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Jasen
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OK, This is insane
« on: May 21st, 2005, 5:35pm » |
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Every time a Dr. gives me one of these meds. to stop an attack, they work great for 2-3 days. Then the attacks get more frequint and severe to the point they become violently painfuly and debilitating. I've been on Imitrex for about a week, Relpax for about 2 weeks and now Amerge for 3 days now. All with a few days inbetween with nothing.
A few hrs. ago I felt an attack coming on so I took 1 Amerge 2.5 mg. and O2. (It's been about16 hrs. sense the last doese). Within 30 mins. I was thrashing, kicking, beating my head, punching and kicking the walls and in tears. After about an hr. of this it subsided to just a splitting headache lasting for about 90 mins. Then it flared up to the trashing, kicking beating attack again, lasting only about 45 mins this time, and is now just a spiltting headache. Last weekend while on the Relpax this he!! went on for 5 hrs. and the attack lasted 40 hrs.
I had somewhat differnt CH years ago and they were quickly gotten under control by my then Family Dr. So I guess you could say, I'm somewhat of a newbie at Ch.
Whats the groups take on this.
I did see the Neuro. for the first time wednesday and go in this coming wednesday for a MRA and to the Dr. on Thrusday.
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If it was clusters of cash, I wouldn't complain
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Jonny
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Re: OK, This is insane
« Reply #1 on: May 21st, 2005, 5:40pm » |
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on May 21st, 2005, 5:35pm, Jasen wrote:| Whats the groups take on this. |
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Save the drama for your mama 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Lizzie2
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Re: OK, This is insane
« Reply #2 on: May 21st, 2005, 5:51pm » |
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Well Jasen,
Maybe you just didn't find the right abortive yet? I know Amerge works well for me - actually it'll hold attacks off for about 6-8 hours or so, but it takes an hour or two to kick in. Sounds like that wasn't the case even with your trial of it, though. I have to beat off the worst attacks by taking the Amerge early if I think it's going to be a particularly bad night, or else I take it with the first attack and then use O2 and ice to get through that attack because the Amerge won't really kick in until the tail end.
There are what...7 triptans out there? Maybe you just haven't hit the right one yet. Does O2 generally work well for you? Some nights, I just fight it out with O2 and ice instead of taking a triptan because I don't want to use them all up so fast...and I hang on to my triptans for dear life!
Good luck,
Lizzie 
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Jasen
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Re: OK, This is insane
« Reply #3 on: May 21st, 2005, 6:11pm » |
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First off I'd like to say, Some people should just stay under their rock 
Lizzie,
So I've only got 4 Triptans to go  
The O2 works well, it'll hold off an attack until the meds. can kick in. I'm not sure about taking a bottle to work with me, I drive for a living. I never know if it's going to be a bad one because they always start out the same, hit fast and are either livable or a living he!! Plus it's not uncommon to have 3 attacks a day, and the Dr. said no more then two doses in 24 hrs.
Ice will help a tad with the eye pain, except on a doozy.
Thanx,
Jasen
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If it was clusters of cash, I wouldn't complain
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Lizzie2
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Re: OK, This is insane
« Reply #4 on: May 21st, 2005, 6:32pm » |
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Jasen,
Sorry if I forget from your other posts, but are you taking any preventatives? Did you discuss any alternative therapies with your doctor such as melatonin, kudzu, etc?
Just curious if you are just relying on abortives or using a preventative strategy too.
Take care!
Lizzie
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Jasen
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Re: OK, This is insane
« Reply #5 on: May 21st, 2005, 6:59pm » |
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The family Dr. had me on Inderal, but the Neuro. said that was all wrong. Just the abortives right now. I've only seen her once so I guess I'm still in the lab rat stage of it all. I go in on thursday.
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If it was clusters of cash, I wouldn't complain
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broomhilda
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Re: OK, This is insane
« Reply #6 on: May 21st, 2005, 7:40pm » |
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on May 21st, 2005, 5:35pm, Jasen wrote:
went on for 5 hrs. and the attack lasted 40 hrs.
Whats the groups take on this.
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Are you saying you had a 40 hour cluster attack?  Somehow if this is the case I think you need to go back to your neuro review your diagnosis.
One thing I will say is DO NOT MIX YOUR TRIPTANS! This is dangerous, no matter how much pain you are in...
Hope you find relief with some feedback from your neuro and the great folks here!
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Suck it up Princess...
