Symptoms getting worse

[Tharris85]

I was diagnosed about a month ago and I just continue to get worse. The pressure in my head is unbearable with migraines daily and at leaste twice a week I become very week and get the feeling of being almost numb and very disoriented and my head is very heavy and if I try to move I become dizzy. I have also been having trouble swallowing and my memory is horrible for a 26 yr old. I have been seeing a neurologist that said my chiari is not the cause of my symptoms because it is only 6mm and is only treating my migraines. I can't continue to go on like this and I am beginning to feel hopeless. I am taking topramax for migraines plus tramadol and Vicodin prescribed for pain but it still hurts. No pain med can take away the squeezing I feel behind my ears! So I guess my question is even though my herniation is only 6mm can that still cause these symptoms and if so can they fix me?!?

[seamatty]

What score is required on the Beighton score to suggest you could have EDS? I know there are different types, but do you know the answer to this for the hypermobility type

[selmaS]

EDS= Ehlers-Danlos Syndrome
  There is a beighton test they do, check ROM of ur joints, look at ur skin, and a few other things....

we do have a EDS group here on MedHelp and there r links to explain what it is and how it can affect us. Here is the link -http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

And I am sure if u read thru the other threads here u will see me mention this over and over as it is very important to know if u have this as if can affect how u feel and heal post op.

[Tharris85]

No how do they check for that? Actually.. What is that? Lol

[selmaS]

  Hi...yes, I had that for yrs...I felt it so much I thought everyone could see it, but at first no one could, but it is now visible...and I was told this is connected to my EDS dx which is related to chiari.

Have u been checked for EDS?

[Tharris85]

Thank you guys got replying. It's nice to have someone to talk to that understands. I have another question. When I wake up I have this feeling like my whole body is shaking or trembling and im very weak and it last the way for about an hour usually but today I actually had to leave work to come home because it hasn't stopped. Anyone else ever feel like this?

[irislita]

These post are making me always feeling so frustrated.most of the chiarians have to bear so much and take misdiagnosis and meeting doctors that wont even listen.the stupid thing is...if u have been checked up and down and the only thing that reveals is chiari why dont they focus on that...or a nl that says chiari is not the cause should at least be able to tell u then what is causing ur symptoms right!!! Why dont they start to listen to their patients and measure the stmproms instead of hernia.damn seems u really need a specialist.
I share a lot of ur symptoms and i am 2years older.i can feel how desperate u r.get an expert asap and keep us updated.big hug for u