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notseinfeld
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Reqesting help from the board:
« on: Dec 29th, 2003, 5:01pm »
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Saw a new neurological team today and the recommendation, which I tacitly agreed to, was the 12-18 month LITHIUM trial. Good god does this scare me.  
 
History:
1 year episodic, 4 years chronic and refractory to all tried medications including psilocybin. Unable to watch television for more that 45 as it's a surefire trigger and am usually hit every morning the very second I open my eyes when a photon hits the iris.  
 
Frustration reigns supreme (though it's neck and neck with pain) and internally I'm leaning toward the gamma knife. Would appreciate *any* input and particularly anyone who has first hand experience with Lithium.
 
Can't believe it has come to this.
 
nots
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Re: Reqesting help from the board:
« Reply #1 on: Dec 29th, 2003, 5:07pm »
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Have you tried melatonin?  Cheap, easy and safe.  If it works great, if not then at least you tried.  It works great for me, sure wish I'd have tried it before I had that horrible sinus surgery.
 
Anyway good luck with lithium.  Isn't that typically used for schizophrenias and affect disorders?  Odd.  I don't recall it being dangerous but some psychiatric patients claim it makes them boring.  Could be totally difefrent with your application, though.
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Re: Reqesting help from the board:
« Reply #2 on: Dec 29th, 2003, 5:30pm »
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Lithuim is one that "helps" with clusters. Tried a combo of Lithium and Sansert, but now that Sansert has been pulled, I haven't tried it again.
 
It was traditionally prescribed to treat manic depression. People who are not depressed may have a bit of trouble staying "equal" (anxiety, difficulty sleeping) and they sometimes prescribe a very low dose of Ativan to counter this effect. Ativan is a controlled substance and can be addictive, so that is something to think about.
 
You will be asked for a blood draw prior to starting the med to establish a baseline (normal for you) then depending on the dosagee, may go back once a month for additional draws to make sure the liver levels are within range.  
 
There are side effects, but nothing so bad to avaoid trying it to treat chronic CH.
 
Best of luck, whatever you decide.
 
V
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Re: Reqesting help from the board:
« Reply #3 on: Dec 29th, 2003, 5:35pm »
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on Dec 29th, 2003, 5:01pm, notseinfeld wrote:

 
 12-18 month LITHIUM trial.
 

 
So...they want you to try this for up to 18 months just to see if it'll work or not?
 
Do they realize thats about 2% of the average human life span?
 
I know you tried the psilocybin but maybe you could document for me, either here or in email, some details.
 
Did you ever try the IV DHE? Did it break the cycle even for a short period of time? If so, maybe if you could get 5 or 6 days, med free after the IV, you could try the psilocybin again?  
 
Maybe try LSA?
 
Just a couple thoughts off the top of my head without being able to recall your history.
Bore me with details and I'll put my best people on it for you!!  Wink
 
PF
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Re: Reqesting help from the board:
« Reply #4 on: Dec 29th, 2003, 6:32pm »
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Quote:
the 12-18 month LITHIUM trial. Good god does this scare me.

 
Dude, lithium is not that big a deal in the theraputic doses for clusterheads 6-900 mg. A verapamil / lithium cocktail works for some chronics including me and some guy named jonny. Albeit not perfect or 100% effective it can help some of us. As far as mushies go I have added them to the mix also with very good results.  You have to fix it yourself, they don't know how!
 
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Re: Reqesting help from the board:
« Reply #5 on: Dec 29th, 2003, 9:36pm »
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Why specifically does taking lithium frighten you?  
 
I agree with Pinkfloyd that 12 to 18 months is more than a trial.  Something sounds wrong with that.  3 or maybe even 6 months is a trial.  It takes a while to build up therapeutic levels but if you're chronic maybe even a month would suffice.  Verapamil helped me with frequency and intensity of CH but it took at least a week to start working.
 
Do you have low lithium levels?  Some depression and mania is caused by a lack of lithium so taking oral lithium to raise blood levels to normal treats the depression or mania.  I have seen it work wonders in a member of my family who has severe depression with mild manic episodes.  Yes, it does make you "boring" if you're used to living in extremes!
 
Who knows, low levels of lithium might cause clusters in some people--definitely we have some sort of chemical imbalances in our brains.  
 
TV and light being triggers for CH for you is a bit unusual.  Maybe someone else who experiences that can give you some input.  It also might be that you have something extra going on in addition to clusters.  
 
Have you seen other neuros and headache specialists?  Why is this neuro team recommending lithium?  Are they just out of ideas?  Have they completely explained to you the reasoning?  You certainly have a right to understand any treatment from any health care provider and to ask all the questions that you want to ask.  (Write them down ahead of time so you don't forget.)
 
The site below talks about lithium level testing to
a. determine that a deficiency exists and  
b. to determine that a therapeutic level has been reached and
c. to ensure that the blood levels stay non-toxic:
 
http://www.miminc.org/sample_lithium02.html
 
The therapeutic blood levels are close to the toxic blood levels so testing is important.  
 
