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idorko

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2 weeks, tips?
Oct 13^th, 2013 at 9:57pm

I've got 2 weeks before I can get approval for a more experimental treatment.
I've recently come off lithium because it did bad things to my brain.
I'm on gabapentin and tizanidine as my only preventitive currently.
Help me get along for these next two weeks with just imitrex, oxygen with any tips or tricks.
I don't sleep well at night and during the day I'm a mess. I can't concentrate or think.
Shadows are persistent. 2-6 headaches a day.

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: 2 weeks, tips? Reply #1 - Oct 14^th, 2013 at 1:26am Is a prednisone taper for the 2 weeks an option?
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Batch

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Re: 2 weeks, tips?
Reply #2 - Oct 14^th, 2013 at 2:40am

Idorko,

It appears you've tried nearly everything but vitamin D3... Have you had the lab test for your 25(OH)D?

Two weeks on 10,000 IU/day vitamin D3, 1000 mg/day Omega-3 Fish Oil and the rest of the vitamin D3 cofactors could buy you an 80% probability of a significant reduction in the frequency, severity and duration of your CH... It would also buy you a 60% chance of a pain free response...

Talk to your PCP or neurologist about the 25(OH)D lab test and the complete anti-inflammatory regimen... The "How To" is at the following link:

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

or

It seems a shame to go into a more invasive line of medication and not try vitamin D3 when it's so effective, inexpensive and healthy for you...

You might find that oxygen therapy at flow rates that support hyperventilation (25-40 liters/min) blows away your shadows...

If you're stuck with only a 15 liter/minute regulator, hyperventilate with room air for 4 to 5 very deep breaths exhaling forcefully until your exhaled breath makes a wheezing sound for a few seconds and then take a lung full of 100% oxygen.

This is a work around that is also very effective in aborting CH and shadows (they're also a CH).

Take care,

V/R, Batch

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« Last Edit: Oct 14^th, 2013 at 2:42am 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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idorko

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Re: 2 weeks, tips?
Reply #3 - Oct 14^th, 2013 at 9:11am

Batch I get my D3 and B12 tested every 2 months and my D3 hovers between high 50s and low 60s. It was 24 last year, so I've made quite the improvement all things considered.
I'm currently on 4000 IU of D3, 2000 of B12, and 1G of Fish Oil
If for whatever reason this next option doesn't work, I'll give your treatment regimen a shot, but as far as I can tell, I'm within the normal range.

Mike, that's what I'm thinking, but those usually make it so I can't sleep, which is already an issue.

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Mike NZ

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Re: 2 weeks, tips?
Reply #4 - Oct 15^th, 2013 at 4:46am

idorko wrote on Oct 14^th, 2013 at 9:11am:

Mike, that's what I'm thinking, but those usually make it so I can't sleep, which is already an issue.

Less sleep and no pain compared to more sleep and pain. The choice is yours to weigh up which works best for you.

Perhaps some melatonin might help with the sleep?

However you don't want to be trying too many things all at once just before trying something new in two weeks time. I'd discuss it with your doctor(s).

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idorko

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Re: 2 weeks, tips?
Reply #5 - Oct 15^th, 2013 at 5:11am

Mike NZ wrote on Oct 15^th, 2013 at 4:46am:

idorko wrote on Oct 14^th, 2013 at 9:11am:

Mike, that's what I'm thinking, but those usually make it so I can't sleep, which is already an issue.

Less sleep and no pain compared to more sleep and pain. The choice is yours to weigh up which works best for you.

Perhaps some melatonin might help with the sleep?

However you don't want to be trying too many things all at once just before trying something new in two weeks time. I'd discuss it with your doctor(s).

