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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Do your CH's interfere with work?
        
(Message started by: Mike_Easton on May 1st, 2004, 11:27am)
Title: Do your CH's interfere with work?
Post by Mike_Easton on May 1st, 2004, 11:27am
I don't know if this has been posted, but I am new to the board and I dont feel like reading every single thing.

Do your CH's interfere with work or school? What do you do about it?
Title: Re: Do your CH's interfere with work?
Post by Rock_Lobster on May 1st, 2004, 12:37pm
They tend to.  I work from home with somewhat flexible hours.  
The primary effect is that I avoid travel like the plague during an episode.  My peers are pretty good about dealing with that.  

I feel that my overall work quality suffers throughout an episode... more so now that I am on Topamax.  Topa really is 'Lobotomy-in-a-Bottle' for me.  The other Topa effect is the unending siren-calls of my couch & dog... 'Come take a short short nap with us... you will feel much refreshed in just 5 minutes..'... those bastards...

Rock
Title: Re: Do your CH's interfere with work?
Post by miapet on May 1st, 2004, 12:42pm
haahahha, I think we know your couch and dogs *L*
Title: Re: Do your CH's interfere with work?
Post by Karla on May 1st, 2004, 5:04pm
Being chronic for the last 6 years and getting hit 8x a day during working hours I just couldn't concentrate and focus and do my job properly.  This is because I never found a preventative that worked for me.  On top of it I suffered great depression because of the curse.  I applied for SSDI and was awarded disability the first time I applied.  I have been on it for the last 4 years.  I am now tho looking to reenter the workforce since I have found something (duragesic patch) that prevents the ch.  I am just having a very hard time finding work because I haven't worked in 4 years no one wants to hire me on.  I am currently taking college refresher coarses and some new coarses as well.
Title: Re: Do your CH's interfere with work?
Post by Mike_Easton on May 1st, 2004, 6:52pm
Well anyway, I am a freshman in high school approaching week 5, and I fear Monday.

I have missed a lot of school and my mom says I have to go on Monday. I will get two attacks during the school day. My average attack is between 1 hour and 1 1/2 hours with a mild one being 1/2 hour.

The school nurse apparently knows nothing about CH's. I went to school on Friday and an attack was about to come. (I can feel it crawling up the back of my neck for ten minutes) I went to the nurse and she gave me some ice and told me to go to class. I knew that this wasn't  going to work but I went to class anyway. On my first hit I let out a really high pitched scream (embarrassing!!!!!!!!) and my hands shot to my head and I immediately ran to the nurse where I starting doing my normal thing (thrashing rolling on the floor etc.). I begged her to let me go home, but she thought i was faking it. Finally I convinced her to call my mom and she picked me up.

Also, after I have my CHs for about an hour I feel really depressed.

I dont think anyone understands the full extent of how bad these things are. (Except you guys :) )

I really do not want that to happen again and I reeeally dont want to go to school come Monday.

I will prolly be able to get out of it if I really need to but my parents will be mad.

If I miss Monday I could miss the nextday next day etc.

What should I do?
Title: Re: Do your CH's interfere with work?
Post by Mike_Easton on May 1st, 2004, 6:53pm
Rock I have no idea what that last paragraph means and Im not sure I want to..  :P
Title: Re: Do your CH's interfere with work?
Post by gills on May 1st, 2004, 8:06pm
Mike

As you have only just begun this nightmare, it will take your mum some time to understand what you are going through.

Non CH sufferers cannot imagine the pain.

Perhaps you are lucky to be diagnosed with CH so quickly.  It took me 16 years to be correctly diagnosed.

As they are so rare, 1 in 100,000 people I am led to believe, you will probably never meet another person (in person) that also suffers.

Print some stuff off this sight for your mum to read about CH (pain intensity, frequency etc)

If you are diagnosed with CH, it will take some time to find a method of control, but you eventually will.

When in an attack, keep telling yourself it will be gone in an hour and a half.  Keep a watch or clock close by to look at and give yourself something too look forward too.

