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New Message Board Archives >> 2005 General Board Posts >> Clusters at night...
(Message started by: findjoshua on Nov 22nd, 2005, 6:50am)

Title: Clusters at night...
Post by findjoshua on Nov 22nd, 2005, 6:50am
Last night I was awakened by a subtle pain, the kind of vague pain that usually preceeds the onset of a headache.  This one seemed to come on immediately and was pretty intense for about an hour.  No meds left (no refills left) and was just trying an infinite number of pressure points, hand positions, rubbing techniques as per usual.  I thought about how I called my doctor and asked if my refill would be called in yesterday and they said "if we get to it, but probably tomorrow" and I thought about all the thousands of ways people who suffer from cluster must  rub and touch their heads and necks and how for a brief instant it seems as if every new position will work.  All in all I just sat and rocked and thought about writing this post today to complain and say after years of getting these I'm kind of beginning to just get angry and also resigned to it.  I just read a great link that someone on this site gave me re the various meds etc... so will take that to my doc when I go.  Not much else to report.  I started taking Melatonin the other night to try to help the night clusters, so maybe that will help in the long run.   :)  Just wanted to vent... Joshua

Title: Re: Clusters at night...
Post by Melissa on Nov 22nd, 2005, 6:57am
Venting once in awhile is good, as long as you try to not let the pain consume you when NOT getting hit. ;)

I'm sorry for the delay by your docs office, sounds like a bunch of bureaocrats(sp?). >:(  My doc has my scripts called in right away, as it takes me 30 min to get to the pharmacy, so it's ready when I get there.  If I were you, I'd keep calling every hour until someone there says that its been called in.... but that's me.

BTW, what meds is it you take?

*big hugs*
mel

Title: Re: Clusters at night...
Post by findjoshua on Nov 22nd, 2005, 7:08am
Hi Mel. :) I had a doctor previous to this new one but they stopped taking my insurance.  They were on the ball 100% with everything, and this new guy is like two steps down.  It's hard to replace a system you've worked with well for years.  Anyway, I will start the calling campaign today, I usually do that, but was giving them the benefit of the doubt.  :)  Re the meds, I take Maxalt 10mg, or Imitrex nasal spray.  I am going to ask  doc about oxygen too.  
.
J.

Title: Re: Clusters at night...
Post by Melissa on Nov 22nd, 2005, 7:13am
Sounds like you're on the right path Joshua.  I wish much luck for you and that your suffering is minimal, if none at all. ;)

:)mel

P.S. How long do your cycles usually last?  Have you thought about using a preventative along with the abortives?  Myself, mine last for 37 days, so I tend to stay away from preventatives and just go with the abortives.

Title: Re: Clusters at night...
Post by maffumatt on Nov 22nd, 2005, 7:23am
I keep filling my my prescriptions throughout the year. It allows you to stock up and not be caught with your pants down. I have been able to stock up on my Trex for since being PF..

Title: Re: Clusters at night...
Post by findjoshua on Nov 22nd, 2005, 7:35am
That sounds like great idea (re the med stockpiling.)   After this cycle (or during it) I will try to stock up.  I foolishly thought they might actually be gone this time.  I haven't gotten them since I quit smoking last year, so I thought maybe that was the answer, but apparently not!  :)  Re my cycle length, I don't really know how long they are to be honest.  Deinitely longer than a month or maybe two sometimes.  I never paid much attention when I was younger.  This is the first year I'm being "adult" about it and trying to fight back instead of just suffering and taking abortives.  

Title: Re: Clusters at night...
Post by Jasmyn on Nov 22nd, 2005, 7:52am
You hang in there Joshua and I'm wishing you PF times and a very short cycle.

Title: Re: Clusters at night...
Post by vig on Nov 22nd, 2005, 8:24am
mmatt's got the great idea there...
you can still be optimistic and hope they don't come back... but prepare anyway.
if nothing else, it will give you confidence.
good luck bro

Title: Re: Clusters at night...
Post by Jeepgun on Nov 22nd, 2005, 9:35am
Hi, Joshua. One of the things I do, when I'm getting hit, is to take my thumb and middle finger of my right hand and just to  the outside of your eyes, at the fronts of your temples, you'll find two tiny round sinuses. (press around until you find them) Then, with my left hand, I squeeze the ropy muscles on the back of my neck between the tips of my fingers and the heel of my palm. It sometimes helps. Other than that, I dig the corner of my palm (on the pinky side) into my eye, rock, or pace.  :-/

Good luck.. I hope you get your meds filled soon. It's criminal that they would put you off like that. Clearly, they don't understand... (Personally, I would be making a rather unpleasant face-to-face visit to them!  >:( )

-Frank

Title: Re: Clusters at night...
Post by burnt-toast on Nov 22nd, 2005, 11:31am
Unfortunately "The Night Time is The Right Time" for 90% of my cluster hits.  Most of the remaining hits occur if I attempt to rest of sneak in some needed sleep during daylight hours.  The result is fear of sleep, fear of rest and an just plain exhaustion.  

I can't say I can offer any solutions because I haven't found anything that makes things better.  Only that I understand what you go through.

Hope the meds. issue gets worked out soon because without em' things get worse.

Best Wishes,

Tom        

Title: Re: Clusters at night...
Post by Charlie on Nov 22nd, 2005, 1:52pm
Sorry the beast enters your dreams but you do sould like you know what you're doing. Damn doctors though.... http://www.netsync.net/users/charlies/gifs/mad.gif

I have a dermatologist that prescribes an antibotic for me as a maintenance drug. Saves me tons and makes things easier. Great way to stockpile too.

When you start getting hit, try this:

                 Dr. Wright’s Circulatory Technique:

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.

Charlie      



Title: Re: Clusters at night...
Post by thomas on Nov 22nd, 2005, 2:23pm
How much melatonin are you taking?

Title: Re: Clusters at night...
Post by findjoshua on Nov 22nd, 2005, 6:35pm
First - Charlie, thank you so much for the technique.  I will give it a try.  I appreciate you taking the time to post.  

Second - Melatonin, I had taken 9mg before bed but find that it really messes with my sleep patterns.  A friend recommended that I try taking melatonin releasers instead, like calcium or 5-HTP instead.  

Getting a headache as I type.. jeez...  check back with you guys later.




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