Hi everyone, i'm a cluster headache sufferer. I'm going into my 4th week and this past week has been really tiresome on me, today i cried like a baby because i just can't take it anymore. Its so debilitating and ruins days on end for me.  I'm an ICU nurse who works just weekends and I stay at home Mon thru Fri and take care of my 3 little girls. My husband is in grad school, so I'm pretty much a single mom for now. This cycle has me just so depressed. I haven't had one in 4 years. Last time they came just at night, horrible enough, but I could at least deal with it, take my imitrex and sleep the rest of the night, and verapamil worked for me. This time, I'm having them during the day, when I'm supposed to be functioning as a mother. I take imitrex to abort them, And my verapamil isn't working this time to stop them. And I'm new to "shadow" pain, but I get that all day long in between attacks, with brief short pain free times. It seems as though the imitrex isn't working as well this week to abort them, they just linger and never really disappear. I know they say nausea isn't associated with cluster h/a, but I'm so nauseated from this pain,  Really just exhausted from them. I'm never sick and going through this makes me feel like a loser. I see a neurologist next week. I hope to develop a medicine plan that will work. I really hope this is over soon. I haven't tried oxygen yet, but if I get one at work this weekend, I'll definitely try it. My husband is extremely supportive and does whatever he can to help me. However, they really need to come up with a better name for this. "Cluster headache" doesn't exactly sound severe and these things are from the devil, lol. They really need to come up with a more serious name for this torturous suffering. Hope to learn more from this site and meet fellow sufferers.

Welcome to the community Jennb!! So sorry you had the need to find us though!

As many others will be along to tell you.....O2 is extremely effective for me in aborting hits within 8 to 10 minutes.....read all the info on the yellow highlighted Oxygen tab on the left nav bar!!

Welcome Home and sending PF thoughts and wishes your way!!

Dallas Denny

Hey Jennb, welcome to our hell.  Or should I say welcome to your new life managing your pain effectively so you can work and be a Mom as you choose.  Others will be along to add stuff and here are some things to try and think about:

Caffeine is a brilliant tool to suppress the pain.  Take at the very first inkling of an attack.  If you get an attack at the same time every day, then take it 15 minutes before you think it will happen.  Some people swear by the caffeine/taurine combo that is found in some energy drinks like redbull etc.  For me, coffee or soda or caffeine pill works fine.

Get your oxygen and set it up as per the "oxygen info" tab on this site.

Melatonin helps night time sufferers.  I don't take it but others claim great success.

Maybe that is all you need?? and maybe you will go for something stronger.  Many people here have a prescription or 2 they use to help.  Make sure you read up on all of the drugs as they can come with some serious side effects for some.

For alternative, natural medicines, go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; Good news; they work really well without the side effects.  Bad news; they are not legal, but they are readily available.  Check out that site before you discredit them.

Lots to read and learn at these 2 sites.  Good luck and feel free to ask questions!

--Shaggy

ps, hang in there, we have all been there and are sometimes there still.

thanks guys, you are all so very nice
how much caffeine does it take? because i've drank probably at least 60 mg before one and it didn't work.
it is very tough at work, i've had to hide out in the break room, my coworkers are good about it, but they understand it to be a "migraine", when you say i have a cluster h/a, everyone says "oh, yes migraines are horrible". not at all the same thing, thats why i really think it should be named something different. last time the imitrex worked relatively quickly at work, but i'm nervous about going this weekend, because the imitrex isn't working like it was for the last 3 weeks. thats why i will hook up with a non rebreather and 15 liters of O2 in an empty room and try that ( sorry employer, but its either that or i go home)
i take oral imitrex, i've only tried one injectable but do have a few injectables left, i have to be careful taking them, it caused me to have heart palpitations, and thats a pretty scary sensation, it lasts for about an hour, but wipes out the attack very quickly for me.
i'll be discussing that next week with the neurologist.

also, i was wondering if any of you have memory lapses, i used to be sharp as a whip, and since i've had these, i've had lapses in memory and congnitive haziness--just wondering if its a side effect of imitrex or if there's any research into this about the attacks possibly causing this problem

also, does the oxygen work to get rid of it completely until the next expected attack?

