Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> CH and work
        
(Message started by: GaWd on Oct 2^nd, 2007, 12:11pm)

Title: CH and work
Post by GaWd on Oct 2^nd, 2007, 12:11pm

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

Title: Re: CH and work
Post by Guiseppi on Oct 2^nd, 2007, 1:05pm

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

Title: Re: CH and work
Post by DennisM1045 on Oct 2^nd, 2007, 1:09pm

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 ;;D 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-

Title: Re: CH and work
Post by GaWd on Oct 2^nd, 2007, 1:33pm

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

Title: Re: CH and work
Post by Guiseppi on Oct 2^nd, 2007, 1:44pm

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

Title: Re: CH and work
Post by GaWd on Oct 2^nd, 2007, 9:43pm

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.

Title: Re: CH and work
Post by Jobette on Oct 2^nd, 2007, 10:01pm

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 :-*

Title: Re: CH and work
Post by mollybo on Oct 2^nd, 2007, 10:14pm

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.

Title: Re: CH and work
Post by GaWd on Oct 2^nd, 2007, 10:38pm

: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

Title: Re: CH and work
Post by clusterwife on Oct 3^rd, 2007, 6:55am

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

Title: Re: CH and work
Post by Lotus on Oct 3^rd, 2007, 7:07am

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

Title: Re: CH and work
Post by Bob_Johnson on Oct 3^rd, 2007, 7:41am

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.
--------------------
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)

Title: Re: CH and work
Post by Charlotte on Oct 3^rd, 2007, 8:24am

"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

Title: Re: CH and work
Post by GaWd on Oct 3^rd, 2007, 11:42am

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

Title: Re: CH and work
Post by GaWd on Oct 4^th, 2007, 12:06am

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.

Title: Re: CH and work
Post by Jobette on Oct 4^th, 2007, 12:39am

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.

Title: Re: CH and work
Post by GaWd on Oct 4^th, 2007, 2:32am

I'm not pregnant, "WE" are...

;)

Title: Re: CH and work
Post by Jobette on Oct 4^th, 2007, 4:36am

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!! 8)

Title: Re: CH and work
Post by GaWd on Oct 4^th, 2007, 10:14am

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.

Title: Re: CH and work
Post by SouthBronxSupreme on Oct 4^th, 2007, 3:06pm

^^^

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. :-/

Title: Re: CH and work
Post by GaWd on Oct 4^th, 2007, 6:01pm

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

Title: Re: CH and work
Post by Linda_Howell on Oct 4^th, 2007, 9:32pm

Quote:

I'm tempted to take some Tylenol III that my doctor prescribed to see if that dulls the pain any.

Let the temptation pass. It will do no good, and will cause rebounds from hell. Narcotics have NO place in the treatment of CH. >:(

Title: Re: CH and work
Post by Katherinecm on Nov 10^th, 2007, 2:43pm

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.

Title: Re: CH and work
Post by JohnMcCloy on Nov 10^th, 2007, 4:41pm

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

Title: Re: CH and work
Post by StrangeBrew on Nov 10^th, 2007, 5:06pm

on 11/10/07 at 14:43:32, Katherinecm wrote:

...tolerances to narcotics are permanent...

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

Title: Re: CH and work
Post by Katherinecm on Nov 11^th, 2007, 3:15pm

on 11/10/07 at 17:06:54, StrangeBrew wrote:

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

Thanks Bill,

off the top of my head I don't remember my source for this- I read this and then confirmed it with my neuro, but I'll find it again for you...

Katy

Title: Re: CH and work
Post by Katherinecm on Nov 11^th, 2007, 3:42pm

Well Bill,

I told you I'd find the source and I'm having difficulty locating it. It was a paper focused on neuroadaptation and gene expression of opioid receptors. I need to start keeping a notebook when I come across these things. Interestingly, google brought me to a paper with a somewhat different conclusion:

http://www.google.com/url?sa=t&ct=res&cd=3&url=http%3A%2F%2Fbja.oxfordjournals.org%2Fcgi%2Freprint%2F81%2F1%2F58.pdf&ei=AmU3R5CBOKSeiAH1w-TiCQ&usg=AFQjCNGoLY9nR81SlT6KwCxnYZWcr0b83w&sig2=D4zVnOhKM8sojwq8JpGscw

To sum it up, tolerances of those who were given morphine on a continuous infusion basis and those who self-administered as needed were much different, implying taking the drug as needed led to lower dosages, no developing tolerance, and less likelihood of dependence than those who were given it continuously.

