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NadmanET
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    NadmanET
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You all know...
« on: Mar 3rd, 2005, 4:18am »
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You all know. That's all I could think about all day. I was at work today when the beast hit me. In a desperate act to take my mind off the pain and think of something else (like that ever works!) I decided to surf the web. My homepage is google, so while thinking of something to type in that I wanted to learn about, I said hey, why not cluster headaches. This site was one of the first listed so I clicked on it. I could read for about 3 more minutes, enough to read Loretta's post on the front page. Then it was over, and the next two hours were, well, you know. Thank Christ! You know!! I am so glad that I found you!
 
Anyways, let me tell you about myself. My name is Dan Enright. I was diagnosed with episodic cluster headaches about 3-4 years ago. (Although I have been suffering for just over 5 years I think, my dates are kinda fuzzy.) I married my wife Amanda on 21 June 03. She has always supported me and my battles with the beast, even when I scream and swear at her to leave me alone, she is the first person to give me a hug and kiss my head when it is gone. I am 23 years old and am currently serving in the US Air Force. I have been stationed in New Jersey at McGuire AFB since the beginning of 2000 but recently got reassigned to Osan AB in South Korea. In the Air Force this is known as an “Unaccompanied Tour” meaning that Amanda is still in NJ Embarassed. After my one year tour is up here, I will be returning to McGuire.  
 
For about the past year and a half I have been pain free taking Verapamil. It worked great for me for a long time. I was in cycle when I started taking it and the day I started, the cycle ended. It wasn’t until I went to ALS (a class that gets you ready to be a supervisor) that I ran out of refills and because of time constraints of the class could not see the doctor to renew my prescription. So, I stopped taking it altogether, and was just gonna go get more after the class ended (in about 5 weeks). Well, a week after I stopped, they were back. BAD! They next 2 weeks were filled with probably some of the worst headaches that I have had. Almost every one during that period reached a 10. Then, my wife, god bless her, called the doctors for me and got them to give me enough pills to get me though the class. I started taking them again and about 2 days later I was not getting them anymore. That was until now. The day I stepped off the plane here in Korea, the beast stepped off with me. (I got here Feb 10th.) This is really just fantastic because I’m meeting all these new people and been assigned to a really high paced shop where I kinda need to prove myself, and oh, WAIT, I need to take a time out so I go scoop my left eye out with a spoon. “Why do you have to do that?” “Because the Beast lives there!” Yeah, I’m sure they’re all really looking forward to relying on the “crazy guy” to turn in the MSEP he did on Airman Snuffy on time. The past 2 days I’ve had to leave work within an hour of arriving to go back to my room and have an episode. And I can tell that they are not thrilled. The first one that I had while I was at work here was great because it came on in the middle of a staff meeting (where we brief the commander on what the status of the unit is) and I had to get up and leave. Being in the military really compounds this whole problem because a lot of people have the mindset that you are either at work or in the hospital. I went to the ER when I got the one in the staff meeting, and they hooked me up to an IV of saline. After about 2 hours and 2 bags of saline later it went away on its own but because they were giving me fluid the doctor said, you must have just been dehydrated. Holding in my rage was almost impossible.
 
But here, you all know what I’m talking about. You all understand. After I went back to work this morning I started looking at the site more in depth. I broke down in tears sobbing several times while I read your posts and articles about what I have been unable to put into words. I was really convinced that I was the only person ever to have SUICIDAL THOUGHTS over a HEADACHE!!! Knowing that you all can relate and understand brings me peace of mind that I’ve never had before. Many of you have had this ailment longer than I and that also gives me strength and optimism that I can endure this. THANK YOU THANK YOU THANK YOU!!!!  
 
I’m gonna cut this short, it’s really too long already, sorry. My email address is dan.enright@comcast.net and my screen name on AIM is NadmanET. Please feel free to contact me for anything, even just to chat about nothing. (Remember that I am 14 hours ahead of Eastern time 15 Central etc.)
 
You know. We know…
 
Dan Enright
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BobG
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Re: You all know...
« Reply #1 on: Mar 3rd, 2005, 4:55am »
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Good morning Dan. Or is it Good afternoon. I'm in Las Vegas and it's 2am here so it must be about 4 pm in Korea.
 
Welcome to the message board. Sorry you had a reason to come to this place.
 
There is lots of information here. Probably more information and experience with clusters than you will find anywhere on earth. Please take the time to look under all the buttons on the left side of your screen.
 
Please keep us informed on how you are doing.
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Langa
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Re: You all know...
« Reply #2 on: Mar 3rd, 2005, 8:47am »
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Great post Dan and welcome to the family.
 
We have clusterheads here who are in the military or have been and can relate more to your situation in the military, but CH pain sucks whoever you are, wherever you are.  I’m glad you found us.  We all can relate to all your feelings of frustrations with doctors and the loneliness we all felt prior to finding this site.  
 
Read all you can on this site as Bob G. suggested, there is a world of information.  Have you seen a doctor there yet for your ha’s?  You mentioned the ER and the saline IV’s… but have you seen a doctor yet for meds.  I don’t even know what they would prescribe you there.  Oxygen, that helps many of us here.  Can you get that there?  It must be so tough being away from your wife away from your country with these awful things.
 
