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Katherinecm
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Preventatives for chronics
« on: Aug 10th, 2006, 6:09pm » |
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At the risk of joining the burgeoning med-free movement out of pure desperation, I have some questions about preventatives for chronics. Topamax worked quite well for about 2 months at lessening the severity of CH hits, getting rid of an intractible migraine, and letting me sleep. It didn't end the cycle or allow ANY pain free days though, and eventually it seemed to stop working. But it seems other preventatives (verapamil, lithium, and worst of all, lamictal) only made me WORSE.
Do any chronics have ANY history of ANY preventatives leaving them with pain-free days or breaking a cycle? Do preventatives often make chronics worse, or am I unusual?
I'm trying to figure out what to try next, and am leaning towards upping the frequency of RC seeds over what I tried before to maybe 5 seeds twice a day, NOT using wine to soak them in, combined with a fat-free raw vegan diet for a few weeks (with fatty acid supplements).
(edited for spelling)
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| « Last Edit: Aug 10th, 2006, 6:09pm by Katherinecm » |
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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kcopelin
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Re: Preventatives for chronics
« Reply #1 on: Aug 10th, 2006, 7:09pm » |
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Katherine (I love that namel!),
I've gone chronic this cycle, the verapamil doesn't seem to be doing much. I'd like to hear from other chronics though-this is new territory for me. I've never tried topamax or RC seeds, but am seriously looking at the seeds within a month.
PFDAN
kathy
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unsolved1
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Re: Preventatives for chronics
« Reply #2 on: Aug 10th, 2006, 10:27pm » |
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NOPE !! sorry ... I'm chronic (have been for about 6 yrs now). The only 'preventative' that has ever helped me is Histamine. The rest of the drugs I use are 'transitional' drugs (Solu Medrol & DHE) <--- Can't use them too often. And of course ... Imitrex inj. to abort attacks.
Goodluck on your quest to find a preventative med that works.
UNsolved
PS> just wanted to add that I don't think DHE fits into any of those categories exclusively. It works to prevent attacks for me temporarly (preventative) ... It can stop an attack if given quick enough (abortive) ... but you can't use it all the time (transitional). 
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chopmyheadoff
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Re: Preventatives for chronics
« Reply #3 on: Aug 15th, 2006, 8:54am » |
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i must be really lucky coz after being chronic for 7 years i was prescribed verapamil 1 month ago today and have been pain free since that day.
so there is hope
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LeLimey
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Re: Preventatives for chronics
« Reply #4 on: Aug 15th, 2006, 9:01am » |
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I'm chronic and I've tried everything bar DHE with some disastrous side effects on some stuff.
The only thing that has ever given me any PF time is the RC seeds (barring abortives) I'm currently on day 14 of pain free time since my last dose which is incredible for me and I'm loving it!
The trouble with CH is that nothing works for everyone, finding what works for you is a matter of trial and error but you will get there. I have 
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E-Double
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Re: Preventatives for chronics
« Reply #5 on: Aug 15th, 2006, 11:13am » |
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I honestly do not feel that anything really helped.
Sorry.
I was getting hit regardless of all of the meds I was on.
There were short periods where things did seem to help but then got progressively worse.
Sorry.
The only thing which I really think helped was
Verapamil REGULAR release and lithium, but then I got lithium toxicity.
Thus MED FREE............that has made me feel better.
Still have attacks but less frequent and less intense for the most part and I feel healthier but that is only anecdotal.
This is not to say that I would not try again, though I highly doubt it.
Good luck.
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Bob_Johnson
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Re: Preventatives for chronics
« Reply #6 on: Aug 15th, 2006, 11:16am » |
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I have no information other than this abstract--but interesting.
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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Headache. 2006 Jun;46(6):925-33.
Testosterone replacement therapy for treatment refractory cluster headache.
Stillman MJ.
Objectives.-To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy. Background.-Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.-Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.-Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.
PMID: 16732838
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| « Last Edit: Aug 15th, 2006, 11:22am by Bob_Johnson » |
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Bob Johnson
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SophiaK
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Re: Preventatives for chronics
« Reply #7 on: Aug 15th, 2006, 8:39pm » |
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I'm on verapamil and warfarin, still got CH. I sometimes think verapamil makes them worse, can't get off so easily due to Afib.
I wish it worked for me. Everyone is so different.
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Katherinecm
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Re: Preventatives for chronics
« Reply #8 on: Aug 15th, 2006, 8:41pm » |
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Thanks Bob, that is very interesting. Maybe I'll try that next.
Sophia, if verapamil makes it worse, try another drug that does the same thing.
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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Jonny
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Re: Preventatives for chronics
« Reply #9 on: Aug 15th, 2006, 8:48pm » |
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Lithium and Verapamil everyday for 15 years, stopped 85% of my chronic HA's. 02 killed almost all of the rest of them.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Katherinecm
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Re: Preventatives for chronics
« Reply #10 on: Aug 15th, 2006, 8:50pm » |
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I've tried o2 repeatedly, no luck. I haven't tried ordering a clustermask though.
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http://www.squidoo.com/clusterheadaches/
"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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Jonny
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Re: Preventatives for chronics
« Reply #11 on: Aug 15th, 2006, 8:59pm » |
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on Aug 15th, 2006, 8:50pm, Katherinecm wrote:| I've tried o2 repeatedly, no luck. I haven't tried ordering a clustermask though. |
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15 lpm?
Clustermask is a big help also.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Katherinecm
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Re: Preventatives for chronics
« Reply #12 on: Aug 15th, 2006, 9:01pm » |
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15, yes. Then my neuro was concerned the reason it didn't work was because she'd had some trouble with others with my o2 rental place, had me try it from somewhere else, it seemed to make no difference.
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http://www.squidoo.com/clusterheadaches/
"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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kissmyglass
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Re: Preventatives for chronics
« Reply #13 on: Aug 15th, 2006, 9:05pm » |
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Like Jonny, Verap & Lithium together is what works for my chronic head.
Hope ya find something that works quickly.
Kev
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Jonny
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Re: Preventatives for chronics
« Reply #14 on: Aug 15th, 2006, 9:06pm » |
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That sucks!, it seems that you are among the few it does not work for 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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