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123 Days PF And I Think I know Why (Read 163641 times)
MarkHW
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Re: 123 Days PF And I Think I know Why
Reply #50 - Feb 21st, 2011 at 3:18pm
 
Hi All, my name is Mark.  I was on the CH boards years ago, but haven't posted in a long time.  My cluster has been doing much better since I moved from Ohio to Austin, Texas.  I even went a little over a year without an attack!

But.. I went to Ohio over the Christmas holidays and by the end of the trip I was in cycle.  Used prednazone to stop it for awhile, but the cycle returned after 2 boughts of steroids.

I was running out of patience and imitrex, so I checked out the site and saw the post on D3 & Fish Oil.  so, I decided to give it a try.  I started on 15000 IU D3 and 3 fish oil tablets (not sure dosage).  The clusters stopped, but I was so nauseous I couldn't get out of bed. 

I cut down to 10,000 IU D3 and 2 fish oil tablets and was better, but still very nauseous.  I then cut to 5,000 IU D3 and 1 fish oil tablet.  I was still nauseous and headaches returned.

After doing some research I cut the fish oil out and went back to 10,000 IU D3.  I'm now headache free again.  I'm considering going up to 15,000 IU of D3 again if need be because the nausea is pretty much gone.

I have both cluster and migraine and the D3 seems to be stopping both!

Thanks for this tip!!  I'll keep you updated on my progress!
Thanks again, Mark
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The clusterhead formerly known as williamsmh.
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Re: 123 Days PF And I Think I know Why
Reply #51 - Feb 21st, 2011 at 3:50pm
 
Mark,
Funny, I'm from Ohio and went to Austin in January for a quick get away and came back with CH's!  (probably didn't help that I was there during one of the coldest spells in years!)
Anyway, I seem to be in remission now.  I too noticed upset stomach from doing more than 2,800 IU fish oil daily.  So I've cut back on the fish oil but but am still doing 12,000 IU vitamin D and that seems to be OK for my stomach.
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Re: 123 Days PF And I Think I know Why
Reply #52 - Feb 25th, 2011 at 12:38am
 
Hi Batch & everyone,

I'd love to try this regimen & just wanted to know when you take your supplements during the day?  Do you take them all at once, or throughout the day? 

Thanks so much!
Lori
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Re: 123 Days PF And I Think I know Why
Reply #53 - Feb 25th, 2011 at 7:17pm
 
Man, the results people seem to be having from this are amazing!

I myself do not have CH, but I do take D3 every day because it is great for the immune system. This is really encouraging! I'd like to hear more updates!  Cheesy
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Re: 123 Days PF And I Think I know Why
Reply #54 - Feb 25th, 2011 at 8:43pm
 
Thanks Lori & Jair
I was just about to bump this thread upward as I think the results that some are getting from this method are to significant to just be forgotten.

I take my sups spread out over the day, Batch will undoubtedly be along soon to fill in what I cant.

Cheers
Barry
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Re: 123 Days PF And I Think I know Why
Reply #55 - Feb 26th, 2011 at 1:24am
 
Thanks all for giving this regimen a try and for chiming in with your results.† I don't think it matters much when you take the Omega 3 Fish Oil and vitamin D3 softgels although taking them with a meal is probably a good idea.†

I take mine all at once in the morning before breakfast with a glass of OJ or cold water followed by a cup of my home roasted coffee.†

I'm brewing a wonderful blend of fresh roasted Colombian Supremo Popayan and Ethiopian Yirgacheffe this week.† I buy the green coffee beans in bulk so the average cost is still slightly under $5/lb for these two cultivars... even with the recent hike in commodity prices.

My coffee roaster is an $18 PopLite air popper from Wally-Mart with a little rabbit mesh to keep the beans from going into orbit so this is a low cost treat that's had Joyce and I hooked for the last 8 years.

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Again, thanks for giving the anti-inflammatory regimen a try and letting us know of your results.