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gMike
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Re: OK, This is insane
« Reply #7 on: May 21st, 2005, 8:26pm » |
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Jasen,
As I recall you have been diagnosed with CH and migraines so your course of treatment is going to be tougher than either one alone. I'd get back to the Neuro and raise hell about not being given anything as a preventive. The search for an abortive is great but you need something to make it all stop.
Sorry to hear that it's back after you. I had hoped that you had it on the run.
Mike
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I used to care, but things have changed!
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Jasen
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Re: OK, This is insane
« Reply #8 on: May 21st, 2005, 9:23pm » |
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Broom,
The 40 hr. attack was last weekend when I was still seeing the family Dr. It was probably partly if not more do to med. rebounds. After that I told the Dr. I wanted a referal to the Neuro. And don't worry, I won't mix meds. Had a Dr. do that for me some years ago with anti depressents, I almost didn't see my next birthday.
It's a good thing I only live in a 2 story building, not tall enough to do much more then twist an ankle or break a leg
Hey Mike, how are you holding up today.
One can't get ahold of the Neuro. at my headach clinic on the weekends, but monday AM I'm calling and raise he!! See if I can atleast get some pain meds to hold me until my apptionment. 10 mg. of vicodin does an ok job of keeping them down to a dull roar.
I left work after a 1/2 tonight, barely got home before #3 major attack today. This is the 4th. shift I've missed in 2 weeks 
Hey, what size forstner bit would you recomend for boring a hole in my head to let the demon's out.
Thnax,
Jasen
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Karla
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Re: OK, This is insane
« Reply #9 on: May 21st, 2005, 9:28pm » |
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amerge didn't work for me. Imitrix does. There are other meds like oxygen, midrin, ergotamine, migranol, etc. to try. Don't give up and be discouraged. You just have to find the right medicine yet! Good luck!
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Karla
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gMike
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Re: OK, This is insane
« Reply #10 on: May 21st, 2005, 9:31pm » |
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Jasen,
I'm doing OK.  Maybe the verapamil and melatonin are starting to work, I hope, anyway. Not much more than just a shadow today and one hit.
I don't know if a forstner is the way to go, maybe a nice auger bit could let the demons escape!!!
Mike
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Jasen
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Re: OK, This is insane
« Reply #11 on: May 21st, 2005, 11:41pm » |
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Karla,
I've done Imitrex and Replax, both worked good for a day or two then the attacks got more severe.
I've spent the day on O2 at .5 lpm and then turn it up at the first sign of an attack. I think this helped fend off two attacks that would probably have been real doozys.
IIRC theres 7 abortaves, so I only have 4 to go. 1 a week, only 4 more weeks to go
Mike,
Glad to hear your having a better day
I'm not so sure about the auger bit, there so agressive I'm affrade it would just self feed it's way all the way thru my head, not that there's anything in there that I need.
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PerryGR
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Re: OK, This is insane
« Reply #12 on: May 22nd, 2005, 3:59pm » |
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Hello Jasen,
I don't have much to add to what others have said, just one thing. You said that you've tried Imitrex but didn't specify in which form (pardon me if you have and i missed it- i'm kind of in a haze today). Imitrex comes in to pills, nasal sprays and injections. The injections work quite well for alot of people- personally they work alot faster than pills and nasal sprays.
Hope you'll figure it out soon. PFDAN to all,
Perry.
PS: IMHO the most important part when trying to treat cluster headache (especially since you have O2 that somewhat works for you) is to find an effective preventative treatment- abortives are great but like you said their use is limited.
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Haven't posted in a while so let me re-introduce myself... Male, 25y.o., CCH sufferer for a little bit more than 5 years. Verapamil and Lithium seem to work well at the moment.
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Jasen
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Re: OK, This is insane
« Reply #13 on: May 22nd, 2005, 10:47pm » |
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Well Perry, you obviously haven't been following my story 
I was taking Imitrex in pill form.
I've only had 1 appt. with the Neuro. I get an MRA next week and then the Dr. the next day.
I think when I had similar CH some years ago I was on Verapamil (sp) I'm going ot talk to the Dr. about that next week.
Thanx for all the insights and info gang
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ClusterChuck
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Re: OK, This is insane
« Reply #14 on: May 23rd, 2005, 2:10am » |
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on May 21st, 2005, 11:41pm, Jasen wrote:
I've spent the day on O2 at .5 lpm and then turn it up at the first sign of an attack. I |
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Sorry, Jasen, I have not read your other posts, but what level of O2 are you taking? .5 lpm is NOTHING!!! I use 15 lpm. Are you using a non-rebreathing mask? Are you blocking the holes on each side of the mask when you inhale?
