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Cluster Headache Help and Support >> Getting to Know Ya >> First time here http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1289963477 Message started by Hothead on Nov 16th, 2010 at 10:11pm |
Title: First time here Post by Hothead on Nov 16th, 2010 at 10:11pm
Wow I can't believe I actually found a place to talk to other people who understand about the pain in my head!! I could write a book but I won't. On Nov 1 I started taking 100mg Verapamil ER 24hour and it's making me nuts! Anybody else take Verapamil? So far I see some hope with preventing headaches, but I'm not sure I can stand to keep feeling like this! Any input would be appreciated! Thanks and God bless!
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Title: Re: First time here Post by Guiseppi on Nov 16th, 2010 at 10:29pm
Welcome to the board! Are you working with a headache specialist neurologist? CH is a rare malady, your best chance at an effective treatment regimen is someone who knows the CH ropes!
100 mg a day of verapamil is low, CH'ers go as high as 960 mg a day to get relief. That being said, DON'T alter your dosing without working closely with your doc. Dangerously low blood pressure can be a side effect of too high a dose. Do you have any abortives? Oxygen? Imitrex, either injectable or nasal spray? Have you tried energy drinks? Any containing caffeine and taurine, chugged at the first sign of an attack will abort or reduce an attack for many. Give us a rundown of your diagnosis, treatments you've tried, what has and hasn't worked. Glad you found us, hope we can help you out. Joe |
Title: Re: First time here Post by Hothead on Nov 16th, 2010 at 10:47pm
Thanks for the reply! I've had headaches since I was a kid and I'm almost 48 now. Had my first true migraine complete with aura when I was in 7th grade. Over the years my headaches have evolved and increased in frequency. I have tried Midrin, Imitrex, a few antidepressants, Topamax, Inderol and now Verapamil. I also take Maxalt as an abortive. I have seen a neurologist once and it was a complete waste of time. Now I"m back to trying to work with my primary doc who is very attentive and trying to help me. No one has ever suggested cluster HA's until a few weeks back when my doc asked me if I had tearing or any nose stuffiness with the headaches and I said yes. That's when she suggested a calcium channel blocker and I said sure why not? Sometimes I wake in the night with the pain or wake in the morning with it. I can have bouts that last 8 days. The Maxalt takes the pain away for most of the day if taken in the A.M. but 9 times out of 10 the pain will return later in the day/early evening at which point then I'm screwed for the rest of the night. Needless to say no sleep does not help. I feel almost anxious on the Verapamil which isn't good because I do have an anxiety problem as well. I'm wondering if taking regular Verap as opposed to ER would help me not feel so crappy all the time. Sorry for the novel.
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Title: Re: First time here Post by Guiseppi on Nov 16th, 2010 at 11:15pm
Not at all, but I'm conerned about your diagnosis. CH has distinctive characteristics that differentiate it from classic migrains. Attacks typically last from 30 minutes to a couple of hours, with pain so intense you scream, yell, bang your head on the floor etc. An 8 day CH attack would probably be fatal! That being said, there are people who suffer from both migrains and CH, making the diagnosis and treatment even tougher!
Take the cluster quiz on your left and record your answers. I'd also consider a diary, make it as detailed as possible. When the attacks start, how fast they build, how high they build, describe the type of pain, it's location, how long it stays at peak, how fast it dissipates. Any triggers you've established, any secondary symptoms you observe during an attack. The diagnosis will be in the details. As bad an experience as your first trip to a neuro was, you still need to look into a headache specialist neuro. It's your best bet at an accurate diagnosis and an effective treatment regimen. If it is CH there are numerous treatments that are helping most of us live normal lives. But it requires careful analysis of each treatment for its effectiveness and side effects. A hit and miss attempt at finding a med which works is a recipe for a lot of pain I fear! ;) Wish you a world of luck, headache pain, of any type, sucks! Joe |
Title: Re: First time here Post by Chris H on Nov 17th, 2010 at 4:25am
Fully second Joe's responses. Curious what issues you're having with that dose of Verapamil? -Chris
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Title: Re: First time here Post by Hothead on Nov 17th, 2010 at 8:52am
Thank you so much for all the great info. Makes me wonder now if my doc came up with the term "cluster" HA because of the pattern that I get them in. You know, clusters of headaches, as many as 12 a month clustered together with a few days break in between. Now I'm feeling pretty silly since it would appear that what I'm experiencing is not TRUE cluster HA's. Oh well, guess I have to start somewhere. I definitely will look into finding a doc that is considered a HA "specialist". Thanks again.
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Title: Re: First time here Post by Bob_Johnson on Nov 17th, 2010 at 2:24pm
Don't be concerned if your headaches don't fit a diagnostic statement: variation is the norm for us and it's not uncommon for symptoms to change over time, especially when you're first developing them. Many of us have had "wandering" symptoms pictures for months or even years before a stable pattern emerged.
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