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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Battle with the Beast
        
(Message started by: Revolvr on Oct 26^th, 2004, 4:09pm)

Title: Battle with the Beast
Post by Revolvr on Oct 26^th, 2004, 4:09pm

This is but one battle in a longer CH episode I have been fighting since October First. I had a peak of 11 CH a day, typically 6 to 8 a day for a while. Using Imitrex nasal, shots, and O2 to abort. It had reduced to 3-4 CH a day over the last 5 days so I was feeling a little better that the episode was tapering off.

Then on Saturday I was slammed with 7 cluster headaches. Sunday I woke up, already having 2 CH and feeling very depressed and defeated. Then mid-day Sunday I had a bad CH that even an Imitrex shot couldn’t completely eliminate so I had headaches most all day. Besides being depressed, I was worried too because I was about out of Imitrex with no more refills.

So Monday morning I wake up, already having used one Imitrex injection and aborted one CH with O2. This time I’m feeling pissed. I decided no more Imitrex until after I go to bed and I would use whatever O2 was necessary.

At 9 AM I started feeling the Shadows. I hit it with O2: O2 usually makes short work of Shadows, and I wanted to hit anything I felt as early as I could since O2 is less effective when delayed. I kept using short bursts of O2, like 5 minutes, at ever increasing intervals. After 11 AM I had a feeling a real CH was coming on soon. I popped a couple Lortab, checked my O2 supply – 1000 PSI – good, and hunkered down for battle.

At 11:30 AM the first real CH hit. I sucked the O2 for 20 minutes and it mostly worked - for 15 minutes, then the CH came back for round 2. Another 30 minutes of O2 and it was mostly gone, the Lortab taking the edge off the remaining pain. 10 Minutes later its back, 20 minutes later its gone. Back and forth we parried, like playing whack-a-mole with the Beast.

Several times I almost reached for the Injector but held off. A few hours later took more Lortab. The beast kept coming and I kept breathing O2 between breaks of 10 to 20 minutes.

After a while I noticed the time on O2 was decreasing and the time between O2 was increasing. About 4 in the afternoon I suddenly realized I had not used O2 since 2:30 in the afternoon! Had I won?

I declared victory later in the evening. No O2 since 2:30 PM. Not even any Shadows since! Felt great in fact (meaning normal for the rest of us). Even after the Lortab wore off I felt fine. I felt like I had been through some Lord of the Rings magnitude epic struggle with the beast and had won! I had used almost 500 PSI of O2.

About 10:40 PM that evening, I did have another CH and I did take an Imitrex Injection as I expected I would have to do. So I was not too let down by this. But what is interesting is that today, Tuesday, I should have had 2 to 3 CH events already, but I have had NONE. I feel like I have done something to this episode, something positive to the healing process, whatever that is. I won’t think for a moment this episode is suddenly over; my experience is these things slowly peter out, but the pattern has definitely changed.

So I post this because it’s a positive story – at least it raised my spirits – and this board needs positive stories. And also because whatever I did it changed the pattern and may have moved me closer to the end of this episode. Any such experience is useful to add to the knowledgebase.

I’ll post a follow-up in a week or so.

Cheers,

-- Rev (a newbie to this board)

Title: Re: Battle with the Beast
Post by Valerie on Oct 26^th, 2004, 4:26pm

Way to go! Keep fighting the fight, we can't let the Beast win. I like your descriptions, it's right on target to how I feel a lot of the time.

Hugs,

Valerie

Title: Re: Battle with the Beast
Post by Bob_Johnson on Oct 26^th, 2004, 4:32pm

Glad you're better but--you didn't mention preventive meds. Hope you are using one, given the # of attacks you are having.

Title: Re: Battle with the Beast
Post by Revolvr on Oct 26^th, 2004, 4:43pm

With this episode I am trying Topamax and Depakote. I started the Depakote about 5 days ago so I am not at full dose yet. Previously I've tried steriods and Verapamil - neither worked.

This is the roughest episode I've had. I don't recall past CH episodes with more than about 4 CH a day. But this time I am recording the day and time of each CH, and the abort method so I can do some statistical analysis on it (yea, I'm an engineer).

-- Rev.

Title: Re: Battle with the Beast
Post by Jonny on Oct 26^th, 2004, 5:52pm

on 10/26/04 at 16:43:10, Revolvr wrote:

. But this time I am recording the day and time of each CH, and the abort method so I can do some statistical analysis on it

Damn good idea, welcome aboard bro....keep fighting
[smiley=headbanger.gif]

........................jonny

Title: Re: Battle with the Beast
Post by Ronny on Oct 26^th, 2004, 5:53pm

Hi,

One hell of a battle but you've won this one.

Keep it up. :D

Ronny.

Title: Re: Battle with the Beast
Post by E-Double on Oct 26^th, 2004, 6:19pm

Quote:

. But this time I am recording the day and time of each CH, and the abort method so I can do some statistical analysis on it

Uh oh.. another data dork like me..lol

Good idea and good luck!!

Eric

Title: Re: Battle with the Beast
Post by Charlie on Oct 26^th, 2004, 9:52pm

Welcome aboard and it's good to read something positive. I hope you stick around as you'll find some good ideas for dearling with this horror. Here is one that I used very successfully:

Dr. Wright’s Circulatory Technique

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

Title: Re: Battle with the Beast
Post by sandie99 on Oct 27^th, 2004, 7:03am

Keep on fighting the good fight, Rev! :)
So sorry to hear that you had to have 11-a-day time, it's hellish! >:(

Wishing you many PF days,
sandie99

Title: Re: Battle with the Beast
Post by nani on Oct 27^th, 2004, 11:54am

Good for you - Keep fighting rev... [smiley=thumb.gif]

Title: Re: Battle with the Beast
Post by ArCane on Oct 27^th, 2004, 1:01pm

Way to go Rev. Glad you beat the beast back, atleast for a little bit. Keep it up!