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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Hi Trigal~

Conservative Dr's is very common when it comes to Chiari. But going to TCI, if you go that route, will help you better understand whats going on and put the pieces to the puzzle together for you. So even if you go just for the consult, its definately worth the expense to be validated in this condition and to be able to talk to a neurosurgeon who is well versed in Chiari.

So many things you are dealing with sound like myself. Before I was Dx, I was dx with taccicardia with no unknown reason. My Dr said we could use medication to help but that was just putting a bandaid on things and we really needed to find out whats causing it. Then I was dx with sleep apnea as well.

The headaches I can well relate to. Its funny because my whole life, I've taken tylenol on a daily basis and when I had an onset of neurological symptoms, I never even mentioned my headaches. I just lived with them and excepted them as sinus. I then had a lumber puncture and now suffer from dehabilitating headaches so bad that I can no longer work. Any activity, even light housework or walking, will cause the pressure in my head to worsen. So I have adapted to no longer than 10 minutes on my feet and no bending, straining, carrying heavy items and I lay down when I feel the pressure building up. Generally 2 hours upright, I have to lie down for relief. Its definately not fun:D

Exercise is brutal with this condition. But remember, when your hearts working, its pumping the blood and CFS fluid and with the decreased flow, thats most likely why your experiencing worsening of symptoms with exercise. So try to take it slow;)

Barometric pressure has a big impact on me as well. I can feel rain the day before it starts and generally end up taking something strong to get through it, with alot of laying down.

The other symptoms your saying are definately chiari like to me. So you don't sound like a hypocondriac here. Ringing in the ears, full ears, dizziness, pain in the eyes, sensitivity to light, and the list goes on.

Did you get the paperwork from TCI with the symptom list? Its amazing how many things we live with that we think are "normal" then find out its not. You can get the list on their site.

Well, know your not alone in this. We're here battling this craziness every day. But as I said, you learn to adapt your lifestyle for comfort. In the meantime, you have a place to come and talk and be understood while the rest of the world thinks we're nuts:D

Are you in the south east? You mentioned being in a heavy lyme area. I'm in Ma. I'm just curious how long of a trip it will be for you if you go to TCI.

Keep us updated, OK?

Take care


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