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KateA
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Question on New Meds: Lithium
« on: Jan 14th, 2005, 4:55pm »
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Hi All, {and thanks in advance for reading and helping}
I have had Chronic Clusters for 2 years now. I am seeing a world renowned Neuro in San Francisco who I love. We have been struggling with my treatment because I am not responding to many meds. I was doing well on 300 mg Topamax/day. Until, after being on it for about 9 months, I began to react to it and have burning in my legs and severe muscle spasms and pains in my legs that precluded me from walking. It's been very rough the past few months.
 
So, we decided to take me down on the Topamax to 150 mg, and add in Verapamil 540mg/night. I was unable to tolerate the Verapamil. It made me too sick to my stomach.
 
So here's where we are...he wants me on 200 mg Topamax, add in Lithium. What can you all tell me about your personal experience with Lithium? I have read a lot of the medical info about it, but am interested in what you have to say.
 
Currently I am having attacks daily around 11am, 4pm, 1am and 4am. I am continuing to work and try to go about my life ( funny how you can learn to live with pain ), but it's a constant struggle. I just know there's a way out of this and that there's nothing else I can do but keep on moving. I'm hoping some of you have thoughts on the Lithium. It's the one drug I'm nervous to take. Any other ideas, or tips are so appreciated. I am up for {almost}anything. At this point I have to get some pain relief and some sleep—and yes, these litte bugger headaches wake me up in a drenched cold sweat even if I take an Ambien.  
 
Here's a list of things I've tried in the past to help myself!
 
Nutritionally, I have cut the following out of my diet and found that it helps:
Alcohol
Chocolate
Sugar
White flour
 
The following are what I have tried that don't work, so I don't take them now:
Imitrex
Imitrex Injections
Relpax
Axert
Zomig
Migrainal
Cafergot (oral and suppository)
Vicodin
Percocet (tabs and liquid)
Darvocet
Talwin
Fiorcet w/codeine
Tylenol 3
Relafen
Maxalt  
Oxygen
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Re: Question on New Meds: Lithium
« Reply #1 on: Jan 14th, 2005, 6:20pm »
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I've used Lithium a few times and I'm on it again. I've never had any bad effects from it. THere's an interesting topic "Lithium as Prophylactic" you should check out ... but most docs prescribe it as follows: 300mg 3 X daily and you'll need blood tests to regulate levels.
 
Have you ever tried an Occipital nerve block ?
 
also see > ClusterBusters.com
 
Unsolved
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JoeS
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Re: Question on New Meds: Lithium
« Reply #2 on: Jan 14th, 2005, 6:46pm »
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Quote:
these litte bugger headaches wake me up in a drenched cold sweat

 
I definitely identify with that.  I've never heard other people talk about the sweating, but I get it bad.
 
Never tried the Lithium.  But you should give oxygen another chance.   It didn't work for me at first, but I was using the wrong type of mask.   Read the oxygen info in the link on the left for some good hints.
 
Joe
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Re: Question on New Meds: Lithium
« Reply #3 on: Jan 14th, 2005, 6:58pm »
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Hi Kate. I take a low (150mgs) dose of lithium along with Verapamil and Neurontin. I'm chronic and the combo seemed to keep most of my hits pretty low. I get hit mostly during the day and find that the lithium makes me feel weird if I take it during the day. I take it at bedtime. It seems the combo is becoming less effective as I am getting hit harder lately. I'm going to talk to my dr about upping the lith and the verap to 480mgs. Let us know how it turns out for you. Pain free wishes, nani
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Re: Question on New Meds: Lithium
« Reply #4 on: Jan 14th, 2005, 8:51pm »
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Lithium had been a godsend for me...90% of my attacks never arrive... I'm chronic & before lithium i would get hit 2-3 times a day, every day for around 5 years.
I take 480 mg verap and 900mg lithium with no side affects at all.
 
ood luck,
 
Kev
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Tara Ann
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Re: Question on New Meds: Lithium
« Reply #5 on: Jan 15th, 2005, 1:31am »
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I'm currently on Lithium (300 mg 2x a day) and Verapamil (240 mg 2x a day) not noticing any bothersome side affects.  Just came of a prednisone taper that gave me awonderful break, so not sure if the lith and verap are gonna do their "magic" yet.
 
Also Unsolved mentioned Occipital Nerve block.  I've had this done on 2 seperate occasions.  Its practically painless, and worth a try.
« Last Edit: Jan 15th, 2005, 1:33am by Tara Ann » IP Logged

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Karla
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Re: Question on New Meds: Lithium
« Reply #6 on: Jan 15th, 2005, 9:43am »
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I was chronic getting hit 8x a day.  I took 900mg a day of lithium and it cut down the number of ch a day from 8 to 4. and also reduced there severity.  
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Re: Question on New Meds: Lithium
« Reply #7 on: Jan 18th, 2005, 11:26pm »
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I have been on lith verap combo for several years usually does the trick, occasionally adding neurontin to the mix when  the terrible 2 don't cut it. For me I do better when taking them before bed. Lithium was really hard on my stomach, so I take diphenoxylate about a hour before the lithium, it keeps me from having to run to the bathroom the next morning 10 times.
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