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Topic: Chronic for two years (Read 303 times) |
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allenjaphy
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Chronic for two years
« on: Jul 8th, 2007, 7:40pm » |
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Hi all,
I'm Miranda. I've had cluster headaches for over two years. I've been on Topamax, Verapamil, Depakote, Prednisone, Oxygen therapy, effexor...etc.. nothing has worked at all.
I now have 8 neurologists all agreeing they are chronic cluster headaches but no one has an idea of what to do for them...
I get at least 6 a day, the most has been 16. I'm really at the end of my coping skills with this.
Has anyone had any help with trigger point injections?
Physical therapy? Anything?
the neuro at the mayo suggested pregnancy. I'm 24, married, so we are trying for a baby, but I can't function right now. I've lost 10 lbs in the past 3 weeks just from not being able to function. Any help is welcome.
Thank you.
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Kevin_M
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Re: Chronic for two years
« Reply #1 on: Jul 8th, 2007, 8:11pm » |
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Hi Miranda,
There's hope and help here.
What can you relate, in detail, about your oxygen use? Catching hits early, breathing time, Lpm, and mask.
Verapamil. Mgs per day.
Imitrex use?
Alternatives?
Clusters are hard for others to comprehend experiencing, we understand, getting some relief or management regimen is very important. There is lots of reading here too.
Hang in.
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| « Last Edit: Jul 8th, 2007, 8:13pm by Kevin_M » |
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allenjaphy
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Re: Chronic for two years
« Reply #2 on: Jul 8th, 2007, 8:24pm » |
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I topped out on verapamil at nearly a gram a day. I was on 400 mg of topamax and lost all feeling in my hands and feet.
I had a high flow (9-12 Lpm) non-rebreather mask, I had a tank at home and used it religiously for 3 months without it helping once, catching an attack right as my nose would start to burn/run (unless I was awoken by an attack and then I started then)
I have imitrex statdose 6mg for both the migraines and clusters I get, it always helps the migraines but rarely the clusters.
As far as alternatives, I use cold showers, ice packs, pacing. My rule personally is that if I feel I can no longer control the urge to hit my head on things or hurt myself to distract myself I go to the ER. What they do there helps but that regimen can't be done at home.
The doc at the mayo said I was his first case in 20+ years of being THE headache doctor at the mayo to see non-aura migraines and co-morbid chronic clusters in someone of my age (22 when they started, 24 now) or my gender (female)
My GP refuses to see me for my headaches anymore, in fact last visit he said he "needed to get back to work".
I'm just getting more and more depressed and tired and my ability to cope is bottoming out.
Thanks
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Redd
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Re: Chronic for two years
« Reply #3 on: Jul 8th, 2007, 8:34pm » |
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Many Chronics and long cycle episodics have good luck with a cocktail of Verapamil and lithium.
Zeprexa (sp) is another possible abortive if triptains don't seem to work. But then there is also Zomig (triptain nasal spray) that could be tried.
9-12 lpm may not be enough O2 to do the trick. Try going up to 15 lpm. I'd also suggest investing in a clustermasx.
Now this next suggestion is un-orthodox, but it has been successful for many people willing to take the risk.
www.clusterbusters.com
Please read carefully at this site.
Sorry you had to find us, but you are at the best source for sufferer guided information in the world.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Kevin_M
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Re: Chronic for two years
« Reply #4 on: Jul 8th, 2007, 9:35pm » |
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I see the extent to which you've tried preventive measures lucklessly without effect. And the abortive abilities of oxygen and a triptan have seemed to be unavailing, infrequent that neither has been helpful. I take it a scan has been done too, among all the docs.
It can be puzzling, some have gone inpatient for an extra hand at it, experiences here are varying with short or extended success, but alternatives can still be explored. Keep reaching.
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Bob_Johnson
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Re: Chronic for two years
« Reply #5 on: Jul 9th, 2007, 8:47am » |
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Lithium has been effective for many chronics.
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Eur J Neurol. 2007 Jun;14(6):694-6.
The use of gabapentin in chronic cluster headache patients refractory to first-line therapy.
Schuh-Hofer S, Israel H, Neeb L, Reuter U, Arnold G.
Department of Neurology, Charité-Universitätsmedizin Berlin, Berlin, Germany.sigrid.schuh-hofer@gmx.net
Chronic cluster headache (CCH) is a rare but challenging condition. About 20% of CCH patients get refractory to treatment. Gabapentin has recently been reported to be efficacious in the treatment of CCH. To test the potential of gabapentin as second-line drug, we prospectively studied the efficacy of gabapentin as add-on drug in eight patients suffering from CCH refractory to first-line treatment. Six of eight CCH patients responded to treatment. After the end of the study phase, the patients' clinical course was further followed up until January 2006. The longest period of being continuously pain-free under gabapentin treatment was 18 months. In some individuals, increasing doses were needed with time. We conclude that gabapentin may be offered as treatment trial in patients refractory to first-line treatment. However, patients may fail to respond to treatment and drug tolerance may occur with time.
PMID: 17539953 [PubMed
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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.
PMID: 16362716
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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