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GaWd
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CH and work
« on: Oct 2nd, 2007, 12:11pm » |
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Hi everybody,
After 5 or 6 years without any CH attacks, I'm having trouble again. I have 3 shadows all day long. Generally 1 after waking(6-9AM), one around lunchtime(11-1PM), and one before bed(8-11PM). I am having full blown attacks every 2 days or so.
My question for everybody is how do you deal with these at work? I just had a full-blown level 9 attack at work that lasted almost 90 minutes. I don't know that I know how to deal with this. In fact, I'm tempted to just give up and go home 
Last time I had CH issues, I was unemployed. Now I'm fully employed in a high-availability position in a Technical Support environment. I have a daughter and one on the way. I'm not sure how to get through this.
What if it gets worse? What if it doesn't go away like before? What if I lose my job or end up on short-term disability over this? Hell, I'm barely keeping my head above water as it is, and this isn't helping a bit.
Aw hell.
Sam
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Guiseppi
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Re: CH and work
« Reply #1 on: Oct 2nd, 2007, 1:05pm » |
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Do you have medical coverage? Do you have a treatment plan? Preventatives and abortives?
I'm episodic, usually 2X a year, typically spring and fall, 8-12 weeks worth. As soon as they're back I do my 2 week pred taper whilst I ramp up on lithium. I'm in law enforcement so lithium is about the only acceptable prevent for me. At 1200 mg a day it blocks most of my attacks without leaving me zombyish. The county docs have signed off on it and they let me carry a gun!
For the break thrus I have oxygen and imitrex injectables.
If I religously avoid all my trigers while on cycle, and am strict with my medication cycle, I end up losing only a few days of work per cycle.
Wishing you a short cycle, Guiseppi
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DennisM1045
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Re: CH and work
« Reply #2 on: Oct 2nd, 2007, 1:09pm » |
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Sounds like you got caught without a plan in order. I'm sorry to hear it.
I bring e-tanks to work. HR has an isolated office I can use to deal with a hit. It keeps me from having to answer a lot of questions when I'm no shape to answer them  I'm typically back at my desk in 25 minutes. They've been really great here.
Give your boss a copy of this letter: http://www.ouch-us.org/chgeneral/colleagueletter.htm. I'll help him understand what is going on.
Then get yourself to a Dr and get your preventatives in order. Oxygen, Imitrex and energy drinks work for most.
Good luck...
-Dennis-
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GaWd
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Re: CH and work
« Reply #3 on: Oct 2nd, 2007, 1:33pm » |
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I used to just use Motrin. Lots of Motrin. Oh, and coffee. Lots and lots of coffee.
This time, I saw my doc and she prescribed MaxAlt, a pred countback and snuck in some blood pressure meds "just in case" it was HBP-related.
The Maxalt usually works to reduce the shadows within 10-30 minutes. But if I'm due for an attack, it doesn't work. I have to go the whole 60-90 minutes of an attack.
I see a neuro next monday. I guess I was just feeling sorry for myself a bit.
Sam
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Guiseppi
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Re: CH and work
« Reply #4 on: Oct 2nd, 2007, 1:44pm » |
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No need to apologize, you're getting your ass kicked and so far they're not giving you much to fight back with. Was the BP med Verapamil? At higher doses it works for many as a prevent.
Get the oxygen prescribed and see if he'll give you some imitrex injectables. I can sneak into the bathroom and pop one of those I'm pain free in 3-5 minutes.
Get away from the motrin, that stuff beats up your organs in the long run. Have you tried energy drinks yet? Many can abort by chugging one of those at the onset, look for ones containing caffeine and taurine, rock star, monster etc.
Good luck, keep asking questions and read like crazy. As you've already probably realized docs don't know much about these things, it's up to you.
Guiseppi
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GaWd
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Re: CH and work
« Reply #5 on: Oct 2nd, 2007, 9:43pm » |
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Thanks Guiseppi.
This has been the worst episode ever. It has lasted pretty much all day. I maxed out on my Maxalt about 15 minutes ago. I left work early and came home to sleep a bit. THen this latest episode hit me at around 6PM. I'm dying over here.
Holy shit. I'm in so much pain. I'm tempted to take some Tylenol III that my doctor prescribed to see if that dulls the pain any.
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Jobette
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Re: CH and work
« Reply #6 on: Oct 2nd, 2007, 10:01pm » |
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God Bless you for having to deal with this MONSTER while you are pregnant. But at this point I don't think the tylenol 3 is going to help you. You need to really try a get you some O2, I know you can't tonight but tomorrow call the doctor. For now try an ice pack and a Red Bull - energy drink and the pressure point between you pointing finger and thumb. I don't know what else you can do at this hour, you have my prayers! Jobette 
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mollybo
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Re: CH and work
« Reply #7 on: Oct 2nd, 2007, 10:14pm » |
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I sympathize with always having to be "on". I work on the phones, and my desk is on the way to the snack cabinet. If I'm hit, I am on O2 in public until the headache is aborted, and then I get back on the phones. I've been here over a year, so it's being handlded as FMLA (seriously; starting when I get my paperwork in this week I track my O2 time in minutes and subtract it from my PTO time).