thanks for yall support(yes, i'm from the deep south), it feels so good not to be alone in this

The energy drinks (Red Bull, Monster, etc) couple 80mgs caffeine with 1000mgs of Taurine. That combo chugged seems to work wonders for me and others. If the imitrex injectables are out for you, consider trying migranol nasal spray. Doesn't work for everyone, maybe not for most, but it has worked for me. Expensive stuff, and like imitrex, limited by insurance companies. Still, there are more alternatives, including kudzu and clusterbusters. Good luck and God bless! lance

Well, i had to call into work today, yesterday i decided that my 180 mg verapamil dose wasn't working, and it really hasn't, i've had the worst week EVER, its like going through labor everyday for a week, the neurologist can't see me until next thursday, didn't like my other one so i'm switching to someone else-- anyhow, i increased my verapamil to 270 mg and decided to try it, it did prevent an actual full-blown attack, but i'm having awful shadow pain constantly-- well last night i began feeling awful in a different way, and being i'm an icu nurse i knew to check my vital signs, sure enough, pulse of 48, bp low-- can't increase the verapamil apparently---any suggestions as to what to try next for preventative treatment? i hate this trial and error stuff, what a mess. today i've gone back to 180 mg of verapamil, still pulse in the 50-60's, but my husband and i are both nurses and i'll be watching my vital signs today, these shadow pains are really bad too, blurry eye vision, pounding pain behind my eye and temple, and burning sensations that come and go, any suggestions for shadow pain? thanks

I've been using Lithium as my prevent for many years with no significant side effects. At 1200 mg a day it clocks 60-70% of my attacks, oxygen and the occaisonal trex jab seem to amnage most of the rest. A little lethargy that coffee breaks through okay, some people get hand tremors, I have not. Might be worth a try.

Joe

thanks, i'll keep it in mind, not crazy about lithium, actually scared to try it, however, this is the first day i didn't have one in a week, YAAAAAAAAAAAAAAYYYYYYYYYYY!!!!! i'm so excited, maybe my verapamil is hitting therapeutic range for me. i've learned alot from this site, i think i need a transitional med added, i'm sure i'll get more experienced as to what to do
the last time i had a cycle 4 years ago is when i was diagnosed and the verapamil worked very well for me, this time they started a month ago, with no regular pattern and then, BAM, last weekend regularly every day and by wed-thursday constant shadow pain with regular attacks daily
i really really hope its starting to get better i'm keeping my fingers crossed, if not, at least i've had a better day today, thanks for your tips!

thank you for the link ginger
its summer, and they want to have fun, they are 9, 6 and 2 yrs old. and at first we were having lots of fun, then all of a sudden mommy has become sickly and "very boring", my husbands in grad school and last week had to put school to the side, which is not good for his grades, this is all very taxing on us, i hope it starts improving soon
i have to admit at first i neglected how serious it becomes, having an attack occasionally, treating it with imitrex and  4 yr old verapamil, thinking i could get by without having to go back to the dr., not smart, so i learned the hard way-- next time if my meds are out-dated get to the doc pronto! and hop on a regimen right away!
its definitely a learning process

Hi Jenn,
I'm with you on the red bull drink.  My husband RAN out and got some for me (he'd have brought me the moon if he'd thought it would help) it was so nasty I couldn't get it down; so I went back to my caffeine and a melatonin. The prednisone and Depakote kept the beast away for me but this is only my first attack. As a healthcare person myself, I understand adjusting our own doses etc.  I did that recently and got "the look" from my neurologist!  LOL  So tonight is my first night without the Depakote and I have tapered to 5mg of pred. I just had my coffee and a melatonin and we'll see what happens.  I have my MaxAlt on the nightstand. I know how frustrating it is to go from superstar at work to less than optimal...unfortunately for me, my boss sees it too. Hang in there and I hope your neuro will come up with a plan that works for you. Blessings, lib