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Cluster Headache Help and Support >> Getting to Know Ya >> New to ch diagnosis and have some questions. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1277693014 Message started by Ceasars Mommy on Jun 27th, 2010 at 10:43pm |
Title: New to ch diagnosis and have some questions. Post by Ceasars Mommy on Jun 27th, 2010 at 10:43pm
I'm 26 and I've been dealing with clusters for 7 years misdiagnosed as migraines. I never really felt like migraines fit what I was dealing with. The only thing I have ever found to help is stadol nasal spray but am finding most doctors won't prescribe. I've tried lots of meds and a few like indomethacin made them worse. Wondering what advice you might have as things to try. I've tried Topamax, Depakote, Verapamil, Indomethacin as prevents. I've tried Imitrex, Axert, Zomig, Amerge, Maxalt, Frova, Prednisone, and Ketorolac as aborts. Don't really like the stadol but it makes the pain bare-able.
Thanks in advance, Valerie |
Title: Re: New to ch diagnosis and have some questions. Post by QnHeartMM on Jun 28th, 2010 at 7:34am
You might also want to share the dosages of things you've tried like verapamil and topomax. Many CH'rs are often underprescribed for these meds, and working with your doctor on a higher dose may bring better results.
O2 is the way to abort! |
Title: Re: New to ch diagnosis and have some questions. Post by wimsey1 on Jun 28th, 2010 at 8:23am
When you say you were misdiagnosed with migraines, you don't mean ocular migraines, do you? I ask because ocular migraines present very similarly to CHs, and a lot of what you list as meds you've tried (I agree it would be helpful to know the dosages) have worked for many of us. On the other hand, they do not work so well on ocular migraines. Stadol does help OMs, but it did absolutely nothing for me when I was having a Kip10. lance
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Title: Re: New to ch diagnosis and have some questions. Post by Ceasars Mommy on Jun 28th, 2010 at 9:42am
No not ocular migraines. Part of the problem is I can't take Topamax at all, once I get to a dose that seems to start working I develop a twitch in my face. Imitrex, I've tried every form and I'm pretty sure every dose. Imitrex Injections make my skull feel like it's on fire. I really don't mind anti Stadol opinions and as I said it only makes it bare-able and really only sometimes. I had been seeing a headache specialist but he seems to be the one that misdiagnosed. Everyone I've ever talked to with migraines doesn't even really have any similarities except that the pain is in my head. As far as the other meds I have tried, it may take me a while to figure out what doses I have tried but I'll figure it out.
Thanks |
Title: Re: New to ch diagnosis and have some questions. Post by Guiseppi on Jun 28th, 2010 at 9:59am
Welcome to the board. It'll start sounding like a broken record but do look into oxygen. 32 years of these damned things and nothing comes close. My mother in law has started sewing "tank tops" these cute little skirts to put on oxygen tanks to make them less imposing. Because on cycle..I am NEVER more then a few feet away from an oxygen tank. It's that scary effective!
For a prevent you haven't mentioned lithium. Don't let the hollywood stereotype of a drooling zombie scare you. The doses we use it at are relatively low. I was a cop for 30 years and even my beat partners couldn't tell when I was on it. It blocks 60-70% of my attacks if I am strict with avoiding my big triggers....for me that's alcohol, sustained stress, and sleep cycle disruptions. Triggers vary big time from person to person, take sa lot of trial and error. (And DAMN the errors hurt!) Keep asking questions, very few doctors on this board but we have a wealth of real time exprience. Joe |
Title: Re: New to ch diagnosis and have some questions. Post by wimsey1 on Jun 28th, 2010 at 6:46pm
[quote]Nighttime sufferers, trying to avoid stimulant effects of caffeine, have had enough success with melatonin that it seems worth a try. Sleep through the night, herbal, cheap etc. [/quote
I'll ditto that! I started taking 3-5mg of melatonin to no effect. Upped it to 15mg/night, and it works very nicely. I think Bob posted an article on its effects in the 9-18mg range? My headache specialist agreed, too. So it works and a doctor agrees. Not bad...a two bagger! lance |
Title: Re: New to ch diagnosis and have some questions. Post by Lettucehead on Jun 28th, 2010 at 8:49pm
Definitely need a new headache specialist - with that complicated a history, you need someone experienced on board. Did you see a new doc and that's who gave you the CH diagnosis as your past doc told you that you have migraines?
