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(Message started by: michellepaul on Dec 23rd, 2005, 6:16pm)

Title: neurotonin
Post by michellepaul on Dec 23rd, 2005, 6:16pm
Hi,  I'm new to the club but have read posts from this website for a couple of years now.  My husband is the one who has had chronic cluster headaches for the past 17 years or so.  Not a day goes by where we aren't trying to figure out which preventative medicine to take and which pain killer will work.  Like many of the people within CH.com, we have explored (you name it) every kind of preventative from beta blockers to homeopathic and everything in between.

Just recently, we (I say we, cuz you might as well be a "we".  If you're married to someone who has such intense pain on an everyday basis, you're marrried to the pain as well) tried Topamax for about a month and a half. Boy was that a bad ride.  We thought it was starting to work, but the cycles hit on the weekend where he'd go full blown and the side effects were too overwhelming.  After seeing the neurologist yet again, he immediately took my husband off the Topamax and suggested that he try Neurotonin.

Neurotonin has been the latest adventure for us.  I don't want to jinks it, but it's been just about two weeks and it's the first time in a very long time that the headaches actually seem workable.  My husband describes the headache (if and when he gets one now) as being able to feel the twinges in his head but they're not making a full connection.

I'm hoping by posting this message someone, who is feeling hopeless (like we've felt for years) and hasn't tried the Neurotonin, may at least look into it.

All the best,
Michelle

Title: Re: neurotonin
Post by snyder on Dec 23rd, 2005, 6:39pm
I have taken Neurontin in the past for my CH and it did nothing for me. I have never heard of  Neurotonin and I can't find it at drugs.com. It must be something new, maybe?

Bill

Title: Re: neurotonin
Post by E-Double on Dec 23rd, 2005, 7:23pm
I'm sure that is what she meant.

I took it briefly and it made me violently ill.

Glad it seems to give a bit of reprieve!!!

Have a happy......

E

Title: Re: neurotonin
Post by cardogman on Dec 23rd, 2005, 7:30pm
It's Neurontin not Neurotonin

Burt   two today now that the depomedrol injection wore off and I'm getting a headache again just thinking about it lololololo

Title: Re: neurotonin
Post by cardogman on Dec 23rd, 2005, 7:46pm
BTW Neurontin is a drug used for Epilepsy.

Burt

Title: Re: neurotonin
Post by cazman on Dec 23rd, 2005, 9:34pm
i tried it last year helped a wee bit but gave me nasty tremors in my hands plus if used for long term ive heard its a tough detox from it, i was taking 1500mgs a day just to get that small amount of help. good luck thou i hope it works for ya.

Title: Re: Neurontin
Post by michellepaul on Dec 24th, 2005, 12:23am
Sorry for the confusion.  I should have had the bottle in front of me while I typed in the name of the drug.

Yes, it's Neurontin Not Neurotonin.  It is used to treat epilepsy but lately I'm reading more and more about it being used to treat chronic headaches with minimal to no side effects (My husband hasn't had any) I'll research the sites and offer links for supporting information.

My husbands dose is only 600mg per day (200mg 3x/day).  Maybe that's why he doesn't get the tremors or feel violently ill.  

It's just such a relief after soooo long to have something work for him.

Title: Re: neurotonin
Post by zwibbs/Scott on Dec 24th, 2005, 1:24am
It is a drug used specifically for epilectic seizures. I used it once ( upon a Neurologist's advice) for a Sciatica problem and it worked wonders. However when I saw the same Doctor during my present cycle he said NOT to take it for Cluster Headache relief. I didn't ask specifics, but I will when I see him in mid-January. I would speak to a doctor about taking it for your headaches.

Title: Re: neurotonin
Post by akadanny on Dec 24th, 2005, 9:55am
I took nerontin it did really nothing for me.
I was chronic for 11 years got headache everynight 1.5 hours into sleep and usually after work when i would sit down to relax an hour or two later, i would beat it in the evening then get second one, one and half hours into sleep.  now the cycle comes evry 6-13 months and lasts 2-3 months.  Sometime the injection depomeditrol has totally stopped them.  Tried alchol injection did not work.

I have been using Depomeditrol injections for 4-5 years, this seems to cut the pain (latest neroligist thinks it is a coincedense not to impressed with him)to some degree and some times decrease the frequency other times the pain is cut but still get the attack so to speak with hardly no pain.  It seems to take awhile to kick in but usually the pain starts to decrease in a few days to weeks, i wander if the injection spot is critical.

I get injection in front of left ear and sometimes two weeks later if no relief another several injections where the pain is, in front of ear on top of ear, and I have been to chicken to get shot on nose or eye where pain is there.  I point and he shoots.  Also we have mixed marcaine not sure on spelling but it is a anestesia (supposedly a 12 hour anestesia) not sure on that spelling either.  Tried marcaine by itself did not work.

