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(Message started by: head_banger on Nov 10^th, 2003, 1:30pm)

Title: newly diagnosed and scared
Post by head_banger on Nov 10^th, 2003, 1:30pm

Hello all, I can't begin to tell you what a relife it is to know that I am not crazy and I am not alone. I have been suffering from these dibilitating headaches since I was 15 and only know at 23 has a doc. finally told me what I had. I am currently in the air force and was an air traffic controller until I was diagnosed. Now the air force has disqualified me from my job and may be medically discharging me. Now so many question have arised. Mainly what the hell am I gonna do with my life now. For the past four years I have been gearing my life twoards becoming an FAA air traffic controller and now I am screwed. The doc has me on verapamill but I has yet to help. Al it seems to do is give me the worst constipation. I go back to the nuerologist tommrow and he wants to put me on lithium. I was wondering if any has taken it before and can tell me about it. I am afraid to get on it because I dont think many people will want to hire me if I am taking it. I am thinking about trying to become a police officer but I think that medicine would disqualify me. From what I understand Lithium is primarily used for thoses who suffer from manic deppression or who are bi-polar. I have tried Imitrex, and DHE with little success. Right now I alternate between percocet and demerol shots both of which I hate. Who the hell wants to spend there life like a zombie, plus the narcotics don't really get rid of the pain they just make it a little easier to deal with. Any way I just wanted to log on and get in touch with some folks who totally understand why I am up at 2 am beating my head off the headboard while the rest of the world sleeps. I am blessed though that my headaches are ussually only active in the spring and fall, though i do get spordic ones throughout the year. My heart goes out to those of you suffer from the chronic form of this illness. I was also curious if I was the only person who wanted to punch everyone who told me oh just take some tylenol, I get headaches all the time and I deal with it. this is what one of my first supervisors told me when I asked him if I could go home. I whish to god that some tylenol was all I needed. Sorry to have rambeled on so long long but this is the first time I can talk about these headaches and people will accutally will undertand. I am a pretty big guy I work out five times a week but when I am at the hieght of one of my outbreaks the pain reduces me to tears. I don't know how many times I have pleaded with my wife to just shoot me or hit me in the head with a bat beacuse I could not stand the pain any longer. That horrible twinge you get at night or early in the morning that tells you that it is coming back. I start to get a bulge on the bck of my neck, my eyes water, my nose runs and then it hits me like a F@%$ing frieht train. any way I just wanted to intoduce my self and see If anybody on here was an air traffic controller or police officer and could offer me some advice. My name is Matt Anderson and I currently live in wichita falls texas. I would also appriciate any info on who you all deal with your pain. I have some tricks and would be happy to share. Well I guess thats all. thank you for providing a place for us (clusterheds) to interact. My wife is very sympathetic but sometimes I need to talk to someone who truly understands why a grown man would rome the house at 2 or 3 am banging his head on the wall screaming and crying. thank you all for your time an I look forward to talking with all of you.

Title: Re: newly diagnosed and scared
Post by Tiannia on Nov 10^th, 2003, 1:38pm

Glad you are here. Well not that way, sorry that you are here, but I am glad that you found us. :-[

I can't help you with the Air traffic controler or Police, but as far as Lithium goes, it will not automatically get you disqualified from any job. Lithium used to only be use for those people who where being treated for a personallity disorder or schizophrenia. Now it is used on a wider base for many medical issues that can be treated through regulating the brain functions. Some people have side effects from Lithium and have to take another med to counter act those side effects.

Again Welcome.
Tiannia

Title: Re: newly diagnosed and scared
Post by forgetfulnot on Nov 10^th, 2003, 1:45pm

Hello Head_, your doc may be on the right track, several peeps on this board have had some good results with the verap/lithium combo. verap @ 480 mg, lithium @ 6-900 mg. Imetrex is normally not usefull unless it is injected. Many have good results with O2 as well, check the oxygen info button at the left. Using lithum at this level should not give them or anyone else a reason to not hire you. I'v taken it for about 15 years and I am a privot pilot.

Good luck, this deal ain't much fun but we keep fighting.

Lee

Title: Re: newly diagnosed and scared
Post by Prense on Nov 10^th, 2003, 2:30pm

on 11/10/03 at 13:30:40, head_banger wrote:

I am currently in the air force

Me too...check your messages.

