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Title: 1800 mg. Lithium & Still Getting Hit Post by Jim R on Aug 9th, 2005, 7:08am On enough lithium for two bipolar people and still getting hit. Last night at midnight but - get this - on the other side from where they reside this cycle! I've had these f*ckers since I was 23 and I think this has only happened one other time, years ago. Then, for the rest of the night felt "clustery" and woke up each time, but they didn't progress to full-blown CH's. So many things are atypical about this cycle - light sensitivity (normally with my right-sided CH's, could care less about light shining in my eye); right before a sneeze, a "zinging", very strong sensation (? pain) shooting up that side of my nose - very uncomfortable; cold sensitivity on the roof of my mouth (have to work hard at eating ice cream! LOL! - Mast, you'll appreciate that!). Just a weird cycle in every regard...and the lithium making it even weirder... PFDAN's to you all. Jim R |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Margi on Aug 9th, 2005, 8:54am Wow, Jim, I'm sure sorry to hear that. Almost the same thing happened to Mike, even though he didn't ever go higher than 600 mgs. His cycle started December 22, 2004 and he's still going. He did the lithium pulsing method for the first four months and it honestly did help him a lot. Then the buggar switched sides on him and it's been brutal since then. Lithium hasn't touched it, in fact it's seemed to make it worse! He had one day where he set a record not too long ago. 10 attacks in 24 hours. Enough. He's now tapered completely off the lithium and he's only treating individual attacks with O2 and the odd 'trex inhaler. VAST improvement, Jim. Not declaring victory yet by any means but preventative-free sure seems to be kicking the beast out the door. Something you might want to consider, with your doc's ok? After 3 rather hellacious cycles over the last few years, I doubt Mike will EVER do any of the preventatives again. I honestly think they do prolong and mutate the beast. Hope you find your balance soon, Jim. |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Mastifflvr28 on Aug 9th, 2005, 8:58am Step away from the ice cream! Sorry you're hurting Jim and I hope you figure it out soon. Mast |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by burnt-toast on Aug 9th, 2005, 9:11am That's one hell of a lot of lithium to be taking - period. At that level you could probably conduct a symphony without even trying. More seriously, I would be worried about liver function. If you haven't already you might want to get some blood work done. Sounds like time to seek other med. options. with your Doc. Best Wishes Tom |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by nani on Aug 9th, 2005, 9:15am Jim, have you looked at kudzu? Have a look here and read it all... http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by unsolved1 on Aug 9th, 2005, 9:17am If it don't work ... don't take it. Thats what I always say. UNsolved |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Jim R on Aug 9th, 2005, 12:01pm Thanks all. Yup, the old Catch-22 - would it be worse if I wasn't on lithium? Who knows... Margi - I know exactly what Mike has gone through. My zenith was 13 headaches a day. One was waning as another was starting - totally weird and very very depressing. Back then, verapamil worked. Wish it did now. The anti-seizure meds. - Topamax, and the the one they just had me on, actually made it all so much worse. My neurologist said I have literally tried everything else. Lithium is the only hope. But there are times I feel like just chucking them all. These d%mn things are supposed to be getting better as I get older (and man, I'm 50 already, so when is this supposed to happen?! 27 years seems an adequate amount of time to suffer, wouldn't you think?!) It's all very discouraging. But I wish all my brother and sister sufferers out there as much pain-free time as this dastardly disease can afford. Jim R |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by blood_Redd_son on Aug 9th, 2005, 12:06pm dude, sry your head hurt(s). :'( |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Margi on Aug 9th, 2005, 12:27pm Jim, honestly - you wouldn't believe the difference in Mike since he's come off all meds. He's back to being my boy again. He's sleeping through the night now, he's SMILING - seriously...consider talking to your doc about doing a detox and taper. Let your body work on it for awhile? Keep your abortives handy, but Paco really kicked my butt a couple of weeks ago and told me to get Mike off the prevents. He and Hub both went through cycles this year without them and they seemed much more survivable than what BobP and Mike have gone through, doing all the prevents. We're living proof that it can really help. Mike is 48, so maybe it's that your body just doesn't tolerate the preventatives that well anymore? I dunno. Big hugs, Margi |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by brainfreeze on Aug 9th, 2005, 1:01pm Jim, I've been on every prescribed drug there is for this and my last round was Lithium. I did not get any relief from it and like everything else, nothing worked. It doesn't make matters worse to end a prescribed drug when it is not effective. Just stay strong and say, I'm not taking this anymore and I'm not taking the **** associated with the ha's anymore. Get me some relief!!! I finally had surgery which ridded my chronic condition (with a 2 year relief) but returned episodic which are manageable (better be careful when I say that). You may ask your neuro to see if an ENT will work with you on it and help abort the chronic cycle. In recent years, Imitrex aborts them