I know there have been some studies indicating there is some harm in leaving chronic pain untreated, things like memory loss, etc. But for me I'll rather risk dealing with those and be cautious with the Lortab. That is more likely due to my knowledge of heavy addictions on both sides of my family tree and my fears of them than any medical study I've read. I can't separate my fears of addiction (mental-emotional addiction, not dependence) from my need for relief.

Thoughts?

Katy

Title: Re: CH and work
Post by StrangeBrew on Nov 11^th, 2007, 8:19pm

Katy - I can only speak from personal experience. The few times I've had surgery, and a few other times I've needed narcotics for a painful condition called hidradenitis supperativa, I've taken them for a few days (up to a week). After having taken them, the next time I needed them they were just as effective, each and every time.

I truly don't know - could be different for each person.

Smiles,

Bill

Title: Re: CH and work
Post by Linda_Howell on Nov 11^th, 2007, 8:41pm

Where did you get this percentage figure Katherine?

Quote:

narcotics DO work in about 10% of clusterheads,

Title: Re: CH and work
Post by Linda_Howell on Nov 11^th, 2007, 8:44pm

Leave it to you Bill to have such an exotic sounding ailment.
Quote:

hidradenitis supperativa,

:-/

Title: Re: CH and work
Post by StrangeBrew on Nov 11^th, 2007, 10:38pm

on 11/11/07 at 20:44:25, Linda_Howell wrote:

Leave it to you Bill to have such an exotic sounding ailment.
:-/

Google it. You'll see how f'n exotic it is. [smiley=laugh.gif]

Title: Re: CH and work
Post by Linda_Howell on Nov 11^th, 2007, 10:50pm

Sorry. I could have sworn it probably had something to do with the mouth...hence the "dentis" part.

Yeah Bill you never cease to amaze me. You are a talented musician, have a beautiful, creative wife to be so proud of, a son who is growing up respectable , good taste in frozen custard, a way with words, a John Deere, good friends who love you, for the charity work you do.... and now this.

I hate you.

;;D

Title: Re: CH and work
Post by Katherinecm on Nov 12^th, 2007, 12:55am

on 11/11/07 at 20:41:40, Linda_Howell wrote:

Where did you get this percentage figure Katherine?

Linda,

I'm sorry but I don't feel like rehashing this every time someone claims narcs never work or have no place in treatment when for a significant percent of those of us who have been given the labels "refractory" or "intractable" chronics, they are the only thing that keeps us alive. And no, that's not sarcasm, I'm serious. Just because something doesn't work for you doesn't mean it never works. I sometimes wonder if those of us who made the choice to not stay alive would have chosen the same if they had been better informed about their options with pain management. To start with, check our own survey board here:

http://www.clusterheadaches.com/cgi-bin/meds.cgi

and then go back and search through the archives. This argument has been hashed and rehashed several times and the studies have been posted. When I first went chronic and was full of hope that something would work for me I was here every day and someone would get into bickering matches about this topic at least once a month. God forbid that more people get to the point that their doctors start discussing methadone and experimental surgeries as methods of last resort and improving quality of life (forget about ever returning to work), but some of us are there and we don't need misinformed people giving us guilt trips about it on a "support" board.

Newbies who have yet to try everything and who need to come to terms with that there are only treatments, not cures, don't need to be given patently false information either. Narcotics do have risks, and they are not the right choice for many. They should be the first choice for none. But when you run out of options and they work, you have the right (arguably even the ethical obligation) to have your pain treated. And there is perhaps no worse time to prevent someone from using something that works as when it's a new diagnoses and they are terrified that the pain that they don't want to live with is never going to end. The initial understanding from doctors of why narcs are a bad idea is NOT that they don't work, but that they work too slowly. Once you've had CH for a while you come to learn what a shadow feels like and that you have an attack coming on. If you down a redbull and a painkiller at the first sign of a shadow you can have just a few minutes of pain instead of 45 minutes of counting down to the end of the agony. Is this an ideal solution? Uhhh, No! Definitely not if something as simple as a jab of imi and a few puffs of o2 work for you. But they don't work for everyone. I wish things were that simple, but if they were there would be no need for this board. Please, please, please, if you're going to preach about narcotics do so in the "please use them as a last possible resort because other ways may be more effective and less dangerous" sort of way than by lying and saying they have no place and they just don't work. If nothing else, do so just in an effort to be a little more sensitive to those of us who have run out of other options.

