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Have experience w/Diamond H/A Clinic in Chicago? (Read 1784 times)
wip5150
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I have tired head


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Have experience w/Diamond H/A Clinic in Chicago?
Jan 5th, 2010 at 9:57am
 
Howdy folks,

I am in the midst of a really shitty cycle and I'm seeking some guidance from my pals on this site.  First a small bit of history:

  • I first experienced the delight of this disorder when I was 19 - I'm now 40
  • I am episodic and it seems that as I've gotten older, I have a longer break between cycles but the cycles themselves seem to be much more painful
  • I am currently on 540 mg of verapamil daily (ER) and use Imitrex nasal for abortive purposes as needed. (Quick side note - I travel a LOT for my job which makes oxygen not a realistic option for me at this time.  I'm a believer in it as I've used it at times, but it would impede too much on my gig)
  • My known triggers when in cycle are alcohol (obviously), microwave popcorn (odd, but true), any sort of sausage (probably due to nitrates) and sleep (again, obviously)


I've been in my current cycle for about six weeks and I feel like I've been peaking for the past week or so.  In the past, I was on 240mg daily of verapamil and it really seemed to do the trick and I'm frustrated that not only is my cycle longer this time, but nothing really seems to be working to kill the attacks (not even trex).  Like many of you, I feel like I can deal with the pain most of the time, but the true head-killers are just demoralizing.

So, I feel that instead of going back to my family doctor (who, by the way, has been very supportive - I'm just beyond tired being the "expert" and leading him around on the lovely nuances of cluster headaches), I'm entertaining thoughts of going to a specialist.  Namely the Diamond clinic in Chicago.  Has anyone had any experience there?  The website extols many of their virtues but it seems VERY heavy on migranes and not clusters which concerns me. 

Thoughts are welcome and are most appreciated.

PF wishes to all!
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Ever dance with the devil in the pale moonlight?  I have, and man it hurts.
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Bob Johnson
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Re: Have experience w/Diamond H/A Clinic in Chicago?
Reply #1 - Jan 5th, 2010 at 11:30am
 
If you are old enough, you know that Seymour Diamond, the founder of the clinic, was a big name in early CH research and treatment. His daughter, I believe, is/was top dog now.

Reports here have been generally favorable but I assume that overall ratings reflects how good/bad the oucome of the treatment was rather than any capacity to evaluate the quality ot the MEDICINE being practiced. If this is a serious question, I'd ask your doc to nose around for reports. Doctor-to-doctor evaluations are going to be more candid and dependable.
========
Your Verap dose is low compared to what is common used. Upwards toward 900 is not uncommon.

Imitrex spray is regarded as less effective than the injection and may be worth exploring. See buttons, left, for lower dose regime which has gained medical aproval.

Zyprexa has a good following here. Re. travel: the pill form has obvious advantages and, on a per dose basis, less expensive cf. triptans.
---

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.
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« Last Edit: Jan 5th, 2010 at 11:31am by Bob Johnson »  

Bob Johnson
 
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Re: Have experience w/Diamond H/A Clinic in Chicago?
Reply #2 - Jan 5th, 2010 at 11:59am
 
I can never get this straight - does the "ER" designation on verapamil mean that it's the slow release type?

If so, ask your doc to prescribe the regular release. Studies have shown it to be much more effective for our condition.

Also, as Bob has suggested, consider asking your doc to up the dosage.
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Bob Johnson
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Re: Have experience w/Diamond H/A Clinic in Chicago?
Reply #3 - Jan 5th, 2010 at 12:47pm
 
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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anthony g
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Re: Have experience w/Diamond H/A Clinic in Chicago?
Reply #4 - Jan 5th, 2010 at 12:59pm
 
so what that is saying is there is not enough study about slow release or regular?
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dougW
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Re: Have experience w/Diamond H/A Clinic in Chicago?
Reply #5 - Jan 5th, 2010 at 7:25pm
 
Dr Fred Freitag is co-director of the Diamond Clinic.
He spoke at the ClusterBuster conference in Chicago last year, a very well informed Doc. 
(and a great guy when you talk to him)

I've seen many posts on here about the Diamond Clinic, unfortunately not everyone finds the outcomes and/or relief we all would like.

Sorry, I doubt there is a headache clinic anywhere that is not heavy on migraine, there are a lot of them migraines out there.  Smiley

Hope this helps.

Doug
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wip5150
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I have tired head


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Re: Have experience w/Diamond H/A Clinic in Chicago?
Reply #6 - Jan 6th, 2010 at 9:55am
 
Thank you all for the comments - a quick update:

Last night, about a half hour after I went to sleep, I got SLAMMED with a K8.  I immediately took a nasal Trex and began my nighttime routine:  sitting up, rocking back and forth, holding my head, walking around, taking a piping hot shower, etc.... you all know the drill.  The freaking thing never really went away and I'm still feeling the effects of it (and the subsequent sleep deprivation) 10 hours later. 

In any event, I had some leftover Verapamil (180 mg - short acting) from my last cycle two years ago and began using that this morning.  One of the drawbacks, which I alluded to in my initial post, is that I tend to know more about this disorder than the doctors.  And, because I knew what I needed and couldn't see my regular doc in November, I was apparently prescribed the Extended Release which, as we all know, is a big bag of nothing for CH's.

Thanks again for the comments.  I'm going to try to get into the Diamond clinic and see what they say and I will report back here.
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Ever dance with the devil in the pale moonlight?  I have, and man it hurts.
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