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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Newbie here but not new to CH

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Newbie here but not new to CH (Read 702 times)

ihatech

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Newbie here but not new to CH
Sep 25^th, 2012 at 4:09pm

I'm so happy to find this sight. Dealing with CH feels lonely at times. My husband is a chronic CH sufferer since 2008. The only remission to speak of came in 2009, then they came back in 2010 and have continued since then. He has had temporary relief from steroids, but only while taking them. He uses O2 and sumatriptan injections as abortives. Unfortunately, Verapamil over 240 mg has an untolerable side effect for him, so he only takes that dosage with cafergot once/day. The neuro is suggesting DHE IV therapy. Kinda scary with no guarantees of remission. Does anyone have experience with this med? I'm glad to know we're not alone, but sorry for the pain you all have been through.

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Bob Johnson

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Re: Newbie here but not new to CH
Reply #1 - Sep 25^th, 2012 at 4:41pm

I can't give you any statistics but my sense if that our folks who have tried DHE have ver mixed responses to report: usually effective but for rather short time and then return to attacks.

Suggest you print out the PDF file, below, and use to discuss options with your doc for preventives.

Curious only: when side effects with the Verap. Unfortunately for you, it's the most widely used preventive with high rates of safety and success.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

(96 KB | 16 )

Bob Johnson

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Guiseppi

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Re: Newbie here but not new to CH
Reply #2 - Sep 25^th, 2012 at 6:35pm

Welcome to the board tech, we love our supporters around here. My wife found this board for me and saved my sanity. Check out this link to make sure he's getting the most benefit from his oxygen useage, slight changes in HOW you use oxygen can radically improve it's effectiveness:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Then visit our sister board, clusterbusters.com they use alternative methods outside of mainstream medicine and are putting out some pretty awesome results.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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wimsey1

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Re: Newbie here but not new to CH
Reply #3 - Sep 26^th, 2012 at 8:12am

Welcome, and thank you for advocating for your husband. I'm not sure why you find DHE IV scary. As Bob has said, I and others have tried it with mixed results. I am chronic, and it did knock out the clusters for about three weeks. Have not gone to it since, except in a different form: Migranal. That's DHE in a nasal spray. Works for about 24-36 hours. Since I'm chronic and have been for many years, any relief for any span of time is welcome. If your husband is episodic, it might just be enough to get him past the cycle. Worth a try. God bless. lance

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ihatech

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Re: Newbie here but not new to CH
Reply #4 - Oct 1^st, 2012 at 4:48pm

The side effects my husband has from Verapamil is sporadic swelling of his foot, or hand, or lower part of his arm, etc. I believe it is because it is a calcium channel blocker. He had the same reaction to a blood pressure med they tried him on several years ago.

The more noticeable side effect is memory loss. I'm not talking about walking into a room and forgetting what you went into it for - I'm talking about not remembering things that he has known for years. It's very frustrating to him and the Dr confirmed that it is a side effect of the Verapamil.

One thing he has used as an abortive when he is away from home is the A/C in his truck. He turns it up full blast and breaths it in and the h/a usually goes away. He tries not to use the drug abortives if he has another alternative.

Thanks for your responses.

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Kevin_M

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Re: Newbie here but not new to CH
Reply #5 - Oct 2^nd, 2012 at 6:02pm

Quote:

Verapamil over 240 mg has an untolerable side effect for him, so he only takes that dosage with cafergot once/day.

Concerning the verapamil, there is shorter acting and an extended release verapamil. If he is taking the shorter acting at 240mg/day, it should be divided into 80mg three times a day, not taken all at once. Check out what he is taking.

If he is taking the extended release (Verapamil ER), it can be taken once a day, but coverage can also be attained dividing it into 120 twice daily also, if it's okay with his doc, which may decrease some side effects.

Sometimes side effects can wear off in time. I got swelled feet only the first time I took it and was able to increase very gradually afterwards.

« Last Edit: Oct 2^nd, 2012 at 6:04pm by Kevin_M »

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ttnolan CH.com Veteran Offline beats me Posts: 247 Scotts Valley, CA Gender:	Re: Newbie here but not new to CH Reply #6 - Oct 2^nd, 2012 at 10:18pm An E tank of oxygen in the truck will work wonders compared to the A/C.
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