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hootchdom
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For the ones with the experience
« on: Nov 6th, 2003, 7:23am » |
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Started my cycle in late July (first in five years) knew exactly what it was when it hit. Saw some local doctors who treated me with some drugs that I wasn’t familiar with. After about a month with no relief went back to doc in Omaha who broke cycle five years ago, he put me on same treatment. To try and make long story short it seems I’m having some type of rebound headaches along with the clusters. I know when I get hit with a cluster, can’t mistake them (wake from a dead sleep, pacing, head pounding KIP 7-9) but the rest of the day I suffer from 5 to 6 distinctive headaches lasting approximately 4 hours starting at KIP 1 and peaking at KIP 5-7 depending on the meds I’m taking. Speaking of meds since July I’ve take prednisone, maxalt, trprol xl, lithium carbonate, medrol dosepak 21’s, zomig, verillan pm, replax, frova, indomethacin, imitrex nasal, amerge, topomax, dhe-45 self inject.
My first Neurologist tells me the clusters has transformed into some type of cluster/migraines and he is not sure what else can do for me so I should get a second opinion. My second Neurologist puts me back on the meds that I was taking in July that didn’t seem to work. I did find a Neuro at the University of Kansas Medical Research who specializes in Clusters but can’t get in to see him until the end of January.
My question for you all, have any of you gone through any similar experience? Any advice from anyone?
Thanks,
Mark
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Big Dan
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Re: For the ones with the experience
« Reply #1 on: Nov 6th, 2003, 8:12am » |
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I've never heard of it... but it wouldn't suprise me one bit...
... seems like these bastards get to where nothing rids you of them...
Here's some PF vibes for your head...
-Big Dan
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BarbaraD
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Re: For the ones with the experience
« Reply #2 on: Nov 6th, 2003, 8:30am » |
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Yep, sounds familiar. I deveoped Migraines along with CH. Neuro put me on Celebrex (mine are "arthritic" migraines) to fend off the migraines (sometimes it even helps - sometimes not).
They are different headaches - the fun part is distinguishing between them until it's too late. I have a third one thrown in my mix for good measure. Sometimes when one hits I have to wait till it gets to about a 6-7 to figure out which it is. Seems strange, but that's the way it works.
How long did you stay on the topamax and what dosage? It's been a lifesaver for me (I'm chronic CH), but only in larger doses than most neuros give.
The DHE-45 should have worked (usually does to break a cycle) if given LONG enough. Usually takes giving the injections until the cycle breaks. Always worked on the "end" of a cycle for me when I was episodic. Now it gives me "some" relief, but doesn't always work as good as it should.
The Imitrex spray doesn't usually work as well as the injections. Or at least that's the concensus on this board.
Have you tried Cafagot? It's another ergotomine and sometimes they work when the triptans don't. You might ask your doc about them.
Sorry you're having such a ruff time of it. But stick around and let us know what's going on. We're the best support team around. Been there - done that - and all of that stuff.
Hugs BD
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hootchdom
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Re: For the ones with the experience
« Reply #3 on: Nov 6th, 2003, 8:46am » |
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Bd,
Thanks for the reply.
Topomax is 50mg in the am and 100mg in the pm (not sure if that is about right or not). The dhe inject did seem to start working. The doc had me on three shots a day for five days. After three days i told him the headaches where reducing in number and in pain and was wonder in we could continue. He said it was not an option. Not sure why. I felt if we could just boost me over the hill we could break the cycle. He was the doc that told me on the next visit there was no more he could do for me and get a second opinion. So the saga goes......
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BarbaraD
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Re: For the ones with the experience
« Reply #4 on: Nov 6th, 2003, 10:30am » |
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They're being real careful with the DHE injections. 5 days should have broken it. I've had to go more than that, but there are side effects with DHE (and what meds don't have side effects?). The DHE is some BAD stuff and can mess up your circulation system as well as do heart valve damage. I've taken so damn much of it that I usually take niacin most days just to get the old circulation back and trying to run right. But there have been incidences of toes and fingers having to be amputated because of it.
Topamax dosage sounds about right. I've been up to 400mg a day at times, but again, the side effects are not pleasant. I've tried to level out at 100mg (after the cycle broke). My neuro and I work with the dosage, but change it according to how often the HAs start coming back on (I've been in remission for a while with just breakthru cycles). If you get on too high a dosage, you'd best take an antidepressant - depression is one of the big side effects and it can turn suicidal if not caught (been there - thank goodness someone spotted the symptoms and let me know about it - I didn't even realize how it was effecting me). Lower dose stopped that.
That's the trouble with the meds we take. There are so many adverse side effects and the docs just don't know what to do with us.
Go to the OUCH board and read up on medications or go to the archives and read what has and hasn't worked for many. Almost every drug imaginable is there in one place or another. Even hot sauce (didn't work for me,but.... neither did the banana peels).
But one thing - when you do visit your neuro or reg. doc - go armed with literature. It's available here for the printing. Take it with you - ASK about different meds. Give them time to work.
After 5 years (and you're lucky to go that long), I imagine it is ruff trying to deal with these things again. But in the last 5 years new stuff has come out that's working. Just read, read, read and then ask questions of your doc. If they don't know about stuff - educate them.
Hugs BD
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thomas
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Re: For the ones with the experience
« Reply #5 on: Nov 6th, 2003, 10:32am » |
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You may need the dhe iv teatment. Talk to your doc about it.
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Mark C
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Re: For the ones with the experience
« Reply #6 on: Nov 6th, 2003, 12:10pm » |
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Look here and here and here.
PFDAN's
Mark
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