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Title: Baclofen -tried it Post by cipher_cat on May 2nd, 2004, 12:02pm baclofen occasionally i get a handle on that rare and precious commodity called "sleep". my neuro put me on this stuff that made me skip 2 a night and sleep 4-6 hours straight! yeah, ME of all people! it's called baclofen. *hiss... anyone tried it? i did but wait a minute though before you get excited. the stuff is capable of taking down an elephant. not just any elephant either, a pregnant one in labor pains with twins while having it's legs amputated. however, baclofen has nasty side effects but keep reading, it works! here's how it went. Night 1 baclofen gave me the worst neck pains imaginable on the opposite side of my clusters and the stayed all through the following day! hmm, all day neck pain on one side of my head and clusters on the other? i prefer sleep deprivation to THAT thank you very much! in fact, i prefer having my head smashed in by that same two legged elephant. anyway, we all know first trials on meds are harsh and i'll do just about anything to get rid of the beast, so on to night two. Night 2 the neck pain took no time to sink in. i wasn't allowed a nap like on night one either. in fact, there's no doubt in my mind i had a cluster-like pain on the WRONG SIDE OF MY HEAD! not cluster you say? thought crossed my mind too. whatever it was, was the worst, crying, head bashing, level 10 kind of suicidal pain imaginable! now, this was the first time i've ever had pain on that side of my head. it was in the back toward my neck and to say i panicked is putting it lightly! i was not prepared for the hell spawned pain of it all. honestly... there are no words. as many ha's as i have in a day with not one days remission so far, you'd think by now i could say i'd have had something close to this or comparible.. NO!!! i had dispairingly exhausted myself and had a normal cluster on the right while still fighting the neck beast on the left. Night 3 i wimped out and didn't take the stupid baclofen pill. Night 4 i took it again. can you believe it i'm a persistent little bugger. i want the beasts gone long term. who's to say it was the baclofens fault anyway? this time i actually slept for 4-5 hours straight through my 11,2,and 4am ha's. maybe from exhaustion or maybe the baclofen. either way i slept! no problems, headaches, or achiness at all except for the bruised muscles from fighting off the beasts a couple nights ago. that was the first time i've slept in six months since i began them. Night 5 went the same way as night 4. i skipped the 11-4 hA shift, sleeping right through them and waking up without an ache. however, my daytime clusters are still a confounding mystery and heavy as ever. my 12pm ha's aren't as predicable as they used to be. (see Cluster Specific/ Day & Night Reversal) so now my 9-15 average may now be down to 6-12?! =D and i get some sleep!! i have noticed that the nights i skipped dosage initially, the ha's woke me up as always in the usual time frame. i'm pretty sure the baclofen is helping me. =) good thing i stuck with it. i'm not sure why this works but i'm going to see my neuro tomorrow about it and see if remission just hit between the hours of 11-4am or if this stuff actually worked. ;) i'm on: baclofen 10mg | verapamil 120mg | topamax 225mg and: o2 - 15 lpm tried: indomethacin | prednisone | imitrex injections (failed horribly) |
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Title: Re: Baclofen -tried it Post by Rock_Lobster on May 2nd, 2004, 1:41pm Baclofen has a fairly short half-life. How are you splitting your dose up throughout the day? What times of the day are you taking it? When I am on it, I take 10mg 3x daily. Rock |
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Title: Re: Baclofen -tried it Post by cipher_cat on May 2nd, 2004, 2:02pm usually late evenings and only once a night. if i'm not mistaking, it makes me impossibly sleepy. i honestly wasn't expecting the stuff to work at all. now, i'm really curious to see if i can work it into an earlier schedule and possibly a day one too if i can manage it. is that working for you? what else are you taking with it? (if you don't mind me snooping) ;) |
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Title: Re: Baclofen -tried it Post by Rock_Lobster on May 2nd, 2004, 2:19pm I did: Verapamil (240mg 3x daily) Topamax (50mg 2x daily) Baclofen (10mg 3x daily) usually 9am, 5pm, bedtime My first try with Baclofen caused an allergic reaction... a rash. Second try was no problem. No side effects, except the general relaxed feeling. I find it is great for eliminating shadows. The half-life of baclofen is quite short... some sites list is as 3-4 hours, others 5-7. Thus the 3x doses daily. Rock |
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Title: Re: Baclofen -tried it Post by UN_SOLVED on May 2nd, 2004, 5:05pm I took up to 60 mg of Baclofen a day. NO HELP Unsolved |
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Title: Re: Baclofen -tried it Post by cipher_cat on May 2nd, 2004, 7:12pm sorry it didn't work for you Unsolved. =( the real test will be putting it up against my 8,9 and 10 o'clocks. those are the devils that made "suicide headache" a defining term in my vocabulary. they once made me grip down on my leg so hard i bruised the muscle and tore the skin of my thigh right through my jeans. i didn't notice until it was all over. oops. yeah, you know what i'm talking about. anyway, the trial run i described above was against shorter lasting ones that were overall 'less intense' in comparison (if there is such a thing). i've hesitated taking the baclofen earlier in the night because it makes me sleepy and i'm really afraid that i'll be groggy through those harshest ones. yet i'm curious.. well dying to see if it'll can help those. should i try it? |
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Title: Re: Baclofen -tried it Post by Rock_Lobster on May 2nd, 2004, 7:28pm Keep in mind that it is not an abortive... it is a preventative. You are targeting the the episode as a whole... not any one group of clusters. The idea is to have the Baclofen active in your body (the 3x a day thingy) for 1-2 weeks, with a goal of terminating the episode. Read here... http://www.future-drugs.com/admin/articlefile/ERN020304.pdf Rock |
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Title: Re: Baclofen -tried it Post by cipher_cat on May 2nd, 2004, 9:28pm true true.. it is preventative but since thus far one little time period is all it's really effected and like you said it's fast acting. i guess i forget. i'm excited to think about it preventing them altogether, but still pretty pessimistic about it working on the other harsh buggers plaguing me. bring it on though! man, thanks for all the feedback Rock! after seeing your dosages i'm gonna ask about reducing topamax a little too. that stuff blows and i haven't seen it helping anyway. i also noticed your verapamil is way higher. looks like i can up on that if i ever need to in mix with baclofen. =) |
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Title: Re: Baclofen -tried it Post by UN_SOLVED on May 2nd, 2004, 9:38pm on 05/02/04 at 21:28:16, cipher_cat wrote:
Better ask your doctor BEFORE you do that. That can / will mess with your blood pressure and heart rate. Too much could be fatal. Unsolved |
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Title: Re: Baclofen -tried it Post by cipher_cat on May 8th, 2004, 11:10am oh absolutely unsolved! thanks for looking out for me on that. =) i talked to my neuro on monday and he made the first suggestion about upping the verapamil to 240 and the baclofen to 2x 10mg but still no higher than that. it's a good thing too. it seriously makes me too weak to fight the pain. i'm getting off topamax though! (yeah!) i can find my keys, my clothes fit and my soda won't suck! unfortunately though, i'm right back to where i started from as far as hell spawn care packages of death stabbing. 9-15 times night & daily as per norm and waking up as usual. apparently the baclofen wasn't the cure i hoped it to be. at least i'm not any worse off and it proved to be some sort of temporary relief anyway. =/ next we're back to shooting up steriods, then lithium and shipping me off to some headache center in Michigan my neuro speaks fondly of. |
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