I already take a shitload of melatonin to ward off night time headaches.
At this point I think almost no sleep for a few months is causing more pain.
I went to see my PCP and she gave me a perscription for Lunesta and 80mg of Prednisone to try if I decided to go that route.
What's the usual taper from 80? Decrease by 20 every 4 days, right? It's been a while

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Batch

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Re: 2 weeks, tips?
Reply #6 - Oct 15^th, 2013 at 11:29am

Hey Idorko,

Thanks for the response... Although a 25(OH)D serum concentration in the low 60's may be "normal" for some folks... it's not high enough for cluster headache sufferers... You need to keep it up around 85 ng/mL to have any lasting CH preventative effects...

A 25(OH)D serum concentration of 85 ng/mL is going to take a daily vitamin D3 intake of at least 10,000 IU/day.

That may sound like a lot... it isn't. You skin can make that much vitamin D3 in less than ten minutes when exposed to the UV-B in noon day sun... clad in a bathing suit without any sun block...

My wife has been taking 15,000 IU/day since 2010 and loves it... Her 25(OH)D rarely gets above 95 ng/mL... She also kicked the heck out of 75 last December... Go figure...

You've got to get your 25(OH)D over 200 ng/mL to even approach the lowest estimated threshold for vitamin D3 intoxication. Most vitamin D3 experts say the lower threshold for a toxic reaction is actually well North of 300 ng/mL and more like 400 ng/mL so jacking your 25(OH)D up to 85 ng/mL is no big 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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Mike NZ

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Re: 2 weeks, tips?
Reply #7 - Oct 16^th, 2013 at 4:23am

idorko wrote on Oct 15^th, 2013 at 5:11am:

I went to see my PCP and she gave me a perscription for Lunesta and 80mg of Prednisone to try if I decided to go that route.
What's the usual taper from 80? Decrease by 20 every 4 days, right? It's been a while

Try something like 80,80,80,80,70,60,50,40,30,20,10 which will give you 11 days or something similar, slowing down the rate of decrease to make the taper longer.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 2 weeks, tips? Reply #8 - Oct 16^th, 2013 at 6:08pm Hi idorko, Having suffered CH's for 43yrs prior to Sping 2012, when i started the vitamin D3 Regime and no CH's since. So maybe give it a go, you have nothing to lose, but like me and others plenty to gain by becoming pain free. Hoppy.
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Tiffany.S

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Re: 2 weeks, tips?
Reply #9 - Oct 21^st, 2013 at 8:05pm

I am new on this site, so am experimenting myself...This is my 8th week into this cycle, have tried EVERYTHING (topamax, amitriptiline, flunarizine, and many others with horrible side effects...for me) I do understand the lack of sleep and the pain is to climb the walls, but what I am doing to "cope" with all of this until I get some Imitrex or Zomig from another country is ICE PACKS, 02, and at the first sign of a hit, chug a red bull and I take a Sumax.... helps to deal with it a bit. Am getting the things I need for the VIT D3 regime, (they don't sell some things in my country)

so ....patience and sending you good vibes!!

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Tiffany.S CH.com Junior Offline I Love CH.com! Posts: 47 La Paz, Bolivia Gender:	Re: 2 weeks, tips? Reply #10 - Oct 21^st, 2013 at 8:06pm Ice pack for the shadows does work for me...hope it helps for you
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idorko

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Re: 2 weeks, tips?
Reply #11 - Oct 21^st, 2013 at 8:09pm

Tiffany.S wrote on Oct 21^st, 2013 at 8:05pm:

I am new on this site, so am experimenting myself...This is my 8th week into this cycle, have tried EVERYTHING (topamax, amitriptiline, flunarizine, and many others with horrible side effects...for me) I do understand the lack of sleep and the pain is to climb the walls, but what I am doing to "cope" with all of this until I get some Imitrex or Zomig from another country is ICE PACKS, 02, and at the first sign of a hit, chug a red bull and I take a Sumax.... helps to deal with it a bit. Am getting the things I need for the VIT D3 regime, (they don't sell some things in my country)

so ....patience and sending you good vibes!!

