot flashes, which are what you may be describing. Either way, a blood test for hormones is easy if you think it might be this.

Hi, I got my super high, and super low blood pressure problems after surgery too. Then it went away when I went to a Naturopath and was treated with a “Light beam generator”. The Dr. said it cleaned the lymph system. It was a miracle. My severe bp problems as of 2 years completely went away after 2 treatments. It was absolutely gone for about 4 years UNTIL I started using a Fentanyl pain patch. I live abroad right now and can not find a LBGenerator here, and I must take this Fentanyl. Without it I have intolerable pain. I wonder if anyone has looked into this medication connection? I will do a main post on this when I get a minute. Maybe we can find out.

Thanks everyone, My Neurologist knows that I have this and said that it is Dysautonomia. I figured when reading about all of the people wearing ice vests all day that this would be a more common issue. My doctor’s are not helping (I live abroad). I thought before I could get to the U.S. that I could find something here. This is supposed to be one of the main symptoms, I see that the respodent TCP is aware of this. I have read that there is no cure anyway, and I do not want to take more drugs and end up with more problems. I have found that my BP will usually go up with this, and both can be brought down to a tolerable level with my BP medicine. Interesting you mention betablockers. I use Clonidine, which is sympatholtic medication, it’s an adrenergic agonist. It works well, but it only treats the problem. They know nothing, period. I am very frustrated. There must be a source where I could find more answers??

Please help? I have extreme heat problems at night. Right now I sleep on ice packs. I must waken every 2 hours to change my ice pack. What do other people do? Has anyone tried the Chili Technology. Which is water running through a mattress, and you can set the temp. My trouble is that they say you must wear a cover over you to control the temperature environment. I cannot wear anything on my body all night, or I over heat. I live abroad, so I can’t use the trial period, and just return it. Otherwise, maybe it could be controlled enough to keep me from over heating? It’s difficult to explain. I’ll have ice packs under me, and fall asleep with a sheet on. The next thing I know (about an hour or less) , I am completely overheated, and my icepack has turned to a heating pack. All because of that sheet. Otherwise, the ice packs last 2-2.5 hours. Please help!?? I feel like I am exhausted, and have been burned at the stake or something!

I’m glad that you are doing this poll. I have an autoimmune disease (Sjogrens Syndrome) which has been attacking my CNS for18 years. I am in a wheel chair. I had Thyroid Surgery, and in post op it all started. I had systolic BP up to 228 (hypertension) and as low as 48 (again systolic,hypotension) My doctors acted like this was the strangest thing they had ever seen. I was a sred as a lobster for days. I am an R.N. and want to explain the highs and lows of my blood pressure at the time. Lasted 2 years which I miraculously “cured” by using a Light Beam Generator machine at my Naturopaths office. I couldn’t believe it. It was gone for years. It came back the minute I started the Fentanyl patch. I have moved far away from that doctor. Unfortunately I cannot stop using pain patch. My pain/spasms are too bad. Now My Hyper/hypo tension episodes are not as severe. They are frequent/significant/problematic. Now though it is coupled with the torturous heat/cold irregulation. I have more problem with the extreme heat, and mostly at night. I cannot wear any covering on my body, and sleep on icepacks! It is ****. Yes, I do have peripheral neuropathy. I do believe that my digestive system is also effected. apologize for the length of this. Thank you for listening.