Has any one tried using lithium to kill the devil. Couple of doctors have suggested using lithium as an alternative to various other medicines. However, I understand from some of the doctors that lithium should not be used at all as it has a lot of side effects.
Looking forward to your suggestions!

What side effects? I know some folks have to pee more frequently, and it can affect kidney function in some (hence the need for creatnin level tests from time to time), but I experience none of this. I have been taking 900mg of lithium per day for years. Every time I try to taper off of it, I start getting hit again.

I have never experienced the increased urination and my kidney function test always come back normal.

There are POTENTIAL side effects but they are well known. If you know what to look for and are careful to get regular blood work done to check on levels in your bod, the chance of any problem is very low.

Lithium has been around for many, many years and is a good med in the hands of a doc who knows his business. It's an especially helpful med for chronic CH.

I took 900 mg a day ( in three doses) of lithium for CH and it gave me a six month remission. (I'm chronic)  Then, it quit working, even when I bumped it up to 1200 mg a day.  I didn't notice any effects from the drug except that I seemed calmer, but the higher dosage made me sort of icky. Icky isn't a real word but I think it is very descriptive.

I gave lithium a serious try many years ago.  The side effects were too much for me to continue with it.  What I recall mostly was a lot of lethargy, tiredness, tremors, and and increase of my Raynauds symptoms.  It's my understanding that getting the blood levels correct can be quite a daunting task for a physician.

I found an interesting article a while back on the high rate of placebo effect regarding lithium for CH treatment.
"Cessation of attacks within 1 week occurred in two patients in each group, substantial improvement in 6/14 (43%) on placebo, 8/13 (62%; NS) on lithium."

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Yes, I've heard that hand tremor can be an initial sign of toxicity.

Pat, how much were you taking, if I may ask?

Joe uses Lithium very successfully during cycle. The tricky thing is the tapering off, never knowing if it's "time yet" or not. He does do the regular blood tests to check his chemical levels. Honestly, that with the O2 have been the life savers for him. Makes his cycles almost fully controllable.

I'd certainly give it a try. It's still my front line prevent, at 1200 mg a day blocks 70-80% of my hits and like Brew said, you pee a lot the first 2 weeks but that's about it. I don't notice much lethargy with it, nothing a cup of coffee doesn't counter.

As Bob said, every med has a potential side effect. The potential side effects vs. the success I've had withlithium made it a no brainer for me. Hope it works as well for you.


Joe

Brew wrote on Mar 6^th, 2009 at 10:22am:

Yes, I've heard that hand tremor can be an initial sign of toxicity. Pat, how much were you taking, if I may ask?

Hi Bill.  I found my old RX, and it was for 300mg of lithium carbonate taken twice a day for a total or 600 mg/day.

I seem to be sensitive to many of the drugs I've tried for CH maintenance.  This dosage didn't seem to be particularly high compared to the recommendations.  I'm episodic for around 6 weeks at a time.  So given that the results weren't good enough (in my case) to outweigh the side effects, I opted out of this treatment when that cycle ended.

pattik wrote on Mar 6^th, 2009 at 10:17am:

... I found an interesting article a while back on the high rate of placebo effect regarding lithium for CH treatment. "Cessation of attacks within 1 week occurred in two patients in each group, substantial improvement in 6/14 (43%) on placebo, 8/13 (62%; NS) on lithium." START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Interesting, but note that is NOT the traditional placebo effect, where believing makes things better.  The study was on episodics, and a large percent would be expected to improve within a few weeks, regardless.  Having a placebo is important to apply statistical control to a highly variable disease, but it should not be interpreted to mean that a placebo itself is effective.

I look at that data differently - in the first week, lithium beat no treatment by 20%.  If we subtract out the 40% that got better because they were going out of cycle from both groups that leaves 60% ... after removing the noise/placebo/randomness,  1 of 3 people taking lithium benefited. 1 out of 3 is not a silver bullet, but is meaningful. Especially for a week, when we know that many preventives take time to kick-in.

I don't think that study settles anything - where is the larger study that had people starting on lithium at the beginning of their cycle, and observed them taking it for longer than a week?  That would give a clear picture of how much it helps episodics.

Monty-I agree with you about the study.  I only said I found it interesting.
It seems that episodics may not be the right group to use unless the subjects have a firm history of longer cycles which would be able to show a signicant reduction.