Speaking of our own little poll, I'm going to post a request for an updatable personal survey on the general posts board. I think I filled this out shortly after registering, and now I've tried just about everything.

Katy

Title: Re: CH and work
Post by Linda_Howell on Nov 13^th, 2007, 2:55pm

This is what a lot of us are getting when we click on your above link:

Survey Files Not Defined
Content-type: text/html
Incorrect Calling of Script!

Title: Re: CH and work
Post by Katherinecm on Nov 13^th, 2007, 4:44pm

Sorry, try going to the medication survey here: http://www.clusterheadaches.com/meds/index.html

and click the button to see the results.

Title: Re: CH and work
Post by Kevin_M on Nov 13^th, 2007, 5:33pm

Quote:

1-70% effective 386 10%

It is difficult to make the assumption for the 10% that it works, (as an abortive, as you use it) with a survey range of being effective from 1% of the time to 70%.

A higher % of people say over the counter meds work 1 - 70% of the time, are more effective.

Quote:

1-70% effective 491 13%

It is difficult to use that figure to say it works for 10% with such a large range of effectiveness if they were evenly spread throughout that range. In other words, as many people saying it works 1% as saying it works 70%. As many people saying it works 10% as responded 60%. A middle figure of 35% would be 10% of people saying it works one in three times, or 10% of people say it's 35% effective. That is different from saying it is effective for 10%.

on 11/10/07 at 14:43:32, Katherinecm wrote:

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.

Ice is reported over twice as effective using the same category of reference.

Title: Re: CH and work
Post by Annette on Nov 13^th, 2007, 6:44pm

If you ask Daniel he would say morphine worked by zonking him out, it didnt stop the pain, he just "floated above the pain". However, at that level of floatiness, he was totally non functional.

My biggest concern was he showed symptoms of addiction within only a few days being given it in hospital while undergoing DHE drip.

Since then the recommendation from the pain specialist is that he should never touch it again.

Title: Re: CH and work
Post by nani on Nov 14^th, 2007, 3:07am

on 11/10/07 at 14:43:32, Katherinecm wrote:

I only take them when I've been getting slammed constantly and desperately need an emotional break.

So, Katherine...I take this as meaning that narcotics really don't help your clusters at all, they just give you an emotional break.

There are many of us intractable chronics here, Linda and myself among them. Has it occurred to you that when we advise against narcotics and surgery, we're doing so to keep people from causing themselves more pain?

Narcs are triggers for many of us. And they take too long to abort an attack. Thank you, but I choose not to risk addiction so I can get an emotional break.

Surgery, even if one is lucky enough to come through it safely, often fails. Imagine going all your life as a "lefty", finally making the biggest decision in your life and having it done...and then start getting attacks on the other side a few months later.

There are far safer options, in many of our opinions.

Title: Re: CH and work
Post by Jill on Nov 14^th, 2007, 3:51am

Hi there...

Nani.. don't you use seeds and, as I recall, didn't Linda try them too? And don't they work for you?

There is a huge difference between those of us who have nothing that works and those of us that have oxygen or imitrex or some other sort of abortive and even preventative.

I, like Katherine, have nothing and I mean NOTHING that works for my pain but narcotics. I have tried everything that my doctors could think of, I have had two surgeries and this was the only thing that was really left to try aside from shrooms which my doctor cannot regulate. This he can.

For me, they work. I take them early enough and they make the majority of the attacks less intense and not nearly as long. They don't get rid of the pain completely but they make it more manageable and that is good for me.

This treatment is not for everyone and surely is not to be used as the first course of action but when you have tried everything than it makes sense - we all have a right to deal with our pain in whatever form we can find without being chastised but others.

This is just me, not everyone has to go this route but the road is out there. Why is it so bad to use them if it works and brings someone less pain? Isn't that what everyone wants?

Jill

Title: Re: CH and work
Post by Linda_Howell on Nov 14^th, 2007, 4:03am

Quote:

Please, please, please, if you're going to preach about narcotics do so in the "please use them as a last possible resort because other ways may be more effective and less dangerous" sort of way than by lying and saying they have no place and they just don't work. If nothing else, do so just in an effort to be a little more sensitive to those of us who have run out of other options.

