I have an apt with a neurologist this Friday due to rescheduling of my dr today. My family Dr and I have not yet found a treatment to help with my pain.  
Right now I get a severe headache at night pretty much at the same time and I'm in so much pain I lose 2-3 hours of sleep at night.  These headaches have been getting progressively worse the last couple of weeks.  I missed all week last week due to the pain and lack of sleep.  I went into work today and was late due the pain I was in, and found it very hard to concentrate and work.  I'm also getting headaches during the day as well.  Although it's not as severe as the night one it's still hard to function.  I was just wondering what you guys are doing about work and how you are coping?  I am the only working person in my family as my wife stays home with our kids so I'm torn on what to do.
Thanks for all the help and support you have shown already.
-Casey

Oh dear.  I have a horrible time when I'm in cycle, because of losing sleep.  I'm extremely mean when I don't get my sleep and I can't function.  First of all, I think somewhere on here you will find a letter that explains this crap to your employer.  Try that first of all.  But have you tried anything for the pain itself?  Like Red Bull. At least until you get some meds that help.

Are you sure you have CH? There is a quiz on the left of this screen that can help you decide if you do. Or tell us more about your symptoms and we'll try to help. The wrong diagnosis can be dangerous.

try o2 portible , thats what i do,

if you need send me a email been down your road , let me know the meds your takeing ect and i'll help as much as I can,

Can you apply for short term disability?  At least until you can get something that works?  

Paige_H. wrote on Jun 23^rd, 2008 at 9:27pm:

First of all, I think somewhere on here you will find a letter that explains this crap to your employer.

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Have you tried melatonin to get you through the nights?

What do you use as an abortive? You should always have your abortive around, even at work.

All you need is to understand CH. Proper timing of meds, a through treatment plan with the proper meds that work for you. This unfortunately takes time. Caffeine ,energy drinks and 02 can abort most of the daytime hits that interfere with work. Triptans are also important to have in case the others aborts fail. This is usually the nighttime hits.You then need a transitional med to help keep the demon at bay until a proper preventative can be found that works. You can work with this ailment however it takes work, planning and experience.
So get work and study all you can on CH and it's treatments, so you can guide the Nero in your treatment. Lord knows they need the help.
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traditional


clusterbusters.com
not so traditional

all the best
thebb
now get back to work ;)

Hi Casey,

Boy I can sympathize with you.  I too am the sole support for my family.  So not working is not an option.

Nani's suggestion of trying Melatonin is a good one.  Even if it works for you it will take a week to 10 days to see significant results.  I had to get up to 9-15mg before I saw any relief.

Get Oxygen!  It works for many and is my quickest ticket back to bed with the least amount of side effects.

Imitrex Injections are a good back up for the ones that O2 can't handle.  I only used a handful of injections during my last cycle.

You'll need a good preventative too.  I have to stay away from anti-eleptics like Neurontin and Topomax because they make me too fuzzy to work.  I've had a lot of luck with 400mg of Verapamil.  Your mileage will vary!

All drugs have their side effects.  IMO it's better than dealing with pain.  But you have to experiment with your Drs help to find the right solution for you.  That takes time and patients.  I know you don't have much of either right now.  But just stick with it.  I can't believe what a difference the right treatment plan has made for me.  It took two full cycles to get it right though.

Share the coleague letter with people at work.  I was very nervous about opening up like that at first but the support I got from folks at two different employers was amazing.  I bring O2 to work and no one bats an eye when I'm using it in my cube.

Good luck and let us know how we can help...

-Dennis-

yes you can apply for short term disabilty, im on it now getting myself lined out, mine is 300.00 a week for 11 weeks and 350.00 a week for 10 weeks. its something trust me I miss my pay checks ,I had to use my vacation and sick days first,

wow first thanks for all the feed back. now answer a few questions that were asked to me. i have not been told by a neuro that i for sure have ch, my family doc gave me the diagnosis she currently treats someone else here in Des moines. who has it and told me my symptoms fit almost perfectly. now meds i am currently taking are imitrex shot at night while they do seam to help they don't take enough of the pain away for me to get good sleep or any at all. my daytime meds are treximet all though i do have better luck with it if i take it with 1 to 2 redbulls

i have been studying this site and asking my doc about most of the things i read here she does not want me to try anything else until after the neuro i mean like the o2 and any other meds  

I had to look at what treximet was, its a abortive drug, imitrex is a abortive one two, abortive drugs can cause headaches as they where off, it would be better to do some prednisone tell you can get into a doctor, it will get you through work, and keep your money coming in so you can support your family, I know how hard this is for you and your wife, but prednisone doesnt cause rebounds, it might be , too be on it for a few weeks and when you tapper down no more headaches

Casey what are your headache patterns? CH last for a few Min's, two lets say a hour, when it gone, you feel normal , no light pain etc, not like a hangover, they come on in a few Min's , and magnify the pain in a few Min's,

I was fortunate in finding an effective preventative medication, a med I take while I'm on cycle to reduce the number and the intensity of my attacks. I take lithium, 1200 mg a day, while on cycle. I still carry an e-tank, (oxygen) while I'm working as well as my imitrex shots. The lithium blocks 80-90% of my attacks which substantially reduces what I have to take for attacks, and lets me keep up on my rest. Might be something to talk with your doc about, it's been my silver bullet for many many years now.

Guiseppi

Casey what are your headache patterns? CH last for a few Min's, two lets say a hour, when it gone, you feel normal , no light pain etc, not like a hangover, they come on in a few Min's , and magnify the pain in a few Min's, [/quote]

john, in answer to your question i will get woke up at  around the same time every night with a hot stabbing pain behind my eye my face will drop on the same side and my eye waters like crazy, this lasts about 2 hours then just like that it is gone. almost regularly i get hit again in the day time when i am at work. the two attacks are almost like clock work they go from 0 to 60 in less than 5 min last almost 2 hours and then are gone. every once in a while during the day i get the face thing but no pain.  i think my biggest problem is the fear. the pain is horrid and i find i cant sleep just because i am scared
casey

The fear of sleep is something we all know. The melatonin will help with that. Good luck at the neuro. I would beg for 02. Treat the headache, not the pain, Pain meds will not touch this pain.
all the best
thebb

Hi Casey,

Using triptans every night can eventually lead to rebound headaches.  You don't want to be there.  To dig out of that hole you have to face the beast naked.  

O2 is a better option.  Then you only use triptans as a last resort.

Tonight you need to get up on OUCH-US and print off this info:

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The first one summarizes the research backing up the effectivness of O2.  The 2nd document is Dr Rozen's justification for higher flow rates up to 15lpm.

Take this stuff with you when you see the Neuro.  Now don't just go slapping this down on his desk.  Give him the chance to make the right choices.  You don't want to come off like an a$$hole.

If he/she balks at perscribing O2, then you break out your amunition.  Offer to leave it with him to review if he'd like.  Be respectful and hopefully they will come around.

If not, look for a new Neuro.

Good luck...

-Dennis-