Well, hang in there and know you’re not alone.  
 
Langa
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Bob_Johnson
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Re: You all know...
« Reply #3 on: Mar 3rd, 2005, 2:23pm »
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Since you may need some help in getting good treatment from your local meds there, suggest you print out this long document and share with a doc who may not know what to give you. Author is one of the best headache docs in the states.
--
Here is a link to read and print and take to your doctor.  It describes preventative, transitional, abortive and surgical treatments for CH.  (2002)
   
http://www.brightok.net/~mnjday/chtherapy.pdf  
 
In this handout is mention of a drug, olanzapine, which I suspect you can get there. A pill; works in 20-min to abort my attacks. Good to carry with you as you are at work.
When you get back, we can introduce you to more good reading.
 
(Old memories! I was CO of the medical squadron for 3-yrs back when McGuire was the 1611th, 1960-63.)
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Bob Johnson
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Re: You all know...
« Reply #4 on: Mar 3rd, 2005, 7:59pm »
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Welcome to the board Dan!  So sorry to hear you're here due to our accursed shared beast.  I understand what you're saying about the military mindset as I'm a former medic in the USAF.
 
I'm fairly certain we all have had many strange thoughts while in the midst of an attack ... all we can do is stay strong and take comfort in the knowledge (in a sort of a weird way I guess) that there are many others out that know exactly what you're going through.  Much strength and well being to you bro! thumbsup
 
Wishing you many PFDANs!!
 
Tony
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Kris_in_SJ
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Re: You all know...
« Reply #5 on: Mar 3rd, 2005, 8:55pm »
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Welcome Dan,
 
So sorry you have to be here ... but really glad you found us.  I'm emailing you a couple of articles (I think one of them is from the link above).  I highly encourage you to print them out for the docs who are treating you.
 
One of my greatest frustrations about this syndrome is that the sufferers have to often educate their physicians.  Don't let being in the military stop you from doing that!
 
It's hard enough being far away from those you love.  I can't imagine battling with the beast at the same time.
 
PF Wishes, my friend,
 
Kris
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Re: You all know...
« Reply #6 on: Mar 3rd, 2005, 9:56pm »
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Welcome Dan
 
  . . . . and ditto to the above.
 
   Do read the 02 info and try as soon as possible . . . is a miracle for many of us
 
   You're not alone.
 
     Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
NadmanET
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    NadmanET
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Re: You all know...
« Reply #7 on: Mar 3rd, 2005, 10:42pm »
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Thanks for the kind words, all. I have read most of the info to the right and am assembling a "package" to take to my doctor. Like I said, I just got here, so this (15 Mar) will be my first time meeting him/her? I am trying to get caught up on my condition and what meds people have found effective. That way I'll know what I'm talking about, at least a little anyways. Right now it seems that Imitrex injectors have the lead followed my O2 at a close second. I'm going to try to push to get both. So far today I've been PF (I'm on lunch) so thats great!! I don't know why I never thought to search the internet for information on cluster headaches until now.  I mean, I am a network tech, the internet is what I DO!! I guess it was because I really didn't think that what I had was cluster headaches. The doctor diagnosed me with them but I heard "headache" and immediatley dismissed it. I thought, great, another great diagnosis by another great AF doctor. No offense Tony! Anyways, I though he was gonna tell me i had Tazmanian Mind Melt or something, not "cluster headaches"  So falling victim to my own ignorance I dismissed it and continued telling people (and beleiving) that I had migraines. Well, thankfully, the supposed air force "doctor" was really a pretty good Doctor and knew what the hell he was talking about and gave me a prescription to verapamil. I'm thinking about trying to have that switch to the cortico-steriod ive heard about (can't remember the name, I have it somewhere). Do any of you recommend that? I mean, the Verapamil worked great until I got here. Also, are you all taking preventive drugs like verapamil all the time or just during your cycles?
 
Thanks for being here.
Wishing you PFDAN,
Dan
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jokrs2
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Re: You all know...
« Reply #8 on: Mar 4th, 2005, 2:43am »
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First of all I'm sorry about your situation, but glad you found the site. Secondly I salute you and thank you for continuing to serve your country while you suffer from the beast. I know, "they" just expect results. Sounds like you've got great support from your wife and in that too we are bro's. Wishing you many PFD's and when the pain is not so severe that you can look at the screen, many giggles can be had in the joke area of the message board laugh. Pretty darn good natural medicine if you have time to squeeze it in. Partners in pain, but makin it. Joe
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Re: You all know...
« Reply #9 on: Mar 5th, 2005, 1:54am »
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on Mar 3rd, 2005, 10:42pm, NadmanET wrote:
The doctor diagnosed me with them but I heard "headache" and immediatley dismissed it. I thought, great, another great diagnosis by another great AF doctor. No offense Tony!  
Dan

 
No offense taken Dan . ..Grin Its been a while since I was active duty ....  I tend to agree ... when I was active Motrin and Sudafed were the wonder drugs of choice by the AF docs .... duh
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NadmanET
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    NadmanET
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Re: You all know...
« Reply #10 on: Mar 5th, 2005, 8:40am »
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on Mar 5th, 2005, 1:54am, TonyG1 wrote:
when I was active Motrin and Sudafed were the wonder drugs of choice by the AF docs .... duh

 
ROFL oh, so true, I don't know how many times I've gotten the, "MOTRIN 600mg now go back to work."
 
