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Changeling
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Lithium???
« on: Dec 17th, 2005, 9:21am »
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I'm sort of new here adn havent posted much befrore, but i need some help.........i have had episodic CH for 12 years, and was coping with it more or less successfully, but my last cycle started in June, adn hasn't stopped, adn Prof Goadsby at the Instittue of Neurology has just confirmed that it has switched to chronic CH Sad Angry.
 
I'm currently using O2 and verapamil, but it is not properly controlling it, and i can't increase th dose because i have (very mild) coronary heart disease......they suggested i try Lithium either with or as a replacement for verap. I hadn't realised lithium was used for CH, th only ppl i know on it are Bipolar, and while i now know that th dose is lower for CH, it has a long and impressive list of possible side effects, so i'm a bit wary of it........anyone here using it successfully? adn anyone  not? any advice will be welcome.
 
I am aware also of alternative treatments, some of which are controversial, and some illegal here, th uk site has a lot of problems with these treatments, but i am open to anything that will work.
 
 
tony
« Last Edit: Dec 17th, 2005, 1:05pm by Changeling » IP Logged

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Re: Lithium???
« Reply #1 on: Dec 17th, 2005, 9:27am »
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Some use Lithium successfully and some don't. I've been on it 3 times now, never has worked for me.
 
Hope you have better luck
 
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Re: Lithium???
« Reply #2 on: Dec 17th, 2005, 10:41am »
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It kicked the beast out of the door but unfortunately I'm allergic to it and get hives all over Sad
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Re: Lithium???
« Reply #3 on: Dec 17th, 2005, 11:46am »
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Not very positive so far then,,,,,,o well Undecided Sad
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Re: Lithium???
« Reply #4 on: Dec 17th, 2005, 12:11pm »
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Don't cross it off because of 2 negative replies.  There are many people who do benefit from lithium. Lithium is mostly used for chronic sufferers, but if you have become chronic, it is something to consider.  Jonny is one person that has done well with lithium, I believe.
« Last Edit: Dec 17th, 2005, 12:14pm by floridian » IP Logged
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Re: Lithium???
« Reply #5 on: Dec 17th, 2005, 1:13pm »
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No i will wait til i have more opinions to work on, i know 2 isnt a very big sample Wink
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Re: Lithium???
« Reply #6 on: Dec 17th, 2005, 1:38pm »
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Your right, Flo!  Kiss
 
I was chronic for 30 years, 15 years ago I tried Verapamil and it did nothing.....I stopped taking it and tried Lithium and it also did nothing, my Doc then told me to take both of them (Said it was the chronics cocktail) at the same time.
 
Within two weeks more than 80% of my HA's never even showed up, I was finally living a decent life again.....Six years ago I found this message board and learned of 02, any break through HA's were killed with that....so I was nearly PF, but not completly
 
One year ago the HA's just stopped, I stopped taking all meds and have been PF since....Why?, I dont know and I really dont care as to why.....IM FREE!!!!
 
I hope it works for you as it did for me....good luck my friend!!
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Re: Lithium???
« Reply #7 on: Dec 17th, 2005, 2:47pm »
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Thanks Jonny,
 
Gives me hope that this damn thing MIGHT someday go away.
 
Jon
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Re: Lithium???
« Reply #8 on: Dec 17th, 2005, 3:34pm »
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on Dec 17th, 2005, 2:47pm, jon019 wrote:
Thanks Jonny,
 
Gives me hope that this damn thing MIGHT someday go away.
 
Jon

 
I like the name, Bro Grin
 
Charlie didnt suffer as long as I did and he has been PF for 14 years I believe......Never give up Bro, I didnt!
 
This shit could end for you tomorrow......just like it did for me.
 
Peace bro
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Re: Lithium???
« Reply #9 on: Dec 17th, 2005, 4:22pm »
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Yeah Jonny,
 
Sometimes you feel like you are in the right place at the right time, like I do here.
 
It's almost spooky. My beloved Grandma was known to us as "Nannie", she called me "Jonny". Now I've found a nani and a Jonny and a whole bunch more when I needed it most.
 
When my Nannie went to church (after I stopped) I used to ask her, "Will you say a prayer for me?" She always answered, "Oh yes, you NEED it!"(with a twinkle in her eye, but I knew she meant it).
 
Prayers do get answered. Sometimes the pain goes away, sometimes it doesn't. Sometimes you gain strength from what you have to overcome and sometimes you just survive. And SOMETIMES, a guy  
like DJ and a family like ch.com are there to give you what you can't get anywhere else!
 
Merry Christmas,
 
Jon
« Last Edit: Dec 17th, 2005, 4:22pm by jon019 » IP Logged
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Re: Lithium???
« Reply #10 on: Dec 17th, 2005, 4:25pm »
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Lithium is a well known drug that many people have done well with, & according to many articles I've read it seems to be the first choice.
 
It might work because cluster is a periodicity disorder and it's supposed to get your body clock back on track.
 
 I didn't have any luck with it, I've been chronic for 12 years and no combination has worked for me, but that doesn't mean it won't for you.
 
From personal experience though, I can tell you that some of the other preventative drugs make Lithium look like a walk in the park!
 