Title: Re: newly diagnosed and scared
Post by Roxy on Nov 10^th, 2003, 2:43pm

Hi Matt, and welcome. I'm sure you are going to the doctor there on base, at least I hope so. Stay away from the neuros in Wichita Falls. I live on a ranch right outside of WF, and I've already been through all the neuros in town.

I won't be home till around the first of December (I'm in Virginia Beach right now), but if you would like....you and your wife can get together with me and Greg.....it's awfully nice to meet another clusterhead and talk about this nightmare. I'm chronic, and don't know if I can help you any, but it's nice to have others around that understand.

Hang in there,
Tracey

Title: Re: newly diagnosed and scared
Post by TomM on Nov 10^th, 2003, 2:55pm

HB--
E-mail me about going through the military medical board process. I was medically reitred in 1987 and have first hand knowledge.
Verap stuffed me like a pregnant pig! I can relate. You can reach me @ tgmeyer@verizon.net
Tom

Title: Re: newly diagnosed and scared
Post by Callico_Kid on Nov 11^th, 2003, 12:16am

Hi! Glad you found us. Don't feel bad about the post. It helps us get to know you a little bit and know where you are coming from. If the Dr. wants to put you on lithium take it! I was on Verap for a while w/o any constipation probs, but it didn't handle the HA's by itself. Since I got on lithium too it has cut them WAY back. I still get heavy shadows that get up to a K4-5 several times a day with an occasional burnthrough, but nothing like the 4-6 HA's in the K7-9 range. The lithium has not affected me in any negative way at all, and should have no bearing on a job.

Go to the OUCH site, join, and then find Simon's letter and print it out for you friends and coworkers. It helps explain what it is that you have better than you can. When they read it from someone else they believe it and don't think it is just you complaining again and trying to get out of work.

There is a lot of good information available here and on the OUCH site that would be good for you to print out and take with you to the Dr the next time you see him, specially if he is not familiar with CH.

Wishing you PFDAN's.

Jerry

Title: Re: newly diagnosed and scared
Post by TxBasslady on Nov 11^th, 2003, 1:00am

:)
Hi Matt,
Welcome to the board. You will find a wealth of information here.
Seems a shame to have to give up on your career. Hopefully you will email Prense and get some good info from him about your Military career. Don't give up!!

I, also am from Texas (Houston area). I am retired from the Sheriff's Dept., but did not have CH before I retired. So, I can't help you with advice on joining a P.D.

I certainly hope you can find the right medications to help put the beast at bay. Please keep posting, and let us know how you are doing. There is also a section for supporters, in case your wife might like to come here and post. She would probably enjoy reading all the posts and seeing how other supporters handle all of this.

Sending you lotz of pf vibes........hang in there. 8)

Jean

Title: Re: newly diagnosed and scared
Post by Bob_Johnson on Nov 11^th, 2003, 7:47am

Facing two major problems at one time is so hard: the cluster Dx and having to change your plans re. career. Don't, please, try and do both at the same time.

From what you have written, it sounds like you have a doc with some knowledge of clusters. Be as patient as you can in working through meds changes until you find a combination which works for you. Many of us have had to go this rough path--try and fail, try something new, and so on. But the evidence is that you have an excellent chance of getting relief when the right meds combo is found.

Knowledge is your best protection against despair. I'd strongly suggest you get the first book (below) so that you can see your options and have a tool with which to work with your doc.

Stay in touch here because it will be a solid base of support in the coming months.
------
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: newly diagnosed and scared
Post by ClusterChuck on Nov 11^th, 2003, 7:58am

I wonder if it would help to send a PM to DJ? He fought it, and got to stay in the military. If you really want to stay in, maybe he could give you a way to approach it.

Just my [smiley=twocents.gif]

Chuck

Title: Re: newly diagnosed and scared
Post by Edna on Nov 11^th, 2003, 9:22am

Hello headbanging Matt. I'm sorry you have to know us, but certainly glad you've found us.

Can't offer much advice to you concerning either the military, air traffic controller, or the meds. BUT.......

stick around here and read all you can. Lots of great info provided, and lots of great ppl here that would go to extreme lengths to help out a fellow cluster bud.

