My neuro wants me to try Lithium as the other meds we have tried have not worked very well.  I would appreciate hearing about anyone's experience.

Thanks,
Bill

So? Try it what can it hurt? I put off trying it and I paid for it with PAIN!

Just try it ;)

Edit to add; I started at 900 mg and worked my way down to 450 mg a day. I am very drug intolerant and get the same effect as 900 without the SE’s. Hope this helps!

Roland.

 It helped alot in the past it is worth a try and I didn't notice any side affects untill I went over 900mg.
  Good luck,  Phil 8-)

It's been my silver bullet for many many years now. I'm 48, male, episodic for 30 years. I use 1200 mg a day of lithium while on cycle. The first couple of weeks you pee....a LOT! It's a salt and it takes a bit for your body to stop dumping it as fast as it comes in. Listen to the doc when he tells you to up your fluid intake a bit. I get a little lethargic the first couple weeks, nothing like a zombie mind you, a cup of coffee is all it takes for me to eliminate the lethargy.

After I've been on it 2 weeks it blocks 80-90% of my attacks, depending on how strict I am about avoiding my triggers. I use oxygen and the occasional imitrex jab for the break thrus.

Hoping you enjoy the same level of success with it I have, it's truly given me the upper hand on my CH.

Guiseppi

Bill:

Like the others here, I recommend you try it!  It's cheap, and often effective alone, or in combination with other prevents.

I had to discontinue using it due to side effects.  A few cautions that I remember are:

Keep your fluid intake up
Keep your intake of table salt relatively stable
Get frequent blood lithium levels taken until you have a stable level in the theraputic range.

The side effects that I had were an odd metalic taste in my mouth and slurred speech, almost like my tongue was too big for my mouth.

Wishing you well,

Ray

Edit: to fix a typo

Dangit Ray I actually meant to include that in my post and got distracted...old timers disease...You do have to get a lot of blood work the first time you go on it. Everybody metabolizes it differently, so they keep upping your doseage while monitoring the levels of it in your blood until they hit the therapeudic range.

Pay attention to the symptoms of lithium toxicity, we use it at levels far lower then those that use it for mental issues, so we rarely run into that problem, but best to be aware anyways.

Also, this is not a medication where you play fast and loose with the dosing. Only increase or decrease doseage under a doctors care and guidance. That being said, it's my magic bullet to keep the beast under wraps, really hoping it proves as effective for you.

Guiseppi

Thanks for all the input!  Good to hear I won't run into any mental problems like slurred speech and getting distracted ;)

I must say there is a bit of a stigma associated with taking these types of drugs, but I can get over that pretty quick.

He has me starting at 300mg and going up 300mg the next week and possible up 300mg if needed the following week.  He took baseline blood tests today and wants to follow up with another blood test after I have established my dosage and will revisit him then.

I have been detoxing and will try seeds again and then start the Lithium in 2 weeks unless the seeds do their work.

I felt the same way until I saw it listed on the lithium sites as an aproved CH treatment.

Best,

Roland.

so far i love my lithium...been chronic for 10 yrs and it has all but cut out my day time hits....im taking 1200mg a day and honestly if there are side effects then maybe i just done notice them,
maybe im to caught up in the fact im not constantly poking imitrex needles in my leg ..hopefully it will keep working unlike all the other prevents in the past....
wife says im not as crazy :D as i used to be either

-jason-

I just read that you should not have large amount of caffeine and avoid excessive sweating caused by hot weather or exercising.

Is this true?  I love my coffee, especially for the shadows and do like to break a good sweat at times.

billyjoe wrote on Nov 20^th, 2008 at 10:05pm:

I just read that you should not have large amount of caffeine and avoid excessive sweating caused by hot weather or exercising. Is this true?  I love my coffee, especially for the shadows and do like to break a good sweat at times.

I drink a pot and a half a day. ;) But I always stop at noon.

I don't change my workout routine on or off cycle, and while I don't drink a pot a day  ;D I down several cups of coffee a day on and off cycle, haven't had any issues.

I'm in law enforcement so I tell very few people when I'm on it...yeah...there is just a bit of a stigma attached to it.  ;) People talke REAL softly around you when they hear you're on lithium! :P

Guiseppi

Guiseppi wrote on Nov 20^th, 2008 at 11:43pm:

People talke REAL softly around you when they hear you're on lithium! :P Guiseppi

Guiseppi may be right if he is alluding to keeping the lithium use from your coworkers because even if you explain it to them, they may still think you are bi-polar. So take that for what it's worth.

Roland :D

wrote on Nov 20^th, 2008 at 10:09pm:

[quote author=4A4144445142474D280 link=1227215684/9#9 date=1227236717]I just read that you should not have large amount of caffeine and avoid excessive sweating caused by hot weather or exercising.

I don't see why we need to restrict caffeine unless it's a trigger.  I avoid sweating or anything remotely "physical" during episodes, including a bath or anything that dilates blood vessels.  Heat is definitely a trigger for me, and normal cooking as in sticking my head in the hot oven can trigger CH.

