Inability to regulate temperature

[Shane]

Ever since this started two months ago I've not been able to control my temperature. The only relief I get is sleeping (never a problem) and most nights after say 9pm. Cold from (literally) the first move my body makes as I wake up (temps usually 96-97.5). Going outside in the heat, or worse taking a shower will crush me for the rest of the day. If I do manage to warm up, it seems my body decides "warm" is "hot".  I have to fan myself or not make a move until I feel somewhat comfortable again. Upping or lowering the thermostat in the house does nothing as "cool" becomes "cold".  What is weird is when I travel to the doctor appointments (or anything that is scheduled and not passive) I don't feel that cold, but when I arrive home, boom, I start to feel temperature regulation issues again.  This is freaking me out a bit. 

Does anyone have reflections on this, or what techniques are you using to deal with this?  I've read Mestinon and possibly other drugs might help with this, but certainly can't self diagnose this till I get a full evaluation at BI in a few weeks. I'd suffer every other symptom to not have to deal with this one, its debilitating to the point all I can do is curl up on the couch or walk around a bit when I can handle it.

Thanks.

[Pistol]

Sorry - this is a common symptom of dysautonomia and there is really not much I can suggest to make it better. In my case I feel best when resting,  that might be why you have less temperature control problems at night. I shiver from cold and suffer from heat off and on all day and just put clothes on and then take them off again constantly. I did take Mestinon for a while but did not tolerate it and I don't recall it making a difference for the temps. I wish there was something I could tell you to do!! I know how bothersome this is! 

[toomanyproblems]

50 minutes ago, Pistol said:

I did take Mestinon for a while but did not tolerate it and I don't recall it making a difference for the temps.

Hi, just curious as to how you didn't tolerate it. What happened?

[Pistol]

@toomanyproblems - sorry, I do not remember what happened that they had to stop it. At that time they tried out many meds on me to see which ones I respond to. I just remember that my autonomic specialist told me that it was not the right med for me ( he was the one who ordered it ). But that is often what we have to do when no one knows what helps - just keep trying things and pinpoint what helps. With me it ended up being many cardiac meds as well as Ritalin and Lexapro and GI meds. 

[Shane]

Just managed to get the notes from my TTT at Yale. "After 10 minutes supine position, the patient was elevated to the 70 degree position for 35 minutes, with no contiguous heart rate or blood pressure recording. There were no symptoms. There was no significant change in either heart rate or blood pressure. Impression: Normal Tilt Table test"  Of course, I am assuming TTT is really testing orthostatic intolerance (and I guess the ability of release whatever chemicals are required handle the postural change).   Hopefully, the further autonomic testing at BI will hone in on the temperate regulation problem.  Only other hope is the endocrinologist finds something when I do the CRH Stimulation test. Funny I am guy, but I think this must be what woman feel when they hit menopause. Trying to think if these two avenues come up negative, what is another source of this.