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Chronic has been woooonderful (Read 3210 times)

Mike Bernardo

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Chronic has been woooonderful
Feb 25^th, 2013 at 1:27pm

14 months into chronic, and it has been more variable than anything I have ever experienced. I've had 3 remissions, about 2 weeks each. 1 in the spring, one in the fall, and 1 about a month ago. The headaches come on at all times of the day or night, now they come in varying intensities. O2/workouts help, but only briefly. I'm on 300mg Topamax currently, waiting for visit to HA center next month (can't wait) for my first visit, a 5 hour session to get the full workup, and see what they want to do for me. For a while, the 200mg topamax therapy was enough, with low purine, no alcohol, blah, blah blah. But things change, I suppose. Crazy how this thing just keeps morphing and finding new ways to keep us on our toes.

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Balanchine

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Re: Chronic has been woooonderful
Reply #1 - Feb 26^th, 2013 at 12:02pm

Mike - jeesh, what an ordeal. You have an amazing outlook though and a great frame of mind that I'm sure is helping you through it. Assume you've looked into the vitamin regime posted under the Medications etc. forum (?) I believe it to be helping me, though of course I'm also taking Topomax in a far smaller dose than yours for my episodic attacks.

To be sure ours is a sly, sly Beast.
David

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Mike Bernardo CH.com Veteran Offline I Love CH.com! Posts: 231 Chesterfield, NJ Gender:	Re: Chronic has been woooonderful Reply #2 - Feb 27^th, 2013 at 4:25am David, yes I'm on 10,000 IU of D. My D levels came up dramatically last year. Funny that after each "fix" another thing comes up to break my head again. Each tweak helps ease the symptoms. Even low purine worked for a few months. Then the beast arose again.
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wimsey1

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Re: Chronic has been woooonderful
Reply #3 - Feb 27^th, 2013 at 9:02am

Mike, I know exactly how frustrating chronic can be. I am also and have been for years. I did experience high and low cycles even while chronic, and my attacks came with great regularity, unlike yours which seem to be all over the place.

The tried and true standby's leave you wanting something more effective, and so I began looking at the more exotic alternatives along with my neuro. Fortunately, I didn't have to go there. For some inexplicable reason a simple ONB kicked me into a remission that has lasted since August. Don't know why, but I'll take it. I guess my point is, try not to give in (too long or too often) to the depression that comes with unrelenting pain. Fight. And if necessary, retry some of the tools that either stopped working or didn't work before.

You take care, my brother. God bless. lance

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chopmyheadoff

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Re: Chronic has been woooonderful
Reply #4 - Mar 1^st, 2013 at 12:27pm

I feel for you dood and i know what your going through. I was chronic for over 10 years in much the same way you describe - no pattern atall, they just ravished (right word?) me lol ..
I did a pred taper about a year ago and havent been hit since ....
Until last week Undecided

so i guess well see how i go from here .. forgot how much the buggers hurt ..

thoughts with you

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ClusterEd CH.com Newbie Offline oh... you've got a headache? lol! please... Posts: 18 lena, IL Gender:	Re: Chronic has been woooonderful Reply #5 - Mar 4^th, 2013 at 7:06pm Hi guy, I'm currently in 9 mo. of chronic and am looking into occipital nerve stimulator or deep brain stimulation. I am on Verapamil, Clonazepam, Welbutrin, Neurontin, and currently in the hospital and on 5 mg of oxycodone when it strikes because they are not short lasting and O2 doesn't work. Any suggestions?
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Chronic has been woooonderful Reply #6 - Mar 4^th, 2013 at 7:35pm Here's a suggestion: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Guiseppi

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Re: Chronic has been woooonderful
Reply #7 - Mar 4^th, 2013 at 8:02pm

What Brew said.....:

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Not trying this regimen is intentionally seeking to avoid relief. It's really that freaking good!!! Wink

Joe

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

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ClusterEd CH.com Newbie Offline oh... you've got a headache? lol! please... Posts: 18 lena, IL Gender:	Re: Chronic has been woooonderful Reply #8 - Mar 4^th, 2013 at 9:22pm Batch already suggested and had been tried. I'm going for neurosurgery at the point....
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Marc

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Re: Chronic has been woooonderful
Reply #9 - Mar 11^th, 2013 at 8:09am

ClusterEd wrote on Mar 4^th, 2013 at 7:06pm:

Hi guy,

I'm currently in 9 mo. of chronic and am looking into occipital nerve stimulator or deep brain stimulation.

