how many chiarians with.....?

[Sexybare]

I was diagnosed with occipital nerve damage and autonomic dysfunction. How many other chiarians also have this? Also vit b12 and vit d deficiency

[Sexybare]

Yup def chiari related. No treatment method i was told about. Just all the meds im currently takin. Lol. My dad tells me pain is weakness leaving the body.lol dont know why i posted that i wish it was chiari leaving the body. :) the auronomic dysfunction affects bp. Wether its high or low. Cant prescribe bp meds because i wouldnt know which to take at the time and would be too dangerous?! Do you think you may have this also?!

[irislita]

...ok and as almost everything chiari related...no treatment possible right?

[Sexybare]

As a matter of fact, yes it is in the same category as fibro. And thank you. I think about so many on this site. I was actually waitin for your reply.

Irislita- yes that is the explanation for the racy heart. The test is a flip table and they check your bp. My nl knew exactly what is was. Its also called pots and many other names.

[irislita]

Hi.happy to hear u r in good hands.how did they find out about autonomic dysfunction?was it the racy heart stuff?

[linnielou232]

I was thinking of you today.  I remembered you had an appt.  I can't believe I remembered. lol.  I'm inpressed with myself. LOL....I'm so happy to hear you found some answer's to your problem's.  Now they can be addressed.
I wonder if I have this issue also, but they diagosed me with fibro.  I wonder if they are in the same catagory?  It is flustrating to have to take med's all the time.  We have to do what we have to do to have a good day.  Just glad you finally found a dr. that listened and figured out what was wrong.

[Sexybare]

I sent you a note. I will deff keep in touch. I take my med in moring. Wholly crap do i feel funny but very relaxed

[cash242]

I messages you about this cuz I was thinking of you I got that dx yesterday of occipital neuralgia it is not 100% as they need to do a nerve block and if that helps then we are on right track. I started neurotin last night and it was first night I slept all night and didn't wake up from nerve pain. it was awesome! Keep me posted on treatment and vice versa.

[Sexybare]

My nl says the occiptal nerve damage is worsened by surgery. I have daily has due to this and neck pain. I was sent to pt from my ns because he thought it was just the fact that after surgery i needed help gaining muscle control of my neck, lol, wrong. Pt was waste of my time. It wont help only massaged and maybe nerve blocks. Tho im still thinking about those? In the meantime along with all my other drugs im tryin cymbalta first? We will see.......

[ljturner5366]

No on the first two, but yes to b12 and Vitamin D.  It was when I was diagnosed with the b12 deficiency that I learned I had Chiari (in 2007), but my Neurologist at that time made it seem like an incidental and insignificant finding.  A repeat MRI in 2011 confirmed Chiari and I started doing my own research. Now I am in the process of being evaluated for surgery though I don't think I will have it because I have no syrinx or tethered cord.  Will find out next week for sure.

If you need b12 supplements, find one that is methylcobalimin,not cynocobalimin, as many people who are deficent can't absorb the cynocobalimin. Good luck!

[zygy2]

I have POTS and that falls under autonomic dysfunction, the occipital nerve damage I am not sure about.  I am having more nerve pain now that they have been in my head three times but it is manageable.  Heat, ibuprofin and when all else fails, I take a pain pill.  Neck pain and around my eye.  It is more of a searing pain, luckily the crazy zaps have become much less frequent!  Have not been checked for b12 or D but because so many of us have that issue I take both daily :)  I have been very tired recently and am trying to track down the cause.  I am also hypothyroid as once again, many of us are!