Since you comments were conversation rather than medical in tone, I can only ask one question: is your neuro skilled in treating complex headache disorders or someone you have stayed with because of a long relationship/you like him?

Treating a dual diagnosis does require some deep experience and skill.

If any question on your part, would be worth a consultation with a headache specialist to see if your present treatment plan is up to speed.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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 or 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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Explore:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.

(Dig around for treatment of dual diagnosis.)

Hi Bob -

You know, I've felt well taken care of by my neurologist up to the last six months... but lately, yes, I'm wondering if I might need to look elsewhere.

It was he who first, and immediately, diagnosed me with clusters after four awful weeks when my primary couldn't figure out what wrong with me. 

He's also been very sympathetic to my condition... he or his personal secretary take my call and get back to me the day I call, or at worst the next day, any time I have an issue.

And he tries his best to minimize the amount of medications he puts me on.  He cautions me against pain killers, is conservative in raising levels of other medications, etc.

All that is, good.

But with these migraines of late, I feel like he sees them as just a bother while the clusters are the real issue.  And while I agree that the clusters are much much worse when they are here, the migraines in between are really impacting my quality of life in such a way that is really putting me in a bad state of mind.  Very worried about work, very worried about personal life, and just mentally and physically beat up and exhausted.

And when I met with him last Friday, I guess I didn't feel like I was heard on this.  I have to take the blame on that though.  I thought I tried, but I guess not hard enough. He raised my zonisimide levels and wants me to touch base in three weeks.  I think that our next discussion is going to be a real turning point.

Thanks for listening, as well as the good resource info in case I need to look elsewhere.


Bob Johnson wrote on Jan 21^st, 2014 at 1:46pm:

Ref your reply #3: Every time this issue comes up I go back to the largest medical library in the U.S. to see what's going on. It's always the same! Remarkable little research or clinical experience being reported on what has, sometimes, been called "cluster-migraine" (defined as a headache which has aspects of both disorders).

Either this is a phantom which doesn't exist or so rare a condition that there not enough cases to attract much research.

The only clinical oriented paper I've found says that the symptoms which treat each disorder may, at times, have to be treated with the meds best for that specific element. Really takes a sharp doc who can walk that tight rope, hence, my first suggestion.

But, with today's economy, taking a risk of a consult may not be a wasted effort.

I'm another "lucky" one with both CH and migraines.

My first CH cycle was 11 months long and I just missed the chronic label as I started on vitamin D3. My second cycle was a very feeble one with just 10 CHs over a 5 month period (possibly not enough D3 or something at the time?), but I've been CH pain free ever since.

However around the end of that second cycle I started with migraines, which I'd never had before. They initially started about once every 2-3 days before rapidly building up to 10 a week. My CH surivival skills helped a lot but they had a big impact. I've no idea how I kept working, never mind doing a pretty stressful role.

In time, working with a really good neuro who also helped me with my CHs, we got on top of things, identifying a preventive that worked for me, suitable migraine abortives, minimising risks of rebound headaches and identifying triggers. The result is that my migraines started to drop off over time so that now, just over two years later, I get them about once every 3 months, however I get days where I almost have a migraine once or twice a month.

For me, the key was working with a good neurologist who has the appropriate headache related skills and experience. Plus me having the skills and experience from surviving with CH.

Hi Frank
I agree with Hoppy @ #6. I don't suffer migraine but I do have clusters and the imitrex injections are my new best friend. It states on the box "for the treatment of migraine and cluster headaches". If you can afford them you are killing 2 birds with one stone.

For migraine, propanolol works well, initially it took upto 230mg a day, which is a huge dose but it is now down to 30mg a day, which is pretty minimal.

Cutting out caffeine and chocolate were the triggers which were identified. I've had no chocolate for a long time, which is something I really enjoy, but worth skipping. For caffeine I've not had coffee or tea in a long time, but will take an energy drink when a migraine is near as it'll either kill it before it starts or help to bring it on.

What is odd is that for CH my triggers are stress reductions, being tired or hungry and solvents, but I'm fine with alcohol.

We're all different.

Thanks Mike, I'm sure this will be of interest to lots of
folk here. i'm with you on chocolate, when in a cycle. So
the Easter Bunny came to me after Autumn.

Cheers, Hoppy.

Unfortunately, I don't tolerate any of the triptins very well.  When we first tried them I had a couple of bad reactions so we've avoided them since.   One time I felt like I was having a heart attack... it was frightening.


Hoppy wrote on Jan 21^st, 2014 at 4:56pm:

Frank,

I've had very good luck with DHE 45 injections.  In my experience while they do sting a bit at the injection site as you are doing the injection, that dissipates within a minute or two at most.  There's also a DHE 45 nasal spray now, Migranal, that works for some (although for me it doesn't work as well as the injections) if you want to avoid the injection.  Just another perspective...

Matt

Hi all - just wanted to update. Things haven't been better for me, in fact pretty bad lately. So glad to be off of "dopamax" but zonisimide - while it seemed to work well for a few weeks, hasn't been great.  I have lost weight with it... So that's a plus. Lol.

My Neuro want to give it one more round of dosage increase before giving up. He hates drugs for the sake of drugs and has had success with this with a few other migraine/cluster patients.  So I'm willing.

But tomorrow me and my wife are going to meet with him and we are going to discuss disabilty. I simply can't continue to work any more.  I can't make it through 6 days a week, I work a lot of nights too and those are brutal for me.  I've used up all my sick time on my two previous cluster periods...so considering another one of those is on the horizon and this is the "good" time...I'm terrified of losing the job I've held for 20 years. So regrettably I'd rather apply for long term disability through my employer - something I've already discussed with my HR rep - rather than lose my job.

Either way, it stinks.  But I have to protect myself and my family... And maybe if instead of being an idiot and being in pain all day at work and a zombie at home... I try just listening to my body, letting my doctor try to fix these migraines and hope that the clusters eventually stop in my 50s.

Ugh.

Thanks for listening.