PLEASE PLEASE PLEASE, do NOT ever tell ME what I can and cannot say here. No one has ever given you that right. I have been here for 9 years day in and day out, every single day helping anyone and everyone I can, try to deal with this horror. I've been chronic and intractable for 21 yrs. Do not assume you know what I have suffered with your "puffs of 02 and Imi. jabs" comment.

You come waltzing in her every so often waiting to promote what ever you do and try to rationalize it. Good for you. Rationalize it any way you like, most here understand that you do that. A lot..

No one cares.

But DO NOT EVER AGAIN call me a liar.

Title: Re: CH and work
Post by Linda_Howell on Nov 14^th, 2007, 4:08am

[smiley=wave.gif] Hi Jill. Now how did I know you'd show up on this one. OMG.... LMAO.....

Title: Re: CH and work
Post by Jill on Nov 14^th, 2007, 4:31am

on 11/14/07 at 04:03:48, Linda_Howell wrote:

o not assume you know what I have suffered with your "puffs of 02 and Imi. jabs" comment.

Geesh Linda,

Took this one a bit personal, huh? I do not think that she meant anything by that comment. It is simply a fact that it is different for those that have imitrex or oxygen as an abortive and those that do not. I mean, come on.. both of those offer quick relief versus having nothing that does that. See the difference?

You do have every right to say what you want and you do not hold back but sometimes what you say is not accurate. There IS a time and place for narcotics when it comes to CH and to say that there isn't is not right. I know a number of people who use them and it works for them.

I do not see what your problem is - why do you have to jump on people because they use this as a treatment? No one is saying that you have to use it - that is your decision just as it is others decision to use it.

And, in case you are wondering Linda, I came into this thread because I hate to see someone being made to feel like a fool because of what they try. Do you have a problem with that?

This is supposed to be a support group - that what you need and leave the rest. If you don't like the idea of narcotics in CH treatment than that is fine. But everyone here is looking for relief and for some, this is the way.

Doesn't every CH'er want this for another sufferer?

Jill

Title: Re: CH and work
Post by Kevin_M on Nov 14^th, 2007, 7:27am

on 11/11/07 at 15:42:10, Katherinecm wrote:

Interestingly, google brought me to a paper with a somewhat different conclusion:

http://www.google.com/url?sa=t&ct=res&cd=3&url=http%3A%2F%2Fbja.oxfordjournals.org%2Fcgi%2Freprint%2F81%2F1%2F58.pdf&ei=AmU3R5CBOKSeiAH1w-TiCQ&usg=AFQjCNGoLY9nR81SlT6KwCxnYZWcr0b83w&sig2=D4zVnOhKM8sojwq8JpGscw

To sum it up, tolerances of those who were given morphine on a continuous infusion basis and those who self-administered as needed were much different, implying taking the drug as needed led to lower dosages, no developing tolerance, and less likelihood of dependence than those who were given it continuously.

Katherine,

This article actually states a very good case for why narcotics are not a very fit abortive treatment for clusters. If taken "as needed" for chronic clusters the frequency for "as needed" can be more often than meant to be by that article. This is from your website, Squidoo.com.

Quote:

Hi, I'm KatherineMcEwien
I had my first cluster headache in February 2003. Since May 2005 I have had 2-8 cluster attacks daily.

Do you think this is what they meant it is for when used as an abortive "as needed"? Although the link isn't working for me, I can only use your interpretation posted.

While it's an encompassing website you have, I don't see mention of narcotics in any way as an abortive on it, which is what works for you.

on 11/12/07 at 00:55:37, Katherinecm wrote:

The initial understanding from doctors of why narcs are a bad idea is NOT that they don't work, but that they work too slowly.

I would hardly think this is the only reason.

Title: Re: CH and work
Post by nani on Nov 14^th, 2007, 10:05am

Jill, I spent 5 years as an intractable chronic. Yes, I've had much relief with entheogenic treatments, but I'm still a chronic.
I now ask you, do the narcotics prevent or abort attacks for you?
If they don't, then they're not working for you, either.

