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Title: Age Doesn't Matter Post by the_old_man on Nov 16th, 2004, 8:36pm I'm new to this site and hate the thought of having to be here. I've had the beast for 26 years, and went through much the same as most of you...the pain...the shame...the ridicule. Mine were as regular as clockwork...bed at 11...first hit 2 hours later...k6 or better for 45 minutes and back to bed...only to get hit 2 hours later for another dance. This would happen 3 times each night. In 26 years I only got hit during the day about 10 times. Finally, about 6 years ago I found a neuro that understood ch. She put me on a pred taper and lithium. Worked the first night and got me throught the cycle. The lithium gave me the shakes, so 2 months later as the beast struck again, I got the pred taper and verap. Worked the first night and got me through the cycle, but the verap made my heart race like a drum solo in a rock song. Couldn't go the med route, so for the next three years, I just toughed it out...crawlin, fallin, bawlin...knowing it would end in 45 minutes...mostly k7 and k8. Then they stopped. I was told they usually stop when a person reaches mid to upper 50's. Two months ago I turned 60. Two weeks ago, the beast returned with a vengence. I was going to tough it out and found this site. Years ago a man from Australia told me to try 1.5mg of time released melatonin before going to bed. It worked, but only for that cycle. Never worked again. I've been reading about melatonin here so thought I'd try it again. Meds are still a problem for me because I have arhythmia and they do a number on me. Three nights ago I tried 9mg of melatonin and had a pfn. The next night I did 9mg again and the beast struck twice...a k8 and a k4. I decided to try a different dosage and dropped it to 6mg. The beast hit 3 times that night..all k6or7. What do I do tonight? Should I up it to 12 or should I just say it doesn't work for me? This is a great site and has given me great comfort. Any suggestions would be greatly appreciated. Here's to everybody being pf. The Old Man |
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Title: Re: Age Doesn't Matter Post by K-9 on Nov 16th, 2004, 8:48pm Hey old man, I'm really sorry you have to be here and that you're going through this. I'm REALLY sorry you're doing it at your age. I hope it ends for you soon. As far as the melatonin I don't have much experience but Hopefully someone in here, maybe Thomas could have a better answer for you. Just support from me, no answers, hang in there!! Chuck |
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Title: Re: Age Doesn't Matter Post by Chillrmn1 on Nov 16th, 2004, 9:09pm I'm sorry you have to be here too old man. Sorry we all have CHs. But since we do, this is a great site for information and help. I just joined a short while back and have understood my treatment better because if this site. Has helped my Neuro treat me better from info gleaned from the site. I have had the Beast for 27 years and am 47 years old. I have never heard what Old Man said about CHs going away in the mid to upper 50s. Is this true???? I hope it is, at least there may be some relief in sight!! Hope you get PF soon old man! |
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Title: Re: Age Doesn't Matter Post by don on Nov 16th, 2004, 9:55pm Have you tried oxygen to abort? |
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Title: Re: Age Doesn't Matter Post by Ueli on Nov 16th, 2004, 9:55pm Hi Old Man from an even older man ;) Since you can't take many of the usual meds, I recommend to have a look at oxygen. The only effect oxygen has is that it can stop an attack in 10 minutes, if starting it at the very first sign. Every thing worthwhile to know about it is written up at http://www.headachesupportgroups.com/oxygen/oxygen.htm PFNADs, old man Ueli [smiley=smokin.gif] |
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Title: old_man Post by Testy1 on Nov 17th, 2004, 6:23am I've got some experience with malatonin and frankly it didn't work for me. Much the same kind of experience as yours, it seemed to work once or twice and then never again. I keep wondering how much of the times it worked were some kind of weird placebo effect. Anyway, I don't mean to squash your enthusiasm but melatonin just didn't cut it. Best regards Jack |
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Title: Re: Age Doesn't Matter Post by Bob_Johnson on Nov 17th, 2004, 7:23am If your clusters are still regular after going to sleep you might try Ergomar about one-hour before bedtime. This old time med is still effective even if not the latest kid on th block. It's an Rx item and your drugstore may have to order it because it has a short expiration date. |
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Title: Re: Age Doesn't Matter Post by Bob P on Nov 17th, 2004, 2:51pm Quote:
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Title: Re: Age Doesn't Matter Post by marlin on Nov 17th, 2004, 3:11pm If the arythmia prevents you from taking Imitrex I would recommend O2. And I'm discouraged by your story. My father got CHs and tells me they disappeared as magically as they appeared after 50. I only had a few years to go until you destroyed all HOPE!!! Just kidding. I only held a shred of hope, although this last cycle was 2-1/2 years from my last one. Not bad. Really hope you find something that works. Otherwise it's a real bitch battling and not knowing when the next one will strike. |
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Title: Re: Age Doesn't Matter Post by EvertBoer on Nov 17th, 2004, 6:33pm I'm an old guy too (well not that old, 55 years), and I had a doctor tell me that sometimes they just disappear (but he said in your 40s). I've had the episodic clusters since the age of 19, so about 36 years. When I hit my 40s, I did start having longer PF periods. I used to get them every year, but in my 40s, it would skip a couple of years. When I went 5 years, I though, "Wow, I'm cured...good riddance", but like you I had another episode that started out strong immediately (from none to multiples per day and night), and lasted 7 months. But it too passed (Lasted from July to February of this year), and I'm just assuming I'll have another PF 5 years (or even more, why not...we've all become optimists by necessity). So for you younger episodics out there, the future is not all gray (heh heh). |
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Title: Re: Age Doesn't Matter Post by the_old_man on Nov 17th, 2004, 8:09pm Tried 12mg last night....had 3 episodes. Oh well... Just to show how we're all different, O2 just didn't work for me. Don't know why. It was supposed to be fool-proof. Guess I'm just not enough of a fool. ;) Someone mentioned another RX...something like ergomax or something. Is that by scrip only? I see some of you concerned about whether or not your insurance will cover your meds. In a way I'm fortunate that I can't take most meds. I don't have insurance. I don't mean to sound like I'm a really sad case. Hey, I had almost 2 years without the beast. That was great. So he's back. It's only for a visit. He always seems to get tired of me and leaves again. I can wait him out. At least I get some breaks. I feel for those of you who never get a break. They'll be a break-through sooner or later. They'll find out that the common thread in all of this is that we're all just a bit more intelligent than the rest. So let's just drink to the days that we're pf and to hell with the rest. The Old Man |
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Title: Re: Age Doesn't Matter Post by sailpappy on Nov 17th, 2004, 8:30pm ;;D ;;DI'm feeling bad enough about aging and they wait till you turn(Whatever age) and the will go away, well at 53 and having daily attacks for 35 years now, I'M WAITING!!!! With Bells on! Oxygen doesn't abort or shorten my attacks at all! Pappy |
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Title: Re: Age Doesn't Matter Post by thebbz on Nov 17th, 2004, 8:42pm Hey there! What is this old man biz? So your 29 twice. You will find your not alone, being 29 that is. Sorry for the return of the beast. There are some other alternatives, search around. My neuro told me as well that they sometimes taper off after 50, but what does he know!! [smiley=laugh.gif] [smiley=laugh.gif] All the best young man. BB |
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