Be a kick-ass employee when you're not getting hit is my best advice. You need to figure out a preventative and an abortive that work for you as well.
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GaWd
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Re: CH and work
« Reply #8 on: Oct 2nd, 2007, 10:38pm » |
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:sigh: It's over. It only lasted 60 minutes(which is normal for a real CH episode after taking my maxalt). I did take the TIII, but I'm out of options for the rest of the night.
I'll be calling the doc tomorrow. Thanks for reading my rant.
Sam
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clusterwife
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Re: CH and work
« Reply #9 on: Oct 3rd, 2007, 6:55am » |
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Sorry to hear the bad news. My hubby Kevin takes his 02 to work everyday. He has the carrier with wheels, he uses a large tank. No one dare comment in a bad way. He also has about 10 people trained how to put the mask on him, to turn on the 02, and to bring him an ice pak. Kevin will get an attack, and his co-workers jump into action. Kinda breaks up the day for them, too. Once your boss understands your pain, and that you are considering quiting, I know he'd be understanding. Leah
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Annette
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Re: CH and work
« Reply #10 on: Oct 3rd, 2007, 7:07am » |
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Leah,
I am sorry to hear Kevin is getting it bad again. But please clarify for me, because it is important, that after surgery Kevin is now getting hit again everyday and its bad enough for oxygen and ice?
Thanks
Annette
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Bob_Johnson
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Re: CH and work
« Reply #11 on: Oct 3rd, 2007, 7:41am » |
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Good that you are seeing a neurologist but, before you go, confirm that he has some experience/interest in working with headache issues. We have had too much experience with neurologists who lack skills in this area.
Second, start to educate yourself:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. 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.
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Third, print and study. IF the new doc is not directing you along the treatment lines outlined in this article I'd be concerned about his knowledge base.
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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Charlotte
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Re: CH and work
« Reply #12 on: Oct 3rd, 2007, 8:24am » |
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"My question for everybody is how do you deal with these at work? I just had a full-blown level 9 attack at work that lasted almost 90 minutes. I don't know that I know how to deal with this. In fact, I'm tempted to just give up and go home "
- don't go home. By the time you get there you will feel better already.
"Last time I had CH issues, I was unemployed. Now I'm fully employed in a high-availability position in a Technical Support environment. I have a daughter and one on the way. I'm not sure how to get through this."
- sometimes we do lose our jobs, but whatever happens you will get through it.
"What if it gets worse? What if it doesn't go away like before? What if I lose my job or end up on short-term disability over this? Hell, I'm barely keeping my head above water as it is, and this isn't helping a bit."
- if it get's worse, you can deal with it. Be prepared and try to slam a red bull or medicate at the first sign of a hit. Be honest with your employer and if you are typical, you are a great worker, over achiever type, and will be worth making slight adjustments.
Mine changed in early '06, and I've been hit 10 or more times daily, with less than 7 days off since then. I've been on a slew of meds and herbs. Since the frequency upped, I also had trouble getting a diagnosis.
It has been a real struggle, but you can do it. If it gets worse, you just learn to appreciate what you have left. If you need help you ask for it, and overcompensate at other times.
There is not way to avoid getting hit during high activity times at work, when you have to interact with customer in person or on the phone - just do your best. I have trouble controlling "anger" in my voice, but my supervisor has been so great about it and just asked me to try. She also has helped me by stepping into my spot when I am getting hit at the worst moment. I couldnt' have made it without her. (When she was new, she acted like a ball-buster, but she has been great, so take a chance and be honest with your sueprvisor.)
And good luck. When you are having a crappy day, post and we'll pray for you to make it through the day.
Charlotte
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GaWd
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Re: CH and work
« Reply #13 on: Oct 3rd, 2007, 11:42am » |
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Thanks for your support everybody.
Last night it woke me up at 3:30. I took my Maxalt and I figured I'd take the narco, too, just to make sure I got back to sleep.
I woke up a few minutes ago, and while I appreciate how polite it was to not wake me up, I don't appreciate waking up and having a full-on ch attack rush at me in the first 90 seconds.
Good thing I have lots of vacation time.
Sam
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GaWd
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Re: CH and work
« Reply #14 on: Oct 4th, 2007, 12:06am » |
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A quick update:
I spent an hour on the phone with Kaiser trying to get into see a doctor today. I won that battle.
I spent 2 hours at the hospital working with the doctor and receiving a Toridal injection.
I was prescribed Fioricet on top of that.
I've felt a bit 'off' all day long, but I haven't had any attacks.
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Jobette
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Re: CH and work
« Reply #15 on: Oct 4th, 2007, 12:39am » |
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Now fight for the oxygen. It can and will make a difference in your being able to get through the hits. It works faster than any pain killer and is probably better for the little one.