I am on Verapamil, Clonazepam, Welbutrin, Neurontin, and currently in the hospital and on 5 mg of oxycodone when it strikes because they are not short lasting and O2 doesn't work.

Any suggestions?

I just have to ask: have you tried REALLY high flow O2? In looking at your posts, I see low flow like 15 lpm and medium flow rates like 25 lpm that won't touch my CH's either. For me, 45-60 liter per minute made life worth living again. It's hard hard work to sustain that breathing rate for several minutes - but it works.

NO, it's not a cure.
NO, it doesn't stop the next one from coming.
YES, it stops me from having true K9 to K10 hits so that I could keep living - and finding a long term solution.

Now, after 14 years of such incredible agony, the simple Vitamin D approach with occasional LSA doses from Rivea corymbosa seeds, has my 9500 liter oxygen gathering dust. No more testing new drug cocktails, no more wondering of life is even worth it.......

Sure, once in awhile I have to slam down a Monster energy drink, and hit the tank. But that's becoming increasingly more rare.

Marc

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Chronic has been woooonderful Reply #10 - Mar 11^th, 2013 at 9:55am Quote: Batch already suggested and had been tried. Tried how? How long? What level of intake? What were your serum 25(OH)D levels?
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Chad

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Re: Chronic has been woooonderful
Reply #11 - Mar 12^th, 2013 at 10:09am

Brew wrote on Mar 11^th, 2013 at 9:55am:

Tried how? How long? What level of intake? What were your serum 25(OH)D levels?

Heck Brew, my serum level was at 34 when I had it tested last summer and I have been PF for over a year. My 1 year revisit of the beast never came. Couple shadows here and there, but no need for O2. I don't get long CH cylces like most do here and I have even asked Batch that being below the 60-110 range if it's actually working for me. I'll just continue taking D3 with the calcium citrate, magenesium and even B12. BTW, I take anywhere from 2000-5000 I.U./day. I am a runner and had joint pain so I keep my intake lower than most. D3 can cause joint pain.

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

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NotbeatingmeSA

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Re: Chronic has been woooonderful
Reply #12 - Apr 10^th, 2013 at 4:31pm

I have watched this forum on and off for years now. Turned chronic about 18months ago and have previously tried the D3 regime without success. I am now considering again but how would one suggest I manage the calcium as I am on maximum dose of verapamil 3 times a day? I live in South Africa and generally get a lot of sun, perhaps my body is used to D3 and hence it doesnt work - any thoughts?
My 1st nerve block worked for 3 weeks, recent ones do little. Daily clusters, often needing Sumatriptan SC as O2 only works if I catch it when the nostril symptoms are felt. If woken by it then injection is only answer.
Anybody experience long stints of driving (hour plus) or watching TV or a movie as triggers?
Not keen on Lithium, scared of side effects as I run a company and am a single parent.
Sometimes want to just stop the drugs and fight it but doubt iI would be able to manage the pain. Perhaps its worth trying a fight without drugs and beating the bastard?
Thanks( actually feel a wee bit better now)
Sheldon

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Chronic has been woooonderful
Reply #13 - Apr 11^th, 2013 at 3:06am

Are you just using the D3 or are you taking the rest of the "recipe" too, like the fish oil? That might affect things, otherwise give Batch a PM and he'll try to figure things out.

I've heard several people mention that using a PC can be a trigger, so it isn't much different to watching TV or a movie.

Don't get too scared about lithium. Quite a few people have used it with great success, just a matter of finding the right dose and monitoring it.

There are people who do just dump all the drugs and just get on with it, but that is a choice you need to make balancing out the advantages and disadvantages of everything.

