Hi Nikki,

You are a sweetheart!  You help your husband more than you know just by being there and caring!  Of course you feel frustrated!  Who wouldn't?  The people that love us suffer right along with us.

Make use of the supporters section of this site.  There are some really wonderful people that can offer you advice  much better than I can.  They will be along soon.

Your post was so sweet I just wanted to welcome you and encourage you to stick around.  The people that are here for us are our angels!

Encourage your hubby to visit here.  This place has helped me soooo much!

Hang in there!

Jeannie

Thank you guys, your words of encouragement and support mean more than you will ever know.

DennisM ... my husband is on purely abortive meds, Zomig and Imigran injection system (not at the same time) and oxygen prescribed at 6LPM but we up it to 15LPM .. due to trial and error not knowledge, but the forum seems to agree that is the right dose. He now has a non returnable mask, although the GP wouldnt allow him one!!! He had a 2 week course of steroid in December last year at the onset of the cluster, which did abort it for about a month, but doesnt seem to have really helped. The clusters have now changed from 2 x 3 months per year with remission between to this year being the 7th continuous month of them.  The Zomig works quite well in as much as it seems to abort the cluster eventually, but also seems to mostly keep them away for a few hours at a time. The Imigran works fairly imediately, within 20 mins, but doesnt keep the clusters away for any length of time. The oxygen is the most effective tool that he has, but even so that doesnt always work, but it does make them slightly more comfortable. We also used strong coffee at the time of an attack, I now have several bottles of energy drinks in the fridge after reading the forum.
In the past he has had verapimil, but that wasnt effective for him, he has also tried beta blockers but they also didnt work.
Hopefully that gives you a reference to advise me from. Thank you for your kind words and support.

Hi Nikki,

The Imigram is the same as Imitrex, I believe.  The more I use, the more I need.  It causes rebound HA.  How much Verapamil was he taking?  I am helped with a fairly low dose at 360mg.  Some take as  much as 1200mg.   Others take Lithium while others take a combo of both Lithium and Verapamil.   What works for one cycle may not for the next.  Finding a Dr. that is willing to listen to your suggestions and try new things may be hard.  My Dr. didn't even want to give me the 360mg of Verap.  I had to beg!  I can't imagine if I would have had to go higher.

I hope you guys find relief soon. 

Take care,

Jeannie

Again, thank you guys, you are a great support.

You have made me realise that I am not useless and that my gut instincts in this are right.

A while back I waited till he was not in the midst of these and asked him what I can do best to help him when he is getting/got one. Consequently I am there with him when he needs me to be and not when he doesnt.. well mostly anyway, sometimes I think I dont guage it right.

I phone for his oxygen deliveries and for his meds and collect them, throw the kettle on and make strong coffee at the onset of one etc etc.

Phew it is good to know that I am actually helping. Until you all told me, I felt I wasnt doing anything to help, thank you all, I now realise that I am doing at least something to help.

I know I will still be upset by them, watching what he has to go through and being unable to take the pain away. Putting a brave face on the constant swapping between him reaching out to me and then suddenly turning away from me, but at least I now know that it is the beast and not my husband that causes that.

It is so reasuring to know that what he goes through is what every clusterhead goes through and that although it has changed it's pattern dramatically, that too is to be expected in as much as you shouldnt expect it to be reliable (so totally the wrong word, but you know what I mean).

I have 2 other concerns that I would like to air, I hope that is ok.

1 a couple of weeks ago he had such a bad one that it caused him to colapse in the street, he had been driving and arrived home as it hit really badly. He had pins and needles right through his body and the consequence of that was that he really thought that this one had 'got him' he didnt want to die on the side of the road.
I dealt with it by getting him in (with help from my 11 yr old son) and onto the oxygen, it then subsided fairly quickly. After the crisis had passed I actually got scared (not that I let on to my husband) and wondered if one of these could take him away from me? I am assuming not, in the more logical moments, but the element of doubt has now crept in and that one is quite difficult to cope with. Of course I will cope cos I love him and cos coping is what I do. Any suggestions?

2. His work, despite them kind of understanding the situation, is now following their protocol for anyone having a certain amount of time off work (he has had less than 2 weeks off in the past 7+ months) and he is being watched for time off sick, their argument being that it apears to be during the summer so is suspicious. He has had to see their medical people, who had to write a report on him (fortunately their medical ppl do understand the condition and did explain in the report that it can be a seasonal condition). I am concerned that this is going to affect his job and an outstanding promotion. Does anyone know what the legalities of the situation are? (We are in the UK, so I am assuming that both UK and european law applies).

One of the main trigger, we think, for his CH is weather changes and air pressures and because of the weather here being so changable at the moment he is suffering quite badly.  I am sure it isnt the only thing that causes them, and most of the time it is unexplainable, but weather does seem to be a factor

Anyway, once again, thank you all so very much 

Your on the right track, keep doing what your doing.
all the best