I appear to have originally posted this in the wrong area, sorry... so here it is again in the right area... hope that is ok......
I joined last year when my husband's CH's left me feeling helpless and hopeless. There was nothing I could do to help him (obviously). Then, after reading through this site, I discovered that his GP was failing to give him all the info he needed and I pushed and pushed and finally got oxygen for him, which helped tremendously. So firstly thank you  .
He was in remission for some months after that, but then they came back. After seeing the neurologist he was prescribed a course of steroids which aborted the attacks for about a month. Then they started in January this year(2008)and are still going and they seem to have changed totally. They are just as frequent, but most seemed to be manageable with the oxygen and the meds. Now he is getting more unmanageable ones(the real headbanging ones), one recently actually had him collapse in the road outside our house, the oxygen really helps, but doesnt resolve it totally.
I find myself again in the situation of a helpless onlooker, desperate to help my husband, but understand that I cant, no one can, other than by being there in whatever capacity, even if that is not sitting with him at the times of the attacks. You do whatever is necessary to help.
I would hate to tell him how much that they upset me (that would upset him), because what I go through watching him is infinately so much less than what he goes through with the suffering of them, so I put on a brave face and smile compassionately and tell him I am ok, that I am coping. The fact of the matter is that I am coping, because that is what I do, but I spend each and every waking moment (even the middle of the night moments) worrying about him and hoping that this might be the last one and remission might start again, he so needs a break and so do I.
I am writing this for 3 reasons, 1 I needed to get it off my chest and you guys seemed the obvious people to tell. 2. Hopefully my experiences will help someone else to feel understood and 3 I am hoping that someone will be able to offer me words of wisdom or support that makes me feel better.
I so hate to have a winge and I know that I dont really suffer because of my husbands condition. I, in no way, want to make out that I feel that anything I go through is on a par with a sufferer, because it isnt, it isnt even close. However as the wife of a sufferer it does have its effects, mostly because I feel so helpless and because I want to help, I need to be able to help him, but I cant.
I am not looking for a cure all, because I know there isnt one. I am just looking for a place to vent when it gets difficult for me to watch his suffering and hopefully an empathetic ear.
I hope I havent over-stepped the mark on this site, as that wasnt the intention.
Thanks for listening.

welcome Nikki, i think i can safely say that your husband is a VERY lucky man !!!! its obvious you love and care for him DEEPLY!  God bless you and ALL supporters!!!!! you my dear are priceless to your husband i am sure!!!!!!!!  Good luck, your days and nights just got a bit better Nikki!    Tuck

Good Morning Nik...
Sorry you all hard having such bad time of it.....fighting clusters is, indeed, a hard row to hoe for both suffer and supporter.  

Your feeling of helplessness is understandable for sure...been there done that.  My hubby was chronic for 15 years.  It does get better though...I promise.

You're doing a good job supporting, Sweetie.  It appears you are doing really all you can at this point.....advocate for him, research and study all you can here and on the OUCH site,  be willing to suggest different avenues of treatment for him and discuss them with his doctor, try different 'home remedies' (RedBull, ice, hot tea or coffee, etc.),  nag him if you must to get on the 02 immediately at onset, etc.

I've found over the years that the understanding and encouragement is VERY important.....be his cheering section, tell him to hang in there it will get better and that you'll hang in there with him,  encourage him to live his life as normally as possible in the PF times,  try hard not to let the beast rule your lives,  make sure he knows that you don't blame him or resent any of this and it's not his fault.  Let him know that you are more than willing to pick up the slack until it gets better....because it will get better.  

Now....it's very important for you to take some time for yourself too.  It doesn't matter what....a walk, bubble bath, visit to the salon or spa, etc.  A worn out supporter can't hold much up....

Remember there is always someone around to lend an ear....24/7.  We understand your pain, Sweetie, and we're always willing to listen.

It's hard duty for sure....you're doing a good job!

Keep in touch....

Big Hugs to you....

Jackie

Bless you all, you are such a great support.

