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Topic: What should I suggest to my doc? (Read 246 times) |
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MarkHW
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What should I suggest to my doc?
« on: Jun 3rd, 2002, 9:25pm » |
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I'm a chronic cluster sufferer. I have major cycles in spring and fall, but have mini-cycles year round with no more than 2-3 weeks between cycle.
I finally found a neuro who understands clusters!
The problem is that I keep going into cycle and he is giving me prednisone to stop the cycle. This works great, but, of course, he will not keep giving it to me indefinately. He tried Verapomil and it didn't touch the cycle (and gave me stomach problems to boot).
So, he has suggested a couple anti-seizure drugs, lithium, etc. What would anyone suggest as something to try? I tried depakote years ago and it did not help.
Thanks...Mark
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The clusterhead formerly known as williamsmh.
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clusterdome
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Re: What should I suggest to my doc?
« Reply #1 on: Jun 4th, 2002, 1:40am » |
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Hey Mark,
When CCB's didn't work and I begged my regular Doc to let me get cut, the Neuro said ok BUT first try this. I had seen about six Neuros by then so I knew the program.
When he told me 160mg of Inderal LA I figured this sucker's nuts but if he'll cut me and I have an 80% chance I don't give a rat's ass, whatever! Just get the knive before I do!
It's been awhile so I'm guessing it was a week or so and my pain meds actually started to work. I was eating them and myself away back then. Now, 20 years later I don't take my pain meds for all my CH's like I did then, and when I do take them I don't need as many. I know me - and between one to three kick it out or down to a dealing point.
I must tell you though it took quite some time to know when to take one, two or three and if I should walk or run to them. When a bad cycle hits and three don't cut it I up my beta blocker LA dose to 360mgs. It's ok with my Doc's and 'The Book' to do one every 12 hours if needed.
I hope you find your answere my friend, soon!
PFDAN to ya.......................Ed
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kim
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Re: What should I suggest to my doc?
« Reply #2 on: Jun 4th, 2002, 8:15am » |
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Hey Mark,
A lot of people take verapimil with another med (lithium for example). The two together have had success. Maybe read up on these meds and give the verap another try?
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NotH20
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Re: What should I suggest to my doc?
« Reply #3 on: Jun 4th, 2002, 10:08am » |
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Hey Mark - the only anti-seizure meds that I am familiar with are Keppra and Topomax. I used both on my last cycle. Keppra can be increased at a faster rate than the Topomax and that gives your body a "boost." Both meds made me quite uneasy, dizzy and off balance. The Topomax made me constantly second guess myself.
Have you tried a DHE IV treatment? That in combination with the meds above stopped my last cycle in January and I've been pain free since then except for a few pains here and there - something I can DEFINITELY deal with smiling.... 
One more thing - as you know everyone gets relief from a variety of meds. Just becuase Depakote didn't work for you years ago doesn't mean you should throw it out the window all together. It just may work this time.
Good luck to you and keep us posted.
NotH20
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Ueli
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Re: What should I suggest to my doc?
« Reply #4 on: Jun 4th, 2002, 10:08am » |
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Mark,
Are you sure it was the Verapamil and not the Prednisone that gave you stomach problems?
Constipation is a common side effect of V. but I never heard about stomach troubles.
Also, remember it takes 1 to 2 weeks - at a high enough dose - for Verapamil to dampen or suppress the attacks. And the 'high enough' dose may go up to 920 mg / day.
PFNADs,
Ueli
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simpson1974
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Re: What should I suggest to my doc?
« Reply #5 on: Jun 4th, 2002, 10:44am » |
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Yeah, I think Verap. is fairly light on side effects, but Prednisone... it causes some wild stuff, and it definitely affects my stomach. On it now... sheesh.
A combination of inderal (80 mg 2x daily) and neurontin (300 mg 3x daily) ended my last cycle, but wasn't helping my current one. I'm on Depakote and inderal now, but no luck so far. Then again, I haven't been taking it long enough to have too much luck.
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ave
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Re: What should I suggest to my doc?
« Reply #6 on: Jun 5th, 2002, 10:31am » |
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Here I go again, being disagreeable...
My stomach invariably reacts to constipation by giving me trouble.
Vera constipates me and I won't complain, (would not dare) but my stomach does.
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MarkHW
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Re: What should I suggest to my doc?
« Reply #7 on: Jun 5th, 2002, 1:16pm » |
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Yeah, the verapamil was definately the culporate. What happened is that I had constipation for a couple days and then diarrhea for a few hours and start over.
Once I went off of it, the symptoms stopped.... The prednasone doesn't seem to give me any side effects at all.....
Maybe I should try neuroton with something else. The neuronton helped until I had to up it way high.... maybe a combo of neuronton and something else...
I'll talk to my dr.
Mark
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The clusterhead formerly known as williamsmh.
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