Title: Re: CH and work
Post by jimyhertz on Nov 14^th, 2007, 10:54am

I was always hit at night until about a year and a half ago when I changed to a rotating (days to nights) shift. Now my hits are very unpredictable and often at work or during the day. The good thing is I am aware and not waking up to a 5 or 6 or 7. I can see it coming. What I have picked up from all these woderful people is to do what works and keep it as minimal as possible. At night I take imitrex and naproxen for a carrier. During the day I always do water. First sign I down an energy drink. 9 times out of 10 that will stop the progression. Always have your stuff on hand is the other thing I have learned here. I am in a position that I can disappear if need be, so my coworkers, boss, the public is not aware. If need be I have vicadin which I take during the day. It stops the pain for the most part and does not appear to affect me physically. The Imitrex makes me feel like my body is shutting down, so I don't like to take it if I am going to be awake for long. I also cut my vicadin and the imitrex in pieces so I can take only what is absolutely necessary. I keep the pieces in my wallet in a little baggy so they are always with me. One thing that may sound stupid but seems to help is I put a small piece of wet kleenex in my nostril. It is not noticable and helps relieve shadow. I have not ever heard it talked about here and hesitate to mention it, but it works for me.
Jimy

Title: Re: CH and work
Post by StrangeBrew on Nov 14^th, 2007, 11:10am

on 11/14/07 at 10:54:22, jimyhertz wrote:

One thing that may sound stupid but seems to help is I put a small piece of wet kleenex in my nostril. It is not noticable and helps relieve shadow. I have not ever heard it talked about here and hesitate to mention it, but it works for me.
Jimy

The only thing that works better is if you stick your elbow in your ear. Try it sometime - but you have to be in a crowded area, and it's preferrable if you make mad dog noises when you do.

Title: Re: CH and work
Post by LeLimey on Nov 14^th, 2007, 11:15am

on 11/14/07 at 10:54:22, jimyhertz wrote:

.... I also cut my vicadin and the imitrex in pieces so I can take only what is absolutely necessary.

Jimy are you saying you have imitrex tablets? They don't work fast enough or long enough to be any good. You may as well chug jelly beans. You need imitrex subcutaneous injections, Zomig nasal sprays for faster relief or Oxygen.

If you are using tablets to abort you haven't a hope in hell of doing anything to relieve the pain. We need to get you some better info so you can have better options than that!!!

Helen

Title: Re: CH and work
Post by Jill on Nov 14^th, 2007, 11:38am

on 11/14/07 at 10:05:20, nani wrote:

Nani..

It is hard to explain how well the narcotics work. Yes, they do abort some of the attacks if I take them at the first sign and it does better with an energy drink. And, yes, they prevent some - I get less attacks on days when I take them.

Mostly, the lower the intensity of the hits and the duration of them. I do not take these everyday but I do take them most days because I just get hit too hard and too much to do nothing.

I agree with everyone that there are better solutions out there such as oxygen but, once again, they do not work for everyone. We all have to do what we have to do. All I want is some of my life back and if narcotics offer that than it is worth any risk for me.

Jill

Title: Re: CH and work
Post by StrangeBrew on Nov 14^th, 2007, 1:16pm

on 11/14/07 at 11:38:35, Jill wrote:

All I want is some of my life back and if narcotics offer that than it is worth any risk for me.

I would contend that with narcotics, you give up a chunk of your life to get a different chunk back. It can be a gain, a net-zero transaction, or a loss. Which chunk is more valuable is a personal decision.

Title: Re: CH and work
Post by Katherinecm on Nov 14^th, 2007, 1:20pm

Ooops I managed to revive the debate again.

Thanks for backing me up Jill. My point was that while they are NOT an ideal solution by any means, for some of us narcotics do NOT cause rebounds but imitrex DOES. Imitrex sends me straight into nonstop CH hell. Would it be accurate for me to go on and on about the dangers of imi and theoretical heart valve damage and rebounds and say it has no place in CH treatment? No. It works for some people and the pain relief is worth the risks to those people.

In the same vein, if a veteran has been here again and again and has lived through this argument again and again and clearly understands that narcotics are the ONLY thing that provides relief for some of us, it would be inaccurate (at the very least) for them to say that they have no place in CH treatment at all.

ALL my post was meant to do is to clarify that narcotics DO have their place in CH treatment. Yes, there are risks. This is why I take them occasionally when the hits get so bad that I need a physical break from the pain and not as often as my neurologist has prescribed. There are risks to all the treatments, and you are kidding yourself if you think there is not. If those other risks are worth it to you because those treatments work, then that's great. I'm genuinely happy for you. But don't get all superior to those of us who turn to the thing that does work for us.

You want to know why I "waltz" in here the way you stay and don't stick around? Because of people like you who turn this into a place of personal attack instead of one of support.

Linda you said "Narcotics have NO place in the treatment of CH." Where is the study to back that up???

