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Topic: Lithium??? (Read 552 times) |
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MarkHW
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I am a chronic cluster sufferer and Verapamil hasn't shown much signs of success.
I have been on prednasone for about 25 days now... the first 12 I had no clusters, but after decreasing from 40 mg to 30 mg daily I started to get one cluster episode a day at a kip of about 6 or 7. They then started to increase to 2 a day and kip ratings of 7 & 8.
My eye has been twitching like mad, letting me know that it was only going to get worse.
So... I contacted my doctor... He put me on Lithium - 30 mg - twice a day.
I read the information under medical info. but wanted to get some first hand accounts.
How has lithium worked for anyone else?
What about side effects?
Anyone on it long term?
I'm also on paxil for mild depression and migraine - wondering if the lithium will give me the ability to drop my paxil use.
I just took it about 2 hours ago and already had a few minutes of the room spinning... figure my body'll get used to it and that will stop.
Thanks! Mark
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The clusterhead formerly known as williamsmh.
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MarkHW
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Re: Lithium???
« Reply #1 on: Jun 21st, 2002, 8:36am » |
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Hasn't anyone used Lithium?
Help!
Mark
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The clusterhead formerly known as williamsmh.
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kristi
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Sorry Mark, I really can't provide you with any information on lithium, only with support and sympathy. My husband tried it, but it did not seem to have any impact on his CH at all. He did not notice he experienced any side affects to it.
Good Luck!
Sending you painfree blessings!
K
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MarkHW
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Re: Lithium???
« Reply #3 on: Jun 21st, 2002, 9:22am » |
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Thanks Kristi!
Quick question... is he chronic or episodic?
The literature seems to say it is more effective for Chronic sufferers.
Thanks again...Mark
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The clusterhead formerly known as williamsmh.
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clavers
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Re: Lithium???
« Reply #4 on: Jun 21st, 2002, 9:33am » |
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I'm chronic and have been taking lithium for several years. At first it gave me a six month remission. Then it quit working. I still take it in combination with verapamil under the belief that it makes my CH less horrible.
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MarkHW
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Re: Lithium???
« Reply #5 on: Jun 21st, 2002, 9:55am » |
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A six month remission would be great! Of course, when it comes back that would suck!!
Did the doctor up the dose to try and make it work again?
How are your side-effects?
Thanks...Mark
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The clusterhead formerly known as williamsmh.
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Margi
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Re: Lithium???
« Reply #6 on: Jun 21st, 2002, 10:03am » |
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Hi Mark
Well, lithium is a common treatment for clusters. Usually the dosage is quite a bit higher than what you're taking.
My husband started at 600mgs a day, upped it to 900 after a week and his six month cycle ended within that first two weeks. No side effects at ALL.
It's hard to say if his cycle was due to end anyways, but this was the first cycle he has ever used medication of any kind. We think the meds prolonged his cycle. He did the prednisone burst, verapamil, imitrex - nothing worked. Lithium finally broke it. Who knows? 
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kristi
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Mark;
Scott is episodic, so if lithium works better for chronics, that is may be why it didn't work for him.
Hope you have terrific results with it though!!
PFDAN
K
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georgeb
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Just signed onto website for first time and saw your message...I've suffered from CHrer for about 25 years...chronic...for the last 3 years I've been on 300 mg litium and also verapamil sa (slow acting-it works the best) Been headache free for the 3 years with this combination of medications...unfortunately I just started (last week) having headaches again...1 a day...started at night and today had one during day (afternoon)
Don't know what has started them again...although I have changed my sleep pattern due to work...also am under great stress for past few weeks...
I have no idea if job and stress have affected headache free period...but will keep you posted
Let me know how you're doing ... by the way...the spinning stops after a while...you get used to it...
I've gotten used to the medication and being headache free it seems to work...
George
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MarkHW
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Re: Lithium???
« Reply #9 on: Jun 22nd, 2002, 12:56pm » |
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Thanks George!
I've been on the lithium now for a couple days and have had no headaches at all. I had a couple minor shadows, but no real cluster.
The spinning did stop... just a little tired about 2 hours after taking the pill.
I'm really hoping this is the answer!
Thanks...Mark
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The clusterhead formerly known as williamsmh.
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Greg_A
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williamsmh-- i was taking verap SR and lithium for a while with no relief... had the doc switch up the verap to regular... lithium is at 300mg a day... a few days after the doc switched the verap everything changed... NO PAIN... plus i got o2 too just in case a HA wants to show up... but i havnt had to use the o2 in about a month.
After 6yrs of chronic, 4-6 Ha/day i was so relived that finally something is working... i was at the end of my rope dealing with this stuff.
No side affects to mention... my pinky finger twiched for a few days then stopped.
g
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clavers
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Re: Lithium???
« Reply #11 on: Jun 24th, 2002, 8:14am » |
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I'm sorry about my slowness in getting back to you o' Williamsmh. You asked if my neuro upped my dosage after my 6 month remission went down the tubes. Yes he did, to 1200 mg a day. There was no effect. One thing, after taking lithium, even now, I find that I can take a couple of drinks with no ill results.