Gills
Title: Re: Do your CH's interfere with work?
Post by judyw on May 2nd, 2004, 12:33am
Welcome...I'm sure anyone asked would tell you that CH has an effect on all areas of their life...be it school, work, social, or family...You are lucky to have been diagnosed so early, did the MD who diagnosed you not talk with your mother...What meds are you on?  Seems an awful lack of support information for you at the moment...Please talk with your Mom about coming to this site and reading up on the information found here...There is so much to be learned for both the CH sufferer and the support around them...With the proper information, your mother will be able to get you the space you need while at school...Knowledge is power, so do some learning and teaching of what life is like in the CH world...As you spend time here, you might be surprised how close another CHer might be...Please take the time to read all the links to the left have to offer...especially OUCH...Wishing you pfdan...judyw
Title: Re: Do your CH's interfere with work?
Post by Rock_Lobster on May 2nd, 2004, 9:36am

on 05/01/04 at 18:53:35, Mike_Easton wrote:
Rock I have no idea what that last paragraph means and Im not sure I want to..  :P


Topamax stops the episodes dead in their tracks for many of us.  But it has a few nasty side effects.  For me the main ones are:
1 == It drops my IQ by about 25 points.
2 == It makes we want to take naps.  Shitloads of naps.

For you I suggest:
1 == Get on some course of preventatives.
2 == Get Imitrex vials/syringes for quick relief at school.  Do not wait until you have a screamer to shoot up.  At first tingle get the needle in there.

o2 also might work for school, but you would be out of class a bit longer perhaps.  

judyw is right.  Get mom out here.

Good luck,
Rock
Title: Re: Do your CH's interfere with work?
Post by Mike_Easton on May 2nd, 2004, 12:39pm
Nonoono

My mom and dad are very supportive;

My dad wakes up in the middle of the night with me and tries to calm me down and my mom has taken off work to be with me. They understand that its really painful and everything...

They just don't feel it and don't really know the extent of it. I feel really bad for them because they want to help but they cannot.

Let me get the stuff....amitriptyline..2 a day...Hasnt helped yet.I want lithium and powerful stuff and I beg for it during the attacks, but my mom says no and maybe she is right.

I actually dont think I am going to school tomorrow, and if I do, I expect to go home early.

I am becoming more and more nocturnal every day.
Title: Re: Do your CH's interfere with work?
Post by Rock_Lobster on May 2nd, 2004, 12:46pm
Get o2 for home.  No worries of OD'ing on it.  Very nice escape.

Read up on what others are taking.  Lithium, imo, is something to try a little further down the line.  Give Verapamil and perhaps Topamax a shot first.

Print & read this... lots of info about many of the current treatments...
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
Title: Re: Do your CH's interfere with work?
Post by mynm156 on May 2nd, 2004, 1:00pm
Yes They have interupted my schooling and work.  However,  If you have been at your current job for one year you can get your Doctor to sign you up for the Family Medical Leave Act.  (FMLA)  http://www.dol.gov/esa/whd/fmla/
This once filled with your employer will protect you from any disciplinary actions due to attendance.  It gives you 80 days of leave.  All you have to do on a day when you have a problem is call in and state due to your FMLA you need to take the day off or part of the day what ever it takes.  Your employer can not say a thing about it.

I hated to have to do it but as a chronic I have had days where  I was completely unable to perform anything or even function.

Good LUck

MYNM156
Title: Re: Do your CH's interfere with work?
Post by Karla on May 2nd, 2004, 2:24pm
My son who is a Junior has eposodic ch.  He has a hard time dealing with it during school also.  They usually come at the same time every day so I have explained to the school that when he is in cycle he will not be in class during that time if it gets bad and he can't abort it with midrin. I have found around here that neruologists are reluctant to give minor children any preventatives other than antidepressents and midrin to take as an abortive.  Once you turn 18 some doors will open with more options for you to take.  
Title: Re: Do your CH's interfere with work?
Post by Stibs on May 2nd, 2004, 4:59pm
I have always felt that the worst thing besides the pain itself is the lack of understanding by the rest of the world. If you don't have CH you will never understand what it truly is to deal with them. The last 2 weeks I've lost half my hours at work and I'm always in fear of the consequenses. I am fortunate that my boss this time around is somewhat understanding. But it's killing me financially. Several years ago the band I was in fired me and their official reason was "We can't deal with YOUR headaches." I was super pissed, but at the same time I could understand why because I knew if I was in their shoes, I would have been frustrated and skeptical too. (I missed a lot of set-ups & rehearsals.. once had a CH in the middle of a show so I threw my guitar on the floor and walked off the stage in the middle of a song.) I always try to encourage people to read about them and educate themselves about them. Not that it always helps.. but sometimes you never know.

