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uclatrojan
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Hello everyone
Jun 28th, 2015 at 1:02pm
 
I'm a 25 year veteran of episodic cluster headaches and have been on oxygen for the past 5 years thanks to stumbling across the forums here. Up until then I had been to numerous doctors and had found nothing that worked, or any doctors who had a clue how to treat these things. After reading about Oxygen treatment I still had trouble getting doctors to prescribe 02. Finally, I really pushed the issue with a doctor at the pain clinic to write me a scrip and it changed my life. So, now that I have a way to abort them, I figure it's probably time to start looking at some preventative measures. Thanks, looking forward to hearing ideas from you guys!
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« Last Edit: Jun 28th, 2015 at 2:22pm by uclatrojan »  
 
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MDR
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Re: Hello everyone
Reply #1 - Jun 28th, 2015 at 1:08pm
 
go to the medication and treatment section in the forum and look up 123 days pain free there you will find a section on vitamin D-3 A LOT OF PEOPLE ARE ON IT AND DOING VERY WELL
Mark.
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uclatrojan
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Reply #2 - Jun 28th, 2015 at 2:21pm
 
Thanks for the advice, will start the regimen today.
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MDR
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Reply #3 - Jun 28th, 2015 at 2:33pm
 
It's helped me out and a lot of other people on this board

Mark.
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Peter510
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Reply #4 - Jun 28th, 2015 at 4:21pm
 
You need to get your D3 levels checked as soon as possible to establish where you're starting from.

Also, it's very important to continue the D3 regimen EVERY day, whether you are in an active episode or not.

Also, it's important to find a good headache specialist and keep them advised of your D3 regimen.

Good luck and keep us posted.

Peter.
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Mike NZ
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Reply #5 - Jun 28th, 2015 at 5:23pm
 
Hi and welcome

Oxygen is a great abortive, but not always the most portable solution, so I'd look at also getting imitrex injections (or nasal spray) for when you're out and about so you always have to ability to abort a CH you get.

For preventives, the most common ones are verapamil, lithium and topamax which your doctor will need to prescribe for you.

I'll also second the recommendations for vitamin D3 too as it has kept me CH pain free for 3.5 years now.
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uclatrojan
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Reply #6 - Jun 28th, 2015 at 7:07pm
 
Peter510 wrote on Jun 28th, 2015 at 4:21pm:
You need to get your D3 levels checked as soon as possible to establish where you're starting from.

Also, it's very important to continue the D3 regimen EVERY day, whether you are in an active episode or not.

Also, it's important to find a good headache specialist and keep them advised of your D3 regimen.

Good luck and keep us posted.

Peter.




My cycle is usually 2-2 1/2 months a year, do you mean taking the d3 year round?
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uclatrojan
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Reply #7 - Jun 28th, 2015 at 7:19pm
 
Mike NZ wrote on Jun 28th, 2015 at 5:23pm:
Hi and welcome

Oxygen is a great abortive, but not always the most portable solution, so I'd look at also getting imitrex injections (or nasal spray) for when you're out and about so you always have to ability to abort a CH you get.

For preventives, the most common ones are verapamil, lithium and topamax which your doctor will need to prescribe for you.

I'll also second the recommendations for vitamin D3 too as it has kept me CH pain free for 3.5 years now.




Most of my headaches come at night, so the o2 is convenient, although I get one or two bad ones during the day every cycle which is very inconvenient. Last summer I got one at 20,000 feet and it was pure hell. I could have used some imitrex that day. Thanks for the advice.
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uclatrojan
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Reply #8 - Jun 28th, 2015 at 7:34pm
 
About the fish oil, in Batch's post he said 3000 to 4000 mg of omega3 fish oil, does that number mean the fish oil capsules as a whole or the amount of omega 3 in the fish oil?
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Hoppy
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Reply #9 - Jun 28th, 2015 at 7:54pm
 
I'm not sure about the 3000-4000mg of fish oil, but the
normal dosage is 1000-2000mg/day, I take one 1200mg
capsule/day. For other health issues you can take up to
4000mg three times a day with meals

Hoppy.
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« Last Edit: Jun 28th, 2015 at 8:05pm by Hoppy »  
 
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Batch
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Reply #10 - Jun 28th, 2015 at 9:40pm
 
Hey UCLATrojan...  UWHusky here.

The following is the latest updated version of the anti-inflammatory regimen that I suggest...

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications follows:

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The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the Internet:

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The normal daily dosage follows:  Take two (2) of the 5,000 IU vitamin D3 liquid softgels, two (2) of the Omega-3 Fish Oil liquid softgels, one (1) of the 400 mg magnesium liquid softgels, one (1) of the Mature Multi tablets, and one (1) of the Super K liquid softgels.