Title: Re: CH and work
Post by seasonalboomer on Nov 14^th, 2007, 1:33pm

Side effects are a very different type of potential downside to trying a particular course of treatment than potential addiction. If you experience a side effect from Imitrex you get up, brush yourself off and walk away - and try another course.
But, if you go the route of narcotics and get addicted you don't just stop one day and walk away to another course of treatment.

I agree, as a last resort, narcotics seem to help some people. But very few. But I also think it appropriate to raise as loud an alarm as possible to denizens of CH.com that narcotics are the last resort due to their potential serious downside. Especially in light of the fact that many doctors do not understand what they are dealing with and are often quick to provide pain management instead of CH management.

So Katherine, you know your own situation. You have to deal with it the way you do. But just because a warning bell is rung whenever narcotics are discussed doesn't mean it is wrong to do so out of fear for making you uncomfortable.

Scott

Title: Re: CH and work
Post by ski2k on Nov 14^th, 2007, 2:17pm

I guess I figured I'd chime in here just to add my personal experiences into the mix.
When I was first diagnosed, I knew nothing about it. All I knew was that when I ended up in the E.R. cuz I couldn't take the pain of ANOTHER 3 hour long kip 10, they would give me a shot of Stadol. It did NOT stop the attack. It DID give me enough relief to be able to handle the pain, and it helped me get some much needed sleep. I let my doctor know about my E.R. experience, and he told me Stadol was available in nasal spray form, and that should help cuz it works much faster than pill form. He also warned me to use only use it when absolutely necessary, as it IS highly addictive, and CAN cause rebounds in some people. Neither one of us had heard of O2 use at that time, so this was the best we could come up with. We also started trying different preventatives at the time.
Fast forward a bit.... I never found a prevent that worked for me. As soon as I found this web site, I told my doc about it. We both did as much researching as we could, and got me on O2 right away. O2 helps most of the time, but there are times it doesn't. For those times, I keep Stadol nasal spray around for when it gets unbearable. I've used O2 and Stadol ever sense, however... It must NOT be used on a regular basis! I did use it daily for about a week and a half one time when I hit the peak of my cycle. I'll never do that again! I ended up becoming dependant on it. Doctor gave me two options to get off the stuff: Drug rehab, or taper down off it. I chose to taper down off it. I was able to do that without a problem, since I had not developed an "addiction" to it, but rather my body became physically dependant on it.
This cycle, I found the RC seed treatment. When the cycle showed the very first signs of it's return, I went back to the doc, and got a prescription for O2, and for Stadol nasal spray- JUST IN CASE! I've been really lucky with my seed treatment, and had not needed to use either one, BUT... they're here in case I need them.
I agree there IS a place for narcotics in the treatment of CH, but it is NOT an ideal solution. I imagine OUCH agrees to some extent, as Stadol is listed in their list of meds that are used in the treatment of CH, but again... It's not for everybody!
Personally.... I'm sticking with my RC seed treatment, even though there are some who feel this course of action is not ideal either. It works for me, so I'm sticking with it.

PFDAN to all of you, no matter what treatment works for you!!
Adam

Title: Re: CH and work
Post by E-Double on Nov 14^th, 2007, 3:18pm

START ANOTHER DAMN THREAD!!!!

The original poster asked how we deal withthem at work.

We do what we have to do.
I excuse myself when needed and then get myself back to work when finished.

Good luck with WAHTEVER helps you find relief and a functional existance

Title: Re: CH and work
Post by Kevin_M on Nov 14^th, 2007, 4:30pm

Scott, as always, very nice post.

on 11/14/07 at 15:18:51, E-Double wrote:

The original poster asked how we deal withthem at work.

Good luck with WAHTEVER helps you find relief and a functional existance

How we deal with clusters at work and using narcotics as an abortive, needs to be considered properly, when using them to abort a hit causes this:

on 05/09/07 at 01:59:40, Katherinecm wrote:

Granted, pain management doesn't seem to actually touch the pain much. But it does drug me into an oblivion that makes it not matter so much anymore.

I would believe that can have something to do with "a functional existence" at work for a chronic. Not to mention if job hunting, the pee tests that are incurred in order to start a new job.

Good point Eric.

Title: Re: CH and work
Post by Katherinecm on Nov 14^th, 2007, 5:30pm

Scott I absolutely agree completely with everything you wrote. Sounding a warning of dangers isn't the same as saying narcotics are useless however, and that accuracy is what I was requesting.

