I was wondering if anyone else has trouble with there body temperature my hands and arms feel cold its hard to explain its like i feel cold from the inside but my upper body from neck to waist is so hot and clammy thanks for reading
Mitzi, hi and welcome. There are a couple of things that came to my mind: dysautonomia and Raynaud’s syndrome. Many of us have one or both. Dysautonomia is the result of a deregulation of the autonomic nervous system (upper spinal cord and brain stem distress). A good website is dinet.org. I have the POTS form and take a beta blocker for it- helps a GREAT deal. An electrophysiological cardiologist is a good stop for testing and treating. Raynauds is an autoimmune disorder that can be diagnosed with a rheumatologist, not sure if there is a treatment?
Jenn 
jcdemar said:
Mitzi, hi and welcome. There are a couple of things that came to my mind: dysautonomia and Raynaud's syndrome. Many of us have one or both. Dysautonomia is the result of a deregulation of the autonomic nervous system (upper spinal cord and brain stem distress). A good website is dinet.org. I have the POTS form and take a beta blocker for it- helps a GREAT deal. An electrophysiological cardiologist is a good stop for testing and treating. Raynauds is an autoimmune disorder that can be diagnosed with a rheumatologist, not sure if there is a treatment?
Jenn :)
Hi jcdemar thanks for replying i am new to this site so not sure how things work i made a mistake and posted my first comment twice i dont think i have Raynauds as when i first went docs i did ask but she said it wasnt that so i presume its Dysautonomia because of the syrinx its so uncomfortable i am on gabapentin 400g a day which i am slowly increasing every 4 days i only know what i have read on here about my condition but it has been a real help thank you again for your reply
mitzi said:
jcdemar said:Mitzi, hi and welcome. There are a couple of things that came to my mind: dysautonomia and Raynaud's syndrome. Many of us have one or both. Dysautonomia is the result of a deregulation of the autonomic nervous system (upper spinal cord and brain stem distress). A good website is dinet.org. I have the POTS form and take a beta blocker for it- helps a GREAT deal. An electrophysiological cardiologist is a good stop for testing and treating. Raynauds is an autoimmune disorder that can be diagnosed with a rheumatologist, not sure if there is a treatment?
Jenn :)
Mitzi, if it is dysautonomia there is medication that, unlike for Chiari, actually work really well. The symptoms can make you feel like death and make the headache worse. Starting a beta blocker for pots was the best thing for me.
Oh right well that sounds good to me can you mix it with meds i am on Gabapentin x
jcdemar said:
Mitzi, if it is dysautonomia there is medication that, unlike for Chiari, actually work really well. The symptoms can make you feel like death and make the headache worse. Starting a beta blocker for pots was the best thing for me.
:)
Not sure Mitzi, I think so but the doc will have say…
Yes will have to ask thanks for the advise though
jcdemar said:
Not sure Mitzi, I think so but the doc will have say...
Omg I thought I was going insane. It never made sense why I was hot but cold at the same time. This website has been very informative. I had surgery in March this year and headaches are coming back. It is nice to have this sounding board.
Hi Hope i also thought i was going mad this website has given me so much information and reassurance
Hope said:
Omg I thought I was going insane. It never made sense why I was hot but cold at the same time. This website has been very informative. I had surgery in March this year and headaches are coming back. It is nice to have this sounding board.