Anyway this Site rules because you know that when the rest of the real world doesnt understand, the people here do. Good luck!
Title: Re: Do your CH's interfere with work?
Post by Ann on May 2nd, 2004, 5:50pm
Hey Mike,

I was going to give you a link to a letter written for colleagues, but for some reason I can't access it.  Anyway, here's the link to OUCH.  http://www.clusterheadaches.org/
Go to the O.U.C.H. tab, pull it down and go to  colleague letter.  Print as many copies as you think you will need.  Make sure to give one to all your teachers, the nurse etc. so that when you get hit, you don't have to explain it over and over again.  Perhaps they could keep a bottle of O2 for you at the infirmary so you can run there to abort when you feel it coming on.
If, for some reason, the people at school don't get it, you may want to get your doctor to write you a letter explaining your condition.  I am a high school teacher.  I keep a bottle of O2 in my office and get my fellow teachers or principal to replace me so I can go and either inhale some O2 or inject imitrex.  They are very accommodating and respectful.
Not going to school is not an option.  You will have to learn to deal with these things and you may as well start now.  Glad to know your parents are 100% behind you.

Good luck and let us know how it goes.
hugs
Ann
Title: Re: Do your CH's interfere with work?
Post by Mike_Easton on May 3rd, 2004, 11:03am
I still dont have anything that aborts it......................and I sure cant sit in class while it happens..
Title: Re: Do your CH's interfere with work?
Post by Karla on May 3rd, 2004, 6:08pm
Are you seeing a neurologist?  If not you need to be seeing one not a reg dr.  Missing a ton of school is not acceptable.  How will you ever graduate?  Your quality of life is at stake here and you deserve to be pain free.  Tell your dr that!  There is imitrix, zomig, axert, maxalt, amerge, frova, migranol, DHE, and midrin.  The neuros around here will only give minors pills of midrin.  It takes 30 -60min to kick in.  Imitrix and zomig come in nasal spray and kick in about 10min.  Imitrix also comes in injection and will kick in in about 5 min.  Then there is oxygen also.  That works in 15-20min.  You could leave a tank in the school nurses office and go down and use it when you need to.  Talk to your dr about these options.  You desearve to not be in pain!  
Title: Re: Do your CH's interfere with work?
Post by Mike_Easton on May 4th, 2004, 10:33am
I am keeping up with my school work, and although I have already missed more than the 9 days allowed, they don't really care because I get A's.

I got imitrex today and I still am waiting for an attack to use it.
Title: Re: Do your CH's interfere with work?
Post by Ann on May 4th, 2004, 10:49am
Mike,

Good luck with the imitrex.  Let us know how it goes.  O2 is a lot less hard on the body and just as effective if taken properly.  Take a look at the button on the left to get the info you need.

Keep us posted
hugs
Ann
Title: Re: Do your CH's interfere with work?
Post by BlueMeanie on May 4th, 2004, 6:34pm
Mike,

Anyone who must work or go to school, or for that matter DO ANYTHING while getting cluster headaches MUST find a preventative/abortive medication in order to function. I suggest you talk to your parents and have them send you to a neurologist. At the very least, get a prescription for Imitrex tablets and/or Amerge tablets. I don't think you will be able to get the injections, especially doing it at school. The tablets work slower, but if you take them immediately upon onset of a CH you have a good chance of surviving the Beast's termoil.

