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New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Lithium???
(Message started by: Changeling on Dec 17th, 2005, 9:21am)

Title: Lithium???
Post by Changeling on Dec 17th, 2005, 9:21am
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 :( >:(.

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

Title: Re: Lithium???
Post by unsolved1 on Dec 17th, 2005, 9:27am
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

UNsolved

Title: Re: Lithium???
Post by Jasmyn on Dec 17th, 2005, 10:41am
It kicked the beast out of the door but unfortunately I'm allergic to it and get hives all over :(

Title: Re: Lithium???
Post by Changeling on Dec 17th, 2005, 11:46am
Not very positive so far then,,,,,,o well :-/ :(

Title: Re: Lithium???
Post by floridian on Dec 17th, 2005, 12:11pm
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.

Title: Re: Lithium???
Post by Changeling on Dec 17th, 2005, 1:13pm
No i will wait til i have more opinions to work on, i know 2 isnt a very big sample ;)

Title: Re: Lithium???
Post by Jonny on Dec 17th, 2005, 1:38pm
Your right, Flo!  :-*

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!!

Title: Re: Lithium???
Post by jon019 on Dec 17th, 2005, 2:47pm
Thanks Jonny,

Gives me hope that this damn thing MIGHT someday go away.

Jon

Title: Re: Lithium???
Post by Jonny on Dec 17th, 2005, 3:34pm

on 12/17/05 at 14:47:13, jon019 wrote:
Thanks Jonny,

Gives me hope that this damn thing MIGHT someday go away.

Jon


I like the name, Bro ;;D

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

Title: Re: Lithium???
Post by jon019 on Dec 17th, 2005, 4:22pm
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

Title: Re: Lithium???
Post by AllClusteredUp on Dec 17th, 2005, 4:25pm
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.

Title: Re: Lithium???
Post by burnt-toast on Dec 17th, 2005, 8:51pm
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    

Title: Re: Lithium???
Post by E-Double on Dec 17th, 2005, 10:09pm
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

Title: Re: Lithium???
Post by Mr. Happy on Dec 17th, 2005, 10:55pm
Here's a good read on Lithium pulsing:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1105293621

Title: Re: Lithium???
Post by burnt-toast on Dec 18th, 2005, 9:46am

on 12/17/05 at 22:09:12, 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



Title: Re: Lithium???
Post by Karla on Dec 18th, 2005, 6:00pm
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.

Title: Re: Lithium???
Post by Changeling on Dec 19th, 2005, 8:19am
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, ;;D 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

Title: Re: Lithium???
Post by Wendy on Dec 19th, 2005, 8:42am
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!! ;;D

Title: Re: Lithium???
Post by Changeling on Dec 20th, 2005, 2:04pm
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 ;;D,


tony

Title: Re: Lithium???
Post by cazman on Dec 22nd, 2005, 10:09pm
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  ;) 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.

Title: Re: Lithium???
Post by Guiseppi on Dec 29th, 2005, 2:25pm
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!

Guiseppi



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