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shadia CH.com Junior Offline I Love CH.com! Posts: 76 Farnham Quebec Gender:	cyclic ch sufferer and verapamil Jun 20^th, 2016 at 8:30am Hi i am new on verapamil 180 long acting and my question is: since i am a cyclic CH sufferer spring and autumn , when do i stop the verapamil ,when you start getting cluster free how long do you wait to stop it? I still have a few short attacks once or twice a day but i am doing a whole lot better. Thank you .
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Bob Johnson

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Re: cyclic ch sufferer and verapamil
Reply #1 - Jun 20^th, 2016 at 9:45am

I'm not aware of any explicit medical guidance on when to stop. Given the relatively low cost of Verap, I'd consider stopping about one-mont after the last attack, assuming the timing in in line with you history of cycle timng.

Just a comment on how this is handled for folks with cycles which are very close together: they don't stop taking Verap. The logic is: when you have short intervals between cyclels, there is little to be gained by going thru the start-stop busness and there isn't any drawback.

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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: cyclic ch sufferer and verapamil Reply #2 - Jun 20^th, 2016 at 2:56pm ...what Bob said!....it's EXACTLY what my neuro told me..................
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shadia CH.com Junior Offline I Love CH.com! Posts: 76 Farnham Quebec Gender:	Re: cyclic ch sufferer and verapamil Reply #3 - Jun 20^th, 2016 at 5:01pm ok that is great to know so i wont stop, thank you.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: cyclic ch sufferer and verapamil Reply #4 - Jun 20^th, 2016 at 5:07pm Spring and Autumn clusterheads have a good record at keeping the beast at bay, by taking their vitamin D regimen daily, myself included. Hoppy
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shadia

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Re: cyclic ch sufferer and verapamil
Reply #5 - Jun 21^st, 2016 at 9:27am

i will continue both the vitamin d and verapamil, i am wondering if 180 mg is enough itis long acting but at one point during the day the shadows come back like at k2-3 , i see that people on this site are taking double and even triple my dosages. I am dealing witn my family doctor by phone , she is not very informed on CH, i am on a waiting list now going on 9 months to see a headache specialist. So i thank you so much for your support and it helps me to suggest things to my pdoc.

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Re: cyclic ch sufferer and verapamil
Reply #6 - Jun 21^st, 2016 at 3:27pm

The thing is, when your taking both the vitamin D regimen and Verapamil, and then you become pain free, it will be hard to judge if it's the Verapamil or the vitamin D regimen that's keeping the Smiley

at bay.

With the Verapamil, 240mg/day is a better benchmark, and then go up from their if it's not working, but remember, this is a blood pressure medication, and your blood pressure must be checked at regular intervals.

Hoppy

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« Last Edit: Jun 21^st, 2016 at 3:52pm by Hoppy »

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shadia

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Re: cyclic ch sufferer and verapamil
Reply #7 - Jun 23^rd, 2016 at 5:04am

it has been three weeks with shadows at k3-4 at first i had over 6-7 attacks per day not lasting to long but now i have shadows at k3-4 about two times a day lasting over two hours with both verapamil and vit d so i am exhausted and looking for the fastest pain relief , i do have imitrex injections and O2. I called yesterday at the headache clinic and i am the waiting list for about ten months and i still have a few months to wait and i am considered a priority one. But the good news is that there is always a neurologist who has knowledge on CH on call if ever i go to the e.r. but it's one hour away !!! Undecided

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Batch

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Re: cyclic ch sufferer and verapamil
Reply #8 - Jun 23^rd, 2016 at 7:37am

Hey Shadia,

How much vitamin D3 are you taking? Are you taking all the rest of the anti-inflammatory regimen?

Have you done the 3-month course of vitamin B 50?

Have you tried Benadryl (Diphenhydramine HCL)? Allergic reactions cause a flood of histamine that makes just about every CH preventative and abortive ineffective. Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on brain cells. 25 mg every 12 hours has helped many CHers experiencing problems like yours.

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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shadia CH.com Junior Offline I Love CH.com! Posts: 76 Farnham Quebec Gender:	Re: cyclic ch sufferer and verapamil Reply #9 - Jun 23^rd, 2016 at 4:56pm Hi Batch well i did do the 50 000 x 5 days now i am back at 10 000 ui per day plus the co factors , i had stopped the benadryl because of the drowsiness but i will start again tonight and i will take the b 50 x 3 months i had forgot about that one . Thanks again.
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Batch

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Re: cyclic ch sufferer and verapamil
Reply #10 - Jun 24^th, 2016 at 2:05am

Hey Shadia,

Thanks for the comeback... Try taking 50 mg Benadryl (Diphenhydramine HCL) with the evening meal... That works just as well as 25 mg every 12 hours... That way you'll sleep like a baby at night and drowsiness during the day shouldn't be a problem.

You're taking the right steps so hang in there... You should have the beast on the run shortly...

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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shadia CH.com Junior Offline I Love CH.com! Posts: 76 Farnham Quebec Gender:	Re: cyclic ch sufferer and verapamil Reply #11 - Jun 25^th, 2016 at 9:25am Thanks for all the tips i think benadryl did the trick ..absolutely no attacks yerterday and did not take verapamil or imitrex!!!!! Crossing my fingers . Again a big thank you to all of you.
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Batch

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Re: cyclic ch sufferer and verapamil
Reply #12 - Jun 25^th, 2016 at 9:10pm

Another happy CHer... Ya gotta love it when you see a response like this...

I'm of the opinion that most of the CHers that neurologists diagnose as refractory to CH preventatives, also suffer from an allergic reaction that floods their systems with histamine...

As these allergic reactions can be subclinical, i.e., no other obvious or outward symptoms, increasing the verapamil dose and adding another preventative will prove fruitless until the underlying allergy is treated with a good first-generation antihistamine.

Take care Shadia and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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