[cazzie]

hi all.
it caroline here.

for over a year now i had a lot of migraines every 2months and on top of that headches.

i been to the doctors and they say there nothing they can do in so many words.

when i saw my Docotr for my shunt i told him that i been having migraines and he said how do you now is it a migrain.

1. i now get a headches before hand.
2. i'm very sick
3. i get pain all the time when i'm stand or even if i move.
4. i'm very tiyed.
5. just very weak.

i'm on some meds and they work but dont work if you now what i mean.

i also have epilepsy

i got to the stage now where when i get this pain nothing helps just sleep and i can sleep for hours

my last CT scan was 5years old


please somebody

[jeff179120]

Dear Caroline:

I'm a 53-year-old man with a VP shunt and I've been suffering similiar symptoms to yours for a couple of years now. My vp shunt was inserted in 1998, before they had programmable valves.
Neurologist had me on narcotics for a while, but they didn't get rid of the pain, just mask it. When they took another doctor took me off the narcotics (too much street abuse here) I was in severe withdrawal for two weeks.
I now take only two drugs, one for an unrelated problem, but I use Clonazapam (.5 mg.) to help with the seizures. I was on three .5 tablets daily, but dr. upped it to four a day about a year ago when the seizures increased. While I still get seizures, they're not as bad.
As for the headaches, I'm using no-name acetaminophen, 500 mg. as needed. Maximum dose is 8 tablets a day, but I find one at a time about three times a day is enough.
I wanted a shunt revision, but doctors now say that's impossible. I wanted a programmable valve and they won't touch that idea (say the risks outweigh the rewards). I'm unable to work (was a reporter/editor in newspapers for 25 years), but I'm able to function with the help of homecare services for shower assistance and cleaning and a supportive girlfriend who ensures I don't take too many meds. I also feel very weak and tired and need a cane or walker (which I both got funding help for) to get about. But I'm still able to participate in card tournaments and go for a once a week outing. It beats a nursing home
I live in a geared-to-income senior citizens/disabled persons apartment complex and aside from the occasional church service downstairs and a construction project every couple of years, I'm able to tolerate the noise.
The clonazapam is not really a seizure pill, but rather a relaxant, but it works for me. I'm afraid the cards have been dealt for both of us and there are no more magic surgeries or medications that are going to help, so I just cope the best I can. I too was diagnosed with epilepsy shortly after the hydrocephalus, but as I said the seizures aren't as bad as the headaches. I find the worst thing to do is sit and do nothing. If, as my neurosurgeon tells me, I keep my mind moving with card games, word games, etc. it will slow the deterioration down. And the headaches don't get as bad. But the neurosurgeon and neurologist I say both said I just have to accept the condition and try to live with it. So don't feel your situation is unusual. Hope this helps.
Jeff
Kirkland Lake, Canada

Originally Posted by cazzie

hi all.
it caroline here.

for over a year now i had a lot of migraines every 2months and on top of that headches.

i been to the doctors and they say there nothing they can do in so many words.

when i saw my Docotr for my shunt i told him that i been having migraines and he said how do you now is it a migrain.

1. i now get a headches before hand.
2. i'm very sick
3. i get pain all the time when i'm stand or even if i move.
4. i'm very tiyed.
5. just very weak.

i'm on some meds and they work but dont work if you now what i mean.

i also have epilepsy

i got to the stage now where when i get this pain nothing helps just sleep and i can sleep for hours

my last CT scan was 5years old


please somebody