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NotbeatingmeSA

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Re: Chronic has been woooonderful
Reply #14 - Apr 11^th, 2013 at 3:26am

I tried the whole lot, fish oil, calcium ,etc but that was over a year ago so going to try again. Multiple daily attacks and lack of sleep have me going mad !!! Have to work out how to adjust Verapamil and Calcium dosages to prevent one negating the other.
My concern with Lithium is mental impact - and the fact that I am opposed to drugs, especially if they can directly interfere with ones psyche.
My neuro thinks I'll bump myself off without medication, he's lost past patients so perhaps he's just weary !!!
BTW, tried a Red Bull when I got woken up last night - it worked

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Callico

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Re: Chronic has been woooonderful
Reply #15 - Apr 11^th, 2013 at 7:51am

I'm one of the "failures" on the D3 regimen. HOWEVER, I started taking it at 25000 IU for several weeks, (long enough to give my Dr hissy fits) until I had my number up to 146. Since that time I've lowered my dose to 15,000IU/day and I'm pretty much plateau'ed with only 3-4 low level hits a day. I'm more than happy with the way things are. It's the best I've been since I went chronic about 10 yrs ago. Other than that I'm off all medication for CH, and I feel the best I have in some time. Every once in a while I have one sneak through if I miss a dose, but in general, life is good.

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

; . I am convinced Vitamin M is the most effective treatment available. Due to law enforcement in my family I'm a bit handcuffed (pun intended), but from all I've talked with I'm sold on the treatment.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Vasco Maria CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Chronic has been woooonderful Reply #16 - Apr 12^th, 2013 at 6:00am yes ,its ok
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Vasco Maria CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Chronic has been woooonderful Reply #17 - Apr 12^th, 2013 at 6:01am good
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Vasco Maria CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Chronic has been woooonderful Reply #18 - Apr 12^th, 2013 at 6:01am yeah
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Vasco Maria CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Chronic has been woooonderful Reply #19 - Apr 12^th, 2013 at 6:02am yes
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Mike Bernardo CH.com Veteran Offline I Love CH.com! Posts: 231 Chesterfield, NJ Gender:	Re: Chronic has been woooonderful Reply #20 - Apr 13^th, 2013 at 11:57am Lithium worked for me. Only reason I had to stop was the issues with electrolytes as I'm on a diuretic and couldn't go off of it.
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Batch

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Re: Chronic has been woooonderful
Reply #21 - Apr 13^th, 2013 at 7:30pm

Hey NotbeatingmeSA,

Although Johannesburg, SA is clearly in the sun-belt along with Hawaii, South Texas and Florida here in the US, you still need around 20 minutes a day out in the mid day sun clad in a bathing suit without sunblock to take in the equivalent of 10,000 to 15,000 IU/day supplemental vitamin D3.

During your winter months that time doubles... Walking around in short sleeves and shorts is better than no sun at all, but now your looking at two to three hours daily exposure to build sufficient cutaneous vitamin D3.

There's also no worry about too much vitamin D3 if you're supplementing with 10,000 IU/day vitamin D3 and spending a lot of time in the sun. As the body makes vitamin D3 it also has built-in mechanisms to control its production...

In other words, if your serum concentration of vitamin D3 and 25(OH)D are elevated to the level needed to prevent cluster headache, your skin down-regulates vitamin D3 production...

Regarding restarting the anti-inflammatory regimen... see your PCP to get the lab test for 25(OH)D and restart it. The verapamil - calcium interaction although problematic, should not be a show stopper... Just skip the calcium but take the rest of the vitamin D3 cofactors: magnesium, zinc, boron and vitamin A.

As long as you're eating well balanced meals, you're likely getting a sufficient dietary intake of calcium. Calcium and vitamin K2 (MK-7) are not essential to obtain a pain free response from this regimen... Both are added insurance to prevent bone mineral density loss...

That's not to say skip the vitamin K2 (MK-7) completely... There's sufficient medical evidence from several RCTs indicating vitamin K2 (MK-7) plays an important role in preventing calcium deposits in soft tissues and arteries.

Take care and please keep us posted.

V/R, Batch

« Last Edit: Apr 13^th, 2013 at 7:31pm 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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