Yes, conventional wisdom is that it seems to be more suited to the chronics, those with long cycles, and those that do not respond to other treatments.

Yes, conventional wisdom is that it seems to be more suited to the chronics, those with long cycles, and those that do not respond to other treatments

Just one more area where I insist on being UNconventional!!!

Joe ;)

As long as it works for you, vive la différence!

New Lithium user...

Just when I thought it was safe to taper off from verapamil, the hits started breaking through 960 mg/day. I'm well into month 4 of this cycle, and the "Why me?" feelings were coming up again.  

Last Friday, the Doc started ramping me up on LiCO₃ along with the verapamil, and as soon as I hit 600 mg, the hits stopped.  No aborts needed for 5 straight days and nights now.   Yessss!

I was going to just hold at 600 mg until I can talk to him next week, but I had a little shadow last night. I'm now at 900 mg, on the way to 1200 mg by next week, as directed.  

As for the side effects of the Lithium--not bad really, but I am reminded of an old joke.   Anyone ever read Yellow Rivers by I. P. Freely?      ;)  

Dennis

As for the side effects of the Lithium--not bad really, but I am reminded of an old joke.   Anyone ever read Yellow Rivers by I. P. Freely

I feel your pain!!! ;D

Joe

I took 900mg of lithium for 2 years.  It cut the number of ch hits down from 8/day to 4/day.  I had NO side effects.  I to was terrified at the option of going on lithium and did it as a last resort.  The dr convinced me that lithium was an old old drug and been around a long time.  If i started to have toxicity symptoms he and other drs would be very quick and immediate in identifing the symptoms and get me off the medicine asap.  He gave me a list of possible side effects as did the pharmacist and told me to call him if I had problems to report.  No blood tests nothing.  I would do it again if I had to.

I have read the posts with interest.  I am an episodic ch'er of 10 years, and was finally sent to see a neurologist in February, who said I needed to go on Lithium.  I too was a bit wary of this, but having gone on them, (now on 600 mg) my headaches appear to have ceased.  I am being a bit fatalistic by saying appear, because my cycle has lasted since last September until now, so I don't know if I was due to finish my cycle or whether the lithium has stopped them - but you kinow what - I don't care which it is, they have stopped for a time and I am in 7th heaven!!

jacquibim,

I am soooo glad to hear that, I too have been in the midst of my longest cycle ever. Started Nov.25 of O8. I just started taking the 600mg per dose two days ago. Your success gives me some hope, as does Joe's. I am a realist and know that it may not work for me, but I pray that it will.

Thanks for lifting my spirits......

Hopefully waiting.
Baer

I have documented my use of Lithium very accurately as well as a very close and comprehensive accompanying and monitoring by the Neurological Department as well as the Pain Clinic at the Medical Centre in St. Gallen, Switzerland, as well as by my GP in Wildhaus Switzerland, be it blood testing on a weekly bases, or be it other monitoring of behaviouristic and motorical status.....

I personally used Lithium for just over 4 month, at a (top) level of 900mg / day, Lithium, in combination with other maintenance medication that did provide me with some measurable relive, but with some very adverse effects from Lithium:
hands tremor, some loss of memory, very short tempered, somewhat lethargic, effects that (heavily) interfered at my daily occupation, that is, performing my work properly. Observation! (in my case only), seems that after starting the use of lithium the abortive effect of O2 was reduced, an anecdote that was insufficiently documented, and there for somewhat questionable, but still a valid observation.

I had to stop the use of Lithium due to the above mentioned adverse effects, and a strong recommendation of the treating Dr’s to stop the use of Lithium as the obvious adverse effects, and the observations made are over shadowing the positive results achieved, I have tapered off as required by the treating Dr’s.

I do recommend to anyone that is suffering from CH (be it CCH – Chronic CH or ECH – Episodic CH), any maintenance treatment or a combination of treatments that provides you with some, or comprehensive relief, is a good treatment! But! a treatment using prescribed pharmaceutical (as well as OTC - over the counter) substances needs to be properly monitored by a professional and competent medical personal, to avoid any short / long term adverse effects from the use of pharmaceutical substances, especially when using such aggressive substances as Lithium, in such a high dosses’, required in treating CH.


Michael


I provide a link to the Excel table, the Lithium treatment starts on the 18th of April 2008

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

and to my posts ((from reply No. 55) on the thread:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE