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        New Message Board Archives >> Jan-Mar 2003 >> My Neuro finally agrees that I have CH
        
(Message started by: athos12 on Feb 17^th, 2003, 3:36pm)

Title: My Neuro finally agrees that I have CH
Post by athos12 on Feb 17^th, 2003, 3:36pm

On my last appointment with my neuro he finally agreed with the Mayo Clinics diagnosis that I have Chronic Clusters.... Ding the light went on.

He stopped the Topamax - Nasty struff- and started me on Lithium... I hope that is better. Topamax increased my CH and gave nasty depression... I think it was the topamax cause when I started it the CH increase and depression started.... I feel ata least a little relief my CH are not as frequent.

My neuro didn't want to think that I had CH because of the nausea and photosensitivity that I have... But all of my other symptoms point to CH. The pain the pacing and the cycles...

I still get them frequently, but not daily now, just about 3 times a week.

Anyone have exprience with Lithium... What are the potential problems? and how long does it take to work?

What should I expect from it?

--Athos

Title: Re: My Neuro finally agrees that I have CH
Post by echo on Feb 17^th, 2003, 3:41pm

Glad to read that your neuro joined the ball game. That will make your treatment much better.

Nothing to offer on lithium, but others here will have infor for you.

Title: Re: My Neuro finally agrees that I have CH
Post by jonny on Feb 17^th, 2003, 3:57pm

on 02/17/03 at 15:36:35, athos12 wrote:

Anyone have exprience with Lithium...

Ummmm, I think I have alittle exprience with Lith. Having takin it everyday for more than 12 years I think im qualified to answer any questions you have. ;D

Takes about a week to get into your system, after 30 days of taking it insist on a liver function test if it is not offered to you. This will tell you how your liver is doing on the Lith, some people can handle Lith and some cant so get the test and dont take no for an answer.

If you will be taking it everyday for more than 6 months you will want to have the same liver test every 6 months, ibuprophen(SP?) and a beer or two will mask the test and it will come back bad so lay off that before the test.

Sideffects for me are nill, slight hand tremors if I go above my norm which is 600 mgs.

Good luck and E-mail me if you have more questions.

...................................jonny
Honkithium

Title: Re: My Neuro finally agrees that I have CH
Post by Jim R on Feb 17^th, 2003, 4:02pm

Athos,

Yup, Jonny has some good lith info - I was on it for 2 cycles and had to stop because I was going toxic on it with intractable projectile vomiting - but it did work, at least for that first year and my neuro wants me to go back on it again next cycle. He tried me on the Topamax and you're right - NASTY stuff and didn't do a bit of good for my CH's. Right now and for the latter half of the last cycle, clonodine helped my CH's and my blood pressure.

Good luck on the lithium

Jim R

Title: Re: My Neuro finally agrees that I have CH
Post by Jim R on Feb 17^th, 2003, 4:05pm

Athos - I forgot to tell you - I was on 1200 mgs. day (the same dosage as for bilpolars) and had a lot of hand shaking and other more subtle symptoms, but when it was working, I couldn't have cared less about the sides as long as I didn't get the CH's And what Jonny says is right about the testing to get your lith levels - can be very dangerous if you're too high in blood content. Also, do not change your salt intake - it can have deleterious effects. - Jim R

Title: Re: My Neuro finally agrees that I have CH
Post by jonny on Feb 17^th, 2003, 4:14pm

on 02/17/03 at 16:05:45, Jim R wrote:

Also, do not change your salt intake - it can have deleterious effects. - Jim R

Thanks, Jim

I forgot to add that, Lithium robs the body of sodium so dont decrease your salt intake, if anything eat more salt.

I love salt.....LOL

If the Lith dont work for you try adding Verapamil, this combo has been the difference between life and death for me.

...............................jonny
SnowHonker

Title: Re: My Neuro finally agrees that I have CH
Post by athos12 on Feb 17^th, 2003, 5:26pm

cool thanks for the info... I have taken verapamill before, but not with lithium....

I will tell my Neuro..

Title: Re: My Neuro finally agrees that I have CH
Post by Ann on Feb 18^th, 2003, 2:01pm

Hey Athos!

I'm on the lithium,verapamil combo as well. Have been since November. It took a while for it to kick in....maybe a week and half, but once it took hold I started getting hit less and less frequently, until finally I haven't been hit since January 14th!!! EEIIIHHHAAA!!!

One thing that freaked me out though was that when I took an imitrex injection I was hit with wicked nausea. It weren't funny and I was wondering what the hell was going on. I think it was just my body getting used to the lithium and I haven't felt like that since late November. Our man Jonny is the one to answer all your questions about lithium. He was there for me when I was freaking out. ;D

good luck
hugs
Ann

Title: Re: My Neuro finally agrees that I have CH
Post by ZAIRA on Feb 18^th, 2003, 3:13pm

Athos, I’m afraid to read you are depressed. I’m with you!
Zaira :-* :-* :-* :-*

$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$

My experience with lithium:
For me it worked but I got high dosages (1200 mg). Jonny gave you GOOD info.

Jonny :): your doctor tell you to do the test for yr. liver; and what about yr. thyroid? My doctor says that lithium can also give problems to the thyroid.
My doctors recommends me, when I’m toking lithium, to drink about 3 litres water because lithium can be eliminated only by urine. Is it correct? ???

Thanks for yr. answer.

Love ya,

Zaira

Title: Re: My Neuro finally agrees that I have CH
Post by jonny on Feb 18^th, 2003, 3:42pm

Zaira,

I read some where a few years ago that drinking to much water is not good when taking Lithium, I dont remember why but I know I read that.

Yes, they test more than just the liver.

......................jonny

Title: Re: My Neuro finally agrees that I have CH
Post by oringkid on Feb 18^th, 2003, 3:45pm

Jonny, probably due to the salt! If you drink too much water it will wash out the salt. If you need to maintain the sodium in your body I would think that too much water would screw that up.

Just a thought.......

Sher

Title: Re: My Neuro finally agrees that I have CH
Post by Lenny on Feb 18^th, 2003, 4:04pm

Ditto to what Jonny and Zaira had to say. The combo. of the Lith. and Ver. does work wonders. Blood work is extremley important,this will be the second time in the last couple of years that i have to stop taking it ( :'( :'(Lithium )due to problems ( blood work ) tomm.will be my last day on preventative meds, ( hopefully on thursday the party wont start ::) ). For myself one without the other is worthless,put them together and life can be good. Good Luck and hopefully many PFDAN comming your way.

Title: Re: My Neuro finally agrees that I have CH
Post by jonny on Feb 18^th, 2003, 4:37pm

on 02/18/03 at 15:45:02, oringkid wrote:

You are correct, Miss Kid!!!

Thats what I read.

..................................jonny
(Good post, Lenny, hope everything is ok, Dude)