Hope you find some relief. Sending PF vibes your way.
Title: Re: Do your CH's interfere with work?
Post by 5-string on May 4th, 2004, 7:03pm

on 05/04/04 at 18:34:00, BlueMeanie wrote:
Mike,

Anyone who must work or go to school, or for that matter DO ANYTHING while getting cluster headaches MUST find a preventative medication in order to function.  .


Amen to that!
Last summer was my worst to date. Did not have meds yet,was not properly diagnosed yet,did not find these FINE people here yet. I was out of work for 6 weeks. Never again. Verapamil works for me, Imetrex works, o2 works. I will never go through this again without those three things by my side.(as long as they work)
I'm sorry you're going through this bud. Hang tough..
...Mark..
Title: Re: Do your CH's interfere with work?
Post by HypnoticFreddy on May 4th, 2004, 8:50pm
One thing that strikes me as interesting in this post is how young Mike is.

I was 23 at my onset. Too bad kid. Let's hope it doesnt interfere with the most fun and free time you'll ever have (high school and what sounds like college maybe?)

Mike....you definitely need to follow a lot of the good advice above. You have said all the abortives don't work.
I know it has been mentioned, but have you tried oxygen? And when I mean try oxygen, I mean try it with the right equipment. You need a non-rebreathing mask, and you need a high flow rate regulator for the oxygen tanks. Sooooo many people are helped by this.  If you say you have tried all abortives and HAVEN'T tried oxygen than you HAVEN'T tried all the abortives.

Yes, your Mom should check out this website. It sounds like she is not being as proactive in your treatment. Oxygen can be prescibed like medicine at a pharmacy. They get in contact with a medical device company, and THEY will provide you with equipment. There are other routes of getting oxygen that many here at this website could tell you about.  As I recall....it was a hell of lot CHEAPER than Imitrex injections. JUST MAKE SURE YOU GET THE CORRECT OXYGEN EQUIPMENT. As my new neuro said, oxygen is only effective as an abortive (or at least to try) with the proper equipment. BE PROACTIVE.

-Scott
Title: Re: Do your CH's interfere with work?
Post by whitewatertazz on May 5th, 2004, 9:58am
Man this hits home...
I have been recently diagnosed with CH. Last year I was off most of the year. Thank god for CH(strange), they did not know what I was going through so they did a MRI. Found a brain tumor and I had it removed. If I did not have it removed who knows what would have happened...then I was still off for still having head aches...yeah right more like head pain and was off for another 2 months...until earlier this year they were thinking regrowth.

I was just diagnosed and have been in an episode for month now and missed 2 weeks of work. Pain every 3 hours about...24 hours day... yeah 8 attacks a day.

O2, Imitrex and upped my Verapamil...so far so good. ;;D
Title: Re: Do your CH's interfere with work?
Post by Mike_Easton on May 10th, 2004, 11:21am
Here is what I've tried.

The first thing they gave me was Imitrex, the nasal spray, and that was a total disaster. About 15-20 minutes later it went away, then came back in 1/2 an hour, more severe; this happened many many times.

Then I went on Prendisone with Verapamil, and a Zomig Nasal Spray, and some oxygen got delivered.

They had to start the medication off slowly since I am just a kid.

The Prendisone affects my brain, I get super hyper and I cannot contain myself. I also think I can do things which I definately can't do (in terms of physical activity-such as dunking on a basketball hoop)(I'm a shade over 5 foot 3)

I had to start off the Verapamil very slowly because of my size, and now I am up to the adult dose, and I am afraid it is making me sick. I am constantly Nauseous and dizzy, and I vomit nearly 4 times a day. :'(
:P

The Zomig doesn't work much better either, it does the same thing as the imitrex, but its not as bad.

The oxygen isn't so great either. After 15 minutes it goes away, and then when I take it off, it comes back. If I have it on for over 30 minutes, it comes back as well.


I also take Benadryl to counter the effects of the Prendisone. Melatonin to help me sleep at night (yeah right) and a homeopathic thingy (whatever that means) to take under my tongue.

