I'm on my third year of cluster headaches and I've just recently found a doctor that is listening. General practitioners and neurologists, I've been through quite a few.
Much of my complication derived from my history with migraines. I've had migraines since I was 10 yet a little after I turned 33 they decided to change into CH. Lucky me. Now the idea of miniscule migraine pain brings a smile to my face. The good-old-days. I still get migraines, yet there's no need for any pain meds for them. I have a new perspective on pain.
My CH: My episodes come in about month long blocks. I get 2 attacks per day most days. It lasts a month and I have about month off. Usually about the same off as on.
I'm in the middle of a set/cycle/cluster that started at night on 5/31. I've had 2 per day until today, I got an extra one in the afternoon today, cause 2's not enough. Now I'm trying to wait the next one out so that it doesn't catch me asleep. I'll sleep after.
I am exhausted. Every time one ends, I'm running from the next. When I do sleep, I often dream that I'm being chased or attacked.
About 3 more weeks and I get a break. I'll convince myself that I'm just like everyone else. I stay fit, I'm healthy. It can't really hurt that bad. I need to stop being dramatic. Then, one night a month later, I'll wake up in the middle of a dream where a gopher is digging a hole behind my eye through my temple, or where a bad man in a black mask has me on the ground and is shooting me in the head repeatedly.
I'm being a little dramatic, but today sucked, I don't want to go to sleep and I've put enough crap on my family for one day. I am a grown ass man and I am scared. It's coming again soon. Maybe 5 min, maybe an hour. Who knows, maybe I'm cured. :)

Krkr8m,

Welcome aboard CH.com.  You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way.

Members here bring many years experience living with cluster headache including what works and what doesn't when it comes to treating this disorder...  All you need to do is ask...  There's a lot of helpful reading here as well.

The following links are a good start.

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Check your PM inbox, I've left you some additional info there.  You can access your PM Inbox at the link in the upper left of this page by clicking on the bold green print in "you have 1 new messag."

Take care and please keep us posted.

V/R, Batch

Thanks for the replies and private messages. Not that it's nice to see others in the same boat, but it is good to know there are others dealing with this ^%#%#  $#$@.
Mostly I'm here looking for some extra-familial support. My wife is awesome and I've got 3 awesome sons who all care for me, yet I'd like to cut down what they have to deal with if I can.

Yesterday sucked pretty bad. It caught me once more before I finally went to bed at about 3am. When I felt it catching up, I threw on some headphones blaring obnoxious music, tried to push my fingers through my brow bone, rocked, shook and bawled as quietly as I could manage. I punched myself full-on in the head at least once. After, I leaned back on the couch and panted like I'd just run a few miles. I'm pretty sure I got my cardio in.

A mixture of migraine and cluster makes for some difficulty in treatment. If at all possible, would encourage you to find a headache specialist.
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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.
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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.
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There are a number of effective meds for Cluster but it will take patience to find the particular combination which is effective for your mixed mig/cluster picture.

The fear, one of the worst aspects of this disorder for sure. Try the D3 asap,go to walmart tomorrow,go right now,dont wait for tests or consults with Dr.s get on it NOW. There is a very active FB page you should check out  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
3500 pairs of sympathetic ears. Get some redbull or any energy drink with taurine while you are at walmart,slam one ice cold when you hear the beast approaching,it may help.

Thanks guys! FYI, I don't have a Vit D3 deficiency. I've been tested multiple times. I'd know this even if I hadn't been recently tested. I live in Tempe, AZ. (114F/46C today) and I'm very light pigmented. Triptans are also no help to me. I suspect for a similar reason.
Thanks for suggesting that I take the D, butt I don't think that will help in this instance. ;)

Hi sean,
            I too am a fair skinned episodic cluster sufferer that when I got my D levels tested, the doctor said that my levels were fine !  that's 1960 recommended levels,  I was deficient !!!    what was your last test result levels ?????


colin

The doctors idea of "normal" is nowhere near what you need to be for the D3 to help. Batch has included charts in his posts on "123 days pain free". It's a very long thread but if you scroll through it quickly the chart is easy to spot as it's pink and green. It tells you what your levels need to be and you can compare your own results to it.

Sean,

Colin and Maz are spot on with their comments on what is "normal" and what isn't when it comes to lab results for 25(OH)D with respect to the cluster headache activity.  25(OH)D is the serum level metabolite of vitamin D3 use to measure its status.

The following chart tells the real story when it comes to your 25(OH)D serum concentration and CH activity.

This chart illustrates the 25(OH)D time course response to vitamin D3 doses from none to 1000 IU/day, 5000 IU/day and 10,000 IU/day vitamin D3.  It was developed by Dr. Robert Heaney, MD.  Robert is a professor of endocrinology at Creighton University School of Medicine.  He's also a Jedi Master of vitamin D3 therapy.

The color bands come from data collected from a survey of 127 CH'ers who had their 25(OH)D tested before starting the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 and after a favorable response to this regimen.

83% of the 127 CH'ers who took enough vitamin D3 to elevate their 25(OH)D to an average of 78.5 ng/mL, experienced a significant reduction in the frequency severity and duration of their CH...  By significant, the average reduction was from 3 CH attacks a day to 3 CH attacks a week.  60% of them experienced a lasting pain free response to this regimen.

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The "Normal" reference range for serum concentrations of 25(OH)D is 30 to 100 ng/mL.  As you can see, a 25(OH)D serum concentration of 30 to 50 ng/mL can be interpreted as "normal" yet CH'ers with "normal" results in this range were still reporting CH attacks...

I understand your logic of living in Arizona and having fair skin equals a normal serum concentration of 25(OH)D...  and this would be valid if you were a roofer, farm worker or lifeguard...

