Hi Laura,
My heart goes out to you. I get frequent headaches, but they are not constant. How long ago did you have meningitis? My headaches feel as if the top of my head is going to blow off, and I am thankful they are not constant. Besides the headaches, my worst problems are balance problems and memory loss along with fatigue that gets awful. My doctors are great, but when I ask how many patients like me they have ever seen, they usually answer "none". During my scans related to the BM, they discovered that I have a brain tumor on my pituitary gland. It is nonmalignant, and they are shrinking it with meds. The specialist I see for that seemed very interested in my case and is VERY intelligent. He is wonderful and my husband and I asked him more and more questions about the meningitis after effects. He trained at Mayo, but I am only the 2nd adult survivor he has ever seen, so he said that I am more of an "expert" than he is.
I see an eye specialist (I almost lost my eye from hemorrhaging during my illness), and ear specialist for my hearing loss, my internist, and a neurologist. Their statements have always been, "It is amazing you are alive!!". I am very thankful for that, but that does not make my day to day problems much easier to deal with. I understand your frustrations! I feel the same way. I seem to be the "old" survivor at 59 years old. God has brought me through rough waters, and I trust in Him, but the tiredness does not always make me so willing to accept the way I am now. I don't think the doctors mean to ignore our problems, it is just that there are no "Meningitis Specialists" out there!
Well, this has not been helpful to you I am sure, but I do understand. My life is so changed, as I am sure yours is too. Please don't "give up"!
Keeping you in my prayers,
Eileen
On Nov 9, 2007 10:22 AM, cph72 <
lbstadler@...> wrote:
I went to the anesthesiologist today and he said that basically he is
not optomistic about my condition (post-meningitis headache) and
being able to help me -- he said that "the odds are against me" for
accupuncture or anything else working for the pain. I find that hard
to believe since there are cagillions of pain killers out there!!!!!
He also said Botox would not work since it is a treatment used for
trigger points and since mine is related to a CNS infection it
wouldn't do anything for my pain. This was something that I have
already been thinking and he basically confirmed it. He pointed me
back to my dr. (who is "world renowned") but the problem is I don't
get the feeling he's using his ability to do all he can...maybe he is
and I just do see it.
The bottom line is that the dr.s are telling me they are "giving up
on me" that "nothing will work" and that "the only hope is keep
trying meds to see IF something works" -- somehow I just can't accept
this.
There MUST be something they can do to help me with the ongoing daily
constant pain.
Any insight you have would be appreciated.
...Laura
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