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Title: Proplatic treatment Post by bsage on Sep 7th, 2003, 9:07am The survey and messages all seem to relate to "How to stop the pain" After over 20 years of cluster headaches (they didn't have a name then and the medical profession was completely ignorant of symptomoly or treatments) During this time I had all the then typical "Treatments" I had teeth pulled because the pain seemed to be triggered from them, took heavy doses of pain killers and narcotics, had cortisone shot into the roof of my mouth, etc. etc. Finally I had a neurologist put me on lithium as a propolatic (it does not relieve symptoms/pain). After 5 weeks the headaches became progressively less frequent and finally stopped after about 2 months. The side affects were a time lapse between an event happenning and my ability to react to it. (My kids all refused to be my partner in Pictionary calling me "Lithium Head") I staye with lithium daily dosages for 2 years with NO HEADACHES! Then gradually reduced the dosage gradually decreasing over 3 months to no lithium. That was 6 years ago. No more headaches and God I'm relieved! I hope this works for someone out there as I know the incredible suffering that you are going through :-) Bob |
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Title: Re: Proplatic treatment Post by Prense on Sep 7th, 2003, 10:00am That's awesome Bob! There are some here that take lithium...some take it in conjunction with verapamil or another preventative. Were you chronic or episodic? It sounds like you are convinced lithium did the job, but this CH thing can be SO unpredictable. I have heard of some folks just stop getting attacks all together for no real reason. Additionally, some have VERY long remission periods. Either way, I am ecstatic that you have been without the beast for so long, and I hope you never have to deal with it again! Chris |
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Title: Re: Proplatic treatment Post by sadsue on Sep 8th, 2003, 10:48am Hi ,is lithium an anti-depressant? They tend to prescribe antidepresants in G.B for any ills they can't find a cure for. I've been thro' several types over the last 9yrs. I'm sure they are great for some. I have been taking Beta-Blockers (Propananol) for 7yrs now. They really got me under control. However, I am getting more and more 'breakthro' attacks recently. I'm really afraid for the future. But have heard a lot about oxygen and am trying to sort something out (it's unheard 0f in U.K) |
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Title: Lithium, Valproate, Choline, Inositol Post by floridian on Sep 8th, 2003, 11:40am Lithium is a mainstay for treating bipolar disorder - aka "manic depression" (where a person switches between depressed and hyperactive/euphoric states). Like every other drug, lithium doesn't do just one thing. Some of the more interesting effects of lithium are on choline and inositol, critical components of cell membranes. As clusterheads have cell membrane abnormalities, maybe this is part of the therapeutic action of lithium. In particular, clusterheads have a deficiency in choline, while lithium elevates choline dramatically over the course of therapy and also has a major effect on inositol. Surprisingly, no one has published any research on whether choline or inositol supplements can help with clusters. Could be that direct replenishment of these nutrients would be more effective and less toxic than lithium. But the fact that clusters are a "rare" disorder puts us at the back of the line for research dollars. Some day we'll get it figured out!! A few abstracts to illustrate the point, (...) indicates abbreviation (YaBB size limit for post reached): Quote:
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Title: Another very interesting abstract Post by floridian on Sep 8th, 2003, 12:43pm Interesting research from almost 20 years ago - with no followup to see if a choline supplement is useful as a treatment. Most peculiar. Quote:
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Title: Re: Proplatic treatment Post by Giovanni on Sep 8th, 2003, 5:28pm This supplement might be worth a try? http://www.iherb.com/inosiolchol.html ??? |
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Title: Re: Proplatic treatment Post by floridian on Sep 8th, 2003, 9:45pm I am not reccomending any particular brands, or even a particular supplement. I can only say what works for me and what doesn't. At this point, I am trying to get discussion started and get people thinking about cluster biochemistry. All I can say at this point is that reading the literature brings up possibilities. Will it help anyone? Too soon to say. In this case, I have taken inositol, and can't really say if it helped. I have had a "dry" cycle this year - every abnormality except a cluster. This year, it was the cluster pattern of disturbed sleep, twitching eye, tingling in my foot, burning on the forehead, and a few shadows. I took melatonin and 5htp to improve my serotonin balance, and decaf tea and turmeric extract to reduce nitric oxide production. This year's symptoms have pretty much ended (like they always do in late August/early September), so I am not taking anything now. But if I did have headaches, I would probably try choline as well as the inositol. Both are nutrients and have excellent safety profiles, but we don't know how they affect clusters. A few other notes: in the studies I read, inositol was taken at 12 - 18 grams per day. That would be alot of tablets, and tablets are usually more expensive. Powdered inositol is cheaper, and a few spoons in a liquid are easy to take. Pure choline can cause a fishy odor to the breath if taken in large doses - maybe harmless, but it doesn't sound good. Lecithin is rich in a form of choline (phosphatidylcholine) and isn't associated with the fish smell, but we cant say if this form has the same effect as free choline. Liver and Eggs are the richest natural sources of choline (530 mg/3 oz of liver, 280 mg / large egg). Is it safe to eat liver and eggs? Depends on who you talk to, but I think a few weeks of cholesterol are an acceptable risk if it helps with clusters. So take this discussion with some of your own research and reflection. Make your own informed decisions. I am hopeful that these connections in the research help people, but I don't have anything to gain or lose from what others decide, and I have more questions than answers. |
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Title: Re: Proplatic treatment Post by sadsue on Sep 9th, 2003, 10:55am WOW! I'm so impressed- some of you have done so much work. Can I get choline tabs from a regular health food type store in G.B ? Why are studies so slow moving ?I know we're in a minority but so are lots of other groups. I think it's the name ...headache... :-/ |
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