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bradish

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Florida
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Cluster won't go away - help
Jul 16^th, 2017 at 1:15pm

I've had clusters for almost 20 years and have always been able to get them to go away. I've been on verapamil for a preventive and imitrex injections to get the headache to stop. Currently, I am on 720 mg of verapmil with no luck. They just keep coming more frequently. Any suggestions as what else I can do. I'm exhausted and just want some relief. Thanks in advance.

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LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: Cluster won't go away - help
Reply #1 - Jul 16^th, 2017 at 3:45pm

Hi Bradish,
Have you tried the anti-inflammtory vitamin regimen? Plenty of posts and weeks worth of reading on this topic. Has helped many of us get through cycles pain free, both episodic and chronic sufferers.

Ever try hyperventilating o2 as an abortive? Plenty of reading on this website on that subject too. Much more affordable and less harmful than Imitrex injections.

Red Bull or any energy drinks containing Taurine and Caffeien sometimes help abort by chugging it fast at onset of attack.

Do you have a knowledgeable doctor familiar with CH treatment?

Where do you live?

Hope this helped, imagine others will chime in soon. Pain Free Wishes to you!

-Gregg

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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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bradish

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Florida
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Re: Cluster won't go away - help
Reply #2 - Jul 16^th, 2017 at 4:04pm

I moved to Florida 2 years ago and haven't had them this bad where I couldn't get rid of them on my own. I don't have a good knowledable doctor here. I find that I find to teach the doctors and tell them what I need. I used to do this Vitamin regimen with calcium citrate, fish oil and vitamin d. I'll start that again. I have tried the oxygen and Red Bull before but found they didn't work as fast as I would like. The oxygen I don't have a regulator so I'll have to get a script and find a regulator for. It's hard when doctors don't know what they are and how to treat them. Keep the suggestions coming. I have a feeling my body is getting used to the verapamil. I've been on it for about 10 years and can't go lower than 360 my before an episode starts.

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: Cluster won't go away - help
Reply #3 - Jul 16^th, 2017 at 8:39pm

Hey Bradish

We know what you're going through and the good news is it doesn't need to be that way...

For starters, see your PCP for a lab test of your 25(OH)D. This is the serum level metabolite of vitamin D3 that's used to measure its status.

It's a very safe bet you are vitamin D3 deficient if you haven't taken any vitamin D3 for more than a few months and that deficiency is contributing to the frequency, severity and duration of your CH.

It's a safe bet you're also having an allergic reaction and when that happens, you get a flood of histamine that triggers a cascade of CGRP that makes just about every CH preventative including vitamin D3 and verapamil ineffective in preventing CH.

The first solution is to restart the anti-inflammatory regimen then start a 5 day to 1 week course of Benadryl (Diphenhydramin HCL) at 25 mg every 12 hours.

Better than 83% of the 215 CHers who started this regimen and reported results in the online survey have experienced a significant reduction in the frequency, severity and duration of their CH in the first 30 days after start of regimen. Nearly 60% report being CH pain free..

I suggest you download the latest version of the anti-inflammatory regimen CH preventative treatment protocol at the following link. Be sure to share a copy with your PCP or neurologist when you go in for the 25(OH)D lab test. That way you’re both singing from the same sheet music. Henry Lahore posted this treatment protocol on his VitaminDWiki website for me on 21 January, 2017. As of this morning, the 16th of July, 2320 copies have been downloaded.

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Take care and please keep us posted.

V/R, Batch

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bradish

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Florida
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Re: Cluster won't go away - help
Reply #4 - Jul 27^th, 2017 at 6:20pm

I started the vitamin d regimen again with magnesium and it took my headaches away for almost a week and now 2 nights I. A row I've had them back again. I also have swelling of the calfs snd ankles. I feel like I'm retaining water too. Could this be because of the 720mg of verapamil I'm on. One thing after another. I just want to feel normal again.

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Batch

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Bremerton, WA
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Re: Cluster won't go away - help
Reply #5 - Jul 27^th, 2017 at 7:01pm

Hey Bradish,

It's not uncommon for CHers to have a few days pain free after starting this regimen then have the CH beast come back jumping ugly... The best thing to do is stick with the vitamin D3 loading schedule of 50,000 IU/day for a total of 12 days then back off to 15,000 IU/day vitamin D3. It's also time to give Benadryl (Diphenhydramine HCL) a try. I've found Children's Benadryl Liquid (Diphenhydramine HCL) works as well if not better than the 25 mg Benadryl tablets.

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Take 12.5 mg, (5 mL in the measuring cap) and hold it in your mouth, swirling it around under your tongue and between cheeks and gums for 3 to 4 minutes. This sublingual application gets the Diphenhydramine directly into the bloodstream through the mucus membranes in the mouth.

As far as the puffy ankles go, try to sleep with your feet elevated above your head and walk or jog a half mile a day. This will help a great deal.

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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bradish

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Posts: 33
Florida
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Re: Cluster won't go away - help
Reply #6 - Jul 27^th, 2017 at 9:01pm

I've been taking 20,000 of vitamin D3. I will ant my dosage up how long do I have to use Benadryl for? Is this normal for the swelling of the ankles? I have been taking 720 mg of verapamil and was thinking of cutting my dosage down because of the swelling. What are your thoughts of backing down on verapamil even though I still am having headaches?

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Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3704
Bremerton, WA
Gender: male

Re: Cluster won't go away - help
Reply #7 - Jul 27^th, 2017 at 9:50pm

Hey Bradish,

Good question... I'd take the Children's liquid Benadry (Diphenhydramine HCL) each night for at least a week then back off and see what happens.

When you're done with the 12-day vitamin D3 loading schedule, drop back to 20,000 IU/day for a week then down to 15,000 IU/day.

Lowering the verapamil dose might be a good idea as swelling ankles or feet are verapamil side effects... Tell your doctor about the swelling and that you want to lower the dose.

Are you taking any other Rx meds?

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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bradish

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Posts: 33
Florida
Gender: female

Re: Cluster won't go away - help
Reply #8 - Jul 27^th, 2017 at 9:59pm

I will try the Benadryl in the higher dosage of vitamin D. I switch doctors after I moved to Florida so this new doctor doesn't know anything about clusters. Therefore I dosed myself with the verapamil. Lol i've been on verapamil for over 10 years so pretty comfortable with deciding how much I need. My previous doctor was pretty good about letting me decide what I needed.

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Batch

CH.com Alumnus

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Control The Beast With
O2 & D3 You Must

Posts: 3704
Bremerton, WA
Gender: male

Re: Cluster won't go away - help
Reply #9 - Jul 28^th, 2017 at 9:23am

Hey Bradish,

If your new doctor is not up to speed on CH or CH interventions, take him a copy of the CH preventative treatment protocol at the link below and ask for labs of your serum 25(OH)D, total calcium and PTH when you've completed the 12-Day vitamin D3 loading schedule. That way you'll both be singing from the same sheet music... and we'll have the data we need to determine an optimum maintenance dose of vitamin D3.

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

or

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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