I went to my 6 th neroligist this year he had preconceived idea to use depakote er next time, I am not to keen on this idea.

11 years tried every pill know to man i think, then imitrex showed up in like 1990 used injections but too many headaches and not enough imitrex allowed, then went to imitrex nasal spray again some relief but more headaches, so now I stock pile imitrex and the latest maxalt, first time I tried maxalt also used half of vicodin, relief occured very quickly and I felt great all day but the demon was back that night.  For me maxalt seems to work great for standard migraine, i get 10 mg pills break in half take half if migraine does go then other half usually a few excedrin or tylenol also.  This cocktail put a dent in CH but to slow to work and does not totally kill the pain or the attack.  Also pacing when CH occurs is the only thing that helps pace lay down for a minute then pace again repeating till pain is low enough to sit down, I must wait about one hour to back to sleep or it reoccurs or turns in to a bad migraine till next CH.  Last cycle I got one CH two weeks later second then they increase in freq. until every night and last time in the morning sometimes and a lot durning mid day.  I get burning clogged nose intense pain in fromt of ear that goes back to brain stem and also goes to eye and nose.

I also suffered from migraines before CH, and still get migraine when not in CH cycle also if I go back to sleep before fully beating CH it turns into bad migraine of course who cares about migraine after the pain of CH.

Today's remedy when in cycle I wake up eat chewy bar then one or two execedrin and/or (caffeine or aspirin help normal migraine a little bit) one or two tylenol this tend to help later  in the attack (works to slow)and usually prevents migaine after CH.  I also use cold pack for all the 15-16 years wore out several and the latest is a hot cup of coffee instant low caffeine and sniff the steam and drink the coffee and lastly, Flonase which is a steroid nasal spray use it when i wake up because left nostral is usually plugged when it starts to unplug attack starts to lessen usually attacks are about one hour in duration pain stage and then some after effects some only last 2-10min,

Some times flonase nasal spray has stopped but very rare. also tried the cold chilled saline spray to no avail.  I also have certain pressure points one is pulling ear out, this has stopped them and also made them worse but usually provides some relief. pressure points at base of skull help for a few seconds but then usually gets worse, so prsss for few seconds let off and do again the two pressure points on base of skull where nerve comes from side of head to spine.  

Tried every over the counter thing I could find not much luck, cold products with pseudoephedrine help to delay attack but after a 10 day period on high power pseudoephedrine cold medicine I did not hardly ever sleep but got a lot of work done as soon as I stop instant  CH.

Usually physical activity will help but usually as soon as I try to relax bang again.

Sorry for long letter this is first day I have been on site but very great to share info with others.

Title: Re: neurotonin
Post by kcopelin on Dec 24th, 2005, 10:16am
Have you tried oxygen yet?  Works wonders for many, though it can be a mofo to get.  Also, frozen bananas have worked for some ;;D
PFDAN and merry christmas,
hope you get some relief and rest!
kathy

Title: Re: neurotonin
Post by akadanny on Dec 24th, 2005, 10:20am
Thanks did try o2, worked to some degree sometimes it was about 12 years ago, I am thinking trying some different things next time like lithium again now that I understand better, also wonder about topamax as a prevent type.

Merry Christmas ALL!

Title: Re: neurotonin
Post by unsolved1 on Dec 24th, 2005, 11:30am
Neurontin made me worse. I won't do it again

UNsolved

Title: Re: neurotonin
Post by Karla on Dec 24th, 2005, 2:12pm
I was on neuontin for a couple of years many years ago for epilepsy.  I had no problems when it came time to quit taking it.  I also tried it for ch when they started up but it did nothing for me.  I am so glad that it is working for your spouse.  There have been studies done on it with ch and it is suppose to prove benificial to some.  

Title: Re: neurotonin
Post by cardogman on Dec 24th, 2005, 8:51pm
AKA

Well, after reading your post I think I am probably doomed. Maybe I'll go back to school and become a Pharmacist because it looks like that's what it going to take.

Headache gone today maybe this was just a bad dream.

Burt

Title: Re: neurotonin
Post by ccbiggsoo7 on Dec 25th, 2005, 9:48pm
i have been on it a year along with the verapamil, lithium combo. works good for me. 600 mg is a very low dose though. it works on nerve pain also. i currently take 600 x 3 a day. makes u a little spacey  and constipated, but minimal side effects compared to most meds.

Title: Re: neurotonin
Post by missbhaven on Dec 4th, 2006, 3:51pm
Neroutin didn't help me



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