Hemicrania Continua

[cookiesecond]

Geez Deb you definitely need a turn of events!!! Some good news for a change!
We will keep you in our thoughts and prayers.
Lynn

[Captain Deb]

Hiya,
I thought I would try this wonder drug, too, but my doctor's nurse just said my pharmacy doesn't have it, that there's a nationwide shortage!  How do you like that!?

I really wanted to try it....oh well.
Hope you're feeling better, Capn.
Nan

Nan, what wonder drug is that?
Capt Deb
PS You bin a little quiet, wench!  How's yer Ragin' Whizzies? Better each day, I hope!

[Captain Deb]

I was rereading some of the post and it seems like "Staypoz" was getting some headache relief from injections at a pain clinic. Deb, Maybe this treatment is worth trying since your stomach won't tolerate some of the medications. Have you tried any kind of injections? From what I can tell, headache neurologists tend to prescribe medications (including Botox) while pain clinic doctors (mostly anesthesiologists) favor nerve blocks and steroid injections. Is this what most of you have found as well?

I can't get my prescription filled for Indomethacin. My pharmacist said that 3 companies used to make it and now only 1 is making it. Luckily, I still have some, but am wondering if I will run out before it is available. I have some extended release left over but would hate to increase my daily dose just because I couldn't get the smaller dose.

A while ago I heard from someone who after trying many types of medication finally found relief from Depakote. I remember her saying that Neurontin didn't help her but this did. I never tried it because of the weight gain side effect and I still had other options to try. She helped me realize that you just need to keep trying and don't give up.

Have you tried any of the online pharmacies? You have a script.
Capt Deb

[nannettesea]

Capn, yea, been kinda quiet.  Feeling kinda manic-depressive these days.  keep hoping for a miracle, and guess that's dumb.  Still dizzy as ever, that drug is Indomycethin (sp?) I have the long-acting kind waiting for me at pharmacy, along the lines of trying migraine meds.

After reading Chelsea and Chris' story, I know I should be grateful. 

Sorry about the surgery for you.  GEEZZZZZ!!! What next!  You hang in there.
Nan

[staypoz]

Sorry to hear about your needing another operation.  As Gilda Radner used to say, "It's always something!"

Re Janet's comments about my finding relief from nerve blocks.  They do make a difference.  I haven't had a brain wreck in 10 days.  I saw my neurosurgeon last week and he suggested I see yet another headache doctor.  So, I picked up the book this particular headache doctor has written and he actually talks about post-accoustic neuroma headaches in it.  If I understand what I read, his theory is that they are a form of migraine and should be treated as such, but from all the posts I've read, those meds don't always work for everyone.  He further says that the kinds of nerve block I am getting, while providing relief, aren't the solution.  I am staying with the pain doc for now and away from the headache guy.  I also had my "full induction" hypnotherapy session this week.  After just a few days of practice, I can say it's helping too.  Whatever works. . .     

Good luck!

[Captain Deb]

Sorry to hear about your needing another operation.  As Gilda Radner used to say, "It's always something!"

Re Janet's comments about my finding relief from nerve blocks.  They do make a difference.  I haven't had a brain wreck in 10 days.  I saw my neurosurgeon last week and he suggested I see yet another headache doctor.  So, I picked up the book this particular headache doctor has written and he actually talks about post-accoustic neuroma headaches in it.  If I understand what I read, his theory is that they are a form of migraine and should be treated as such, but from all the posts I've read, those meds don't always work for everyone.  He further says that the kinds of nerve block I am getting, while providing relief, aren't the solution.  I am staying with the pain doc for now and away from the headache guy.  I also had my "full induction" hypnotherapy session this week.  After just a few days of practice, I can say it's helping too.  Whatever works. . .     

Good luck!

Staypoz,
Name of Doc? Name of Book? Where to get it?
Capt Deb

[Larry]

[AAAAAAAAARRRRRRRRRRRRRRR Capt Deb,

Laz stands on desk and cries for our captain Deb,
She is a wonder woman who cannot thread,
Dazed and confused she may just be,
but a bright and fun person is she

Get ye better soon young Captain Deb,
coz the good ship PBW sets sail for the magical med,

Oh joy it is to have found Captain Deb,
for a fun loving person I have not read

So here comes the jumbie chant,
wet t-shirt in hand.

oooooooooooooooooooeeeeeeeeeeeeeeeeeeeeeeeeee
dipy di do

Laz gets really strange looks so in fear of being put away, gets down from desk and gets on with work.

[matti]

I am sorry to hear you are having surgery Capt. Deb.  Keeping you in my prayers and sending you a hug.

Ursa, you take good care of mommy!

Hugs,
Cheryl

[staypoz]

Capt Deb, The book is Heal Your Headache by Dr. David Buchholz.  I have never been evaluated by him.  I picked up his book at a Books a Million; it's probably available through Amazon.  I think he has a pretty clear bias about the cause of pain but if he can help, it's worth checking out.  Like I said, I'm sticking with my pain guy for now.

Staypoz

[Static]

Deb,
Sorry to hear about your needing another surgery.  The orthopedic guy I see for my back wanted me to have surgery but I just refused.  Will live with it for now cuz its not life threatening and not constant.  It only hurts when I use it :/  Watching "America's Got Talent" right now and hoping for a good laugh.  Seems to be the best thing to keep me diverted lately, a good laugh.  Hope things work out for you!