Well today my husband got the diagnosis of cluster headaches.  I feel terrible, because I had done some research and told him it sounded like CH... (did I doom him to this condition?) I have never wanted to be more wrong... but I'm glad it isn't a tumor. He says it feels like his eye is being pushed out of his head.

I don't know-- Maybe his stomach will recover now... he's been taking tylenol, motrin, excedrin, aspirin like our kids eat PEZ. I can't tell you how many times he's asked me to break his neck or pull his eye out or squeeze his head or push on his temple. It's a sick joke now-- As in 'you never do anything I ask you to, I asked you to break my neck, I asked you to take out the trash, I asked you to make me a cake...' Then off I scurry to make a cake and take out the trash 'cuz 2 out of 3 ain't bad. I'm the 66 2/3% wife. (We're both accountant type people so that's a lame math geek joke, yes I know it's not funny)

It's not funny that my husband asks me to hurt him but when he's not in pain, but we try to take advantage of it and laugh when he can. I hope that doesn't upset anyone. We know how serious it is. I promise.

He's really active and in great shape, probably because running seems to help the pain sometimes. (IS THERE ANYTHING that helps the pain ALL the time?)  There are times he's tempted to get up and run in the middle of the night.  Is that normal?  I have so many questions... I am not sure where to start. Please excuse me if this isn't the right place at all or if I'm overdoing it all at once.

I see that some people use icepacks on the offending eye-- does it really help with the pain, or is it a mental thing? I don't mean to offend, I just don't know. We haven't tried it  yet. I mean usually he'll ask me if his eye is swollen but it's not, just red and irritated. Followed by dark circles due to a lack of sleep.

He seems to grind his teeth in response to the pain... later his jaw  and neck hurts, any suggestions as to how I can help with that? I dunno if I want to stop it in the first place or alleviate the pain afterwards. I just don't know.

Do triptans cause gastrointestinal stresses? He's had quite enough of that trying to drown a CH in OTC pain meds (like trying to drown an elephant in a tea cup) that so I'd like to see him on a treatment that doesn't cause side effects he's already tired of. I love him so much and I'd prefer no side effects, but something new would be better than no relief.

Okay-- what about chronic versus episodic?  It seems to me that he is episodic because sometimes we'll have good weeks, but it's never more than a few weeks.  But sometimes the cycle is only a short time, but then the relief time is relatively short, too.

The doctor prescribed a daily 'preventative' med- can't remember the name right now-- has anyone had any luck keeping the headaches at bay longer with those?

He's always tired all the time during a cycle. He can't sleep, and he's exhausted. If he does get a few minutes to sleep or even lay still, it's always too short or it's just a time when it's only 'less painful' not pain free.

Is this all cluster 'normal' or does all this sound so weird that I need to badger the doctors into looking deeper?

Is any of this Cluster 'normal'?

It's all normal because no 2 of us seem to have exactly the same symptoms! I'll tell you what worked best for me, many others have similar programs, it differs so much from person to person.

1: A good prevent. I use lithium at 1200 mg a day, blocks 70% of my attacks. I'm episodic, lithium supposedly works best for chronics...go figure right? ;) Verapamil and topomax are other popular prevents.

2: a good abortive. Oxygen works almost 100% of the time for me to abort an attack, in less then 10 minutes, often in as short as 6 minutes. Read the link on the left as it has to be used correctly or it's worthless. I use imitrex but only very rarely as I HATE how it makes my skin feel and the 02 works so well.

For now have him try powering down an energy drink, any containing the combo of caffeine AND taurine. many can abort or reduce an attack using those. And don't sweat the grave yard humor, if we didn't laugh at ourselves we'd go crazy! ;)

Thanks for being a supporter, supporteres rock!

Joe

Married to a CH sufferer wrote on Apr 21^st, 2009 at 5:51pm:

He's really active and in great shape, probably because running seems to help the pain sometimes. (IS THERE ANYTHING that helps the pain ALL the time?)

For many of us strenuous exercise can be of great benefit in reducing pain during an attack. I myself jump on my partners cross trainer like a mad man... :D once i feel an attack coming on and sometimes this can abort or reduce an attack for me.

