Hello I am new here and just wanted to say hi. I am dating a sufferer of cluster headaches and thought that this would be a good place to get some good info on cluster headaches though I have done a good bit of research myself. I do have one question to start off with. My man has been going to a neurologist for a few months now and none of the medications have helped him at all. The DR. said his next course of action is to try lithium. So has anyone every tried this treatment was it effective and did the medication have many adverse side effects. Obviously I know a little about lithium and am a little worried.
Thanks Bri

Don't be worried! ;)

I'm an episodic sufferer, 32 years, I use 1200 mg a day lithium as my prevent while on cycle. It used to reduce my attacks by 70-80%. Over the years it's been reduced to about 60-70% of my attacks. At 1200 mg a day you would never know I was taking it. Forget the hollywood stereotypes of mouth breathing zombies! I worked as a deputy sheriff on patrol at those levels, even my beat partners couldn't tell when I was and wasn't taking it.

It takes a little bit of blood work to establish his level as it's not based on body size so much as how your body processes it. He will find he pees a LOT the first 2 weeks or so, pay attention when the doc tells him to up his fluid intake. It will make him feel a little lethargic the first few weeks, but nothing a cup of coffee will not overcome.

I've been using it 15-20 years......we were trying to remember when I started it and I haven't pegged it down.....and so far I have suffered no ill effects from it. It's been a silver bullet for me, hope it proves as efective for him. Takes 10-14 days to kick in for me.

Does he have oxygen yet? If you haven't noticed, it's sweeping the board it's been so effective for so many. Thanks for doing the online legwork, we're awfully fond of our supporters around here!

Joe

I echo everything Giuseppi said from experience with my sufferer and lithium. 

It affects everyone differently - my clusterhead was more tired than anything else while on Lithium.  But tiredness seems to be a side-effect to almost any drug prescribed for these dastardly things.  His doc also scheduled blood tests to test lithium blood levels every 3 - 6 months.

As a supporter I'm glad to see you investing yourself in researching this affliction rather than running away.  Most of the long-time supporters here are married to clusterheads.  It's refreshing to see a person like you who doesn't shy away from the sufferer or the condition. 

Hi and glad you are here!  Your guy is one lucky fella to have such a caring and concerned girlfriend..I'm sure he already knows that.  I've been a supporter for 20 yrs and you are going to be a tremendous help to your guy.  You've already started doing the research which is great!

Has he had a firm diagnosis from a headache specialist that he has CH, and other tests done? (there's a thread under medications & therapies called "Cluster-like Headaches you might want to read...I mention this because it's a good read and you mention that he's tried many treatments that have not helped him at all)  If that's been established there are many different treatment options.  My hubby has no experience with lithium so I can't comment on that, although others have had great success with it.

The best thing you can do is be his advocate.  If he doesn't mind go to his doc appts. with him.  You're getting educated so ask questions and take notes.  Find out from him before a hit what he needs from you when he gets one.  Some like to be left alone, he might need you to hold an ice pack on his head, close the drapes, put a fan on his face, etc...find out BEFORE how you can help him during.

You'll find alot of things on this site he can use for abortives like OXYGEN...definitely talk to his doc about this..and others like red bull, and melatonin to help with night hits. 

There are a number of us supporters on this site..and they've all been extremely helpful and kind to me.  I extend the same to you.  If have questions, or need to vent, we're here for you...you can do it on the board or by PM.

Take care and welcome!!   :)

Hi Bri - I saw Guiseppi responded - I'm his supporter and will echo that Lithium has been very effective for him. I know he has less energy when taking it, but that's a huge tradeoff for the CH's. Important to follow up with the blood work. The neuro may start him on a dose that after a couple weeks may not seem strong enough. Work with the neuro on dosages, and remember to give it a chance.

Welcome to the board!

Christy

Welcome Bri!

I'm a supporter too; I saw my husband through many a hit before I married him, and I didn't bat an eye at saying "I do!" to that man (with some pretty emphatic head nodding at the same time turns out, I noticed that from watching the wedding video... anyway) This condition does not define our relationship or him as a person. My husband is hilarious, caring, a talented musician, earned himself a double major in History and Anthropology while taking care of our newborn daughter and working nights, and hands down, no doubt about it my best friend. Why do I say all this? To let you know there is a good life to be had by both of you- supporter and sufferer. And that he, as a man, is not defined by this condition. (But it sure seems like you already know that!) Perhaps we both took the "sickness and health" vow a bit more solemnly, but my point with all of this is it is SO worth it.

