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New Member. Demon going on 20 years (Read 5521 times)

DerikPelser

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New Member. Demon going on 20 years
Mar 11^th, 2016 at 2:06am

Hello All.
New to the site, knew about this site for a few years but never registered.

I have been having attacks for the better part of 20 years. And unlike the usual age when it starts, I was barley 12 when mine started.

Ive been though it all, glasses, braces, wisdom teeth taken out, start exercising, stopped exercising and and and....

In 2014 on my 30th b-day, I even gone so far and getting part of my facial nerve removed. And you guessed it, there back. One thing I can say though, they are not as severe as before.

I'm not 32 and currently in a cycle. Trying to live my life and bare the pain. I learned not to beat my head anymore and scream out uncontrollably.

But the hardest part of it all is to get people to understand.
If one more person tell me to go and lay down it the dark, I'm going to give them my CH.(I wish)

However I'm enjoying live every day and have a lovely wive and 12 month old daughter that keeps me going.

Regards
Derik Pelser.
Jo-Burg
RSA

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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: New Member. Demon going on 20 years Reply #1 - Mar 11^th, 2016 at 4:36am It"s under the medication page 123 Days PF And I Think I know Why Mark.
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DerikPelser CH.com Newbie Offline I Love CH.com! Posts: 13	Re: New Member. Demon going on 20 years Reply #2 - Mar 11^th, 2016 at 4:37am Sorry @Mark - Not following your reply.
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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: New Member. Demon going on 20 years Reply #3 - Mar 11^th, 2016 at 4:45am go to medication and treatment topic you will see it Mark
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AussieBrian

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CH - It's all in your
head!

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Cairns, Qld, Australia
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Re: New Member. Demon going on 20 years
Reply #4 - Mar 11^th, 2016 at 4:57am

DerikPelser wrote on Mar 11^th, 2016 at 2:06am:

...But the hardest part of it all is to get people to understand.

If one more person tell me to go and lay down it the dark, I'm going to give them my CH.(I wish)

G'day Derik, welcome, and you'll never believe how close that is to our heart.

It was a while back now but there was a thread on exactly that subject, it went on for ages, and was nothing short of hilarious! Really took away the feeling of loneliness that comes when you're neither believed nor understood.

If I can find it I'll send you the link, because it really is good medicine, but in the meantime just make yourself at home and let us know how best we can help.

Full steam ahead and damn the torpedoes,

Brian down under.

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Peter510

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Don't give out... But
don't give in.

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Wexford. Ireland
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Re: New Member. Demon going on 20 years
Reply #5 - Mar 11^th, 2016 at 5:02am

Derik,

Mark is referring to the thread on Vitamin D3, which a lot of us use to stay pain free. It's in the Medications and Treatments section under "123 days pain free.....".

Well worth reading and asking questions.

Anyway Derik, you're very welcome. Glad you're " out of the closet" so to speak.

What treatments are you currently on? Preventatives, abortives.

There's a wealth of experience and support here for you to tap into, so keep posting.

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

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DerikPelser CH.com Newbie Offline I Love CH.com! Posts: 13	Re: New Member. Demon going on 20 years Reply #6 - Mar 11^th, 2016 at 5:11am At the moment. Nothing. My doc mailed me a script for Maxalt to stop the attacks when they happen. I'm just grown so tired of the same the regime, I'm now taking it day by day with ice pack in the fridge. However I read the into on the 123day... Definitely going to try the D3 and omega.
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DerikPelser CH.com Newbie Offline I Love CH.com! Posts: 13	Re: New Member. Demon going on 20 years Reply #7 - Mar 11^th, 2016 at 5:15am Oh. When I explain CH to people who don't understand, I tell the the following. Take your index finger and push gently between you upper eye and eyebrow. Increase pressure slowly till you can't take the pain anymore. Now imagine then for 40 minutes +.
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Peter510

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Don't give out... But
don't give in.