On a related note for the CH'ers who live in Pennsylvania, Southern NY, NJ, DE, Northern VA, Western MD, WV, or Eastern OH, Dr. Todd Rozen is conducting a pilot study of the demand valve method of oxygen inhalation therapy for cluster headache.†

The study opened earlier this month at the Geisinger Center for Clinical Studies (CCS) at their Wyoming Valley facilities located at 1000 East Mountain Blvd, Wilkes Barre, PA† 18711, but the response has been slow.

I realize the drive to the Geisinger CCS may be an inconvenience or show stopper for many of you, but if you're interested, this study will compare the results of oxygen therapy at a flow rate of 15 liters/minute with the new method of aborting cluster headaches administered by oxygen demand valve at respiration rates that support hyperventilation.†

Other than the out of pocket travel expense for two trips for the induction exam and out-brief, the folks at Geisinger will provide everything you'll need at no cost and you walk away with an Rx for oxygen therapy to boot.

The link for this study is listed below:

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If you decide it's not worth your time to participate or you're no longer in cycle, if you know any other CH'ers that live within driving distance from the CCS you think might be interested, give them a call or email...† Any help will do us all a lot of good as we need studies like this to prove oxygen therapy can be highly effective with very short abort times if the flow rate is high enough.† It will also help draw attention to our disorder and that is always a good thing.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #56 - Feb 26th, 2011 at 9:10am
 
As someone who bought his own demand valve I gotta say these kind of trials are critical. If there's any way you can participate please consider doing so. For yourself and for every CH'er who has been told 6 LPM is a high enough flow rate to abort. Angry The demand valve is nothing short of awesome! These kind of studies could one day make it a main stream prescription.

Joe
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Re: 123 Days PF And I Think I know Why
Reply #57 - Feb 26th, 2011 at 11:46am
 
not sure if this relevant, but I found this study interesting in regards to low flow rates for oxygen and its effect on Serotonin levels...

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DG
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Re: 123 Days PF And I Think I know Why
Reply #58 - Feb 27th, 2011 at 12:41pm
 
Interesting study, DG. Thanks for sharing it!
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Re: 123 Days PF And I Think I know Why
Reply #59 - Feb 27th, 2011 at 11:19pm
 
So how are the D3 trials going for you all? I'm really curious about this, I'll be asking for updates, just to give you a heads up. Don't let me become too annoying. Tongue
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Re: 123 Days PF And I Think I know Why
Reply #60 - Feb 28th, 2011 at 5:05pm
 
As posted on the tread I started, I think there is something to Batch's D3 and cal-mag-fish oil. I brought the D3 up to 10,000 for last 3-4 days and last night I slept throught the night 7+ hours without a headache. In my 17 years of cluster headaches when in cycle I have always been hit at night at least once unless I took DHE or the cycle was over. I am only 3 weeks in to this cycle and this is great. No hits at all durring the day. I don't know how much the verapamil is playing part of that.                       Jay
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Re: 123 Days PF And I Think I know Why
Reply #61 - Mar 3rd, 2011 at 7:07pm
 
Bump..
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Re: 123 Days PF And I Think I know Why
Reply #62 - Mar 4th, 2011 at 7:22am
 
Good morning, Batch and all.  So as I posted the neuro had me titrating off verapamil by 40mgs/day every two weeks. I got down to 320mgs and the Beast came back big time...every day, then twice a day and once at night, then 3 times a day...and the same ol' same ol' pattern was reintroducing itself.  So I began upping the dose and have been back to 400mgs/day. But the hits just kept coming. Then I remembered the post on D3, and since there was this jar of soft gels sitting on my window sill...two days I took 10K units and I didn't get a hit all day or night...and yesterday, again 10K units, and hit free again. So I'll do it again today. It beats the pred taper I was thinking about. And I pray it will tame this beast, too. Blessings. lance
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Re: 123 Days PF And I Think I know Why
Reply #63 - Mar 4th, 2011 at 7:53am
 
