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Topic: Suggestions please.. (Read 380 times) |
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Kevin
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Suggestions please..
« on: Aug 16th, 2005, 10:14pm » |
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I have had CFs for the past 20 years. They typically last 2-4 weeks, 30-60 minutes a night. For the past few years I have been "fighting" them with a combination of Verapamil, Oxygen and Imitrex. It seems like the more I fight them, the longer they stay and also they come more frequently (day and night). Has anyone else had the same response from fighting these? I keep thinking that if I just go back to taking it once a night for an hour, I might be better off. I tried it last night and go my butt kicked from midnight - 3 am with a major attack, then had a minor throughout the whole day until I had a major one starting @ 5 PM and gave up and used an Imitrex. I am totally confused on what to do. I have NO insurance now which doesn't help.
THANK YOU FOR ANY ADVICE!
Kevin
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: Suggestions please..
« Reply #1 on: Aug 16th, 2005, 11:47pm » |
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Many have complained that imitrex causes rebound headaches, and verapamil may lengthen the cycle. Maybe you might want to drop the verapamil, stop the imitrex, and try one of the alternatives? I would suggest the KUTZU experiment, first.
With the oxygen, it sounds like it is not giving you the relief that you need, so that you end up taking the Imitrex. Are you sure you are doing it the right way? See my thread, in the medical section for some hints. Here is the link to it: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1123513751
Remember, I am not a doctor, so you might want to consult your doctor before you try the kutzu.
Good luck, and keep fighting the beast. DON'T let him rule your life! Many of us have been fighting him for 20, 25, 30 or more years. You CAN live with the beast. Not fun, but as many of us are here to testify, It CAN be done !! !! !!
Chuck
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Jasmyn
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Re: Suggestions please..
« Reply #2 on: Aug 17th, 2005, 1:39am » |
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Kevin, sorry man, never a good thing to hear that the meds and O2 are not stopping the Beast in its tracks.
I agree with Chuck, it will surely help to take his advice.
PF wishes to you!
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Jazz 
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Bob P
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Re: Suggestions please..
« Reply #3 on: Aug 17th, 2005, 8:48am » |
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Agree with Chuck too. Try the alternative treatments, Kudzu or shrooms.
Imitrex and most of the triptans cause more frequent attacks for me (not rebounds) so I stay away from them.
As I get older, 54 now, my remissions get longer but so do my cluster cycles. Don't know that i can attribute it to the medications. Some think the cycle is going to be what it is no matter what we do. Others think that we need the pain feedback to let our head know that something is wrong and to fix it. Kill the pain with medications and our head doesn't know something is SNAFU and just keeps doing what it is doing. No real scientific proof for either side.
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"SHUT UP HUB!"
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brainfreeze
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Re: Suggestions please..
« Reply #4 on: Aug 17th, 2005, 11:35am » |
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It happened that way for me. It seemed the more med's I took the worse I felt and the worse the CH got. Docs called them 'breakthrough' ha's. I called it failure. I quit taking everything since it didn't work(o2, verap, lithium, you name it I took it) . Now I use Excedrin (or Lortab) during day and Imitrex on the bad hits. Nothing on the OTC market compares to what Excedrin can do. I also experimented with different sleep positions. Head at foot of bed, head hanging off bed. Sticking cotton up nose, ears.... Those tricks brought me more rest than all those drugs. I've had them for 17 yrs. and in the last 13 of them, it seems the less I 'screw' with them, the better off I am.
Now when my cycle is starting to lift, I don't take anything except a cold shower, and a fan. I test these 'back off' treatments to see if the CH can be tolerated. If not, I hit the Imitrex and try again the next time. Before long, the CH's leave.
Sorry you are having a bad time. Sending you PF vibes..
take care..God Bless..
Susan
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Susan
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Jeepgun
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Re: Suggestions please..
« Reply #5 on: Aug 17th, 2005, 1:56pm » |
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Just to toss my own hat in the ring on this one, here is what I experienced with Depakote, then Verapamil and Imitrex, compared to what I experienced with kudzu:
Depakote: (Only stayed on it for one week)
First four days and three nights: Nearly pain-free.
Fourth night: Three of the longest, hardest, worst CH attacks I've ever had. If there would have been a gun within reach, I wouldn't be here, today. No joke.
Verap/'trex combination:
Hit duration: 45-180 minutes each.
Intensity: 8-10, every damn time.
No. of hits/24-hour period: 4-6
Shadows: Hard shadows everytime I used the 'trex!
Length of Cycle: 13 WEEKS! 
Kudzu: (Two 750mg tablets, 3x/day)
Hit duration: 30 minutes.
Intensity: 4-5? Just enough to get me pacing.
No. of hits for entire cycle: 8!
Shadows: NONE.
Length of Cycle: 6 weeks! (continued taking the kudzu for a total of 8 weeks, though
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| « Last Edit: Aug 17th, 2005, 2:00pm by Jeepgun » |
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vig
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Re: Suggestions please..
« Reply #6 on: Aug 17th, 2005, 2:44pm » |
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on Aug 16th, 2005, 10:14pm, Kevin wrote:| I have had CFs for the past 20 years. |
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CF is way worse than CH...
count your blessings
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never, Never, NEVER quit. -Winston Churchill
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Bob P
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Re: Suggestions please..
« Reply #7 on: Aug 17th, 2005, 5:24pm » |
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Quote:Doesn't that stand for cluster fuck?
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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don
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What dosage of verapamil are you using and have you tried a prednisone taper?
Prednisone is an inexpensive med.
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