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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Back after 14 Years

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Back after 14 Years (Read 1212 times)

nyk

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Back after 14 Years
Jun 27^th, 2010 at 3:47pm

Hi all. I was pain free for 14 years, am now 57 and the beast came back with a vengeance 3 weeks ago. Previous attacks were controlled well with sansert. My neurologist tells me cant get it in US anymore so he started me on a cocktail of verapimil, prednisone, zantac and imitrex for pain.First three days on pred held things together witrh someshadowing. When I decreased pred according to script and double verapimil, a big 9/10 that night. Went to Er and tried O2 for first time and it worked like a charm to abort the beast. Next day I broke out in a rash from head to toe, hive like but my wife who is a nurse says it is more like angoedema, ear lobes swelled and rash itches. Back to ER where all meds were blown off and I was given IV benadryl and sent back home on pepsid and attarax. Itching tolerable now and rash maybe slowly resolving. Anyway....the 02 info on here was very helpful to me. I can access the 02 through my wife so I am in good shape there. Any thoughts on my course especially wild skin reaction to what hey believe was the verapimil would be appreciated....best

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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: Back after 14 Years Reply #1 - Jun 27^th, 2010 at 4:13pm No clues on the rash, but just thought I'd tell you that a compounding pharmacy can make Sansert for you if your Doc prescribes it.... Bill
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nyk CH.com Newbie Offline I Love CH.com! Posts: 3	Re: Back after 14 Years Reply #2 - Jun 27^th, 2010 at 6:58pm really?....how do i find one of those..I will check with my doc....thanx.....
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Brew

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Re: Back after 14 Years
Reply #3 - Jun 28^th, 2010 at 7:41am

Check with smaller, family owned pharmacies. If they are not able to compound methysergide maleate (the generic name of Sansert), just ask them if they have a compounding pharmacy they use. Even the pharmacists at the big box stores (CVS, Walgreens, etc) should be able to direct you to a compounding pharmacy in your area.

Ironically, it was Sansert that gave me a rash - on my legs. But it worked well for keeping the CH at bay.

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Guiseppi

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Re: Back after 14 Years
Reply #4 - Jun 28^th, 2010 at 10:04am

OUCH! a 15 year remission.....I've been whining after he came back from a 2 year remission! Wink

You say you can access 02 through your wife, any chance you can get it at your home? I ask because my experience has been a delay of even 3-5 minutes substantially increases the abort time, much over 5-10 minutes and I have to go with the imitrex shot as it seems too imbedded for the oxygen.

I have had minor rashing going off prednisone in the past. Mostly just teen age type acne all over my back. (I'm 50...not quite a teen anymmore!)

Ask your doc about lithium, has been an efective prevent for many, myself included.

Joe

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

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nyk CH.com Newbie Offline I Love CH.com! Posts: 3	Re: Back after 14 Years Reply #5 - Jun 28^th, 2010 at 10:48am thanx for the suggestions...yes, I have the 02 at home and it continues to work. spoke to neuro office today and advice now is to use 02 and wait til cycle over...I see him in a few weeks ....he is prob hoping cycle will end on its own as we are into fourth week
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Back after 14 Years Reply #6 - Jun 28^th, 2010 at 6:52pm Have you read the posts about energy drinks, like Monster or Red Bull? 80 mg caffeine + 1000mg taurine, chugged at the onset of an attack, coupled with O2 is the best cocktail I've ever had! lance
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Lettucehead

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Re: Back after 14 Years
Reply #7 - Jun 28^th, 2010 at 8:38pm

nyk wrote on Jun 27^th, 2010 at 3:47pm:

...so he started me on a cocktail of verapimil, prednisone, zantac and imitrex for pain....

Back to ER where all meds were blown off and I was given IV benadryl and sent back home on pepsid and attarax...

Any thoughts on my course especially wild skin reaction to what hey believe was the verapimil would be appreciated....best

Ack! Angioedema is scary! Largely, when someone gets a drug reaction, that is one of the most dangerous. Most of the concern comes from a worry about swelling in the throat/tongue/mouth that may cut off air supply. I'm glad that you are OK!!!

Prednisone is (among other things) a strong anti-inflammatory - this is actually often what we use to treat allergic reactions - unlikely this is the source of the reaction.
Zantac is a H2-blocker - as is pepsid which you were switched to (not sure why). It is unlikely that you would have such a strong reaction to on H2-blocker and not another, so again, this is unlikely to be the cause.
Benadryl and atarax are anti-histamines - used for allergies and allergic reactions.

So, unless there was another exposure that you didn't mention, that makes the candidates for your reaction imitrex or verapamil. You didn't mention your imitrex use - had you used it in the preceding day or so? Imitrex has a stronger possibility of anaphylaxis, and one can have a delayed reaction to it, but if you didn't use it then, well, that would rule it out.
Certainly, verapamil would be a possiblity - unusual to have such a reaction to a calcium channel blocker but, hey, we have CH - we've already won the lotto to a certain extent, so to speak... Wink

Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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