Wishing you luck and pain free times.

Glad to have you aboard,
EDNA

Title: Re: newly diagnosed and scared
Post by BarbaraD on Nov 11^th, 2003, 9:43am

Matt,
There was a doctor, Darren Camp, who was in the Dallas -FT Worth area. he's a neuro and has CH. He moved up there about 2 or 3 years ago. I assume he's still there. Haven't checked lately. He's good with CH cause HE has them. He was in practice with my neuro for a while. You might try him.

You haven't said if you've tried WATER. Lots and lots of WATER. Go to the left and see how much and when to drink it. Dr. Jerry came up with this in 1998 and it works for a lot of people. Hydration or something.

I agree, talk to DJ and see what he did to stay in the military. You might not be able to ATC, but .......

Here's hoping you'll be PF soon.

And welcome to our little village of Clusterville. Sorry you had to find us, but stick around. We're a good bunch of people (most of the time).

Hugs BD

Title: Re: newly diagnosed and scared
Post by drnoe on Nov 11^th, 2003, 10:23am

Hi and welcome, Matt
Glad you found cluster haven. sorry you need to be here.
Seems like you were completing your duties while you had the CH's before you were diagnosed so why shouldn't you be able to after?
I wonder if there are precedents for CH sufferers over Disability Insurance.
Dan

Title: Re: newly diagnosed and scared
Post by DJ on Nov 11^th, 2003, 11:44am

Hey Matt,

I'm active duty AF and have been "boarded" twice. Once for cluster headaches and once for another condition. I've been "returned to duty" both times.

Send me a PM or an email if you'd like to talk about it!

DJ

Title: Re: newly diagnosed and scared
Post by hdbngr on Nov 11^th, 2003, 11:49am

Hi and welcome Matt -

If you have to have clusters, this is the place to be.
I'm all for educating those around us about clusters -except where jobs and career are concerned. They don't understand why you can't take a couple of Tylenol and keep going, and they don't WANT to. Telling co-workers you have CH may mean you are judged by the malady, rather than your ability to do the job.

There are ways to live with CH without sacrificing your career, too. It boils down to - Don't tell em. You did the job well before, so attaching a label to something you have lived with since you were 15 doesn't suddenly make you ill-suited for the Air Force. I wouldn't disclose the Lithium, other meds, or medical history unless you are pressed to. Don't make the CH a condition of hire, let them judge you for you.

Can you do a good job? Yes. Are you trained for the job? Yes. Do you occasionally get sick and have to leave work, just like everyone else? Yes. Just like everyone else.

Be judged for who you are and how you do it, rather than what you suffer from.

Title: Re: newly diagnosed and scared
Post by Prense on Nov 11^th, 2003, 11:56am

I am in the process of getting boarded... We might need to consult, DJ. ;;D

Title: Re: newly diagnosed and scared
Post by nancyc on Nov 11^th, 2003, 12:16pm

Welcome Matt, as i read your post, i kept going..Yep, Yep, I can relate to that....I am a nurse...and on some pretty heavy duty medications...it has not stopped me from being a nurse...You are in my prayers..now, get in touch with DJ...if anyone can give you sound advise, it is DJ!...he's the man! Good luck and please keep us posted... :)nancyc

Title: Re: newly diagnosed and scared
Post by Just Deb on Nov 11^th, 2003, 1:09pm

Just wanted to say "welcome".
Glad to have you here.
Little Deb

PS
email anytime you want.

Title: Re: newly diagnosed and scared
Post by jep22 on Nov 11^th, 2003, 9:52pm

Hi Matt, I haven't seen any mention of Cafergot which I use when I feel one coming on. It takes about 15 to 30 minutes to take effect so if there is any delay, I will suffer for awhile, but it has never let me down. Usually its the headaches that awaken me that are too developed for cafergot to nip in the bud. These are the times I have to endure a period of pain before cafergot brings relief.
I value cafergot so much for helping me that I use only half doses and I am hoarding a supply because I heard the manufacturer will stop making it. The only problem is that the form I take is a suppository which is a little messy, but hey, when it comes to cluster pain any port in the storm.
I was on verapamil and it worked for awhile but then lost its effectiveness. Goodluck