Lance, I'm thrilled to hear of such great news!  I believe (more like hope)  my cycle has ended but I'm still on the D3 etc... just because I feel way better on it.
Hope it continues to work for you!
-Gary
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Re: 123 Days PF And I Think I know Why
Reply #64 - Mar 4th, 2011 at 8:51am
 
Just thought I would let everyone know I have gone 5 days now without a headache after starting Batches formula. I am only 3 1/2 weeks into this cycle and as I stated before this is just eye opening. Only one mild shadow thurs. morning. Have not had to touch the O2. I even tapered down the verap from 400 to 320. Only other thing I am taking is 9mg melatonin at night. I hope this continues, thanks Batch and everyone for their input!!!!   jay
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Re: 123 Days PF And I Think I know Why
Reply #65 - Mar 4th, 2011 at 10:54am
 
Jay, Lance, Mark, All,

Thank you for keeping us up to speed on your progress with this anti-inflammatory regimen.† This is exactly what I had hoped for and needed to hear.

I've done some research on the magnitude of the placebo effect and there are too few studies that look at it in isolation.† Most look at the placebo effect in context of a comparison with a therapeutic agent.† †It's going to take a gold standard clinical trial (Randomized, Crossover, Double Blind, Placebo Controlled) to quantify the placebo effect with any precision that we may be experiencing with this regimen.

Having said that, there's sufficient evidence that quantifies the outside limits and magnitude of a placebo effect between 30% and 70%

To my way of thinking, if we as a group are achieving better than 75% efficacy from this regimen with either a CH pain free response or a significant reduction in the frequency, intensity and duration of our CH, then we are actually experiencing a therapeutic effect from this regimen.

The other way of looking at these results is...† Machs nicht!† Who cares if it's a placebo effect or a therapeutic effect...† the pain is gone!

Please keep the reports coming...

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #66 - Mar 4th, 2011 at 1:18pm
 
Batch, and everyone...
I believe, Batch, that in your own way, you have done a small n, ABA design (pioneered by B. F. Skinner) with your own trials of being on and then off and on again the supplements and noting the changes in pain levels with each change in the administration of the supplements.
From the first page of your post on this topic: "Each time I skipped taking this anti-inflammatory regimen, I could feel the beast coming back within 24 hours of each skipped dose...."
This, at least according to what I remember from psych, is enough to indicate a significant effect. Maybe not enough to satisfy the "gold standard" but certainly more than enough to continue exploration.
I wasn't bold enough to face the beast again to do this myself.† But if anyone out there trying this supplement regimen wants to go off and note any changes in pain level then go back on and do the same, please let us know your results.
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Re: 123 Days PF And I Think I know Why
Reply #67 - Mar 8th, 2011 at 9:56am
 
Lucas has picked up this regime as well.

He's finding the right balance between 2,000mg-4,000mg omega 3 and 8,000IU to 10,000IU D3 right now- will post again when we finalize dosage. He is out of cycle now, and unfortunately (wait- totally totally fortunately, I just mean unfortunately in relation to this research) his cycles still bounce around a bit. Sometimes it's 6 months sometimes it is 2 years. So we won't know if this prevents a cycle for him BUT he has been getting off cycle zaps for a few seconds and the occasional shadow- we'll see what this does for those. These are new for him, and both of us feel this means he has another cycle right around the corner- but that is based on solely a gut feeling. So we'll see. I'll bust out the Cluster Headache journal again to record our findings on this.