Sorry you are having such a hard time. Don't let it get you down too bad!
Chuck
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Kevin_M
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Re: OK, This is insane
« Reply #15 on: May 23rd, 2005, 8:30am » |
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Quote:| Whats the groups take on this. |
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One person only here.
Quote:What am I getting at, well now I'm lost.
I'm not sure where to go from here.
So I guess you could say, I'm somewhat of a newbie at Ch |
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Yeah. Sometimes, when it comes to CH, there are people who can help, and being new, starting with...
Quote:| First off I'd like to say, Some people... |
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cuts off your access to someone who probably has LOTS of answers for you. Get clues.
Quote:| should just stay under their rock |
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Be observant. Notice a few posts by the dude? This stuff is kind of like spitting on your shoe. Besides, if an asteroid hit, he'd be the first one to emerge from the dust saying "Did you feel something? Better check on the family." Anyway...
Quote:| Every time a Dr. gives me one of these meds. to stop an attack, they work great for 2-3 days. Then the attacks get more frequint and severe to the point they become violently painfuly and debilitating |
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They are called "clusters" because they come frequently, with only an abortive, they still come frequently. It don't matter what abortive, they are going to be debilitating, frequently. Abortives can stop the process when it happens, try to prevent them.
Quote:I had somewhat differnt CH years ago and they were quickly gotten under control by my then Family Dr.
I think when I had similar CH some years ago I was on Verapamil |
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Get clues, this is a big one.
Quote:| I did see the Neuro. for the first time wednesday and go in this coming wednesday for a MRA and to the Dr. on Thrusday |
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Neuro? Good move. Things might change.
Quote:| hit fast and ... it's not uncommon to have 3 attacks a day |
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It's not uncommon to have many more too, without a preventative.
Quote:| The family Dr. had me on Inderal, but the Neuro. said that was all wrong. |
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Inderal is not an effective preventative for most, the neuro will probably change that, soon.
Quote:| I've spent the day on O2 at .5 lpm and then turn it up at the first sign of an attack |
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Chuck touched on this. A cup of coffee would do you better. What, do you have cannola tubes too? Oxygen is an abortive, not a preventative.
Quote:| I was taking Imitrex in pill form. |
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Again, not an effective CH abortive for most.
As for the migraine stuff, whatever, get it sorted out, wouldn't know, here.
Kevin M
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| « Last Edit: May 24th, 2005, 8:27am by Kevin_M » |
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Gator
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Re: OK, This is insane
« Reply #16 on: May 23rd, 2005, 11:47am » |
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on May 22nd, 2005, 10:47pm, Jasen wrote:Well Perry, you obviously haven't been following my story
I was taking Imitrex in pill form.
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No need to get all huffy with Perry. He said up front he hadn't followed your entire story. That didn't make what he had to say any less helpful. Trex injections work where trex pills don't and a preventative strategy is just as important (more so in the long run) as an abortive one.
While we're on the subject of not reading - you obviously haven't been reading much. Try it before getting all insulted. It is documented here: Pills (for the most part) make lousy abortives. It has also been very well documented here that imitrex pills are next to worthless for ch and that the people for whom the pills fail report excellent abortive success with the injections. Oxygen is safe and very effective as an abortive for most people as long as it is used as specified. 7 to 15 lpm through a non-rebreating mask for 10 to 15 minutes (20 minutes max).
The fact that you are new to this disease is all the more reason to listen to the voice of experience and not bite the hand that feeds you.
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jeff4ever
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Re: OK, This is insane
« Reply #17 on: May 23rd, 2005, 5:07pm » |
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J-baby,
Don't take anything from jonny. just say ouch!
good luck on the doc visits, get close and stay close to HIM. (I am not talking about the doctor!)
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Jasen
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Re: OK, This is insane
« Reply #18 on: May 23rd, 2005, 11:55pm » |
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Gator, I wasn't gett'n huffy with Perry, had a couple in there.
Thanx everyone
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If it was clusters of cash, I wouldn't complain
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don
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Your fighting a forest fire with a water pistol.
5 lpm of 02? Imitrex pills?
Crank up the 02 and talk to the Doc about imitrex injections.
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sandie99
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Re: OK, This is insane
« Reply #20 on: May 24th, 2005, 8:03am » |
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Don't give up, there, okay?
You'll find the treatment which works for you...
PF days,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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