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Re: New Member. Demon going on 20 years
Reply #8 - Mar 11^th, 2016 at 5:24am

Yeah. We all have our way of describing it. Mine is a hot sword being slowly pushed through the left side of my head till it reaches my jaw.

Start the D3 straight away, but use all the elements Batch recommends. Here is a photo of the current products recommended. You can get them all on-line in sites like Iherb.com or Biovea.com.

« Last Edit: Mar 11^th, 2016 at 5:25am by Peter510 »

You don't stop laughing because you grow old....You grow old because you stop laughing.

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Mark Olson CH.com Veteran Offline I Love CH.com! Posts: 142 San Jose, CA Gender:	Re: New Member. Demon going on 20 years Reply #9 - Mar 11^th, 2016 at 12:35pm I tell people to do a Youtube search for cluster headaches and watch someone going through one. I HATE it when people think CH is like migraine.
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DerikPelser CH.com Newbie Offline I Love CH.com! Posts: 13	Re: New Member. Demon going on 20 years Reply #10 - Mar 12^th, 2016 at 10:57am Hi all. So I got the first 3 vitamins as on the picture today. However as Murphy would have it I got hit with a 6 about 15 minutes after I took it. My question. How long before I will notice a change. Thanks
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: New Member. Demon going on 20 years Reply #11 - Mar 12^th, 2016 at 12:00pm Derik, It differs with everyone. Some get benefits within days, others weeks and with some it's more gradual. You may be one of the lucky ones but if not, persevere. It will be worth it. Incidentally, my surname is Murphy, so of course, with me it took a couple of months. Stick with it. Peter.
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DerikPelser CH.com Newbie Offline I Love CH.com! Posts: 13	Re: New Member. Demon going on 20 years Reply #12 - Mar 29^th, 2016 at 9:28am Hi all. So the CH are not subsiding. My doc gave me a Lidocane spray (burns like hell)to try and some more meds including lithium. If after a week I'm not better were going to talk operation again.
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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: New Member. Demon going on 20 years
Reply #13 - Mar 29^th, 2016 at 10:06am

Hey Derik,

Sorry you're having such a rough time. We know what that's like...

Check your PM InBox in the upper left corner of this screen below the date. I've left you some additional information on the anti-inflammatory regimen. Click on the bold text that says "you have one message
"

Do you have oxygen available as an abortive? If used properly at flow rates that support hyperventilation, it is very effective with an average abort time of 7 minutes to a pain free state.

You asked about response times for the anti-inflammatory regimen. The following chart illustrates the latest data from the online survey of CHers taking this regimen to prevent their CH.

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

As you can see, some CHers take longer than others. Knowing your 25(OH)D serum concentration can be very helpful in determining how long it will take for a response to this regimen.

Take care, hang in there and please keep us posted.

V/R, Batch

« Last Edit: Mar 29^th, 2016 at 10:16am by Batch »

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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Mark Olson

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Re: New Member. Demon going on 20 years
Reply #14 - Mar 29^th, 2016 at 1:11pm

I am almost afraid to reply for fear I will jinx myself, but I normally get hit at the solstices. I have had a few minor shadows over the past few weeks, but so far, no hits.

I have been on the D3 regimen (plus a low dose of Verapamil) for a little over a year, and my last two episodes were short and mild. Knock on wood, this one will just be a few minor shadows.

It does seem to take some time to get the serum levels up. I think a blood test is a good idea just so you know where you are.

Hang in there.

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Mike NZ

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Oxygen rocks! D3 too!

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Re: New Member. Demon going on 20 years
Reply #15 - Mar 30^th, 2016 at 1:02am

DerikPelser wrote on Mar 29^th, 2016 at 9:28am:

So the CH are not subsiding.
My doc gave me a Lidocane spray (burns like hell)to try and some more meds including lithium.

If after a week I'm not better were going to talk operation again.