Take a tablet a day of the vitamin B 50 (not shown) for three months.  After that, there are sufficient amounts of the seven B vitamins in the Mature Multi to prevent any further B vitamin deficiencies...

The supplements illustrated in the photo above meet the essential nutrients and doses listed in Table 1.  With the exception of enough magnesium, a single tablet of the Mature Multi provides most of the other vitamin D3 cofactors at the required doses including calcium, zinc, boron and vitamin A (retinol). 

The vitamin B 50 is a single pill formulated with all seven B vitamins at 50 mg each plus 400 mg of folic acid.  Dr. Stasha Gominak, MD, a neurologist at ETMC, Tyler, TX, suggests a 3-month course of vitamin B 50. 

The anti-inflammatory regimen can be used by itself or as an adjunct therapy along with the Standards of Care recommended treatments.

If you can’t get to a Costco outlet, a CH’er in the UK has found a source for all the needed supplements at iherb.com.  See his post at the following link for details on how to order them over the Internet:

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There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.

There are also a number of studies that have addressed the optimum ratio of calcium-magnesium supplements.  The general consensus is to keep these two supplements at a 2:1 or 1:1 ratio.  Many have found 400 mg/day sufficient.

Most CH'ers who have started this regimen in the last year and had their 25(OH)D results come back below 30 ng/mL, have used the accelerated vitamin D3 dosing schedule and found it got them pain free faster than taking the maintenance dose of vitamin D3 at 10,000 IU/day...  The accelerated vitamin D3 dosing schedule follows:

On day one, take the entire regimen with 10,000 IU/day vitamin D3 and two of the Omega-3 Fish Oil liquid softgel capsules along with one each of the remaining supplements the first day.

If there's no allergic reaction to these supplements (very rare), take 20,000 IU/day vitamin D3 for the next two weeks along with the rest of the regimen.

In addition, for the first two weeks take a 50,000 IU loading dose (ten of the 5,000 IU vitamin D3 softgels) once a week on top of the daily dose for two weeks.  The day of the loading dose you'll be taking a total of 70,000 IU vitamin D3.

After two weeks on above vitamin D3 dosing schedule, stop taking the once a week loading dose and lower your daily vitamin D3 intake to 15,000 IU/day. Continue at this dose for another two weeks then lower the vitamin D3 intake to a maintenance dose of 10,000 IU/day.  At that point see your PCP for another lab test for 25(OH)D.

If you total the vitamin D3 doses you'll be taking 600,000 IU vitamin D3 over the 4 week period.  This should elevate your 25(OH)D serum concentration by 60 ng/mL, (150 nmol/L) above your starting level.  Assuming that starting level was less than 30 ng/mL, (75 nmol/L), your serum concentration should be around 85 ng/mL, (212 nmol/L).

If you're like most of the other CH'ers who start this regimen, you'll experience a favorable response within the first week to ten days.  Migraineurs sail through their usual cycle times with nary a twinge...  If you don’t respond to this regimen with a significant reduction in the frequency, severity and duration of your CH in a week to 10 days, you may be battling an allergy. 

Benadryl (Diphenhydramine) has helped many CH’ers with allergies who are not responding to this regimen.  Benadryl is a first-generation antihistamine that passes through the blood brain barrier to block histamine receptors in brain cells.  Second- and third-generation antihistamines cannot do this.

Benadryl reaches a maximum serum concentration after an oral dose in 3 hours and its serum half-life is 10 to 12 hours for an adult.  That makes two (2) 25 mg of Benadryl a good dose.  It can take 24 to 48 hours for Benadryl to start taking affect in helping vitamin D3 prevent your CH. 

The only word of caution is avoid driving after taking Benadryl...  It WILL make you drowsy...  If you do need to drive during the day, wait until you're home for the night then take the Benadryl... 

Regarding the safety of this regimen.  Long term dosing with10,000 IU/day vitamin D3 is very safe.  Your skin can make 15,000 IU of vitamin D3 in as little as 10 minutes if exposed to the UV-B in direct mid-day sunlight clad in a bathing suit without any sun block.  There haven’t been any posts or reports of vitamin D3 intoxication since I developed this regimen in October of 2010. 

Again, over 600 CH’ers have started this regimen since then.  Other than an occasional upset stomach from the magnesium or Omega-3 Fish Oil, there haven’t been any adverse reactions that required medical attention.  You can’t say that about verapamil or any of the other pharmaceuticals prescribed to prevent CH.

Take care and please keep us posted.

V/R, Batch
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