Hello, I've been suffering from Cluster for at least 10 years now, diagnosed about 6 years ago. I'm going through my most intense cluster yet. I hope yesterday was my peak, I had 4 attacks, normally I get 1 maybe two a day at the same time each day for a few weeks. this one, the times are changing, ever since yesterday i feel like I'm on the verge of a cluster.

We just moved so I don't have a primary care physician yet, need to make an appointment.

Current Treatment is Verapamil and Generic Imitrex injections... I hate doing the injections so I'm looking at different options, done zomig nasal but it didn't work as well. Interested in oxygen, concerned about the cost though.

Don't know what else to share, just wish I wasn't here (on the forum)

Edit: Actually remembering back... as a kid (under 5) I got head aches, I had a CT scan... didn't show anything so I guess I was fine.. but my guess is I've been suffering CH for 22 years... off and on

Hi Headvise,
Welcome sorry you had to find us. If you check out the
Vitamin D3 Regime thread on this site it could be just
what your looking for. It has an 80% success rate of
becoming pain free.If you have any :question just PM
Batch, and he will guide you through.

Good Luck, Hoppy.

Hello HeadVise,   The cost of industrial oxygen is pretty cheap, 20 to 25 dollars to refill your tank but you need to buy that tank first. I use a 90 cubic foot tank which is fairly heavy but it usually lasts a week for me. One can buy a lot bigger tank but they cost around 200 dollars for the initial purchase.
    I think once you try oxygen you won't be merely interested in it, you'll swear by it-- you don't know what you been missing.  Check out this site, you find out about a vitamin D3 regime that's helping a lot of people.

   This question is for all you guys that have been visiting and posting for several years or more, --- has this spring and early summer been worse than average for increased intensity and less controllable  ch's?  I know my cycle quickly escalated out of control (which D3 cured) and it seems I'm reading about a lot of others with similar complaints.

   Good luck HeadVise,      Sean

G'day Sean,
My Spring 2012 cycle here down under were the worst i have ever experienced.I went to hell and back for 3 months,
day and night, it must be somthing in the air. [smiley=hammer.gif]

Cheers, Hoppy.

Our collective experience is clear: most docs, even neurologists, lack the training and experience treating Cluster. So, if you have the option, find a headache specialist.
---
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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.
=====
Imitrex injection is the best abortive for Cluster because of it's speed of action. The other triptans are, generally, less effective. (See PDF file, below.)

There is a needle-less sumatriptan on the market. Check with our pharmacist.

If you don't need an abortive more than once a day or so, this med has been very effective for several of us. Your doc can give you a sample and you'll know about it's effectiveness for you with 1-2 uses.
--
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
====
Important that our Verap dose is high enough. Upwards of 900mg is not uncommon.

---

updated original post...

As well, called to get an appointment with a primary care certified in headaches... well they're "currently in negotiations with my insurance for the past 6 months and not excepting new patients..." I blame the affordable healthcare act...

I've given up on calling doctors because all are not "accepting new patients"

Well I'm thinking about starting D3 today, haven't found a doctor but I figure it can't hurt to spend 15 minutes outside in the buff at mid day...

Start the D-3. 80% success rate, cheap, good for you even without CH. 3 years pain free after 35 years of episodic CH.

Joe

Well... I was hoping that making my own D3 would be quicker acting, just woke up with a CH, don't know how much Sumatriptan I've gone through this cycle, just glad I've been stocking up

Still no luck finding a primary care...

HeadVise Wrote

Well... I was hoping that making my own D3 would be quicker acting

Not sure what you mean. :question

Hoppy.

That sitting outside in the sun during mid day and creatig D3 would provide quicker results then having to take a supplement that has to be metabolized by the digestive system and yield quicker results.

BTW, another wonderful night [smiley=hammer.gif]   [smiley=hurl.gif]

hi headvise, im pretty new here on the site, there are a lot more here experienced that me, but, heres a bit of info from my experience.
im on the regime now, nearly 2 months.
I work outside every day, im fair skinned and I get more than the average person im picking, especially in the aussie sun.   my vit d levels were deficient when I got tested !!
I was hoping they were, as I wanted the regime to be a viable alternative, but doubted that they would be because of my sun exposure and reasonably good diet.  so from my experience, I was deficient with all the sun exposure.
best thing to do,  go get a blood test for your levels, only way to know for sure.   if only it was as easy as sitting in the sun for an hour i'de be a happy man,  but everyones different. maybe I cant process all that the sun offers, all I know now is that my levels are right up there with the regime, giving me a chance of being one of the lucky ones to go pain free........
regards
colin

wrote on Jul 23^rd, 2013 at 2:57am:

I work outside every day, im fair skinned and I get more than the average person im picking, especially in the aussie sun.   my vit d levels were deficient when I got tested !! I was hoping they were, as I wanted the regime to be a viable alternative, but doubted that they would be because of my sun exposure and reasonably good diet.  so from my experience, I was deficient with all the sun exposure. best thing to do,  go get a blood test for your levels, only way to know for sure.   if only it was as easy as sitting in the sun for an hour i'de be a happy man, colin

things to consider: do you uses sunscreen and how much clothing are you wearing... if you're "fair skinned" being in the sun every day, (not clear what you mean) I assume you're avoiding absorption of UVB rays

G'day Headvise,
I spend a lot of time out in the Aussie sun, wearing shorts
and a short sleeve shirt. [smiley=cool.gif]. I saw my GP at
the end of last summer for a check up, and my 25(OH)D level
was non-existant,he put me on 5000iu vitamin D to get my
levels up.I'm now on the vitamin D Regime and so far pain
free.

