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Topic: chronic clusters....help (Read 1047 times) |
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Artie
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chronic clusters....help
« on: Jan 31st, 2004, 11:09am » |
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My husband has chronic cluster headache. He takes Verapamil (960) and Depakote (1500 mg) as prophylactic. He injects imitrex or takes amerge (naratriptin) for breakthroughs. When the headaches break through the triptans he does a prednisone taper. Unfortunately, the prednisone is not very effective recently.
Things he tried previously are :
-oxygen (worked and then stopped working using a nasal canula. )
-beta blockers (no effect)
-elevil (no effect)
-acupuncture (helped some)
-topomax (side effects intolerable)
-baclofen (no effect)
-vicks nasal inhaler (helps sometimes)
-stopped smoking (helped for a while)
-stopped drinking (helped for a while)
-claratin (the antahistamine seemed to help with swelling from verapamil and may have helped slow the cycles???)
Here are the things he/we are considering next:
-Lithium
-Zonegran
-melatonin
-clomid
-the relationship of his snoring to ch
-oxygen with nonrebreathing mask
-switching from verapamil to a different calcium channel blocker
-contacting one of the large headache institutes about surgery or hypothalamic implants
As only this audience knows, we are descending into the next level of hell. His Neurologist is compassionate and works hard at staying up to date on new approaches, but in my opinion, this site is much better than PubMed for realistic treatment options. I would be grateful for ANY suggestions, advice or help from you guys.
PS. If any of you are anywhere close to Frederick , Maryland , I would love to meet.
Blessings and PFDAN,
Artie
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brad267
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Re: chronic clusters....help
« Reply #1 on: Jan 31st, 2004, 11:20am » |
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Not that I'm an expert, Artie, but based on the people here, I'd say go with the Lithium. Lots of chronics swear by it.
Switch to Zonegran for comfort... I hated Topomax!
And definately try the O2, correctly, with the non-rebreather mask. Unless you're filthy rich and can afford the Imitrex...  Also, there are other steroids to try, if the prednisone isn't working....
I don't know too much about the Melatonin.. Researching that one myself...
Good luck to you and yours,
Brad
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Bob_Johnson
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Re: chronic clusters....help
« Reply #2 on: Jan 31st, 2004, 1:21pm » |
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Have you explored: www.headachedrugs.com ?
Site run by a headache doc in the Chicago area; he has two excellent books out. Given your husband's history, I'd recommend the $50 volume aimed at docs. (You will find info at this site.)
But yes, lithium is a standard treatment for chronic cluster. Don't listen to the horror stories before you consider it. The doses cluster folks use are not associated with the side effects which may arise when used with psychiatric Dx.
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Bob Johnson
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jonny
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Re: chronic clusters....help
« Reply #3 on: Jan 31st, 2004, 1:56pm » |
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29 years chronic here 
For the last 12-13 years Ive been taking Verapamil (480 mg) and Lithium (600 mg) everyday, 90% of the HA's never even show up....The ones that do are killed with 02 using a non-rebreather mask (The mask is the key) or a 5 mg Zomig.
This is the ulimate chronics cocktail (Ask any Neuro) BUT, it dont work for some(Like anything to do with CH)....To go from 3-4 HA's a day to one every few weeks is god like.
Try it....youve got nothing to lose but pain. 
..................................jonny
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| « Last Edit: Jan 31st, 2004, 1:56pm by jonny » |
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t_h_b
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primary chronic since 1999
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Re: chronic clusters....help
« Reply #4 on: Jan 31st, 2004, 5:02pm » |
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Ditto on what everybody said, especially about the proper O2 mask. You might also try taping over the holes in a regular mask and removing it to exhale. Nasal cannulae don't cut it.
For melatonin, you can start at 0.5mg regular release. If it doesn't work after a couple of days, slowly increase it. When you get to 10 or 12mg and isn't working, it's not going to.
0.5mg does it for me, and I'm chronic, some others take a lot more. There was a study with either 10 or 12 mg and that's why many people take a large dose. However, a large dose can trigger headaches in some (me!) and even 0.5mg is a LOT more than your body produces naturally. Best to take as little as is needed to work. Also, it apparently takes different amounts to work for different people so you want to try the full range of doses. You don't want to try 12mg and decide it DOESN'T work if 2mg, for instance, WOULD work for you.
Another advantage to melatonin is the cost. I spend less than a dollar a month on it. The only medication that I have that's cheaper is generic aspirin.
On behalf of your husband, I'd like to thank you for being such a concerned ClusterHead Supporter. It takes a lot of strength and dedication at times.
Join OUCH from the link on the left or go to http://www.clusterheadaches.org There's more information there.
Good luck.
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| « Last Edit: Jan 31st, 2004, 5:07pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Samantha_Smith
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Re: chronic clusters....help
« Reply #5 on: Jan 31st, 2004, 6:17pm » |
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Sorry to hear about what is happening. We feel your pain. Botox injections have worked wonders for my ch's but they are VERY expensive and not all neurologists are qualified to administer them. My neuro is in Boston and I consider him to be one of the best. As with all meds, there are horror stories about Botox, but I have had nothing but success.
What about DHE injections or Migranal spray? Have you considered Stadol Nose Spray?
Hang in there.
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Tiannia
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Re: chronic clusters....help
« Reply #6 on: Feb 1st, 2004, 12:48am » |
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Dont have anything that i can add here except. Thank you for being a supporter and talking to the people who know.
Everyone tells me the Verapamil and Lithium everyday is the way to go and March 1st when I get into my new doc that is what I am going to ask for. Also, try and get the O2 to work better. I mean there has to be somethignto be said for an abort that is natural and not hard on the heart like Imitrex.
Tiannia
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clavers
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Re: chronic clusters....help
« Reply #7 on: Feb 2nd, 2004, 10:53am » |
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Two things: Imitrex eventually tends to become less effective. I switched to DHE 45 injections. You give
1 cc directly in a muscle, I use the thigh. It hurts a bit but not nearly as much as a CH. Eventually DHE will become less effective, but you have a couple of years.
If your husband has sleep apnea he might benefit from a sleep study and a cpap machine. I resisted this for years, but now that I use it my CH is much less.
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Artie
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Re: chronic clusters....help
« Reply #8 on: Feb 2nd, 2004, 12:42pm » |
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You guys are awesome! Thanks so much for the suggestions. It means the world to have such a supportive community for help.
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