I posted a few weeks (maybe months? who knows lol!) ago when I first started reading this site.  Since then, I've been diagnosed with a "migraine cluster variant".  I can find hardly any information on this anywhere, and the information I do find doesn't look so credible. I feel like my migraines and the suspected cluster headaches I'm having are completely separate, except for the fact that sometimes I'm a bit sensitive to light during the "cluster" headaches.  Any opinions?

Also, I have to see a different neurologist come January since my insurance is changing.  I've read the list of doctors on the OUCH site, but does anyone have any particular recommendations for northern NJ? Any guidance would be greatly appreciated  :)

It's been long recognized that we can have headaches which have elements of migraine and cluster.

The ligh sensitivity does occur in Cluster as does sound sensitivity.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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.

I get both CHs and migraines with them being very distinctive, however one overlap is that I sometimes am light sensitive during my CHs, more so when I first started with them.

Welcome back CK, we have several members of the board with multiple headache types, so sadly, it's not that unusual. Hopefully getting to a headache specialist will help you to seperate them out and get an effective treatment regimen for both.

joe

Thanks guys :)

My doctor apparently is a headache specialist...He was on a few of your sites, Bob. I liked him, but I'm a. still confused about the diagnosis and b. probably won't be going back to him since soon he'll be out-of-network. I'm starting to look for another doctor now, but have to do a little more research.

Mike--do you have a separate diagnosis for each? How are you treating one versus the other?

ck wrote on Dec 4^th, 2011 at 8:51pm:

Mike--do you have a separate diagnosis for each? How are you treating one versus the other?

Yes, I've two separate diagnosis.

I was diagnosed with CH about 15 months ago for which I use verapamil as a preventive, oxygen to abort, Red Bull for shadows plus Batch's vitamin D recipe. This combo works pretty well for me and I'm down to about 1 CH every 10 days or so, which compared to 2 or 3 a day is pretty good.

For migraines, I got them diagnosed a couple of months back although they seem to have started about four months ago. I'm using nortripylene as a preventive which has taken me from about 3 or 4 a week to about 1 every 10 days or so.

I may have had migraines for longer, however compared to a CH I find them in comparison pretty mild as although they tend to last a few hours there is nothing like the pain of a CH.

You know, I'm not certain about this, but I wonder if the designation "migraine cluster variant" isn't how clusters are still officially described? You know, as in the major category of Migraine headaches (where it shouldn't be) with the subcategory (variant) of Cluster Headaches? It might be the way insurance companies will recognize this affliction. Blessings. lance

Mike, wow you got a lot of headaches :( I agree though...my migraines have kept me bedridden at times, but I'd pick them over a cluster any day.  Do you feel that they're related? Especially with the diagnoses so close?

Lance...that's an interesting thought. I'll have to get more information on the categorization. For me, I feel that they are--or at the very least manifest--quite differently!

ck wrote on Dec 5^th, 2011 at 10:17pm:

Mike, wow you got a lot of headaches :( I agree though...my migraines have kept me bedridden at times, but I'd pick them over a cluster any day.  Do you feel that they're related? Especially with the diagnoses so close?

Before I had a concussion (Easter 2010) I'd get about one tension headache every 3 or 4 years.

After the concussion I had a constant headache for a few months of constant 24x7 headaches (tension?) with the CHs starting off irregular and at low Kip levels before evolving over a few months into the more classical rapid onset, 45-75 minute duration at high Kip levels which were diagnosed as CH after a few months. Not long after I started with ice picks and just over a year after the concussion, migraines.

Are they related, I'm not sure how you can conclusively prove that. There is certainly a strong temporal link in their commencement. But I'd put it that on the balance of probabilities that there is a link between them.

I'll take a migraine over a CH any day, even a CH I can abort in 5 minutes with oxygen.

I don't know how to describe the pain of a CH and whilst not having them I don't think I understand the level of pain (so how can I expect anyone else to?). BUT I know that I can control them pretty well and abort quickly any that get through.

I'm still working on developing my understanding of migraines to the same level as I've developed around CHs (thanks to this forum). But I'll get there...

mike...it's good to hear that you're controlling your CHs so well! it gives me confidence. and yes it's funny how when you're not in pain, it's so hard to really remember what that pain is like. i remember the pacing and clawing and whatnot, but to understand it without actually feeling it is incomprehensible!

lance...i asked about the categorization and was told that the term "migraine" is used as more general headache term, not the specific headaches with nausea/light-sound-smell sensitivity we normally think of. hmm...