So what has happened? BASICALLY NOTHING

If anything it has gotten worse!

I have never been responsive to medicine, and this just reiterates the fact!

I have now 5-7 attacks a day lasting 1 hour to 1 1/2 hours, and when I use the Zomig 25 minutes.

THIS SUCKS!
Title: Re: Do your CH's interfere with work?
Post by miapet on May 10th, 2004, 1:06pm
Mike,
Your school should be able to offer home schooling during your cycle.  If the cycles are too long, and their general fund doesn't cover that much time then, you should qualify for Special Education services, under OHI (other health impairment).  What does this mean?  It means, during cycle, you should be able to have home schooling . . .voila, funding from a different source that allows the school to allow you to keep up with your work, and your absences NOT count against you.  
Federal Law (I.D.E.A.) is for youth, from age 3 up to their 22nd birthday.  Younger than 3, and 22 years 1 day are covered by ADA (meaning, you are protected in college too!).   Take in information/reports from your doc/neuro, and have the school get their diagnostician on this . . .your parents can request/refer you for services.
This does  NOT mean you have to be in resource classes, or that anyone needs to know you are under the special ed umbrella (special ed covers the range of gifted and talented all the way to the most severe disabilities). This just means there is additional funding for services, such as a home teacher.
I hope you find something that works for you . . (o2 is great) .. .and that this information helps take some stress off your school situation.  

*positive light and energy*
miapet
Title: Re: Do your CH's interfere with work?
Post by Tiannia on May 10th, 2004, 6:20pm
Mike try and get your folks to come on the board. There are sections specificallt for supporters and there are sections for kids with CH and a lot of mothers in there that can help your folks to understand like you say.

Also, there are letters that you can give to your principle and school nurse. And if they will not accept them then take them to the school board.  I know it is a bitch but trust me, someone will listen and they will attempt to learn so if you have all the literature ther for them, then they are getting the right information and are not lumping you into a group that you do not belong.

ok now back to the point or the thread. Yes I get CH attacks at work.  luckly them people I work with understand and leave me alone. I hate that people see me like that, but there is little to nothgin I can do about it as I have to earn money for my family.  So as I feel an attack coming on then I know what I can and can not do.  And once it is over, I bust my ass to make sure that I make up for hte time that I lost.  No one can say that I dont put in my time here.  

In fact I have to go now. Sorry I wish there was more advise I can give you.  Talk to some people here about the O2. Maybe you where not using it at a high enough setting or with the wrong type of mask as that is a pretty common problem.  

PF Wishes to you Mark
-Tia
Title: Re: Do your CH's interfere with work?
Post by Mike_Easton on May 11th, 2004, 9:52am
I am getting a tutor to come to my house..and for the o2 I had it on 7 liters per hour, with a loosely fitting mask.
Title: Re: Do your CH's interfere with work?
Post by Tiannia on May 11th, 2004, 12:32pm

on 05/11/04 at 09:52:02, Mike_Easton wrote:
I am getting a tutor to come to my house..and for the o2 I had it on 7 liters per hour, with a loosely fitting mask.


That might be the issue.  I believe most epople find relief with 12-15 lph (you need to check with others who get relief from O2, I have not been abole to get any yet.

And they also use a non-rebreather mask. The one with the bag on the bottom of it.  It should not be loose as you are losing O2 rather then breathing it.
Title: Re: Do your CH's interfere with work?
Post by Mike_Easton on May 11th, 2004, 4:17pm
Ok thanks ill keep you posted. but right now I feel one coming, so Ill try it. AGHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!
Title: Re: Do your CH's interfere with work?
Post by echo on May 11th, 2004, 4:26pm
Yes,

I have one knocking at the door as I type.  Some really good jabs are starting to happen more frequently.  Hopefully he'll get bored and leave.
Title: Re: Do your CH's interfere with work?
Post by Wendy1 on May 17th, 2004, 10:47pm
Ummm... coming into work with Demoral or in some cases Dilaudid in my system from the 1 a.m. ER visit is quite interesting.  

lol


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