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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › It you *weren't* helped by O2, imitrex, or Vit. D

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It you *weren't* helped by O2, imitrex, or Vit. D (Read 4496 times)

alisonjmorrow

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It you *weren't* helped by O2, imitrex, or Vit. D
Dec 28^th, 2014 at 2:03pm

I'm curious how many others out there have *not* been helped by the therapies that seem to help most other CH sufferers. My husband is the one with the CHs, and he's tried all the "standard" therapies with no relief. I'm wondering now if those who are like him have found something that *does* work for them, something that perhaps doesn't normally help others - or if they're not helped by anything, which would be *really* depressing...

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Batch

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #1 - Dec 28^th, 2014 at 3:14pm

Hey Alison,

Good question. You can find results from a survey of CH preventatives and abortives here at CH.com in the tab at the left of this screen titled "cluster survey." It will provide answers to the first part of your question.

There is another preventative that's proving to be effective for more than 80% of the CH'ers who try it. It's called the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3. This regimen treats a vitamin D3 deficiency and inflammation from just about every source including CH.

Have your husband see his PCP for a lab test of his 25(OH)D. This is the metabolite of vitamin D3 that's used to measure its status. The normal reference range for 25(OH)D is a serum concentration of 30 to 100 ng/mL. The vitamin D3 experts say any 25(OH)D serum concentration less than 50 ng/mL is deficient.

CH'ers with active CH who have gone in for this lab test have all had it come back less than 40 ng/mL indicating a vitamin D3 deficiency.

Over the last four years over 600 CH'ers have started this regimen. The online survey of 127 CH'ers indicates 83.5% of them experience a significant reduction in the frequency, severity and duration of their CH. 60% remain pain free.

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:

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

The vitamin B 50 is not shown. You’ll need a 3-month course of vitamin B 50 to handle any deficiencies among the seven B vitamins. Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

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 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...

Regarding the safety of this regimen. Long term dosing with 10,000 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.

Again, the above regimen of vitamins and minerals is called the anti-inflammatory regimen. At 30 to 45 cents a day, depending on where you buy your supplements, this is the most cost effective and safest CH preventative available to us. You can read more about it at the following links:

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

.

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

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Take care and please keep us posted

V/R, 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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Mike NZ

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Oxygen rocks! D3 too!

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #2 - Dec 28^th, 2014 at 6:56pm

For oxygen for most people who report it as not working they were not using it to best effect. The mask needs to be a non-rebreather mask, i.e. not nose cannula or a rebreather mask. The flow rate also needs to be fairly high, with 15lpm or higher with the higher flow rates working better.

With imitrex, what type did he use? If it was the tablets then they normally take about 20 minutes or so to get into the bloodstream, which is far too slow. So the best options are the injections and then the nasal spray.

Batch has covered off D3 with his post.

What other medication has he tried? Verapamil is a common preventive however frequently doctors do not give a dose high enough to be effective, with 360-480mg a day being enough for most people but some needing up to around 1000mg.

Another option to consider if everything has been tried and there is no response to the standard medications being correctly used is if the CH diagnosis is correct as it could be something that gives similar symptoms to CH but it needs different medication to be effective.

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Bob Johnson

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #3 - Dec 29^th, 2014 at 10:18am

There are at least two factors which you need to consider: 1.the meds used have not been at adequate dosing levels and/or not for long enough time to evaluate the impact.

See the PDF file, below, for guidance.

2. He may not have have Cluster. See:

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

At least raise the question with your doc. Or you may have to consier a new doc if he's too closed to the idea.

This kind of problem may reflect a doc without sufficient education/experience with this complex area of medicine.
=====
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

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

On-line screen to find a physician.

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

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

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

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED

Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

« Last Edit: Mar 13^th, 2015 at 9:21pm by Bob Johnson »

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Bob Johnson

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alisonjmorrow

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #4 - Dec 29^th, 2014 at 9:44pm

Thank you, everyone.

Batch, we started your regimen two weeks ago, but my husband hasn't had bloodwork done yet to determine his D3 levels so I don't know where we were starting from. Given the fact that his diet is crap and he almost never goes outside, I'm assuming he's extremely deficient, so maybe it's just going to take a while longer for him to see some relief.