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Gddyupn
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I am an episodic sufferer. I currently take Lithium, Prednisone, Verapamil and Ergotamine. It works for me, and I suffer no lasting ill effects from the Lithium. I have been taking the Lithium for about 12 years now. At first it was just Lithium and Prednisone, but then that alone stopped working. I have to take them all for it to work. And if I decrease the prednisone to anything below 30mg, the headaches come back. I take two 300 mg lithium pills every day. I, too, can still have a couple of drinks with no ill effects. Initially I feel incredibly drugged, but after about 2-3 weeks, that feeling goes away and I only feel slightly drugged! Which is far preferable to the alternative. I've suffered from clusters for about 18 years and they come every 15 months like clockwork, and last for 2-3 months each cycle.
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MarkHW
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Re: Lithium???
« Reply #13 on: Jun 24th, 2002, 3:45pm » |
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This is all pretty good news!
I have been on Lithium now for about 5 days (I think) and have not had a cluster since I went on it!
Prednasone is the only thing that has been as good, but I have to be on 40 mg or more for it to keep the clusters away and, of course, my doctor doesn't want me on that for too long.
5 days without pain is like a miracle!!! The most I get is about 5-7 days twice a year. I can tell that I am still clustering (just not having the pain) because my eye is still twitching.
If I can even get 6 months pain free and then have to up the meds... go on something else, etc. I would be extactic.
Mark
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The clusterhead formerly known as williamsmh.
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kristi
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Hope the pain free days and nights continue Mark!
Good luck and keep enjoying your freedom!
K
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waterburger
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I've been on Lithium for awhile now at 1200mg. I'm chronic, and take it with Topomax, too. I don't know which one knocks the edge off the headaches, but I don't suffer inordinately very often, though they're starting to break through again...
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MarkHW
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Re: Lithium???
« Reply #16 on: Jun 27th, 2002, 4:11pm » |
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Well, the prednasone that I was on is now down to 20 mg/day and the lithium is at 600 mg. Shadows are starting to come back and I figure once the pred drops to 10 and 0 that I will start with full clusters again.
Called the Dr. and they are talking about putting me back on 40 mg pred and decreasing in 7 - 10 days, etc.
I've been on prednasone now for 2 months......
I asked about upping the Lithium to 900 mg, but the nurse said I need to have my blood levels checked????
Didn't know that was necessary for Lithium.
Any comments?
Thanks...Mark
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The clusterhead formerly known as williamsmh.
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joe_spr
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I've been an episodic for about 20 years, the last 12 or so on Lithium. I'm about 185 pounds so neuro calculated ideal dosage as 1200-1500 mg a day. At those levels you MUST monitor the level as there is a thin line between therapudic and toxic. Have your spouse read the literature so she knows what to look for in you. At those levels I was pain free, could even drink a little liquor now and then and still not get bit. Jonny convinced me that was too high so several years ago, on his advice, I went down to 600 mg a day when I'm on cycle. At that dose I get almost no side affects, and am still pain free. I am a deputy sheriff so most narcotic meds are bad news....you know the gun and all!!!!!..... I keep O2 and cafergot on hand for the occassional break through or 2:00 am wake up call, but rarely need it. I have been on the 600 mg for over a year now so it's possible I've abandoned my episodic brothers and joined the ranks of the chronic. Hope some of my ramblings help, good luck.
Joe
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BobB
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Hi
I have been on Lithium 600mg a day and Verapamil 180mg a day and so far headahce free for about 4 months.
Bob
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sharisse
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Re: Lithium???
« Reply #19 on: Jul 7th, 2002, 11:54pm » |
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Lithium 900 mg. a day
Verapamil 480 mg. a day
And I don't care if it kills me.
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cheryl sharisse
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soworried
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This is to Sharisse:
I don't know you but I care if it kills you. My dad suffers and until recently, my naive world was wrecked. I mean completely. My dad is the most important person in my world. It sucks to deal with this majorly, but just remember that God never gives you more than you can handle. That is what my dad says and we all remind him of it when the attacks hit. I am praying for strength in faith through these impossible times for all who suffer. Good Luck and hang in there.
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Karla
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Re: Lithium???
« Reply #21 on: Sep 3rd, 2002, 1:35pm » |
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I took lithium at 900mg for 1 1/2. It cut the number of ha down from 8 to 4 a day. Then one day it quit working for me. I am chronic. I had no side effects at all except at the beginning it made me tired but that effect wore off after awhile. I would recomend anyone to try it. Especially someone who is chronic. Good luck and hope you find pain relief soon.
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Karla
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Jim R
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Re: Lithium???
« Reply #22 on: Sep 10th, 2002, 3:44pm » |
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Hi,
1200 mgs. last year and it worked great, although felt very spacey on it. Did not work at all this year, in fact, went toxic on the same dose. Now in clonodine and verapamil as preventatives and amerge, stadol, percocets as abortives. Good luck. - Jim R
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
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