PS, forgot to answer your? i don't use sunscreen never have.

Hoppy.

hey headvise,  what I was meaning was that by rights, being in the sun I should be getting a good dose of vit d.
I wear shorts all year round, do use sun screen but not enough.
the hole thing was that if you rely on being in the sun to up your d3 levels, it might not work, like it didn't for me, maybe I cant absorb it properly, by rights I shouldn't have a problem with all the sunlight and diet I had, but when tested I was deficient.  so I was just commenting on what you said about sitting in the sun and dosing up naturally, as I said, it may not necessarily be doing anything for you. as hoppy also said,   best thing is to get tested to find out exactly what your levels are.
infact ive avtually had 3 skin cancers cut out over the last few years, so the sun ive had had absolutely no effect on my d3 levels.......   hope this helps
colin

I was just trying to get an idea of how much surface area you're exposing to the sun, nude sun bathing will  yield much higher D3 production then wearing shorts and a T shirt, having significantly tanned skin will also decrease D3 production to the level of tanning. At least as I understand it.

G'day HeadVise,
The general rule of thumb is, 15minute exposure to the sun
on your bare arms gives you your daily amount of D required.
I used to spend a lot of time at the beach when i was a lot
younger, but i still got CHs.

Hoppy.

Hoppy wrote on Jul 24^th, 2013 at 5:14pm:

The general rule of thumb is, 15minute exposure to the sun on your bare arms gives you your daily amount of D required. I used to spend a lot of time at the beach when i was a lot younger, but i still got CHs.

Whilst it is likely that you were getting enough sunlight, it is possible that you were deficient in some of the cofactors used to create the vitamin D3, like magnesium, calcium, etc.

I literally can't find a PCP that will see me... the soonest openings are September... FML

HeadVise wrote on Jul 25^th, 2013 at 4:50pm:

I literally can't find a PCP that will see me... the soonest openings are September... FML

Ring up for cancellations. Try anything that might work to get you seen sooner.

In the meantime, get ready with a headache diary, questions, observations, etc. Anything that will increase the value of the appointment when you get in.

Finally got an appointment scheduled for next week with a PCP... we'll see how it goes.

Well appointment went well, I got an O2 scrip, normal mask though, not the non re-breather... prednisone if I need it, also went from a 6mg of imitrex to a 4mg to cover 3 headaches a day instead of 2, and upped my verapamil, have a follow up scheduled in a month.

How did he tell you to use the prednisone? Most of us use it as a transitional med.......something to keep beasty at bay while your prevent (Verapamil) ramps up. I typically did my prednisone on a taper......2 days at 80 mg, 2 days at 70 mg, tapering down to zero. That gave me a guarantee block against beasty until my lithium....my prevent......was at a high enough level to keep beasty more in control.

I'd suggest scoring a non re breather mask as you'll see MUCH shorter abort times. The one DJ sells on this site gets high marks from those who use it:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Sounds like you have a sound battle plan...that's well over half the battle won!

Joe

A number of factors can play a role. Limited exposure to sunlight heads the list. Except during the short summer months, people who live at latitudes above 37 degrees north or below 37 degrees south of the equator don’t get enough UVB energy from the sun to make all the vitamin D they need. The same is true for people who spend most of their time indoors and for those of us who avoid sunshine and use sunscreens to protect our skin from the harmful effects of ultraviolet radiation (see "Suncreens"). It’s an example of an unforeseen consequence of wise behavior, but you can enjoy sun protection and strong bones, too, by taking vitamin supplements.

one more bit, maybe CH sufferers Cholesterol substance (the provitamin D3) isnt working right is is in short supply. 

"To make vitamin D, your skin needs adequate exposure to the sun. Your skin contains a cholesterol substance called provitamin D3 that reacts with the ultraviolet-B (or UVB) rays in sunlight to form vitamin D3. From there, the body takes over, first passing the vitamin D through the liver and then through the kidneys, converting it along the way into the form that the body needs [source: National Institutes of Health]."

1 pill 4 times daily 3 days, 3 times daily 3 days, 2 times daily 3 days, 1 time daily 3 days if the O2 doesn't help.

As far as O2 masks how does the one DJ sells compare to a a mask I can pick up for a few bucks?


Guiseppi wrote on Aug 1^st, 2013 at 11:16am:

How did he tell you to use the prednisone? Most of us use it as a transitional med.......something to keep beasty at bay while your prevent (Verapamil) ramps up. I typically did my prednisone on a taper......2 days at 80 mg, 2 days at 70 mg, tapering down to zero. That gave me a guarantee block against beasty until my lithium....my prevent......was at a high enough level to keep beasty more in control. I'd suggest scoring a non re breather mask as you'll see MUCH shorter abort times. The one DJ sells on this site gets high marks from those who use it: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Sounds like you have a sound battle plan...that's well over half the battle won! Joe

Sadly I don't have any personal experience with the mask as I use a demand valve set-up. Start with the inexpensive mask.....assuming it's a non re breather. For the 02 to be really effective, you need to get 100% oxygen to the lungs, at a rate to support hyper-ventilation. Re breathers allow exhaled air back into the lungs, diluting the oxygen, which increases the abort time. So if you can find an inexpensive/non re breather, give it a shot.

The prednisone taper is pretty much how I do mine. Hope the 02 proves the magic for you that it's been for me.

Joe