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Topic: Proplatic treatment (Read 1011 times) |
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bsage
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Proplatic treatment
« on: Sep 7th, 2003, 9:07am » |
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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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Prense
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Re: Proplatic treatment
« Reply #1 on: Sep 7th, 2003, 10:00am » |
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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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sadsue
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Re: Proplatic treatment
« Reply #2 on: Sep 8th, 2003, 10:48am » |
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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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'THY SOUL SHALL FIND ITSELF ALONE
'MID DARK THOUGHTS OF THE GREY TOMB-STONE-
NOT ONE, OF ALL THE CROWD, TO PRY
INTO THINE HOUR OF SECRECY:'
edgar allen poe 1844( CLUSTERHEAD.)
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floridian
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Lithium, Valproate, Choline, Inositol
« Reply #3 on: Sep 8th, 2003, 11:40am » |
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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):
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Cephalalgia. 1986 Sep;6(3):147-53.
Abnormal membrane composition and Membrane-dependent transduction mechanisms in cluster headache. de Belleroche J, Kilfeather S, Das I, Rose FC.
Previous studies have indicated that membrane structure and function may be abnormal in cluster headache. This has been further investigated by analysis of membrane phosphatidylcholine, total phospholipids, and cholesterol in erythrocytes and by assay of receptor-mediated transduction. (...) A significant increase in the ratio of membrane phosphatidylcholine to cholesterol without change in cholesterol was found in cluster headache patients as compared with control subjects. This indicated a reduced turnover of phosphatidylcholine, since erythrocyte choline is significantly reduced in this condition. Abnormal membrane function was also indicated from the significant depression of high-affinity prostaglandin receptor stimulation of lymphocyte adenylate cyclase and the similar trend in the beta-adrenoceptor response. (...) It is hypothesized that the impaired function that would result might contribute to the aetiology of cluster headache.
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Eur Neuropsychopharmacol. 2003 May;13(3):199-207. Chronic lithium and sodium valproate both decrease the concentration of myoinositol and increase the concentration of inositol monophosphates in rat brain.
O'Donnell T, Rotzinger S, Nakashima TT, Hanstock CC, Ulrich M, Silverstone PH.
One of the mechanisms underlying lithium's efficacy as a mood stabilizer in bipolar disorder has been proposed to be via its effects on the phosphoinositol cycle (PI cycle), where it is an inhibitor of the enzyme converting inositol monophosphates to myoinositol. In contrast, sodium valproate, another commonly used mood stabilizer, appears to have no direct effects on this enzyme and was thus believed to have a different mechanism of action. (stuff removed...) As predicted, lithium-treated rats exhibited a significant increase in the concentration of inositol monophosphates and a significant decrease in myoinositol concentration compared to saline-treated controls. However, unexpectedly, sodium valproate administration produced exactly the same results as lithium administration. These novel findings suggest that both lithium and sodium valproate may share a common mechanism of action in the treatment of bipolar disorder via actions on the PI cycle.
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Biol Psychiatry. 1996 Sep 1;40(5):382-8.
Choline in the treatment of rapid-cycling bipolar disorder: clinical and neurochemical findings in lithium-treated patients. Stoll AL, et al
This study examined choline augmentation of lithium for rapid-cycling bipolar disorder. Choline bitartrate was given openly to 6 consecutive lithium-treated outpatients with rapid-cycling bipolar disorder. Five patients also underwent brain proton magnetic resonance spectroscopy. Five of 6 rapid-cycling patients had a substantial reduction in manic symptoms, and 4 patients had a marked reduction in all mood symptoms during choline therapy. The patients who responded to choline all exhibited a substantial rise in the basal ganglia concentration of choline-containing compounds. Choline was well tolerated in all cases. Choline, in the presence of lithium, was a safe and effective treatment for 4 of 6 rapid-cycling patients in our series. A hypothesis is suggested to explain both lithium refractoriness in patients with bipolar disorder and the action of choline in mania, which involves the interaction between phosphatidylinositol and phosphatidylcholine second-messenger systems.
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Biol Psychiatry. 1991 Feb 15;29(4):309-21.
Erythrocyte choline concentrations in psychiatric disorders. Stoll AL, et al
Erythrocyte choline has been used as a potential indirect measure of cholinergic function in the central nervous system (CNS). (....) Finally, the dramatic rise in erythrocyte choline concentration produced by lithium therapy is reviewed, and the implication of this effect, in particular, the possibility that pretreatment or posttreatment erythrocyte choline concentrations may predict response to lithium, is discussed.
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| « Last Edit: Sep 8th, 2003, 12:23pm by floridian » |
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floridian
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Another very interesting abstract
« Reply #4 on: Sep 8th, 2003, 12:43pm » |
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Interesting research from almost 20 years ago - with no followup to see if a choline supplement is useful as a treatment. Most peculiar.
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Br Med J (Clin Res Ed). 1984 Jan 28;288(6413):268-70. Related Articles, Links
Erythrocyte choline concentrations and cluster headache.
de Belleroche J, Cook GE, Das I, Joseph R, Tresidder I, Rouse S, Petty R, Clifford Rose FC.
Erythrocyte choline concentrations were measured in patients with cluster headache and age related control subjects. Concentrations were significantly reduced in the patients with headache both during a cluster period and between clusters, being 58% and 55% of the control value, respectively. After two weeks' treatment with lithium, choline concentrations in the patients with cluster headache increased to 78 times the control value (mean 369.2 mumol/l (3840 micrograms/100 ml) compared with 4.7 mumol/l (49 micrograms/100 ml]. The presence of depressed erythrocyte choline concentrations during and between cluster attacks indicates that this may be a predisposing condition which results in a cluster attack only when associated with a trigger factor.
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floridian
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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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sadsue
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Re: Proplatic treatment
« Reply #7 on: Sep 9th, 2003, 10:55am » |
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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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'THY SOUL SHALL FIND ITSELF ALONE
'MID DARK THOUGHTS OF THE GREY TOMB-STONE-
NOT ONE, OF ALL THE CROWD, TO PRY
INTO THINE HOUR OF SECRECY:'
edgar allen poe 1844( CLUSTERHEAD.)
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