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Topic: Just venting... (Read 363 times) |
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BikerBob
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Just venting...
« on: Jan 9th, 2005, 3:28pm » |
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Greetings, fellow clusterheads,
I posted an introduction in the "Getting to Know Ya" forum on Dec 31.
During the past week I've been having attacks three times per night at about 1am, 3am and 5am. The first one I can abort with 02 (15 minutes at 11 lpm through a non-rebreather mask, I have a H tank). The second one I try to abort with 02 but usually have to resort to Imitrex. The third one I abort with 02 and a mug of strong coffee since I'm not going back to sleep anyway. My last episode (4 years ago) went on for 6 months.
I've been taking 9mg Melatonin before bed for the last 5 nights but it doesn't seem to help. I read here that Benadryl with Melatonin helps, but not for me. I haven't had any alcohol in weeks and I've been drinking lots of water.
I decided not to try Prednisone again. The last time I did that I used high dosage for one week then a two week taper. It felt like it was screwing up my whole system and the rebounders after the taper were horrific. I tried Verapamil during two prior episodes to no avail.
What frustrates me to no end is knowing that there's a fix out there that I can't have. I can't get shrooms, or even spores, because I live in California.
This really sucks. Oh well, I'll ride out this cycle like I've done so many times before. Grin and bear it, as they say...
Peace and best wishes,
Bob
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The mad viking
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Re: Just venting...
« Reply #1 on: Jan 9th, 2005, 3:50pm » |
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Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for at least 15 minutes on a nonbreathermask or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg every 3dh day
Tapering down the verap im on full dozage 7 days after my last hit,then over the next 5 weeks im down to 1/daily.
after 1 week on Verap retard 120mgX1 and still no hits i can quit that to
Perhaps worth to try ?
The very best from Svenn
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CC2004
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Re: Just venting...
« Reply #2 on: Jan 9th, 2005, 4:00pm » |
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hi Bob -
Since you're not on meds other than melatonin you might have success with water water water but you have to drink HEAPS! Pretty hard to begin with but you soon adjust - you have to drink at least a good size glass every hour, and I up it in the evenings to 1 glass every half hour from 6pm. You have to write it down to make sure you dont forget!
I was getting slammed pretty hard when I found this site. I wasnt on any other meds and immediately began drinking huge amounts of water - that first night I had 5 hours sleep in a row! Then no hits for 4 more days. I have had shadows and opposite side phantom all through the day and night at least half the time ever since, although they have eased right up last few days, but only 5 nights of hits since beginning WWW.
My last cycle lasted 5 months, I was 6-7 weeks into this one when I began the WWW
Lots of people do have success with melatonin helping but not stopping them. Also lots of success with verapamil but dosage crucial, you might consider trying it again if you dont have success with WWW
Check with your doctor on WWW, at least if you have any side effects - Ive kept it up because its kicked my cycle in the butt and side effects of phantom opposite side pains and shadows I can live with by comparison!
As for alternative, I'll be onto that next time round if WWW doesnt do it - I wont be letting where I live stop me 
I wish you luck and some relief - take care & keep strong
& let us know how you are getting on
CC
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| « Last Edit: Jan 9th, 2005, 4:02pm by CC2004 » |
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SFChris
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Bob,
Ckeck your private messages. We are neighbors.
Chris
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Charlie
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Re: Just venting...
« Reply #4 on: Jan 9th, 2005, 5:47pm » |
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Here's another thing that worked very well for me:
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck.
Charlie
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nani
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Re: Just venting...
« Reply #5 on: Jan 9th, 2005, 6:05pm » |
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Vent away, Bob...
Pain free wishes to you.
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Kevin_M
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Re: Just venting...
« Reply #6 on: Jan 9th, 2005, 7:18pm » |
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on Jan 9th, 2005, 3:28pm, BikerBob wrote:| During the past week I've been having attacks three times per night at about 1am, 3am and 5am. The first one I can abort with 02 (15 minutes at 11 lpm through a non-rebreather mask, I have a H tank). The second one I try to abort with 02 but usually have to resort to Imitrex. The third one I abort with 02 and a mug of strong coffee since I'm not going back to sleep anyway. |
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Bob, seems exactly how my current episode started. O2 alone not doing it after the first night attack, combining with the trex to abort helped. Third or fourth hit of the night was toward morning and abortable with O2 though.
I began working in the verap slowly at the time and it wasn't until 600mg daily that I saw a favorable change after a month of doubt about it working. Without an effective prevent, for me, cycles go on for nine months relying heavily on aborts alone in the past otherwise.
Just the way it luckily happened to work for me this time.
Kevin M
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| « Last Edit: Jan 9th, 2005, 7:19pm by Kevin_M » |
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BlueMeanie
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Re: Just venting...
« Reply #7 on: Jan 10th, 2005, 11:43pm » |
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Welcome BikerBob,
Sounds like your cycles are pretty typical. Keep trying the 02. The faster you use it, the better chance it will work. The nighttime hits are hard to stop with 02. It's usually too far up the Kip scale to abort. Thank goodness for Trex.
Hang in there bro. As you know, they will end eventually.
PF vibes,
BM
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Mr. Happy
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Re: Just venting...
« Reply #8 on: Jan 11th, 2005, 12:41am » |
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Yo..........Bob.......sure hope you get ahold of SF Chris. When a bro sez Yo, take time to go.
He's been around.
RJ
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SFChris
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RJ,
Thanks for the vote of confidence. Bob and I spoke yesterday. I'm hoping I can track down what he needs to attempt to abort his cycle... if anyone has a line on where to look, please e-mail me.
Hope you are enjoying the New Year - long time no talk!!
Chris
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