Man, Zomig makes me super depressed.
Ice packs have never done a thing from me. They just melt pretty quickly after touching the side of my face
and redbull/energy drinks leave me feeling terrible.
O2 is killing the attacks as they come though.

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Hoppy

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Re: 2 weeks, tips?
Reply #12 - Oct 22^nd, 2013 at 2:05am

idorko wrote,

Ice packs have never done a thing from me. They just melt pretty quickly after touching the side of my face.

When i felt the first sign of an attack on i'ts way,
i would take a 50mg tab of Imigran with a very
strong cup of coffee.
I would then get a block of ice from the freezer wrap
it in a handkerchief and place it on the back of
my neck and let it soak in the ice. I found this
would abort the Smiley

within 15-20 mins.

Hoppy.

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« Last Edit: Oct 22^nd, 2013 at 2:08am by Hoppy »

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 2 weeks, tips? Reply #13 - Oct 22^nd, 2013 at 2:18am Hi Tiffany I get my vitamins on line from IHERB.COM. I use natural Factors, they are a good brand. Hoppy.
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idorko

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Re: 2 weeks, tips?
Reply #14 - Oct 22^nd, 2013 at 5:29am

Hoppy wrote on Oct 22^nd, 2013 at 2:05am:

idorko wrote,

Ice packs have never done a thing from me. They just melt pretty quickly after touching the side of my face.

When i felt the first sign of an attack on i'ts way,
i would take a 50mg tab of Imigran with a very
strong cup of coffee.
I would then get a block of ice from the freezer wrap
it in a handkerchief and place it on the back of
my neck and let it soak in the ice. I found this
would abort the Smiley

within 15-20 mins.

Hoppy.

I have O2, Imitrex Intranasal, thanks.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 2 weeks, tips? Reply #15 - Oct 22^nd, 2013 at 6:29am Hi idorko, Their is no way in the world i would have injected myself in all the years i suffered CH's. I would rather just ride out the really nasty ones than cause future health issues with all those nasty drugs.This is just my opinion. Now i'm on the vitamin D3 Regime and all's going well. Cheers, Hoppy.
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Tiffany.S

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Re: 2 weeks, tips?
Reply #16 - Oct 22^nd, 2013 at 9:47am

I agree with Hoppy...the terrible thing about soooooooooooooooooooooooooooooooooooooo many RX drugs is that in the end, they can cause horrible side effects. I am 31 and have tried it all, but have decided to go down the natural path...my CH cycle is pretty bad this time around, but I will not give up and not give in to whatever they want to do with me anymore...after 7 weeks of topamax, amitriptiline, flunarizine, paxil...have decided to stick to the 02, start the vit 3 regime and getting my bearings back together. Unfortunately, all these rx drugs do leave you ( in my case...completely out of it)

So hang in there, and keep on trying diferent tips...maybe a stroooooooooooooooooooong cold cup of coffee? try the ice pack in diferent places.

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idorko CH.com Veteran Offline I Love CH.com! Posts: 208 Central Maine Gender:	Re: 2 weeks, tips? Reply #17 - Oct 22^nd, 2013 at 11:06am There's no real evidence to suggest that imitrex does longterm damage and I'm going to give the D3 regime a shot if my next line of treatment doesn't work.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 2 weeks, tips? Reply #18 - Oct 22^nd, 2013 at 8:05pm Hi idorko, I'm still wondering why your dragging your feet when it comes to giving the vitamin D3 regime a go, when it has a 80% success rate of becoming pain free myself included. Hoppy.
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idorko CH.com Veteran Offline I Love CH.com! Posts: 208 Central Maine Gender:	Re: 2 weeks, tips? Reply #19 - Oct 22^nd, 2013 at 8:17pm not so much dragging my feet as I am more likely to try something that I'm already lined up for. If it doesn't work, I'll give the d3 regimen a shot
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 2 weeks, tips? Reply #20 - Oct 22^nd, 2013 at 11:21pm Hi idorko, Just curious, what treatment are you lined up for? Cheers, Hoppy.
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