We did the high flow (15lmp) O2 with a non-rebreather mask and he found that it pushed off the headache but didn't abort it completely. As soon as he stopped using it he'd get the headache.

He used the Imitrex sprays and found they helped on occasion, but there seemed to be a window in which he had to use them to get relief. If he used it too quickly, then it seemed to push off but not stop the headache (kind of like his reaction to O2) and if he used it too far into the headache then it didn't do anything. Because he often woke up with the headache full-blown, rather than at the beginning, he often missed the window. They were too expensive for us to keep using given how unreliable they were. Sad

He's been using the pills for a while now and they seem to end the headache sooner than they normally would about 60% of the time. He has a needle phobia, so he's never tried the injections. (That's also why we haven't done the bloodwork yet.)

He tried Verapamil way back when he was first diagnosed. He was working with a neurologist at the time (the same one that diagnosed him in the first place). I honestly can't remember now what the deal was with those - they must not have worked since he didn't continue with them.

i hadn't thought about the fact that he's probably extremely deficient in Vit D and probably everything else in that anti-inflammation protocol, so maybe the reason he hasn't seen any improvement is because he has so far to go to get to therapeutic levels. I'm going to keep praying that it works for him eventually. We got pretty big bottles of everything (we were optimistic!) so we should be able to keep going with it for at least a month, maybe a month and a half. His last two cluster cycles lasted 4 months and this one just started Dec. 1, so anything less than that will be success in our eyes!

« Last Edit: Dec 29^th, 2014 at 9:45pm by alisonjmorrow »

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alisonjmorrow

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #5 - Dec 29^th, 2014 at 9:48pm

Also wanted to add that we just moved to Texas, and I just found the list here of recommended docs in our area (we're just north of Houston) and am going to start making calls this week. We have crappy insurance that is one step above catastrophic, and the deductible is insane, so we have to pay out of pocket for everything - praying these headache clinics have reduced rates for folks like us...

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shooky

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #6 - Jan 24^th, 2015 at 3:49am

Partial response to O2 might suggests there's a strong trigger present. For example, it was found that nitroglycerin induced attack does not respond to O2.

Some report similar experiences after deliberate or accidental use of certain alcoholic foods/drinks, PDE-5 (viagra, cialis etc.), certain strains of cannabis, exposure to solvents etc.

So assuming it is CH, I would give a series thought to triggers and avoidance.

« Last Edit: Jan 24^th, 2015 at 3:59am by shooky »

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MikeS

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #7 - Mar 10^th, 2015 at 12:22am

I have been one of those who, like your husband, hasn't responded to most of the more common (if there is such a thing with clusters). Imitrex shot will kick a full on migraine, however it won't touch my clusters. O2, I used a high flow rate and I would often get my first attack of the day to abort (or push back), however it wouldn't help my second attack much and eventually I was resistant to any relief. Nuerontin would help for maybe 18 months (reduce 4-5 attacks to 2-3 a day) I would become resistant, increase dose, become resistant and so on until I reached the limit of what they would prescribe. Then in about 3 years I would try again and about the same would happen. I have some posts about what has helped that are several years old. Feel free to check them. However they still help and I have been able to reduce by 80+ % the amount I require to get some help. Thanks MikeS

manicmechanic

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Kevinm12

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #8 - Mar 15^th, 2015 at 9:08am

I'm new to this board but I've been having cluster headaches from what I can remember since the age of 8. 26 years now.

I've tried everything. Medication, different types of massage and PT, oxygen, trying to figure out what if any triggers I may have etc (I thought strong perfume/cologne was a trigger but turned out I was wrong). I went as far as a monster dose of amitriptyline which came close to breaking me in other ways and got no results.

About 3 years ago now I was pushing 300 lbs. Now before weight or diet comes into play as a suggestion, I was much lighter and having clusters long before this. I went to the doctor, had a serious discussion with her and myself internally and decided I needed to go the other way while I was still at an age when it could be easy.

