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LAW
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New 2 the board but not 2 the pain
« on: Feb 24th, 2004, 10:55am »
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Hello out there,
 
I have visited this site quite a few times in the past few years but have never become a member until now.  I am 29 years old and have been suffering from cluster headaches for 12 years.  
The first 3 or 4 years I was mis-diagnosed with sinus problems and even underwent a sinus surgery.  The surgery obviously did not help being as though that was not the problem.    I have seen several neurologists and have been diagnosed with cluster headaches by each one.  Quite honestly the only thing that they want to do is drug me up or perhaps that is the only thing that they can do?  I was put on beta blockers at 24 yrs. old but I never took them because I refused to be medicated at such an early age.  I have been on prednisone twice and have tried all of the different triptan’s out there.  Imitrex makes me feel like I'm having a heart attack so I stay clear of that.  I am at the point now where I just will not take any type of medication.  I feel as though I have tried all of them and ultimately the only thing that they do is pollute my body.  Last year I tried oxygen therapy combined with acupuncture.  I love the oxygen therapy and found it to be very effective at the onset of the headache.  It does nothing as far as preventative measures but it certainly helps to abort the headache early on.  As far as acupuncture is concerned, my first instinct is to say that it didn’t work preventatively.  Unfortunately, I didn’t start to receive the acupuncture until the end of my bout last year.  I was at the end of a 2 ½ month bout so, the headaches stopped but not due to the acupuncture more due to the timing.  
So, needless to say, my cluster time a year has arrived yet again.  Yesterday was the first really bad one.  After the headache finally left me I spent the rest of the morning crying.  Even though I have been fighting these headaches year in and year out for 12 years now, I still get angry and scared each time they return.  It’s as if each year I just pray that this year is going to be different than the last.  The moment that first really bad one ends I am just consumed with fear.  Knowing that I am going to have to, once again, endure this pain everyday for the next few months is a living hell. I received my oxygen last night and it was my saving grace this morning when the pain woke me from my sleep.  I begin acupuncture tomorrow.  At this point I am not focused on preventing next years episode I am more focused on ending this year’s episode as soon as possible and I’m hoping that acupuncture can help do that.    I have a company trip to Las Vegas coming up in 2 weeks and right now I am scared to death about it.  I can care less about the not drinking but I do care about having my roommate & fellow employee seeing me go through a headache.  As the rest of you here know first hand…it is not a pretty sight.  
 
It’s very refreshing to find a place, such as this one, where everyone here knows exactly what you are going through.  We all share a common ground…a very painful common ground but a common ground none the less!  
 
Laurie  
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Re: New 2 the board but not 2 the pain
« Reply #1 on: Feb 24th, 2004, 12:11pm »
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Hi Laurie. Welcome to the board.
 
There is an optional treatment that many have said works for them. I have not tried it.
IMHO It’s not medications and won’t pollute your body. But it is something you have to decide on for yourself and is nobody else's business if you do or don’t choose to use it.
 
Go to the Medications, Treatments, Therapies section of this website. Scroll down to the  Updates on Psilocybin Therapies Lots to read there.
 
Also click this link
http://www.clusterbusters.com/
 
To help with the employer and other employees click this from the OUCH website (button on left side of your screen)
http://www.clusterheadaches.org/resources/employer_form.doc
 
and this one
http://www.ouch-uk.org/ch/note_colleagues.cfm
 
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Re: New 2 the board but not 2 the pain
« Reply #2 on: Feb 24th, 2004, 12:49pm »
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Bob-  
 
Thanks for your reply.  Regrettably I can’t seem to find any info on IMHO.  As far as Psilocybin Therapies…is that mushrooms?  I apologize for my ignorance here but I’m a bit lost on the websites.  I went to medical info on this site and I couldn’t find IMHO anywhere.  Am I missing something?
 
Thanks-
 
Laurie
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Re: New 2 the board but not 2 the pain
« Reply #3 on: Feb 24th, 2004, 1:06pm »
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I too am relatively new to the site, have visited and read a lot previously, but was not much of a participant before.  Trying to give back a little for all the help I have received here.  Isn't it just wonderful to find people that truly understand what you are going through.
 
Went thru 2 of the sinus surgeries myself in the early years and have been on lots and lots of medicines.  Try all the things suggested here....I've found most of them can help quite a lot.  One of the best is the "water".  It may not get rid of it, but sure does seem to lessen the intensity a lot of times.  Right now I am trying the melatonin...helping..but jury is still out right now.
 
Try and keep a positive outlook...visiting here contributes loads to that.  (Visit the jokes message section...spent 1/2 hour yesterday laughing my ass off)  
 
Fight the good fight and blow off the non-ch'ers.  They'll seldom understand.
 
