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 and welcome.

  You sound like a wonderful lady, and everyone of us who suffer have the deepest respect for all of our supporters who go through this hell with us and help make our lives a little better by bringing the ice packs, the coffee, making sure our 02 tanks are filled, making excuses for us when we get hit in public, etc.  

But I have to say this...I would NEVER, EVER  wake up my supporter from sleep to make him sit with me.  Might want to talk to him about that.

  You don't say what preventatives and abortives he is taking.  Can you tell us?  Does he have oxygen?  We might be able to help if we knew what he was taking.

Linda

Hi Leslie!

Welcome!  

Hugs,

Jeannie

Welcome to the board and bless your heart for being a supporter. When you get a chance, please give us a run down of what he's tried, what has and hasn't worked, how his cycles run. Maybe we can make some suggestions, there is a LOT more then water available to manage these things.   ;)

Guiseppi

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

bieke81 wrote on Aug 19^th, 2008 at 3:15pm:

Hi, 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.   Leslie

Thats interesting, although I don't know how well it works. For the past 3 years I have been doing construction and drinking a lot of water while on the job and in the past 3 years I haven't had my clusters start until fall. (usually when everything slows down and there isnt much work) This year I haven't been doing as much work and my clusters came earlier. Could they be linked to water consumption? possibly, or maybe its the physical activity. Does your husband smoke? Has he ever been diagnosed with low blood oxygen?
Is your husband a very active person?

I believe there has to be a simple answer to this, Like vitamin deficiency, dehydration ...you know what I mean? maybe most people dont, I refuse to believe that taking a drug to cover up the problem is an answer. That only masks it.

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

If he isn't interested in traditional medicine, at least get him to try the oxygen. It's as natural as you can get, and it'll stop an attack in less then 10 minutes for me, at times as quickly as 6 minutes. Even if insurance won't cover it, it's very cheap out of pocket.

Start him on a daily magnesium supplement, with a daily calcium and vitamin D supplement. It's proven beneficial for me in reducing the number and severity of my attacks.

Thanks again for being a suppporter, we do appreciate the tough road you guys go down for us!

Guiseppi

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

I stay on it year round. Batch, one of our more learned members, posted a great article on how it works with your ph balance to make you less prone to an attack. I'm no good with all the medical specifics, but bottom line was there  is a spcific chemical reason that the magnesium helps ease the CH attacks. Magnesium leaches calcium from your body which is why the calcium?D supplement is important.

Guiseppi

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

Bieke, welcome.

I'm from the Netherlands, so if you wanna speak in Dutch about it, you or your husband can contact me. Send me a pm if you like.

Groeten, Pascal.

Thank you Pascal.  I will keep that in mind.

Leslie

Hello Leslie

I am also new here I am a sufferer I often wake in the middle of the night and do the dance. Hang in there and hopefully his cycle will be short. I have just recently found this site myself and so for its been a great resource and support for me when I'm "dancing" and losing my mind inthe middle of the night. I am in a cycle right now and its pretty bad but tell him to hang in there and much kudos to you for being a support to your husband because I really felt I was losing my mind after 8to10 weeks of this madness and my wifes support was the only thing that kept me from running out into traffic just to end the pain.
Hang in there
Thanks
Pf days to your husband :)