Hi,

 

I'd like to introduce myself, just signed on...

 

My son had bacterial meningitis @11m back in June of 2005.  After a 12 day stay in the hospital he was discharged and diagnosed with profound hearing loss and mild vestibular issues (can't close his eyes and stand on one foot).  Fast forward to 2007 - he is now bilaterally implanted with a Cochlear brand N24C and N24 double array cochlear implant with freedom processors and is totally mainstreamed in school.  The second implant was 5 years after the first as bilateral was not insurance approved till then, plus the second ear had a high level of ossification.

 

As to why I've joined your group - he also suffers from extreme headaches several times per month.  No one has previously lent any insight as to the cause and when I stumbled onto your group, I now realize it is most likely meningitis related.  He too gets massive headaches by the end of the day that culminate in light sensitivity, loss of apetite and vomiting.  Next morning, he's just fine.

 

What I wanted to add on to the post I'm replying to is that recently he took up swimming on a swim team.  He swims 6 days a week and he loves it.  One thing I hadn't noticed however, until you mentioned it, is that his headaches seem to be a little bit less often since he started swimming so much.  I don't know if it is the swimming or that he is not now participating in electronics (TV, game boy, computer) as much.  Either way, I'm happy that it seems to be having some possitive effect.

 

I look forward to learning from all of you who have been there too:)

 

Regards,

Suzanne in CT

mom to Sam, 8yo

meningitis @11m 06/00

N24C 09/00 Left

N24 double array 06/05 Right

 

 

-------------- Original message from "cph72" <lbstadler@...>: --------------


> Hello all - felt like giving everyone an update on my situation in
> hopes that you may be able to relate or have any insight...
>
> I went to a private neurologist last week (a Harvard grad), who did
> the normal neuro exam and listened to my story and asked lots of
> questions. Her view was that my other docs have not done anything to
> really find out what the problem was to figure out my problem.
>
> She suggested I have an EEG, which my other headache dr. said would
> not show anything...and after we discussed it, we agreed that I would
> try a new med called Lamictal first, another anit-seizure medication.
> I was perscribed 25mg twice a day that I take at breakfast and at
> dinner time and if this me dication doesn't help, then I will have the
> EEG - even though it will cost me $400 out of my own pocket.
>
> I wonder if anyone with chronic postmeningitis headache has had an
> EEG and if they were able to see anything on the results...to shed
> any light?
>
> I have been on the Lamictal since Friday night and it does seem to
> calm the pain in my head, however it is giving me a secondary kind of
> headache (kind of sick, achy head feeling)...and is overall making me
> feel relaxed (good side-effect), but also nauseous, out of it,
> sleepy, a bit anxious and woozy. I will give it some time to see if
> the side-effects get better and if it does continue to curb the pain.
> Fingers crossed!
>
> The neuro also said the same thing as the pain dr. that Botox would
> not help me because what I have is a CNS problem and Botox is only
> for tension headaches. I still wo n't rule this out, but have to
> somehow trust that two drs. have told me the same thing so there
> might be something to it.
>
> The other thing the dr. said was that swimming is a good exercise to
> try and said that for some people with brain injuries that swimming
> seems to help. She said that it has to do with the equilibrium
> effect.
>
> That's all for now. Feel free to chime in if you have any feedback.
> It's would be interesting to know if anyone else has tried this
> medication and if they'd had success with it. Also, has anyone found
> a medication that does help with minimal side-effects?
>
> Until next time...the quest continues.
>
> Hope this finds you having a good day today.
>
> Warmest regards,
> Laura
>
>
>
>
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