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GaWd
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Re: CH and work
« Reply #16 on: Oct 4th, 2007, 2:32am » |
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I'm not pregnant, "WE" are...
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Jobette
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Re: CH and work
« Reply #17 on: Oct 4th, 2007, 4:36am » |
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Sorry,  Now, fight for the O2 because it is easier on you. Take the Tylenol III if YOU think that it helps you, but the O2 will, and red bull or energy drinks with caffiene and taurine. And it will still help the little one, because when Daddy feels better everybody feels better!! 
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GaWd
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Re: CH and work
« Reply #18 on: Oct 4th, 2007, 10:14am » |
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I'm very pleased that the Toridal seems to be keeping the beast at bay. I'm getting very faint pain from the left side of my face. Really, mere twinges. I know I'd be miserable right now if I hadn't had the injection, because I'm feeling a lot of the same pains that I get when I have a CH attack.
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SouthBronxSupreme
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Re: CH and work
« Reply #19 on: Oct 4th, 2007, 3:06pm » |
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^^^
All i can say is if you cant hang on then hold on - thats what my pops always told me. When Ive had real bad episodes Id just disappear into the restroom and deal with it there. Im glad you found something that helps, I plan to look into fiorcet but I really dont wanna take injections (my dad does). My luck tomorrow ill be there asking for one. 
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GaWd
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Re: CH and work
« Reply #20 on: Oct 4th, 2007, 6:01pm » |
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While most don't seem to find a lot of relief in Toridal, it almost seems as if it took the edge off just enough for me to feel normal again. I haven't felt this normal in weeks!
The Neuro Rx'd Imitrex injections and guess what? O2! My tank should be delivered today. He also said that as soon as I'm off the Imitrex, he would start me on Verapimil.
So most of your comments telling me what to do were right on, and so was the doc. I didn't even have to pitch a fit.
Sam
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Linda_Howell
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Re: CH and work
« Reply #21 on: Oct 4th, 2007, 9:32pm » |
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Quote:| I'm tempted to take some Tylenol III that my doctor prescribed to see if that dulls the pain any. |
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Let the temptation pass. It will do no good, and will cause rebounds from hell. Narcotics have NO place in the treatment of CH. 
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Katherinecm
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Re: CH and work
« Reply #22 on: Nov 10th, 2007, 2:43pm » |
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As much as I don't want to get the argument started again, narcotics DO work in about 10% of clusterheads, and I am one of them. Imitrex and other things that are standard for many of us cause massive rebounds in me, but Lortab does not. Having said that, tolerances to narcotics are permanent, so I only take them when I've been getting slammed constantly and desperately need an emotional break.
Do try out some Redbull, drink it at the first sign of a shadow. it makes everything prescription work faster and will delay a hit if nothing else. If it works for you, buy it by the case.
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JohnMcCloy
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Re: CH and work
« Reply #23 on: Nov 10th, 2007, 4:41pm » |
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Sorry to hear that Gawd.I am a long time sufferer who has done what you are doing for years now In not having any medication to fight back back.I am an independent contractor and have no health coverage so for years I have been going commando like you and everytime my cycle comes there are times where I truly understand why these are called "Suicide headaches".I am lucky in that I typically do not get CH during the day for whatever reason I do not know.Only about 25% of my hits come in the afternoon but i get smashed with headaches @ 7,11,3 am and 6 am when I am at peak.
Having attempted to do what you are doing I can only suggest a few things.
*Quit Smoking during your cycle (If you smoke)
*As tempting as it is not even one drink of beer/liquor/wine during your cycle (I have slipped a few times and am always sorry)
*As soon as you feel a shadow find a stairwell or private space and do some STRENUOS ALL OUT SHADOW BOXING LIKE YOU ARE IN THE FIGHT OF YOUR LIFE.As nuts as it sound 5-8 minutes of this can usually keepthe monster at bay or very muted.Sometimes I will have a sensation as though the headache is coming all at once in a matter of minutes.
*Take magnesium
*Take Melatonin in the evening
*Drink quite a bit of water
*Drink an energy drink or try some caffeine pills during the day.I actually aborted an entire cycle on mel,mag and caffeine ALONE.
If it all possible get your hands on some Imitrex Nasal injections.A special someone gave me some and it saved my life and opened my eyes up to knowing that you can fight back with meds. Unfortunately I am without medical but the imitrex aborted 9 out of 10 attacks.
Good luck Friend
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Brew
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Re: CH and work
« Reply #24 on: Nov 10th, 2007, 5:06pm » |
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on Nov 10th, 2007, 2:43pm, Katherinecm wrote:| ...tolerances to narcotics are permanent... |
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Hi, Katy. Welcome back. You should come out and play more often - we miss you.
Do you have a source for the above? I find it very difficult to believe. Thanks.
Bill
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