From rxlist.com on side effects that indicate possible toxicity:
 
Check with your doctor AS SOON AS POSSIBLE if you experience diarrhea, vomiting, unsteadiness, difficulty walking, or unusual muscle weakness.
 
Good luck.
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Re: Reqesting help from the board:
« Reply #6 on: Dec 29th, 2003, 9:40pm »
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on Dec 29th, 2003, 6:32pm, forgetfulnot wrote:

 
Dude, lithium is not that big a deal in the theraputic doses for clusterheads 6-900 mg. A verapamil / lithium cocktail works for some chronics including me and some guy named jonny. Albeit not perfect or 100% effective it can help some of us. As far as mushies go I have added them to the mix also with very good results.  You have to fix it yourself, they don't know how!
 
Lee Wink

 
Lee...
yer last line line should be engraved/tattooed on on CHead's MedicAlert bracelets.....  
 
regards...notfer
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Re: Reqesting help from the board:
« Reply #7 on: Dec 30th, 2003, 12:17am »
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Everyone else has commented on the other stuff...I wanna comment on the Gamma Knife. I would think if your neuro is any good at all...he wouldn't even consider this treatment for you until you've tried many, many different meds (and/or combos of meds)...nerve blocks...RF...and maybe even stimulators. I don't think Gamma Knife has been very successful at treating CH and it is (permanently) destructive.
 
IMO..I would try lots of other stuff before I would do the Gamma Knife ! Pink had a good suggestion with the DHE IV (if you haven't already tried it). It may break your cycle.
 
PS...I did the Lithium (900mg/day) twice in the past with no positive results. Made me a little 'shaky'...sense of balance was 'off' ... but I also read that it has helped others. You will need to have blood tests w/ this med.
 
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Re: Reqesting help from the board:
« Reply #8 on: Dec 30th, 2003, 12:49am »
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You guys are terrific. I'm currently ingesting all that info but some things that stand out:
 
Gamma Knife is just radiation of a very focused kind. Doesn't destroy the nerve though admittedly they're not sure why it works. Jeff from this board had it done about 4 weeks ago and I owe him a call to see how it's going.  
 
DHE drip--never had it but it's a great suggestion.  
 
Lithium was agreed upon in my case as I've pretty rough reactions and little help with the 'family' of drugs i.e. tricyclis, beta block, anti-inflammatory, etc.  
 
Hoping for that silver bullet.
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Re: Reqesting help from the board:
« Reply #9 on: Dec 30th, 2003, 2:47am »
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Gamma Knife DOES destroy
Look Here
And Here
 
But...hey...I guess if all else failed...I'd probably do it...(The madness has to stop somewhere!) Roll Eyes
Goodluck
 
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Re: Reqesting help from the board:
« Reply #10 on: Dec 30th, 2003, 9:06am »
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The Gamma Knife procedure they do at Yale does NOT destroy the nerve. There are only five certified centers in the U.S., and maybe they have differing procedures? Yale focuses the beam only long enough to irritate the nerve, causing a lesion to form (takes about 6 weeks to form) and it is the lesion that interrupts the transmission of pain signals.  
 
One drawback (rare) is it is possible for the pain to switch sides, then they have to do the other side as well. At about $50,000 a pop, that can get expensive. I would steer clear of any Doctor saying words like "destroy" or "severe". There are other ways.
 
IV DHE is good to try, but I wouldn't  keep repeating endlessly if it doesn't work the first two times. For those with chronic CH, the difficulty is not only with breaking a cycle, but keeping it from starting again. The DHE can break the cycle, then you get 2-3 days relief, then the pain picks right back up where it left off. A week on IV DHE in a headache clinic runs about $16,000, plus whatever time you have to spend sitting in the hospital.  
 
They could run a week of DHE IV, then send you home with the DHE intra-muscular injections, teach you how to inject yourself in the thigh or bottom. This is less expensive and time consuming and in my opinion, equally effective as a week on DHE.
 
The dosage is 1 mg injected IM initially, then another 1 mg if that didn't wipe it out completely (up to 2 mg). It must be kept in the refrigerator, and it will make you nauseous, so they can prescribe oral or injectible phenergan, compazine or reglan to mix with it. This combined with O2 will often keep the pain at bay.
 
I know it sounds like this post is very cost oriented...and a cure would be worth almost anything. But if something doesn't work the first couple of times, it probably won't. You can use the DHE and the lithimu simultaneously, and if the Lithium doesn't help after 4-6 weeks, it would be good to look at other options.
 
 
« Last Edit: Dec 30th, 2003, 9:11am by hdbngr » IP Logged

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Re: Reqesting help from the board:
« Reply #11 on: Dec 30th, 2003, 9:37am »
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Once again I am compelled to suggest melatonin.  It's extremely inexpensive, convenient and safe not to mention effective for those who are responsive.  Try it tonight and by the weekend you'll know whether or not you can fire all your expensive doctors.
 
Just because the pain is extreme and previous doctors have been befuddled, this in no way means you must delve into increasingly complex and expensive approaches to pain managment.
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