Anything, and anyone, worthwile is worth fighting for- and I have fought tooth and nail to find my husband relief and help. I have been able to do both. Your role as a supporter can be pivotal. There have been times that all of his energy goes into surviving the hits- that is when your energy can go into research and helping him. I got us set up with a welding O2 set up and 9mg per night of melatonin, as well as Red Bull for shadows. I had to take the reins of that till he got his feet under him again, but he never suffered over a kip 4 from then on. Supporters don't have just watch and suffer too (though god knows I did enough of that before we found this place!) but you can have an active hand in his treatment.

Please feel welcome to post on the main boards- we'd love to see a run through of the medications and doses he's tried so we can bounce ideas off you!

Good for you for putting the effort into this!

Bravo Lauren, what a wonderful post! I couldn't have said it that well! We are the ones that have the will to help our dear ones overcome. When they're getting hit they may lack the will to fight for themselves, but we can surely do it for them!

Thanks for being here and participating on the Supporters Corner.

I agree very nice post,Lauren..

Ah shucks guys, thanks!

Happiness, joy, and painfree days to all!

Lauren17 wrote on Nov 8^th, 2010 at 9:19am:

I'm a supporter too; I saw my husband through many a hit before I married him, and I didn't bat an eye at saying "I do!" to that man (with some pretty emphatic head nodding at the same time turns out, I noticed that from watching the wedding video... anyway) This condition does not define our relationship or him as a person. My husband is hilarious, caring, a talented musician, earned himself a double major in History and Anthropology while taking care of our newborn daughter and working nights, and hands down, no doubt about it my best friend. Why do I say all this? To let you know there is a good life to be had by both of you- supporter and sufferer. And that he, as a man, is not defined by this condition. (But it sure seems like you already know that!) Perhaps we both took the "sickness and health" vow a bit more solemnly, but my point with all of this is it is SO worth it. Anything, and anyone, worthwile is worth fighting for- and I have fought tooth and nail to find my husband relief and help. I have been able to do both. Your role as a supporter can be pivotal. There have been times that all of his energy goes into surviving the hits- that is when your energy can go into research and helping him. I got us set up with a welding O2 set up and 9mg per night of melatonin, as well as Red Bull for shadows. I had to take the reins of that till he got his feet under him again, but he never suffered over a kip 4 from then on. Supporters don't have just watch and suffer too (though god knows I did enough of that before we found this place!) but you can have an active hand in his treatment.!

Great post Lauren...

Ditto, although my hubby's started after the "I Do's"...still stuck around, I'd like to think he'd do the same.  Wife, Friend, Advocate, Sweetie, Give my Hubby an Imitrex or I'll rip your eyes out kinda girl, we call ourselves many things. 
I think we should come up with a name for this special club of ours.  Any suggestions?  How about CHICKS Club (Cluster Headache International Caring, Kind & Supportive Club)   ;D
Sorry guys..that leaves you out...although..I won't go down the road of another name for a rooster (as opposed to a chick)  ;) you fellas who support can figure out your own club name..anyway, just a thought.  Come on girls, let's hear it!

Hmmm, well, there is always:

Supporters Helping In Treatment

oh wait- can't do that! bwahaha! I'm no help, that's all I can come up with! ;D

haha, that's funny!  ;D

We could call our male affiliate (keeping in the spirit of barnyard animals)

Clusterhead Outreach, Caring, Kind & Supportive

Same mission statement, only gender specific!    ::)

his wife wrote on Nov 10^th, 2010 at 2:47pm:

haha, that's funny!  ;D We could call our male affiliate (keeping in the spirit of barnyard animals) Clusterhead Outreach, Caring, Kind & Supportive Same mission statement, only gender specific!    ::)

Thas messed up!!! ;D ;D ;D

his wife wrote on Nov 10^th, 2010 at 2:47pm:

haha, that's funny!  ;D We could call our male affiliate (keeping in the spirit of barnyard animals) Clusterhead Outreach, Caring, Kind & Supportive Same mission statement, only gender specific!    ::)

It's official you are not right in the head.. ;D

How long did it take that mind of yours to come up with that? ;D

haha...about 2 seconds, can't ya tell?   ;D   I'm not exactly the intellectual type.   :D

How about SOP - Support our Peeps.

I like that too!   :)