As Joe has mentioned there are numerous abortive and prevent meds available to your husband. check out the 02 link on your left (in yellow) oxygen works for many and is an excellent way to stop an attack before it can get really painful. keep up the humour as your husband will need loads of it to help him fight back against this infliction and finally but not least hang in their as a supporter because although you may feel helpless at times just being there for him and listening to him ranting and raving about this crap will help him get through each day alot easier...!  

Wishing you both the best ...

Lefty...!

Hi,

I want to thank you for being such a great supporter too.  Without people like you out there, this would be impossible to live with!   :D  You're wonderful for trying to seek answers/ help for your loved one.

I have one comment on what you mentioned about your husband's GI issues - if he is already experiencing stomach pain/ discomfort

Quote:

Maybe his stomach will recover now... he's been taking tylenol, motrin, excedrin, aspirin like our kids eat PEZ

then I suggest he watch out for any additional problems for a few preventatives I've had experience with lately that have landed me into some GI issues - I have been on Topamax for a few years and know that they suggest NO NSAIDS (Aspirin, Aleve, Advil, etc) taken with it.  I was told by my neurologist to take Aleve for two weeks, then traded for Prednisone - a short-term steroid treatment for most to kill the episode - most likely exacerbated the GI problem.  This made me so sick, now I have some serious stomach problems.  
I just wanted to share in order to recommend Asking the Doc questions about the possibility of aggravating an already-existing stomach problem, and monitoring it so it doesn't get worse.  It can turn into an ulcer... Watch out for those OTC Anti-inflammatories.  They don't help much for clusters and can cause more head (& stomach) pain than they stop.  :-[  

Good luck with his preventatives!  I hear they can do wonders with the right combo for many.  I just started the preventatives a few weeks back, and will see myself!  Oxygen has been my best abortive while awaiting the preventative results also - and no side effects/ stomach pain worries.  ;)

Val

Wow. I can't believe all the replies already. It's easy to see what a caring community you have here. We are going to research O2 further. I think it sounds like it would help, but in some ways it would be best if he avoided going there- he's active duty military and that would be a career ender. I was medically retired last year due to having back surgery so we know how the system works.  This would not be a great time for us to both be out of work, even with our paltry retirement checks- we have 3 school age kids to take care of.

Maybe I'll have to find a way to make it happen outside of the Military medical insurance channels. I'd do that for him, but it's still pretty risky for both of us.  I'm betting O2 works fantastically, but I am thinking we'll have to work with meds for now.  

Thank you so much EVERYONE!

Married to a CH sufferer wrote on Apr 21^st, 2009 at 5:51pm:

I'm glad it isn't a tumor.

OK, so we got THAT taken care of.  Now let's go on from there.  No nasties to worry about.


Married to a CH sufferer wrote on Apr 21^st, 2009 at 5:51pm:

Maybe his stomach will recover now... he's been taking tylenol, motrin, excedrin, aspirin like our kids eat PEZ.

So get rid of all that OTC crap!  It does NOTHING for clusters, yet a nasty number on his innards.  BTW, as a side note, I ALWAYS eat something, and have a glass of milk (to coat stomach) before I take any meds.  I am always worried about a pill, sitting on my gut, eating away at it.  So, I always make sure I take something FIRST.


Married to a CH sufferer wrote on Apr 21^st, 2009 at 5:51pm:

It's a sick joke now--

Sick, demented jokes are a REQUIREMENT, here, because every one here (other than myself, of course) is a sick and demented SOB ...  REAL nut cases!  I am the only sane one on the whole site!

- - - - - - - - - - - OK, that above method is too cumbersome, and time consuming ... Let me answer your questions in a different format:


Married to a CH sufferer wrote on Apr 21^st, 2009 at 5:51pm:

It's not funny that my husband asks me to hurt him but when he's not in pain,(Hurting him is NOT allowed while he is going through an attack ... AFTER WARDS is fully acceptable and expected ...) but we try to take advantage of it and laugh when he can. (A good attitude, and a great sense of humor are the two first weapons to fight the beast.  DON'T dwell on the pain, dwell on the PAIN FREE times, between hits.  Laugh, joke, and live your life fully, even if it is JUST to SPITE the beast!)  I hope that doesn't upset anyone. We know how serious it is. I promise. He's really active and in great shape, probably because running seems to help the pain sometimes. (IS THERE ANYTHING that helps the pain ALL the time?)  There are times he's tempted to get up and run in the middle of the night.  Is that normal?  (Very normal!  Most of us cannot sit or lay still.  We have to be moving around.  Some sit and rock, others pace, others bang their head, and others do strenuous exercise.  Some, do all of the above ... Some have GREAT results in aborting their hits, by doing the strenuous exercise!  For others, exercise is a trigger.)  I have so many questions... I am not sure where to start. Please excuse me if this isn't the right place at all or if I'm overdoing it all at once. (You're not over doing it at all ... Keep asking ...) I see that some people use icepacks on the offending eye-- does it really help with the pain, or is it a mental thing? (Ice works for many, yet others use heat.  It is different for all.  Try each, and see what helps.  Move them around to different parts of the head and neck to find the spot that helps the most.  Heat or cold do not necessarily abort the hit, but it sure does take a bit of the edge off, and helps you cope with it, until it is over.)  I don't mean to offend, I just don't know. We haven't tried it  yet. I mean usually he'll ask me if his eye is swollen but it's not, just red and irritated. Followed by dark circles due to a lack of sleep. He seems to grind his teeth in response to the pain... (Not at all uncommon.) later his jaw  and neck hurts, any suggestions as to how I can help with that? (Hit him over the head, with a base ball bat ... Oh wait, I told you that you could not hurt him while he is battling the beast ... Ok .. Forget I mentioned the base ball bat ...) I dunno if I want to stop it in the first place or alleviate the pain afterwards. I just don't know. Do triptans cause gastrointestinal stresses? He's had quite enough of that trying to drown a CH in OTC pain meds (like trying to drown an elephant in a tea cup) that so I'd like to see him on a treatment that doesn't cause side effects he's already tired of. I love him so much and I'd prefer no side effects, but something new would be better than no relief. (The best abortive, without side effects is oxygen ... Read the information behind the tab, on the left side of your screen: oxygen info and that should answer most of your questions ...) Okay-- what about chronic versus episodic?  It seems to me that he is episodic because sometimes we'll have good weeks, but it's never more than a few weeks.  But sometimes the cycle is only a short time, but then the relief time is relatively short, too. (The present medical definition is more than 12 months of pain, without a 30 day (continuously) break in hits.  If he has not met those requirements, he is episodic.  If he has, then he is chronic.) The doctor prescribed a daily 'preventative' med- can't remember the name right now-- has anyone had any luck keeping the headaches at bay longer with those? (Many have excellent luck with prescribed meds, or even some unconventional methods to keep the beast at bay.) He's always tired all the time during a cycle. He can't sleep, and he's exhausted. If he does get a few minutes to sleep or even lay still, it's always too short or it's just a time when it's only 'less painful' not pain free. (Have him try taking Melatonin (3mg size) about 1/2 to 3/4 of an hour before going to bed.  Start low, and builtd up, if he has to, till it allows him a good night's sleep.  Some take 15mg  a night.  Sometimes it takes a week or two, to start giving the desired results.) Is this all cluster 'normal' or does all this sound so weird that I need to badger the doctors into looking deeper? Is any of this Cluster 'normal'? (Virtually EVERYTHING you mentioned is normal (if we can use that term here) for a cluster headache sufferer.)

Geeze, I get a motor mouth (fingers) don't I ?? ?? ??

I am glad you are here, but sorry you have to.  You are an AWESOME person to be such a great supporter!  He NEEDS your kind of support!  And when YOU need support, come right here, and vent, cry, scream, complain, or what ever.  We are here to listen and support you, the supporter!  There is even a special section for you, a supporter.  Go there to talk and commiserate with other supporters.

Chuck

You mentioned the fear of having it on his record that he uses oxygen.  There are others here, who are in the military, who have used it without problems, but then again, I don't know his specific duties.

There are many that do NOT get it through the medical channels, and use oxygen for welding.  It is the same, 100% pure,  as the medical, and it helps them out just as well.

Of course, I would NEVER tell someone to use welding oxygen for medical purposes, would I?  <wink WINK WINK>

Chuck