I decided to try a ketogenic diet. Originally I went with Atkin's then found my own way as Atkin's became too commercial for my liking. I lost a ton of weight but what was more amazing and surprising to me was my cluster headaches went away almost completely. I say almost because while I still have a day of them once ever 6-8 months but it's not the regular 3-4 days straight a week, every three weeks cycle I used to be guaranteed. The relief and realization had me sobbing. It was literally like being freed of chains.

The hardest thing was the beginning because dropping the carbs put me into hands down the most painful cycles I'd ever had. I almost gave it up the pain was so bad. I ended up bringing carbs back up until the cycle went away then slowly stepped down to the level I'm at now which is 20-30 grams of carbs daily.

I don't know if it has to do with the same effect keto has on the brain and epilepsy but I do know it is not a coincidence that my clusters went away almost immediately after that initial terrible cycle when I went keto. Nothing, I mean nothing, came this close to providing me this level of relief previously.

I don't know if this will work for your husband but I wanted to share my experience as a long time sufferer who lucked into what I consider an almost 95% cure.

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chrismo5555

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Vitamin D3 is for me!

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Re: It you *weren't* helped by O2, imitrex, or Vit. D
Reply #9 - Mar 25^th, 2015 at 1:13am

Here is my little theory... you can use a preventative approach, but often times that preventative approach can only get you so far. Then, it is up to you to do things to keep individual attacks from breaking through.

For example, I use the Vitamin D3 regimen and I would say it keeps my attacks as just minor shadows. But, in order for those minor shadows to stay just minor shadows, I do all of the following:

1. General Health, especially diet: Be healthy 365 days a year. My diet is clean and well-balanced and I am a total gym rat. My cycles are MUCH easier these days, compared to when I was a chubby teenager that never exercised and ate crappy processed food all the time. While in cycle I definitely recommend eating very plain, healthy, whole, unprocessed foods.

2. Keep your body alkaline. This makes a HUGE, HUGE difference for me. I drink applce cider vinegar mixed with water (very, very important to make sure it is organic, unprocessed applce cider vinegar with "the mother" in it) every morning and every night. This has tons of health benefits, but importantly, helps to keep your body alkaline (opposit of acidic). You can read up all about how your body's pH is related to CH. You can accomplish similar effect with lemon water or baking soda mixed with water.

3. Caffeine, Taurine, Ginger, as abortives. Caffeine and Taurine are stimulants that are found in coffee (just caffeine) and "energy drinks". I always go for an ice cold energy drink or an iced coffee as soon as I feel an attack coming through and it typically helps a ton. I use ginger capsules as an abortive as well. As soon as I feel an attack coming on I take two capsules.

4. Kudzu: It doesn't get talked about much any more, but it used to be a hot topic. Folks were using Kudzu to completely keep the beast at bay! Most, however, found that the therapy began to lose its effectiveness after a few weeks. This was my experience when I used it alone years ago. These days, I add Kudzu to my Vitamin D3 regimen when I'm in cycle and I think it helps. Kudzu can interfere with prescription abortives, however, so you may want to read up on that. I don't take any prescrition drugs, so I have not looked into it in a while and forget the particulars.

5. Get up and move around. The beast makes me want to just lay there and do nothing when I'm not being attacked. You'll feel better if you force yourself to get up and move around. Especially if it is cold outside and you can feel the nice cold air on your face and in your lungs.

With that said -- I've done all of these things in the past when I was not on the vitamin D3 regimen and they weren't nearly as effective as they are these days. So in sum, I think having a really solid preventative (like the D3 regimen) in place, and then tweaking your lifestyle choices and arming yourself with these natural abortives is a good plan of action. Just my two cents!!

-Chris

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TeeJ2379 CH.com Veteran Offline I Love CH.com! Posts: 140 Central PA, USA Gender:	*Re: It you weren't* helped by O2, imitrex, or Vit. D Reply #10 -** Apr 1^st, 2015 at 4:26pm Vitamin D3 regime for almost 2 years here. I have not had an issue with CH in a long time. But I agree, being healthy and moving around does wonders. Now that winter is over I plan to exercise more often. Hydration and good sleep helps a ton. Melatonin before bed can help with sleep during cluster.
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