Looking at your meds, you may be one of those people who need a titration of meds to higher dose and then also a layering of med - i.e. not just verapamil but verapamil AND topamax, for instance - using them together may help keep the dosages lower and therefore more tolerable side effects. Looking at your med list, I'm not seeing gabapentin (neurontin) or lithium - these may be a couple of meds that you could speak to your doc about trying. And O2 - definately need O2... |
Title: Re: New to ch diagnosis and have some questions. Post by Linda_Howell on Jun 28th, 2010 at 9:22pm Quote:
ABSOLUTELY!!!!!!!!!!!!! 02 ABSOLUTELY NOT Stadol! yes, please DO tell us what dosages of those other meds you are on. We have heard from new folks whose Dr.s have them on such low dosages of verapamil, etc. that we all sit here and shake our heads at those Dr.s stupidity. Of course it isn't working....dosage is far too low. Same thing with 02. Some Dr.s prescribe 02 reluctantly. And then they give a scrpt for 02 to be delivered at 4 or 6 lpm. Most of us here have a regulator that goes to at LEAST 25 lpm. and can abort in a very short time. Those with 45 and more can abort even faster. Linda |
Title: Re: New to ch diagnosis and have some questions. Post by Mosaicwench on Jun 28th, 2010 at 11:21pm
I know my sufferer dropped a neuro who "wasn't comfortable" with the high doses of verapamil that was therapeutic to him. He found a new neuro and this guy said something along the lines of "you CH sufferers are cowboys" - he meant clusterheads can take a lot more of these meds than the general population can tolerate.
I can't say it loud enough - Oxygen, oxygen, oxygen. It's cheap, almost no side effects, and WORKS. |
Title: Re: New to ch diagnosis and have some questions. Post by jon019 on Jun 29th, 2010 at 12:05am Mosaicwench wrote on Jun 28th, 2010 at 11:21pm:
My treating neuro is like minded...I've been up to 960-1040 mg/dy. She didn't blink and I've had relatively few side effects..... Now, the question is...anybody...WHY can a clusterhead tolerate what would put a "normal" on the floor...UNDER the bed?????? |
Title: Re: New to ch diagnosis and have some questions. Post by Guiseppi on Jun 29th, 2010 at 9:12am
Now, the question is...anybody...WHY can a clusterhead tolerate what would put a "normal" on the floor...UNDER the bed??????
Cuz Jon...we ain't right! ;D Joe |
Title: Re: New to ch diagnosis and have some questions. Post by Ceasars Mommy on Jul 2nd, 2010 at 3:09pm shaggyparasol wrote on Jun 28th, 2010 at 10:50am:
Shaggy I want you to know that I think I love you! Tried Monster "at first twinge of an attack" and so far no cluster today! Which is awesome news cuz I can't tell you the last time I was PF from 10am - 3pm. Normally I try to avoid caffeine but I'll definately be trying this again! |
Title: Re: New to ch diagnosis and have some questions. Post by Lettucehead on Jul 2nd, 2010 at 9:59pm Red bull rocks! |
Title: Re: New to ch diagnosis and have some questions. Post by neuropath on Jul 4th, 2010 at 3:17am
Get yourself O2. As much as we always talk about the effective abort quality of oxygen, we don't often enough emphasise the phsycological effect it has.
For me at least it is an extremely relaxing thought that I have something in the other room that will almost universally kill an attack within 5-10 minutes. If you have tried all conventional prevents to no avail check out alternatives on clusterbusters.com. The only treatment that has given me relief after years of sometimes 30 useless pills a day. |
Title: Re: New to ch diagnosis and have some questions. Post by jon019 on Jul 4th, 2010 at 2:01pm neuropath wrote on Jul 4th, 2010 at 3:17am:
EXCELLENT point.....the peace of mind I get from a row of e-tanks at the ready.... and one in the breach.... is incalculable. Best, Jon |
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