Your doctor has a very good reputation. I'm making a rather long pilgrimmage to him very soon.
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Re: Lithium???
« Reply #11 on: Dec 17th, 2005, 8:51pm »
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Chronic over 11 years - spread over each day = 1,200mg Lithium Carbonate, combined with 720mg Verapamil and then 9mg Melatonin 30-45 minutes before bed has helped me significantly.  Spent a lot of time experimenting with dosages and best times to take each dose so keep good records and be prepared to work at it until you find a mix/dosage level and schedule that works.
 
Good luck and best wishes
 
Tom
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Re: Lithium???
« Reply #12 on: Dec 17th, 2005, 10:09pm »
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I did very well on it (relatively) for a few months.
I was on a very low dose but that is because I am very sensitive to most medications.
It helped stabilize my attacks.
Then literally out of the blue I started having adverse effects and gradually devloped toxicity and had to come off.
If it works you should know quickly.
 
good luck!
 
eric
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Re: Lithium???
« Reply #13 on: Dec 17th, 2005, 10:55pm »
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Here's a good read on Lithium pulsing:
 
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1105293621
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Re: Lithium???
« Reply #14 on: Dec 18th, 2005, 9:46am »
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on Dec 17th, 2005, 10:09pm, E-Double wrote:
I did very well on it (relatively) for a few months.
I was on a very low dose but that is because I am very sensitive to most medications.
It helped stabilize my attacks.
Then literally out of the blue I started having adverse effects and gradually devloped toxicity and had to come off.
If it works you should know quickly.
 
good luck!
 
eric

 
Eric makes a good point here.  Lithium (like most meds. for treating CH) can be dangerous.  Constant monitoring is necessary i.e., blood serum levels/liver function tests are critical to avoiding physical damage from the drug.  I'm 6'6", 228# so I seem to tolerate higher doses fairly well.    
 
In addition, being aware of lithium intoxication is important.  Maintaining sodium levels is important here - If you are involved in activities that result in excessive sweating you are at risk.  One of the first indications I've found for this condition is a sudden/slight blurring of vision, if you ignore this you could be in for trouble.  For me it's time to stop working/sit out, cool down and hit many of the sports drinks that contain a lot of sodium and potassium and other neat stuff.
 
Be careful and aware of the side effects of meds.  The potential effects of long term use of some of these meds. is bad enough without ignoring the warning signs of adverse reactions.
 
Tom  
 
 
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Re: Lithium???
« Reply #15 on: Dec 18th, 2005, 6:00pm »
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Lithium has been around forever.  The drs know how to watch for signs of trouble.  I took 900mg for two years and it made my 8 ha/day cut down to 4 ha a day.  Which was more manageable exspecially when you add oxygen therapy into the mix.  I had no side effects and loved being on it.  After two years it quit working at all for me and I found something else to work.  Good luck and dont worry.
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Re: Lithium???
« Reply #16 on: Dec 19th, 2005, 8:19am »
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Hi thanks for all your replies, lots to think about. I guess i expected to get mixed views on this, apart from anything else this affliction seems to be so idiosyncratic i sometimes wonder if it's the same disease, Grin and certainly what works for one may not work at all for another,,,, i don't have to make up my mind yet, nothing will happen til after th holidays, so thxx again for all your help,
 
 
txxx
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Re: Lithium???
« Reply #17 on: Dec 19th, 2005, 8:42am »
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Like Jonny I did the verapamil/lithium combo. It did work well for me. The side effects for me were minor hand trembles. But after while my short term memory was really bad. Thats when I stopped . I kinda needed that, I am now doing the seeds and am very happy so far with the results. I am a chronic but a Jonny wanta be too!! Grin
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Re: Lithium???
« Reply #18 on: Dec 20th, 2005, 2:04pm »
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Thxx again for all your replies, stiil havent decided, nothing will happen til after th holidays, but i'm probably inclined to try th LSA seeds, i already have some, i think will try them for xmas Grin,
 
 
tony
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Re: Lithium???
« Reply #19 on: Dec 22nd, 2005, 10:09pm »
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i did the lithium thing sad to say it did little for me also tried neurontin no go there either tried lots of stuff o2 didnt help either . 3-4 doses of lsa and im going on 4 months pf  Wink but like its allready be said research anything your gonna take and check to make sure your not mixing anything that might hurt ya you should be totally detoxed off of anymeds before trying lsa as to get the full benefit.
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Re: Lithium???
« Reply #20 on: Dec 29th, 2005, 2:25pm »
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Lithium has been my first line drug for about the last 10 years. Takes a couple weeks to get going but then it's about 90% effective at blocking the ha's. My cycles go 2 to 3 months starting with 5's and 6's so lithium has spared me the skull crushers. When I was at 165 lbs. I was taking 1200 mg a day. I'm at 190 now so I suspect when I go in this time he'll kick it up.
 
Side effects, you pee....a LOT...the first few days, it does make you a bit lethargic and you do need to get familiar with the signs of toxicity. You have to do a lot of blood work when you first start to get the levels right. Good luck I hope it does for you what it did for me!
 
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