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wits end (Read 2359 times)
lennycohen
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wits end
Mar 5th, 2012 at 9:36pm
 
So I'm getting to the point where I'm grabbing at straws - almost three months into my latest episode, still getting hit 2x/day, aborting with either oxygen or Sumavel before they get too bad. On lithium 900mgs, amlodipine 10 mgs daily, allergic to verapamil, topamax makes me too stupid to function, Depakote made me gain 15 lbs and didn't really keep the HA's away for more than my episodic nature would normally mandate, IV Depakote used to work to break cycles but no longer does (this episode we tried 3 IV's of 1 gram Depacon, spaced over about 10 days, to no avail), and a high dose steroid taper (starting with 40mgs dexamethasone for 4 days, tapering over 20 days) got rid of the HA's, but they came back about 2 days after the taper was over.

Spouse is saying "drug holiday" and to get rid of the lithium and calcium channel blocker, and that if the episode gets worse, get another taper and restart the lithium and ccb.

Thoughts? Oh, and you can throw a few occipital nerve blocks into the mix, with very limited results --

If anybody has any ideas, please let me know.

Thanks

Lenny Cheesy
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Bob Johnson
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Re: wits end
Reply #1 - Mar 5th, 2012 at 10:24pm
 
Curr Pain Headache Rep. 2001 Feb;5(1):79-82.
The use of baclofen in cluster headache.

Hering-Hanit R, Gadoth N.

Department of Neurology, Meir General Hospital, Sapir Medical Center, 59 Jabotinski Street, Kfar Saba 44288, Israel.

Cluster headache is a rare, clinically well-characterized disabling disorder that occurs in both episodic and chronic forms. The very painful short-lived unilateral headache attacks are associated with autonomic dysfunction. A large number of drugs such as ergotamines, steroids, methysergide, lithium carbonate, verapamil, valproate, capsaicin, leuprolide, clonidine, methylergovine maleate, methylphenidate, and melatonin are considered beneficial for prophylaxis. Nevertheless, this extremely painful condition is occasionally refractory to conventional treatment. The antispastic agent baclofen has been shown to possess an antinociceptive activity. Its efficacy in neuralgias, central pain following spinal lesions, painful strokes, migraine, and medication misuse chronic daily headache suggests that it may be useful for prevention of cluster headache attacks. Therefore, we treated 16 symptomatic patients with cluster headache with daily baclofen, 15 to 30 mg, in three divided doses for the cluster period and 2 weeks after. Within a week, 12 patients reported the cessation of attacks. One was substantially better and became attack free by the end of the following week. In the remaining three patients, the attacks worsened and corticosteroids were prescribed. One of these was also given verapamil. Three of the 16 patients had an additional cluster period, which cleared with a second course of baclofen. In this pilot study, baclofen seemed to be effective, safe, and well tolerated for cluster headache, and seemed to retain its efficacy on repeated clusters.

Publication Types:
Clinical Trial

PMID: 11252142 [PubMed]
============
Headache. 2004 Apr;44(4):361-4.   


Eletriptan for the short-term prophylaxis of cluster headache.

Zebenholzer K, Wober C, Vigl M, Wessely P.

Department of Neurology, University of Vienna (Austria) Medical School.

BACKGROUND: A beneficial prophylactic effect from eletriptan 40 mg given to a single patient with cluster headache was observed. OBJECTIVE: To further evaluate the efficacy of eletriptan in the short-term prophylaxis of cluster headache. METHODS: We treated 18 patients; mean age, 40.5 years (standard deviation [SD], 9.9). The number of cluster headache attacks was recorded during a baseline period of 6 days, and during 6 days of treatment with eletriptan 40 mg twice daily. The primary outcome measure was the reduction in the number of attacks during the treatment period. RESULTS: In the 16 patients who completed the study (2 patients were lost to follow-up), the mean total number of attacks decreased from 10.9 (SD, 5.6) during baseline to 6.3 (SD, 3.7) during treatment with eletriptan (P=.01) The reduction in the number of attacks exceeded 50% in 6 patients. CONCLUSION: This small open-label study suggests that eletriptan 40 mg twice daily may be useful for the short-term prophylaxis of cluster headache.

PMID: 15109360 [PubMed - in process]
=====
Headache. 1998 Oct;38(9):710-2.
 
Cluster headache management with methylphenidate (Ritalin).

Mellick GA, Mellick LB.