The human skin can generate 15,000 IU of vitamin D3 in as little as 15 minutes exposure to the UVB in mid day sun...  The kicker is you need to be clad in a bathing suit without any sunblock...  Exposed face, forearms and lower legs doesn't really cut it when it comes to cutaneous vitamin D3 production to the levels we need as CH'ers.

The simple solution is call your PCP or his assistant and ask them to check your records for your last lab results for 25(OH)D... only this time ask for the actual serum concentration and do not accept "normal" as an answer.  The 25(OH)D serum concentration should be measured in ng/mL.

Have you tried oxygen therapy at flow rates that support hyperventilation as a CH abortive?  It's better than 95% effective with an average abort time of 7 minutes if started early and used properly...  How long do your CH last?

Take care and please keep us posted.

V/R, Batch

I'm working with my insurance at the moment to get them to pay for the O2 with the proper mask and flow rates etc.

As I said before, I don't have a Vit D3 deficiency.
I realize that D3 has been shown to provide some measurable improvement to 80% of CH victims and that some even show nearly complete improvement. 80% is a lot, but it is not 100%. I am part of the 20%. I'm also part of the ~5% that have both CH and migraines and the ~15% that have side shift sometimes. Though the gross majority of my attacks/clusters/months are on the right side, every once in a while it will switch to the left for a bit.

Like most CH sufferers, I have tried a lot of treatments. Here is a short-list:

Melatonin - Works somewhat at shortening attachs and cutting down their number, but I sleep for 18 hours and my migraine symptoms come back with a vengeance making it impossible to function for work purposes. I pretty much have to be down 24 hours a day.

Triptans - Help with the migraine symptoms but increase the length, pain and shadows of the CH attack. Not worth it. Injection does not abort the attack.

D3 - Does nothing for me (yes even in very high doses)

Opioids - They only help if I can take enough to be effectively unconscious of the pain (drooling) and I need to take them long before an attack, which takes some guess work, and they can give me rebound symptoms, addiction. Pretty much not an awesome choice.

It is also possible that one might try some things outside the prescriptive process. But those aren't necessarily legal so I'll forgo that discussion in a public forum.

Also, as I said before, I am psychologically exhausted and am seeking a support network outside my worn-down family. Once I'm feeling up to it, I'd also like to provide the same to others. Now, this conversation has exhausted me further. Respectfully, I am not on this discussion board for unsolicited and aggressively persistent help with treatment options. I researched all of this in minute detail long before feeling comfortable enough to post my issues to a group board. I expect that most people do the same.

My personality is such that I aggressively seek out treatment options and am often quite aggressive with my doctors. I've pissed off more than a few. I keep a copy of my own medical records and am adept at reading them.

I apologize for my direct approach in this response, yet my previous attempt at a lighthearted redirection did not seem to communicate my intent effectively.

In lighthearted response to some of your posts, while I was once a lifeguard for a few years when I was younger, I am no longer one. My middle son (Alex, 13) is a Junior Lifeguard, though I doubt that his VitD transfers to me. I also worked for years as an IT architect (think The Matrix). My wife (Michelle, I'll say  ;) 25) and I (both prior novelists) own a small publishing company, where we publish mostly fiction (novels, children's stories, etc.).
When I am not working, I like to spend time outdoors. I am a hobby metalworker and woodworker. We do a lot of walking, hiking, jogging, bike riding, swimming, playing at the park with Eli (3) and many other activities.
I have a pretty awesome life besides the monster chasing me.

Thanks for the support! I'm just so tired of dumping so much on my family yet I can't go-it-alone.

great post batch,
one thing i'll point out, living here in Australia, supposedly one on the highest places for u.v exposure, I have had at least 6 skin cancers removed surgically over the last 5 odd years, one was a full blown melanoma, fortunately they got to it in time  and yet, I was deficient in my D3 levels !!!!
go figure !
I was unable to produce enough d3 in my body and diet to firstly get to the therapeutic levels required by the regime, but at 51 nmol was considered by doctors as fine !
sure would be interesting to hear your figures !!
regards
colin

Thanks Bob! I've got a headache specialist and I've seen a few. Migraines aren't so bad, but as you say, it does make CH treatment much more complex and difficult. What works for most, won't work for me in many instances. I'd go back to just the migraines in an instant.

The biggest problem with having had migraines first (like 40% of the CH population), is that all of my Migraine friends and family act like they know what an attack is like because they have migraines.  >:( It makes it very difficult to talk to them. Now I just direct them to youtube to watch a few attacks, then they start treating me like a china doll.
My wife wants to film me in an attack, and she has good reason (she wants to show every doctor I visit). I usually don't even want her there. I know it's stupid, but I try to hide it. I still want to be the indestructible husband and father. Sometimes I'll lock myself in the office/garage/bedroom. The shadow (I call it the herald when it's first) will wake me at night sometimes and I'll head out to the living room before the attach hits if possible.

I often get a half hours notice or more with no high level pain. But only a few seconds to a couple minutes when the attack hits.

Thanks everyone for the support!

Blacklab, it was over a month ago during my previous cycle. Without supplement, I think it was 139, though I haven't dug into my records to check. I do know that I've been over 150 a few times in past blood-tests.

Also, Australia is pretty hot and has high UV, but the Phoenix Metro area is the hottest populated area in the world and has very high UV exposure for the elevation.

Anyway this is probably not the primary reason why my D3 levels are high, some people's bodies just produce D3 better than others. I am 3/4 Norse heritage and 1/4 Tribal Native from the northern part of North America. All of my ancestors had to process sunlight efficiently or die.