Functional is relative. Concentration needed for different jobs is relative. And not everyone works in the type of job that requires a drug test. I can't remember ever needing a drug test for a job, except for possibly once for a nursing clinical class.

Title: Re: CH and work
Post by Kevin_M on Nov 14^th, 2007, 6:17pm

on 11/14/07 at 17:30:10, Katherinecm wrote:

accuracy is what I was requesting.

So was I Katherine, unsurprisingly disregarded.

Quote:

Functional is relative. Concentration needed for different jobs is relative. And not everyone works in the type of job that requires a drug test. I can't remember ever needing a drug test for a job, except for possibly once for a nursing clinical class.

If you have been job hunting lately, you will see any application requires you to agree to a drug test. The quickest route to one immediately is to be drugged into "an oblivion" on the job. That's not relative.

Title: Re: CH and work
Post by Kevin_M on Nov 14^th, 2007, 6:30pm

Katherine,

I think Linda has been accurately in agreement with Dr. Goadsby, who says, as an abortive agent, opiates have no role in the acute management of CH.

http://www.escriber.com/Assets/EscriberDownloads/Images/Head.pdf

Title: Re: CH and work
Post by Annette on Nov 14^th, 2007, 7:06pm

Narcotics do not have a place in the treatment of CH as I see it. Treatment means helping the person gains back normal life and be functional again. Narcotics are palliative, it doesnt render a person functional. The life that you get with narcotics is not normal. Since CH pain is so severe, the amount of narcotics required to "work" is so high that it will render the person completely non functional. I have seen this in my own husband and as Katherine said so herself, it drugs her into oblivion so that she doesnt care about the pain anymore. This is the same thing I have heard Daniel described.

I have spoken to people here who uses narcotics for CH pain and when they do, they go off to "la la land" until the hit goes. It helps to cope with the pain if nothing else work but it is most definitely NOT treatment.

It has the same role in CH as in terminal cancer. If nothing else works, then you use narcotics to dull the pain to make life bearable. It does not help you becoming functional or able to work. In fact, stay on it often enough and long enough and it will render you completely non functional.

Therefore in my opinion, and many specialists agree with me, narcotics can not be considered treatment for CH. It is at best a mean to help a person cope, at least palliative care.

Title: Re: CH and work
Post by Linda_Howell on Nov 14^th, 2007, 9:29pm

Quote:

But it does drug me into an oblivion that makes it not matter so much anymore.

Yeah katherine. What a way to live. :-/

And Kevin...Dr. Goadsby who is the best we have, is certainly not the only Neurologist I get my words from. Every single Neuro who ever spoke at a convention I have been at... or whose papers I've read....has said the same exact thing.

Please do not credit little ol me as to why you only come here once and a very long while Katherine. The people here are VERY intelligent.

Title: Re: CH and work
Post by jimyhertz on Nov 14^th, 2007, 10:10pm

Brew and Limey,
I tried the elbow but it really didn't do anything for me. Just lots of shoulder pain and the howling scared my family.
I have a line on O2 to give a try. Zomig was quicker, but did not relieve the pain as well as the imitrex. True the pills are slow, 15 to 20 minutes. However I was only diagnosed a year ago and before that I had nothing but hot compresses, so 17 minutes is a blessing. I will ask about the injections.
Thanks,
Jimy

Title: Re: CH and work
Post by kcopelin on Nov 15^th, 2007, 12:23am

Well geez louise, I thought this was about CH and work.

Some deal by closing their office door or going into the restroom and using trex or O2. Why, I knew a guy once who used to climb on the Golden Gate bridge, and he didn't let CH stop him. 'Course he's a total nut ::) (sorry BBZ)

Others of us have lost jobs because of CH-either because we couldn't find a way to accomodate the beast or we are "intracable". Which means alot of very cool stuff like O2 and trex just doesn't work for us. I'm one of those people.

So to treat the pain or not. To take narcotics or not. To beat our selves up over the choices we've made, or not. To work through whatever issues come up, and maintain a level of functioning that works for us and our loved ones, or to throw in the towel. All VERY PERSONAL AND INDIVIDUAL CHOICES.

Linda is an unstoppable force, a warrior, when it comes to CH and supporting folks. I've never know her to lie. KatherineCM seems knowledgable and has made her choices. No judgement here. But please don't turn this into a personal attack complete with character assasination. The poor man just asked about work.

PFDAN y'all
kathy