Fingers crossed ad a Thank You and good luck to all of you!
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Re: 123 Days PF And I Think I know Why
Reply #68 - Mar 8th, 2011 at 5:58pm
 
Hi to all, back here after amost a 4 year remission period. I had been in cycle again for 6 days when I found this post, and decided to try the cal-mag-d and fish oil. Was having two hits a night, ramping up to a kip 8 or 9. Using O2 to abort, which always works for me, within 10 minutes or so. I've decided holding off running to the neuro for my usual  pred taper and verapamil. I have always taken a multivitamin, but I am on day 4 of an added 7,200 IU of D, 1200 calcium, 2,000 fish oil, 750 Magnesium. Threw in 50Mg of zinc for good measure. I know it may be to early to tell, but I actually had only ONE mild hit last night, kip 4, used the O2 and was gone within 3 minutes! My shadows have eased up too! I can't tell you how ecstatic I am, and hopeful this is a long lasting effect. I am not afraid to go to sleep tonight. I will keep you posted. Hoping we all can find an answer and be PF!
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Re: 123 Days PF And I Think I know Why
Reply #69 - Mar 9th, 2011 at 10:11am
 
Hey Julie,

That's great news...  Near as I can tell, this regimen reaches maximum effectiveness after two days of use.  Please keep us posted.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #70 - Mar 9th, 2011 at 10:56am
 
Last febuary I didnt have my usual CH's and couldn't work out why - until now. I was eating smoked salmon and poached eggs on toast for breakfast most mornings after my run ( bought the salmon reduced and would freeze it ). So I have started using the D3 and omega fish oil and within 24 hrs I am only having low grade shadows that come and go instead of the annoying heavy shadow that lasts all day, lets see if my 12-15am demon arrives tonight.
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Re: 123 Days PF And I Think I know Why
Reply #71 - Mar 9th, 2011 at 2:34pm
 
Hello everyone, I'm new to the forum but I've been lurking for a few months.

I decided to try to the D3 regimen after reading this thread.  I've been at it for 4 days so far, and went from being in near constant pain from shadows and taking serious attacks at around midnight to... almost NOTHING.  I get an occasional, very mild, brief shadow every now and then, but aside from that, I'm pain free.  Quality of life has improved dramatically.

I've been taking 10,000 IUs of D3 a day in the form of 1 5,000 IU tablet in the morning, and one in the evening.

I won't rule out the possibility that I'm nearing the end of a cycle, but I'm honestly not willing to quit taking the d3 tablets to find out.  If anything changes, I will post in this thread.
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Re: 123 Days PF And I Think I know Why
Reply #72 - Mar 9th, 2011 at 4:36pm
 
Welcome to the boards Monkey, great news on the Vitamin D front. This is getting a little hard to ignore, do keep posting on your progress.

Joe
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Re: 123 Days PF And I Think I know Why
Reply #73 - Mar 9th, 2011 at 10:38pm
 
Oxyrunner, Powermonkey,

Thanks for the "How Gozit" updates on your experience with this regimen.

I grew up here in the Pacific Northwest in the Puget Sound area so smoked salmon is always a regular.† I used to smoke my own and may start doing that again.

I like my smoked salmon on a toasted English Muffin with a big dollop of Dill Sauce topped with a slice of tomato and a slab of Tillamook sharp cheddar cheese.† I stick the whole contraption under a broiler to warm the smoked salmon and melt the Tillamook.† Wash that down with a cold† Pilsner Urquell or Alaskan Amber and you've got a meal fit for a king.

As far as the Vitamin D3 dosing goes, take a look at the attached paper by Dr Peter J Lewis, MD on vitamin D(3) Deficiency I found a few weeks ago.† It's an eye-opener.

Take care and please keep the updates coming.

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, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: 123 Days PF And I Think I know Why
Reply #74 - Mar 10th, 2011 at 12:38am
 
Hurting hairí during childhood (pain in the scalp when hair is brushed or combed)
shivers down my spine...
My 5th child (4yrs old) complains about this alot. I knew in the back of my mind it wasn't right, but couldn't imagine how "silly" I would sound as a mom if I mentioned it to a doctor! ALWAYS TRUST YOUR GUT† Smiley (He is also tired alot-I give him a liquid vitamin, but it hasn't helped as much as I would like.)

His poor little body isn't gettin what it needs...
Thanks for sharing that link.

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Words can not express the gratitude I have for all of you who have, in the midst of such great pain, reached out and helped so many...
 
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