Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome connection?

I am very new to this and have not been officially diagnosed with Chiari Malformation but my doctor is pretty positive I do have it. I have an appointment with a neurologist this Friday! I was just wondering what some of the symptoms are that people have and if anyone also has EDS or POTS? Some of my symptoms are: severe upper abdominal pain, vomiting, severe nausea, chronic daily headaches starting at the back of my head (low) and radiating throughout my whole head, dizziness, fatigue, shakiness, and weak feeling throughout my body. It also seems like my head hurts more when I’m sitting…? If anyone else has/had similar symptoms or any information you think would help me I would really appreciate it!

Thanks! (:

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 heart rate..this was the strangest sensation....I would be completely relaxed , then , out of heart would 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! 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 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 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!


Me again...this will be short..promise ya!



head aches( rarely get a bad one)

Neck pain...did have to have neck fusion due to bad disk

word finding better

hand temors 75% gone

Insomnia..Thank the Lord!

spelling 75% better

foot drop GONE~~

balance/gait..some improvement

tingling/numbness 50% better