Here's hoping for pf days ahead. Cheesy
 
 
 
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Re: New 2 the board but not 2 the pain
« Reply #4 on: Feb 24th, 2004, 1:30pm »
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It truly is so wonderful to find so many people who do understand.  I would not wish my pain on my worst enemy yet I always say that I just wish I had someone who can relate to what I am going through…now I do and I am forever grateful for that.  I do keep my head up or at least I do for 9 months out of the year.  When the bout returns it’s so damn hard to stay positive.  I just question, “why me?” over and over again.  Why do I have to endure such excruciating pain year after year?  Why can’t I just be “normal” (whatever that may mean) like everyone else or at least pain free?  The only thing that has gotten better over the years is my tolerance for pain.  I honestly feel like after going through this pain I can handle ANYTHING!  When they first started I use to scream & cry and beg my father to take me to the emergency room, I swore to him that my head was exploding inside.  Then I got into the habit of banging my head to try to divert the pain.  Now I just simply handle it the best way that I know how to.  I stay calm or as calm as I possibly can and I repeat over and over again that the pain will pass.  I have my breathing techniques down and that too certainly helps.  Sometimes I don’t even know anymore if I’m crying or not because my eye automatically tears during the headaches. I am a firm believer in the saying…what doesn’t kill us only makes us stronger.  
 
I apologize for the babble but I am just so happy to be able to talk (write) about it, knowing that those who are reading are just shaking their heads saying, “oh yeah, I know all about that.”  
 
Laurie
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Re: New 2 the board but not 2 the pain
« Reply #5 on: Feb 24th, 2004, 3:47pm »
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Hi Laurie and Carolyn,
 
Yes, BoB_G was referring to the alternative treatment. Click here for information:
  www.clustebusters.com
 
Currently this treatment is working well with me.  I'll have a full report soon.
 
Welcome to the both of you to this forum.
 
Regards,
 
John
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Re: New 2 the board but not 2 the pain
« Reply #6 on: Feb 24th, 2004, 5:02pm »
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on Feb 24th, 2004, 12:49pm, lwalsh wrote:
Bob-  
 
Regrettably I can’t seem to find any info on IMHO.  
Am I missing something?
 
As far as Psilocybin Therapies…is that mushrooms?   
Thanks-

LMAO. Please excuse the giggling at this end. You won't find IMHO in the meds section. It's shorthand for In My Humble Opinion. Here's some more often used here.  
Click on this
http://www.clusterheadaches.com/newvisitors.html#acronyms
 
And Yes, I was referring to mushrooms.
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Re: New 2 the board but not 2 the pain
« Reply #7 on: Feb 24th, 2004, 5:33pm »
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Welcome and there are some great ideas and good advice here. You might look into these links as well:
 
Here are a couple links that may be helpful. The first being a technique that worked for me:    
 
http://www.netsync.net/~charlies/
 
This one is a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain these attacks to families, friends and employers. Its author encourages copying. It’s well worth it.  
 
[url]"http://www.ouch-uk.org/ch/note_colleagues.cfm"  
[/url]
 
Good luck and let us know how you're getting along.
 
Charlie
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Re: New 2 the board but not 2 the pain
« Reply #8 on: Feb 24th, 2004, 5:58pm »
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Well, if not anything else Bob I have to tell you that I am sitting at my desk laughing hysterically at the fact that I did not know IMHO was an acronym.   laugh  Thank you for filling me in, obviously I was missing something.
 
I am (obviously) not very message board savvy but I sure am catching on now.  
 
After doing some serious searching for "IMHO" I did eventually read about the mushroom therapy on OUCH.
 
 Thank you for the info. and for the lesson in acronyms!
 
Laurie
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Re: New 2 the board but not 2 the pain
« Reply #9 on: Feb 24th, 2004, 6:14pm »
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Laurie,
 
     Welcome to the site.  Hope your getting all the info you need and a little humour to lighten your hardening days.  I too felt great relief when I found this place.  We all live day by day, some things work for some people and have no effect on others.  As many others on this board, you are very brave to deal with these without meds.  I personally can't function without at this point in my life.  I am a mother of 2 and constantly have a house full of kids so I usually use what works the fastest.  Hope your days to come with be PF and tell us what happens with everything you try.
 
All the best to you!
 
Belle
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Re: New 2 the board but not 2 the pain
« Reply #10 on: Feb 24th, 2004, 7:18pm »
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on Feb 24th, 2004, 5:58pm, lauriew wrote:

I am (obviously) not very message board savvy but I sure am catching on now.  
 Thank you for the info. and for the lesson in acronyms!