If that doesn't apply to you, no sweat (no pun intended).  Many find it helpful to keep regular exercise or hot showers whereas I really need to restrict physical activities and heat but receive acupuncture and massage instead to keep the blood flow going on my CH side to avoid a "blood congestion" in my head LOL.  It's in an old medical journal that suggests we should avoid exercise for the reason that applies to me but obviously not to all (nothing does!).

for the reason that applies to me but obviously not to all (nothing does!).

Aint it the truth, the most frustrating aspect of our "condition"!!!

Guiseppi

I took lithium for years.  It was my majik bullet.  It cut the number of attacks down in half and the severity of the remaining ones was a lot less and much more manageable.  I was scared to take it at first but so glad I took the chance on it.  I had no side effects and took 900mg.  After a few years it quit working for me so I quit taking it.  I hope it is your majik bullet also.

billyjoe wrote on Nov 20^th, 2008 at 4:14pm:

My neuro wants me to try Lithium. I would appreciate hearing about anyone's experience. Thanks, Bill

To Lithium (Quilonorm retard) treatment, it did help me, marginally, but I did get some what a positive effect at a doss of 900mg/day
But with the Lithium, I encountered some adverse effects: hands tremor, some loss of memory, very short tempered, somewhat lethargic.

An observation: the effect of O2 as an abortive seems to diminish with the use of Lithium (for me!),
I had to reduce radically the use of Lithium due to the adverse effects that interfered in my daily routine at work, and some what at home. So looking at the gained effect vs. adverse effects made my treating Dr’s reduce the use to below 400 and the stopped totally as it was below the effective “window” for Lithium to be effective for CCH
This is my personal experience with Lithium, this should not make any one forgo looking into the use of Lithium, I would just stress the need for close medical observation when useing Lithium.

Michael

Glad to have found your post, as i have been considering asking my neuro to start me on it soon in anticipation of an impending attack.
as to why you're not supposed to have coffee or exercise, it is related to salt loss. the coffee makes you pee, hence salt loss, and excessive sweating does the same thing.

many people who take lithium for mental health issues drink gatorade in the summer or when working out to prevent electrolyte imbalances.

what i am most curious about is this: if one does not have a chemical imbalance in the brain ( bipolar), can taking lithium alter those chemicals from their normal state and CAUSE a mood disorder?

Good question! I have several relatives who suffer from bi polar disorders. I haven't suffered from them yet, and thus far lithium hasn't seemed to cause me any problems in that area.

I've often wondered if my relatives and I have the same chemical imbalance, that just manifests itself differently, them with bi polar issues, me with CH. Nothing I've studied, researched etc, just curious.

Joe

Guiseppi wrote on Dec 12^th, 2008 at 5:38pm:

Good question! I have several relatives who suffer from bi polar disorders. I haven't suffered from them yet, and thus far lithium hasn't seemed to cause me any problems in that area. I've often wondered if my relatives and I have the same chemical imbalance, that just manifests itself differently, them with bi polar issues, me with CH. Nothing I've studied, researched etc, just curious. Joe

i would be so eager to learn more about the serotonin connection to CH's and wonder if it might explain just such a connection.

also, i am worried that when i STOP taking lithium, a mood disorder might develop. have you ever gone off of it?

wildhaus wrote on Nov 24^th, 2008 at 1:07pm:

I encountered some adverse effects: hands tremor, some loss of memory, very short tempered, somewhat lethargic.

Ditto…on what Michael said.

I have tried two times to quit lithium and my K10’s are back in two days so I cannot give a long-term answer to the question. I do feel a lot happier for the first day but had to continue use.

I highly doubt that any psychological impact will occur unless there was an underlying condition from the start that was aggravated.

PFW’s,

Roland. ;)

I take lithium ONLY while on cycle for the last 15 years, 8-12 weeks at a time, most recently for 8 straight months. I haven't encountered any difficulty when I go off. Hope that helps.

Joe

I had a terrible time with Lithium. It cranked my hits up to near constant- 45 minutes of hit, 45 minutes off, nonstop, no sleep until I got so tired I forgot a dose and then would get better. A relative noted I only felt better when I forgot it. I attributed it to being the hottest week of the year, and stayed on it.

Eventually my pharmacist said that he didn't know me that well but that even he could see that it was having a terrible effect on me. I was exhausted, tearful, and constantly throwing up. The only thing I could keep down was licorice and gingersnaps. Family kept asking me if I was pregnant because I had never been so emotional before, not to mention the chronic sickness. I cried when he told me I should stop taking it because I felt it was my last best hope to either get better or possibly go back to being episodic. That was probably the worst depression I had since being diagnosed.

If it works for you, go for it.  But keep a pain journal in case it makes you so out of whack you can't be objective about it the way it did to me. Don't get a refill if it doesn't have a positive effect within the first few weeks.