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allison_elizabeth
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my first post
« on: Dec 30th, 2002, 12:00pm »
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This is my first time posting on this site, or any site for that matter so please forgive my general lack of knowledge in posting.  I cannot tell you how wonderful it is to just know that I am not crazy and there are others who are dealing with the same issues.
 
A brief history:  I am an eposodic sufferer.  My first attack was 6 years ago and they come every 11/2 to 2 years.  I am currently in a bout.  They seem to come at the change of seasons (Summer to Fall, Winter to Spring, and this most recent of course Fall to Winter)  Is this common with anyone else?  I actually feel pretty lucky after reading many of these posts.  I usually have between 3 and 4 headaches a day but this bout seems not so severe.  I've been averaging one every other day for about two weeks now.  They've been happening around 2 in the morning but my last one was at 7am.  I cannot tell you how relieved I was to hear others talk about being afraid to go to bed.  I play all sorts of mind games -  at one point I was convinced that a particular pillow I was using was causing the dreaded headaches.  How silly in retrospect.  Has anyone else experienced bouts that were not as bad as others?  
 
Imitrex injections work for me - again I'm feeling pretty lucky - but I suffer pain in the back of my head and neck constantly throughout the bout.  Is this common?
 
During my last attack (Spring of 2001) I tried methylprednisone (please forgive spelling).  This stopped the headaches as long as I was taking 6 pills a day but as soon as I went to 5 they came back! ARRG!  Has anyone had experience staying on this medication for extended periods of time?  I am hesitant to experiment with this medication now as my bout doesn't seem to be as bad as previous ones.  
 
My biggest problem has been trying to find a doctor who understands cluster headaches and the pain associated with them.  I am so tired of doctors who think cluster headaches are just bad headaches!!  If I have one more doctor tell me about a new pill that will work in 30 minutes as if that is a good thing, I think I will scream.  I live in Norfolk, VA.  Anyone out there with suggestions for a doctor that knows what he's talking about?
 
Thank you so much for this web site!  It has also allowed my boyfriend to understand what I go through.
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Re: my first post
« Reply #1 on: Dec 30th, 2002, 12:15pm »
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allison_elizabeth welcome to the family. You will find out here, that the group as a whole favors: Verapamil as a preventive with oxygen and triptans as abortives.  
 
What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets, NOT the regular tablets) combined with oxygen therapy. You canít get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you canít take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in ďoxygenĒ and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for ďtriggersĒ, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when Iím asleep I canít feel the shadows increasing and I wake up with the Big One. Jonny clued me in that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.
 
These people will help you in any way they can, but read everything you can on this site and the OUCH site. While at the OUCH site, join up, itís free.
 
PFDAN
 
David J.
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Re: my first post
« Reply #2 on: Dec 30th, 2002, 12:23pm »
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You have a duplicate post. You need to go to the other post and click the "remove" button in the upper right corner of that box, and delete the duplicate.
« Last Edit: Dec 30th, 2002, 12:24pm by SommelierCH » IP Logged

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Re: my first post
« Reply #3 on: Dec 30th, 2002, 1:20pm »
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Oh good.......I thought I was seein double....welcome allison.....Pam  Grin
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Re: my first post
« Reply #4 on: Dec 30th, 2002, 1:42pm »
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Glad you found us, too bad you had to look!
 
The people here are a great bunch.  
 
on Dec 30th, 2002, 12:00pm, allison_elizabeth wrote:
†They seem to come at the change of seasons (Summer to Fall, Winter to Spring, and this most recent of course Fall to Winter) †Is this common with anyone else?

 
Over 20yrs, I have had them at any time of the year.   BUT, for me, they are most common in spring or fall.
 
on Dec 30th, 2002, 12:00pm, allison_elizabeth wrote:
I suffer pain in the back of my head and neck constantly throughout the bout.  Is this common?

 
For years, I never realized that the two went together.  After hearing numerous others mention it, I'm sure they do (at least for me).
 
PFDAN,
Grant
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  cathy_lucas47   cybersis1965
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Re: my first post
« Reply #5 on: Dec 30th, 2002, 2:02pm »
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Hi Allison_Elizabeth sorry you're a sufferer, my husband suffers at similar times to you and also has head and neck pain during a cycle....hope you find a good doc.
 
Wishing you PFDAN's
 
Cathy & Wes Smiley
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Re: my first post
« Reply #6 on: Dec 30th, 2002, 2:08pm »
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A-E: Sorry you've got to be here, but this is a great bunch of folks to hang with. ;D
 
I get the head pain with stiff sore neck and shoulder muscles as well. The stiffness in my neck and runny nose are usually signals for me to get ready. Embarassed
 
Michael
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Re: my first post
« Reply #7 on: Dec 30th, 2002, 4:43pm »
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allison - I hope you've clicked your way thru this site and the OUCH website. Over on the OUCH site is a list of recommended doctors. Maybe you can find one in your area.
Welcome and good luck
domm
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135447360 135447360   mondocharlie   mondocharlie
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Re: my first post
« Reply #8 on: Dec 30th, 2002, 5:05pm »
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Welcome to our little world. You have a ton of company that has episodics according to the time of year. Mine were mostly in fall and spring but now and then would appear in mid summer for a few days.  Lots of us get them an hour or two after falling asleep. There is one thing that I found: Sleeping in my recliner would often decrease by one, my attacks. I usually had about 3 or so during the day and 2 at night, which sent me to the kitchen to sit in the dark and moan.  
 
I never had neck pain. Mine was confined to my forehead around the eye which felt like someone with a posthole digger was testing the tissue behind my eyebrow.  They usually lasted about 15 to 30 minutes. Sometimes this would help....as goofy as it soundsCheesyr.  
 
Wright's Circulatory Technique
 
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. Itís not a miracle, but itís been helpful to many.
 
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on ďredirectingĒ blood circulation in order to retard flow to the head.  This is done by trying to ďsendĒ blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.  
 
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided.  If you let up or lose concentration, itís very hard to restart this process.  It may take some time but when this works, the relief is almost immediate.  
 
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood.  Itís important to keep at it THROUGH the pain. This will be difficult, but itís the only way this technique will work. Donít let up until you are sure the attack has ended.  
 
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
 
When awakened in horrible pain, itís very hard to focus, but I think itís always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.  
 
I wish you the best of luck - Charlie Strand
 
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Mark C
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Re: my first post
« Reply #9 on: Dec 30th, 2002, 5:05pm »
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Welcome allison,
I didnt hear anything crazy in your post....as a matter of fact it sounds all to familier. Knowledge is power and there is plenty of power here and in the ouch site. I have attached a good link to get you started. Good Luck,
Mark
http://www.clusterheadaches.org/resources/index.htm
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allison_elizabeth
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Re: my first post
« Reply #10 on: Dec 30th, 2002, 5:31pm »
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Thanks for the advice and leads!  I will feel much more prepared the next time I go to my doctor.  
 
One other "noninvasive" technique that I'd like to share.  I started taking yoga classes a few years ago and applied some of the breathing exercises designed to bring oxygen to targeted areas of the body.  Again, might sound kind of silly, but on occassion I have been able to lessen the severity and length of a serious headache through this breathing.  Maybe this will be helpful to someone.  Thanks again for the support!
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27810130 27810130   kennkurr  
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Re: my first post
« Reply #11 on: Dec 30th, 2002, 6:50pm »
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Welcome to the board!  Sorry that the beast is makin' Clusterhead Flambe out of your cranium (Too bad the beast feels it's necessary to tenderize your cranium first 'eh?).  Good luck!
 
PFDAN.................................. Drk^Angel
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