 
You're welcome. If you stick around and help here it won't be long before someone tells you to STFU. Then you'll know that you've been excepted as a true clusterhead and dignified member of this board.
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Re: New 2 the board but not 2 the pain
« Reply #11 on: Feb 25th, 2004, 2:01am »
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Welcome to the board, Laurie
 
Good advice from BobG and John.  You just have to stay with it tillyou find the right combo that works for you.
Hope you have a good doc that will listen.  You will learn alot from this site.  Lots of meds and combos of meds are talked about.  There IS a med somewhere that will give you some relief.
 
Let us know how you are doing.
 
PF vibes,
 
Jean
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Re: New 2 the board but not 2 the pain
« Reply #12 on: Feb 28th, 2004, 12:44pm »
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Update:
 
After reading so much on this board about Melatonin I decided to give it a try.  Last night was the first night that I tried it...4 mg (time release) an hour before bed.   I normally get one HA' at 2 AM and then another at 9 AM.  Last night I had a pain free night, as well as, a pain free morning.  As always these HA' have been coming like clockwork for the past week so, I can only assume their absence was a direct effect of the Melatonin.  
 
One thing that I did fine strange was that my body still woke me at 2AM & again at 9AM.  As soon as I woke up I looked at the clock saw that it was 2:01AM & said "oh shit", I layed there checking around my mind looking for the pain but to no avail.  There was no headache in sight not even a shadow.  Yet, I still woke from a deep sleep.  Perhaps tonight I will up the dose of Melatonin.  
 
I'm thrilled about having my first painfree night/morning in a week but I also know better than to get too excited after only one night.  I'm obviously going to stick with the Melatonin for now & pray that last night wasn't just some freak tease.  
 
Thank you all for the great advice & I will keep you all posted on my experience and hopeful success with Melatonin.
 
Laurie
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Re: New 2 the board but not 2 the pain
« Reply #13 on: Feb 28th, 2004, 7:12pm »
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Wow, this is cool. We love success stories.
 
You may want to wait a few days before upping the melatonin dose. If it worked it might be best to leave it alone. There is no use in "over-dosing" unless you really need to.
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Re: New 2 the board but not 2 the pain
« Reply #14 on: Mar 4th, 2004, 12:46pm »
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It has now been 6 nights since I have started the Melatonin.  I started out on 4mg time released but learned early on that was a bit too much for me as I couldn’t shake the grogginess the next day.  So, I am down to 3mg all together (2mg time released and then a 1mg).  The first five nights have truly been a God send.  I have been HA free both day & night since I began with the Melatonin.  Then last night (night 6) I got hit.  I awoke @ 2AM with a K7, ran for the O2 and it was gone in 15 mins.  Back to bed then awoke again @ 4:30AM with another K7, same routine as the first, O2 & back to bed.  This continued at 7:30AM and again @ 8:40AM.  I have gone from 5 night’s headache free to one night with 4 HA.  For 5 nights Melatonin has kept me completely HA free and then on the 6th night it’s as if I didn’t even take it. I took the day off of work today b/c I am exhausted from last nights ambush.  Returning back to sleep is simply not an option as I know that I will only be awakened again in an hour or so by the beast.  It’s one of those, “I HATE living like this” days.
 
I think that it is important for me to note a few things that I “think” may have contributed to the dramatic switch in my cycle.  Last night @ about 10PM I decided to clean my bedroom.  I was running around for about an hour or so cleaning i.e exerting myself.  Any type of physical exertion during a cycle has always been a trigger for me.  Also, I was dusting & I am allergic to dust.  I know that dusting sounds pretty stupid being as though I am allergic to it but I never have any adverse reaction to it. I just assumed that the Melatonin was working so well that the dust wouldn’t aggravate my CH.  Perhaps I was wrong?  The other thing that has my curiosity peaked about last nights 4 HA ambush is that I began my “other” female cycle today.  I have never noticed any connection between the two until now.  I do apologize for being so personal here but I am wondering if any of the other females out there know of any connection between menstrual cycles and the intensity and/or frequency of CH?  
 
I do realize that no matter how much I analyze my actions last night I am not going to know the exact reason for the ambush of attacks.  Good ole’ CH, always leaves ya guessing.  I will however make it a point to not do any of the same things that I did last night tonight and hope to slip back into pain free Melatonin nights…wishful thinking of course.
 
As always thanks for listening and any insight is greatly appreciated.
 
LAW~
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Re: New 2 the board but not 2 the pain
« Reply #15 on: Mar 4th, 2004, 1:02pm »
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on Mar 4th, 2004, 12:46pm, LAW wrote:
I do apologize for being so personal here but I am wondering if any of the other females out there know of any connection between menstrual cycles and the intensity and/or frequency of CH?  

 
This has been discussed numerous times on the meds board I do believe.  A search should yield results.
 
Hang in there!
 
Chris
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