Hey You!!!
I cannot give info on POTS or EDS..I 'only' have Chiari 1 Malformation....However..there are members here who have POTS and EDS AND Chiari..I am sure they will reply to your discussion.
I can tell you my symptoms of Chiari , however...
Sx's before surgery:
Head ache just like you explained
weakness in legs and arms...along with numbness/tingling
drop foot on left side
insomnia...up to 5 days and nights with zero sleep
word finding issues
could not spell words correctly..weird, huh?
unsteady gait
neck pain
tachicardia....fast heart rate..this was the strangest sensation....I would be completely relaxed , then , out of nowhere..my heart would race...so fast the my sister who is an RN could not count the beats! BUT..It only lasted about 45 seconds to 1 minute..then I was ok.
hand tremors
painful, burning on bottom of my feet
I think that was about it!!!!!
I do have a very interesting thing to add though...see, I smoke ciggs (NEVER START!!!!) and for YEARS I would get bronchtis and pnemonia(sp) at LEAST x4 a yr...I accepted this and knew that there was that anti biotic that helped...Levoquin....My primary began , after this going on for yrs..jokingly telling me to by stock in the company! Well...my primary did send me to a lung doc and he told me all these bouts of lung issues we caused from smoking..that made complete sense to me..though, I never stopped smoking...tried..but never succeeded..fast forward to POST DECOMPRESSION...
Guess how many times I have had a lung infection since surgery?? ZERO.....I did have 1 chest cold and I asked for Levoquin ....thinking it was bronchitis.
Not one doctor believes there is any connection ...well, I do..because the only thing that has changed in my life or lifestyle is I had decompression surgery. Strange, right?
The reason I added that thing about my past lung issues is b/c I find it interesting in that if decompression helped that and I 100% believe that is the case..what else can Chiari do , as far as Sx's go? Everything comes from the brain..so my opinion..which is only an opinion..I am no expert on ANYTHING.....anything from the head and down is fair game for a Chiari patient....any thoughts on that?
Sorry I wrote so much, Samantha....OPPS!!!! Glad you are here....welcome ! I khnow the folks with EDS and POTS will help you oout there.
Let us know how your appt goes!
Lori