Most CH preventive medication can take 7-10 days to build up an an effective dose, so giving yourself just a week before you are going to talk operation again is not giving it enough time by far.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: New Member. Demon going on 20 years Reply #16 - Mar 30^th, 2016 at 5:02am What Mike said, but especially for the D3 regimen. Are you taking everything that Batch recommends, in the appropriate dosages? Peter.
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DerikPelser

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Re: New Member. Demon going on 20 years
Reply #17 - Mar 30^th, 2016 at 3:38pm

Hi all.

Just read one of the mails. As for the D3 Batch, no does not seem that way. Been taking 5000 (1 pil) a day. (thanks at Batch) with the omega and magnesium.

Well the lidocaine seems to be doing the trick. Burns for about 20 seconds and then the numbing effect takes place. Pain free for 48 hours. Longest I've been since the new cycle.

Sorry I also had to mention, I am on Verapamil the last 2 months. The doc now doubled my dosage. with 12x 5mg steroids a day for the next week.

As for the oxygen, yes we do have but in RSA its dam expensive its about 20$ (US) for a 2L bottle. So not sustainable. To give my fishtank C02 injection, a 2L bottle is about 1$ (US). Meds in RSA in general is very expensive. Tripan injection avg around 20$ (US) for one. And this is all cash. So you can think one can go broke quickly.

As for the opp. The doc explained they go in via the neck up to the nerves, and then via laser, burn away the nerves. And this should last about 5 - 6 years. Its an in and out procedure and back at work in 2 - 3 days. Not like the full on brain opp i had first time around where I was out of action for 2 months.

So my homework is to go study the mail @batch sent me

Thanks for the support and advice.

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DerikPelser

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Re: New Member. Demon going on 20 years
Reply #18 - Mar 30^th, 2016 at 3:49pm

Question.

Sugar and computer games...

Love my chocolates and gas drinks like Coke and RedBull. I have cut out all sweets and gas drinks baring the RedBull. I don't even drink sugar in my tea. And believe me, I've had enough water with lemon slices. I want a proper glass of Coke.

Then I'm also a gamer. I heaved touched a game the last 3 weeks.

Is doing this help full at all or am I just bluffing myself?

Regards

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: New Member. Demon going on 20 years Reply #19 - Mar 30^th, 2016 at 4:22pm My opinion? You're fooling yourself. Get on the FULL D3 regimen as soon as possible. That is 10,000 iu D3 per day and ALL the cofactors as recommended by Batch. What's stopping you ???????? Peter.
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Batch

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Bremerton, WA
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Re: New Member. Demon going on 20 years
Reply #20 - Mar 30^th, 2016 at 9:03pm

Hey Derik,

I know the feeling... I cut out sugar and sweets over five years ago... but I refuse to give up my Diet Coke... and Rum...

Stick with the 2-Week vitamin D3 loading schedule along with the co-factors... I'm confident it will pay off. If you're still getting whacked by next week, don't be afraid to give Diphenhydramine (Benadryl) a try. Allergic reactions are common this time of year and they create a flood of histamine that makes just about every CH intervention less effective...

For reference, allergies can occur at just about any time of year depending on the allergen. 25 to 50 mg of Diphenhydramine prior to bed time should do the trick. Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on brain cells.

Take care and please keep us posted.

V/R, Batch

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DerikPelser CH.com Newbie Offline I Love CH.com! Posts: 13	Re: New Member. Demon going on 20 years Reply #21 - Mar 31^st, 2016 at 9:35am Thanks for all the advice. I have been taking the D3 regimen, however incorrectly. So this morning I took 20 000 of D3 and I feel ok. But will keep you posted.
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DerikPelser CH.com Newbie Offline I Love CH.com! Posts: 13	Re: New Member. Demon going on 20 years Reply #22 - Apr 4^th, 2016 at 2:46am Quick Update So today is day 6 of being pain free. Seems like the meds and D3 are helping.
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