for me and from what I can tell, it works on alot of people here. If you can't control the frequency, at least control the attack. Get it where you can. Feelin for ya....... |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by don on Aug 9th, 2005, 2:26pm Then why continue to take it? Obviously its not working. Try another regimen. |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Jim R on Aug 9th, 2005, 2:44pm Hi guys, Yes, I am seriously considering stopping this lithium. I feel angry all the time when I am on it, as well as feeling super weird. nd if I have another CH, that's IT. That'll be proof positive that it is NOT working. Margi - your stories make a lot of sense and are inspiring. Wish Mike well for me. He's got GREAT support :) I do use imitrex but am having chest pressure from it. Therefore, my neuro has ordered an echo stress test. He feels it is a dangerous drug, particularly with the symptoms I'm having. And with only 6 paid-for shots per month, the full complement might last me three days with the number of CH's I was having. I DO need to get my O2 tanks in here. Historically though, O2 only works for mild CH's - not the magnitude of the ones I am having currently. BTW, my neuro is gone for the next 7 days and if I do decide to stop the lithium, what would be a good taper from 1800 mgs? Thanks all Jim R |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Karla on Aug 9th, 2005, 6:22pm That is %$^%$& nuts! I am so sorry you are going through this right now. Hang on tight. It will pass. |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by don on Aug 9th, 2005, 7:00pm Quote:
Aint no doctors here bud. Call his covering physician and explain what you want to do. He'll give you the correct taper dosage. |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Jim R on Aug 10th, 2005, 6:56am Well, the decision has been made for me.... Had a headache - not a cluster, I don't think, but about 6-7 on the KIP scale, from 9:00 p.m. to 3:00 a.m. It was like a very tight band around my head. At about 2:00, I had multiple bouts of vomiting, and finally, not being able to stand it anymore after 5 hours of this, I took my last shot of imitrex. This is the same thing that happened to me about 3 years ago on lithium is what caused me to get off it then, and will do the same now. So I am going to progressively cut down until I stop it altogether. s has been suggested, other than verapamil and clonidine which are handling my hypertension, I am going to abandon preventatives and concentrate just on abortives. I think I need to detox... Jim R |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Margi on Aug 10th, 2005, 9:03am I'm sorry to hear you had a rough night, Jim. Don's right - your doctor is your best resource to prescribe your taper. Mike waited three days between each step down, so it took him 6 days to get off it completely because he was only at 600 mgs. Definitely not a drug you can quit suddenly though, you're right to taper. Word of encouragement though - we've noticed a great improvement in his mood since he's been off it. He wasn't really a guy to be angry all the time when he was on it, but he wasn't ever really happy either. Lithium is a mood leveler - thus the reason for prescribing it for bi-polar, right? Now that he's off it, though, he's able to smile a lot more and I even caught him singing to the dog the other day. ;) Brighter days ahead for you, too, Jim. Keep us posted and definitely do call the substitute doc to get your own personal taper instructions, ok? |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Jim R on Aug 11th, 2005, 6:05pm Thank you Margi and all. Had a low-grade headache last night - not a cluster, but rather the tight band one again. Just intense enough to prevent sleep, so I'm hoping tonight I get some quality zzz's. Down to 600 mg. of lithium now and by Sat will be off it and hoping for the best... My best to you all. Jim R |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Margi on Aug 12th, 2005, 9:08am Yikes, Jim - that's a pretty fast taper! Down 1200 mgs in just two days? Did you talk to your on-call doc about the rate? We've always followed the three-day rule, step down 300mgs, stay there for three days, then go down another 300, three more days. Are you noticing any side effects or withdrawal symptoms? Worried about you, my friend - hope you're being careful with this. Not criticizing, just looking out for you. |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by Jim R on Aug 15th, 2005, 8:47pm Well, don't worry Margi - I'm back on it... The day (Sat.) I got to 0 mgs. of lithium, I had two CH's. I hadn't had any during my taper. But I have NOT restarted the 1800 mgs., just the original 1200 that my neuo. prescribed. On another note, because of my mother's history of dying after a 5 vessel heart bypass, my neuro ws very concerned about me taking imitrex especially as I had mentioned that I had chest pressure soon after injecting, so this morning had a stress test/echocardiogram. Did fine. The cardiologist told me even 20 year-olds have chest pressure when taking imitrex, that it was the nature of the drug. He saw no reason why I could not continue taking it. He did, however, tell me to quit smoking or eventually die of a myocardial infarction (heart attack), that unless I did this and got back on cholesterol medication, that it was a given, a "drop in the bucket". Always something.... Jim R |
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Title: Re: 1800 mg. Lithium & Still Getting Hit Post by kissmyglass on Aug 16th, 2005, 12:27pm I believe Lithium should be taken along WITH Verapamil. For some reason the combo seems to work.... Kev |
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