I would like to add that I have been PF for 2 days!! Today I felt some shadows coming on for maybe 2 minutes and as I was getting myself mentally prepared for the show, out of nowhere they went away! Hopefully this will continue as tomarrow I'm venturing up to Seoul to pick up some inspectors from the airport. Should give me some good face time with some important people, but that could easily become bad as well. I guess I'll just keep my fingers crossed!!
 
Wishing you PFDAN,
Dan
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Re: You all know...
« Reply #11 on: Mar 5th, 2005, 8:45am »
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Dan,
the cortocosteriod (sp?) you mentioned is probably prednisone.
The purpose of the pred is to get some relief while the verapamil is building in your system. This Code:
IS NOT
a long term RX. Its usually prescribed at 60 mg per day tapering down to zero over a week or ten days. The taper is very important. It should be taken in combination with a prevent like verapamil.
Verapamil is a common preventative taken while in cycle to minimize the severity of the cycle. Its not uncommon for Chers to take up to 960 mg per day although the most common seems to be around 480 mg per day. You haven't mentioned how much you are taking but since you have unfortunately been taking it while out of cycle it may need to be increased. Try to taper off it when yu think your cycle has ended.  
imitrex works great as an abortive but for me would be  a last resort. 02 works great for most but needs to be applied correctly. Insist on the RX for it! Read the tip on the side bar.
Kudzu is getting some pretty good reviews lately. Read up on it in the meds and treatments section.
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Re: You all know...
« Reply #12 on: Mar 6th, 2005, 10:22am »
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on Mar 5th, 2005, 8:40am, NadmanET wrote:

 
ROFL oh, so true, I don't know how many times I've gotten the, "MOTRIN 600mg now go back to work."
 
I would like to add that I have been PF for 2 days!!  
Dan

 
  Grin  I see not much has changed since I left active duty (late '92) and subsequently the reserves (early '99).  Being an "insider" so to speak on the medical / dental corp gave me a unique perspective... kinda like the dentists ... lets pull your wisdom teeth whether you need it or not...  Roll Eyes
 
Outstanding that you're having some PF time.  Additionally, glad you're wife is such a good supporter and advocate for you!!  
 
BTW --  Thank you for your service!  Having been there and done that I appreciate what you do!  Unaccompanied tours pretty much suck and having a beast on your back doesn't help!!
 
Wishing you many PFDANs and a speedy / safe return home to the states!
 
Tony (former SSgt USAF)
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Re: You all know...
« Reply #13 on: Mar 9th, 2005, 3:45am »
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Ahnyunghasayo!  Hello and welcome to the website.  I was stationed at Osan from October 1987 to October 1988.  How's Song Tan Si?  God, I miss that place sometimes.  Last time I was there was Team Spirit 1990. I rode the screamer from Kunsan to Osan and then partied my a$s off.  What a place.  Whatever you do, get off base once in a while.  I was a law enforcement specialist with the 51st SPS when I was there.  I learned how to read and write Hangul and learned enough Korean that I never got lost or went hungry.  Worked a 6 and 3 schedule back then.  3 days off were 3 days gone.  I'd get off work and catch the bus to Pyong Tek and a train from there to anywhere I hadn't seen yet.  From the DMZ to Chejudo Island.  That or catch the military bus that goes to Seoul and wander around there.  I found some seriously good deals and some good eats there, especially at this one noodle shop in Itaewon - the shopping district of Seoul.  Of course the exchange rate when I was there was almost 900 won to the dollar.  BTW, ALWAYS dicker with the shop keepers.  They have no respect for you unless you haggle over the price.  Unless things have changed drastically, forget all that crap you heard in your intro briefing about not eating the food from the alley vendors.  I hardly ever ate in the chowhall or in the restaurants on the main drag.  I went down in the alleys and ate the real Korean food.  I also ate from the street vendors carts.  Nothing better than grabbing an order of Yakimandu on the way back to the base.  Beware Soju.  That stuff has a kick!  It has formaldehyde in it.  Oscar is pretty tame.  Loved me some peach oscar.  Don't be buying the dancers any juicies, either.  
 
I can dig what you're saying about military medicine.  Vitamin M (motrin) was their favorite cure-all.  Sounds like not much has changed.  Hopefully the links you have printed out will be useful in getting you proper treatment and also in explaining to your C.O. that you are not malingering.
 
Print this and give it to your boss and co-workers:
 
http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc
 
It may help explain things to them.
 
Again, welcome.  Seeing you say your at Osan really took me down memory lane.  We'll have to compare notes after you get settled in.
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