From American Pain Specialists, Inc, Elyria, Ohio.

The authors report rapid cluster headache relief in a 43-year-old man with a 5-year history of refractory cluster headache. The patient described complete headache relief within 10 minutes of taking 10 mg of methylphenidate (Ritalin) when used to abort the onset of his headaches. Subsequently, a scheduled Ritalin dose taken each morning was sufficient to prevent his nightly headaches. In addition, 1 week of prophylactic methylphenidate therapy halted the series of cluster headaches. This is the first reported case of relief of cluster headaches with methylphenidate.

PMID: 15613186 [PubMed - in process]
=====
J Headache Pain. 2005 Oct;6(5):417-9. Epub 2005 Aug 1. 


Warfarin as a therapeutic option in the control of chronic cluster headache: a report of three cases.

Kowacs PA, Piovesan EJ, de Campos RW, Lange MC, Zetola VF, Werneck LC.

Headache Section, Neurology Division, Internal Medicine Department, Hospital de Clinicas, Universidade Federal do Parana, Rua General Carneiro 181/1236, 80060-900 Curitiba, Brazil. cefaleia@hc.ufpr.br

Chronic cluster headache remains refractory to medical therapy in at least 30% of those who suffer from this condition. The lack of alternative medical therapies that are as effective as, or more effective than, lithium carbonate makes new therapies necessary for this highly disabling condition. Based on a previous report, we gave oral anticoagulants to three patients with chronic cluster headache. Two of them remained cluster headache-free while taking warfarin. In the third patient, the use of warfarin for three weeks initially increased the frequency and intensity of cluster headache attacks but subsequently induced a prolonged remission. In spite of the paucity of data available, oral anticoagulation appears to be a promising therapy for chronic cluster headache.

Publication Types:
Case Reports

PMID: 16362716
=====
This exhausts my cache of odd ball maybes.
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Bob Johnson
 
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Re: wits end
Reply #2 - Mar 5th, 2012 at 11:50pm
 
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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lennycohen
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Re: wits end
Reply #3 - Mar 8th, 2012 at 9:57am
 
thx, appreciate the suggestions -
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Batch
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Re: wits end
Reply #4 - Mar 8th, 2012 at 12:05pm
 
Hey Lenny,

Have you asked your doctor for the lab test of your 25-Hydroxyvitamin D?  You're likely vitamin D3 deficient...

70% of the CH'ers who started the anti-inflammatory regimen with 10,000 IU/day vitamin D3 experience a significant reduction in the frequency and severity of their CH or go pain free.  Most respond within 10 days... some in as little as 12 hours...

Take care,

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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lennycohen
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Re: wits end
Reply #5 - Mar 23rd, 2012 at 8:39pm
 
things are looking up - even tho my D3 was ok (54), i'm taking 5000IU a day, with the fish oil, and magnesium, no calcium as I'm on a calcium channel blocker with the lithium, 10 mgs melatonin nightly, along with all sorts of other thing for various other ailments. Hard to say whether anything specific that I did eased my 3 month old episode about a week ago, but now I've got no spontaneous headaches, but I can provoke one with aspartame or red wine (or any of my other triggers). I'll do the wine test again in about a month - thanks for everyones help  Cheesy
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Guiseppi
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Re: wits end
Reply #6 - Mar 23rd, 2012 at 8:51pm
 
Glad to hear it Lenny, hoping this remission lasts a bit. Smiley

Joe
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Gail
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Re: wits end
Reply #7 - Mar 24th, 2012 at 6:40pm
 
Hi Lenny,

Mine just started again, thanks to the neurologist who put me on Savella. I was in a go-karting accident in Oct. that caused terrible pain in my neck and shoulders. She,along with the primary, claimed fibromyalgia. Started me on Savella and whatever is in the drug, triggered clusters. This is my off year so not sure why they are so bad but I'm trying Cambia. Its an anti-inflammatory. When I was up to 7 a day last year (thanks to imitrex rebounds), this stopped the cycle almost within a week. I'm trying it again and I can't say it has the same effects but these headaches are slightly different than the normal clusters. If your doctor will give it to you, I'd say take it. And if at all possible, stay off the prednisone. It causes gaps in your brain; same gaps they find in elderly patients. Mine already started thanks to years of prednisone. Not to mention the weight gain and effects on your joints and bones. I wish you the best and said a prayer for you.

Gail
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