Hi,

I'm not exactly a cluster headache patient, but my husband is. And because he doesn't like to scroll around on forums, talking with people who go through the same, I really need it sometimes.  He's not the only one suffering, I am too.  Off course, not as bad as he is, but in his active periods I'm not getting the sleep I need, 'cause he wakes me up to sit beside him and to calm him down.

After hearing the verdict that there is no cure for the moment, we tried living with it but now we're fed up and we are trying to control his clusters more.  We've found something around water therapy.  He didn't follow it like he should, but he started drinking more water and his last active period was much less painfull as the periods he had before.  It's not much, but it is at least something.

If you like to know more about me or my husband, just ask. I'll  try to respond in as short as time as possible.

Bye for now,

Leslie

Hi Leslie!

Welcome! 

Hugs,

Jeannie

Hi Leslie-

Welcome to you and your husband-  thanks for seeking out some guidance for him.   I am interested like guiseppe to know what meds he's taken, what he's tried etc.   

Hang in there! 

Kelly

Hi everyone,

What a warm welcome I've got here    I'll start replying to everyone in one message, it will be the easiest way.

@ Linda_Howell: Well, it's not like he always wakes me up on purpose.  I always wake up when he leaves the bed, and when I'm awake I could better help him, well, that's what I think.  The last active period was better for me, 'cause I'm a stay at home mum now, so I could get some sleep in the afternoon when the kids were resting, before I was working too, so I was always tired.  Plus with the medication he gets, he gets panic attacks and I need to help him calm down.  Normally he can't take pain medications, but now he has too for his clusters.
He takes preventive medication, don't know if you know the names, we live in belgium so it might be other names than you are used to.  He takes Nocertone in the period before his active clusters.  He feels when it is going to start and this medications helps for a while to keep the headaches away.  The moment he has it's first it doesn't help anymore.  For abortive medication he has Zomig.  In Belgium you can't get the oxygen at home.  I asked the doctor but because it's 12 liters per minute it's to much to have at home and he has to go to the ER everytime.  I'm looking into it, to see if it really needs to be that much, if  less is good too, we might get it at home, but I need to persuade my doctor with facts, so that's also why I'm here.

@ Guiseppi: he has two active periods per year, one in springtime and one around the holidays.  We never celebrated christmas without a cluster attack. Luckily my family knows that he has it, so that makes it easier to go to the family get together.  My stepfather had it too when he was younger, so he really understands.  He found an alternative doctor that helped him, and now I'm trying to get my husband to make an appointment with him, but he's not into that kind of thing, maybe he should be.

@ clustersufferer: I read it somewhere.  It doesn't work for everybody, but normally he has in his peek periods of his active period up to 8 attacks a day, now the biggest number was 4.  Plus, he normally doesn't drink a lot, maybe two glasses a day and not even water.  The doctor told him before he needed to drink more for his health, so maybe it is kinda related.  We'll see.  He's drinking more water these days, even now his period is over.  Maybe his next period will be less strong.  He does smoke, but will smoke less in his active periods.  Sometimes when he lights up a cigarette the attack will start, not always, but sometimes, so he thinks it's related to that too.  He doesn't have cafeïne either during his active periods.  He is a very active person, can't sit still for one second.

You know, the primary reason why we are looking for a 'healthy' cure for his condition is this: we are scared that our two boys (ages 3, almost 4, and 2) will get it too and I we find something that helps for him, we might be able to control it with the boys if they have it too.

Okay, I think I have everything now.

Buy for now,
Leslie

Hi Guiseppi,

He does use traditional medicine, he's not interested in alternative medicine.  Although my stepfather did have success, my husband still is sceptic (but i must say, even my stepfather doesn't really believe in it, but it helped).  And as I said, in our country, we can't get the oxygen at home.  He needs to go to the emergency room and that's a problem.  I can't drive and neither can he when he has an attack.  Going on foot, is also out of the question (it's about 1.5 mile from our home) 'cause it's to difficult during an attack.  I am trying to convince our doctor that a lower oxygen input will help, so that he can get it at home, but I'm still working on that one.
I will get him started on magnesium, calcium and vitamin D supplements.  Can he start that now, or is it better to wait until he has an active period?

Leslie

Thanks for the info. I will get him the supplements tomorrow.  Shops are closed now.  I'll see if I can find the post you are talking about.

Leslie

Thank you Pascal.  I will keep that in mind.

Leslie