Jackie and Garys girl, thank you both. I do the same as you and do all the research into the drug possibilities... however it takes a lot to convince my other half that any new drugs are going to be apropriate!! eg verapimil with lithium, he tried verapimil some time ago and it didnt work for him, it now apears that combined with lithium it may be able to help, but he is loathed to try it because of the possible side effects of the lithuim. I understand his hesitation, and feel that perhaps in his position I would be tentative about it. After all isnt it enough to be going through the cluster headaches without the potential to kidney damage.

We have been going through this current cluster for 8 months now, at a rate of about 6 per 24 hours, at least 2 of those being overnight, so he is tired out from them too. I have finally got him to agree that if at the end of this month they are still going then he will go back to the doc and ask to see the neurologist again, and hopefully give the combined verapimil and lithium a try. The neurologist did suggest lithium back last year for him.

What is everyones view on lithium and does anyone have any suggestions or info about the side effects etc?

Also, when going through these my other half does suffer badly from mood swings, ineveitably! Life gets on top of him and sometimes he explodes. My thoughts are that perhaps the lithium could help him there too, so a double wammy. What do you guys think and is this mood swing and temper thing a usual thing with cluster sufferers?

Thanks guys,

Nikki

blawrence, thank you, that  helps a lot, I know I am not alone.
Does your CH suffer from the mood swings and tempers even whilst not in the middle of a cluster headache.   Mine has become like it even between the headaches, not constantly, but regularly enough for it to concern me.
Whilst he is in the midst of one I expect to be snapped at if I ask him anything and I dont really have a problem with that (even though it does hurt at the time) because I understand that it is hurting and he doesnt have control anyway at that point.

My concern is that he has been in a cluster of 8 months and he is having mood swings and tempers that are going on even when he isnt in the midst of an actual attack. I am hoping that it is linked, purely because if it is then we can hopefully get some help for him with it.

I wonder if anyone else has this experience of the longer it goes on the more changes of character we see not just when having an attack but during the inbetween them bits too?

Thank you so much for your empathy, I really do appreciate it

Nikki

Hi Brooke,

Thank you they are wise words indeed. Yes you are right we shouldnt have to walk on egg shells, but we do have to pick the right timing to discuss these things, when they are being his is deffinately not the right time!!

He has been a CH for about 7 years and no they are not usually this long, about 3 months usually then about 6 months remission or there abouts. ie he gets 2 cycles a year usually, this is begining to look like he has gone from accute to perhaps chronic.

I have taken note of what you were saying about trying to ensure proper sleep, and perhaps this is something to tackle him about and then the doc for sleeping pills.
We do already have the o2 by the bed, along with Zomig so that he doesnt have to get up to treat one and the speed seems to be of the essence, so to speak, the faster we can get the meds etc into him the more managable the hit is. .. well mostly anyway.

Thanks once again hun,

Nikki

Brooke,

ur a star! I am on my way to talk to hubby and then I will order some off the internet. Just read up on the melatonin and it is what we naturally produce as kids and adolescents and it lessens in our systems as we get older... so hey it is all natural ... well kind of!
Not sure I can buy it over the counter in the UK but it is certainly available here via the internet from reputable sites.

Thank you so much,
Love,
Nikki

Nikki,  I'm responding to your question about the lithium.  I have no idea how it works as a mood stabilizer.  But I do know it has helped - in combination with verapamil (calan) a number of chronic clusterheads, at least for a number of months (someone responded to one of my questions about it saying it was a wonderful six months of relief).  It's got side effects that can be dangerous such that I think it's kidney function needs to be monitored while on it.  But it's definitely worth discussing with the Doc!

Hope the melatonin will help hubby get some sleep!  Being sleep deprived I'm sure isn't helping with the temper!     Unfortunately, it didn't help Gary before, but it has helped many, many cluster sufferers.  I do hope your hubby is one of them.

((((((((((((((hugs)))))))))))))

Laurie

And thank you for being in my clusterbrother's corner.



-Dennis-