So how do you introduce the new man/women in your life to your headaches? They always want to help and repeat all the info we have all heard for years. But they are so proud of their research. I find when i am in the worst of the cycle, I dont care. I try to, I really do. I try to make an effort after the headache to thank them. I dont know each one seems to take it so hard, they want to help so bad. And I get tired of explaining why the drugs dont work for me, why I am untreated. Hmmm maybe I should quite dating  ;)

Any advice??

Hi Aura,

I think you should count yourself luck that you've bumped into people that thought you worthy of the effort.  Some aren't so lucky.

Having said that, it sounds like you haven't found a good treatment plan yet.  I searched through your posts but didn't find much in treatment history to go on.

If you can find an effective way of dealing with them then you won't have to suffer the questions and prodding of those around you.  It'll just become background noise to the rest of your life.

For me, Oxygen therapy has been a life saver.  In fact I haven't used a preventative in my last two cycles.  Just Oxygen and the occasional jab of Imitrex.  Everyone around me knows what I'm doing when they hear the hiss of the O2 tank.  We all go back to living when they hear it shut off.

Basically, it has become "no big deal" in their eyes.

-Dennis-

I am in a new relationship with a CH sufferer. Right from the beginning he explained as best he could what happenes and what he needs when he gets an attack.  My first reaction was to research. I thought that I was sure I could find something to help.

I sat with him and listened to how and when he gets these attacks, what he does for them, how it 'feels' to have one.  I have never has/seen this before.  Give your new partner all your info and direct them here. I have found a sort of peace with fellow sufferer supporters. It must be tiresome to repeat yourself and get aggravated when answering questions all the time. I would be too.

From someone who loves a Clusterhead... please understand that this is new for us - and a big shock to know your lover 'goes to battle' every night with a BEAST.

Dont stop looking for that 'one'... The right one will support you and be right by your side through it all...

Debbie

Well said Debbie. Welcome to the supporter's board!

Thx... I am big on finding people that are dealing with the same thing. He is starting week 2 of his current cluster cycle. He says they usually last 4 weeks... stay tuned for some further venting...  Glad to have found everyone on this site.

For me week two and three can be the worst. Sorry you had to find us this way. But  Welcome and my thoughts go to both of you. I can't even imagine what it would be like to witness an attack on  a loved one.  I think I got it easy being a sufferer.
Jrcox

PFDAN 

Morning eveyone,

   Well, he's at 3 a night now... sat night he said he was banging his head agaist the wall to try to get the pain to stop. That one was 1 hour long. Then of course, he had a few more overnight.
   I feel guilty that I get a good night sleep. I feel bad when I anounce that I have a headache and then realize who I was saying that to. I feel stupid for complaining after what he goes through. 
   He is good about it. I can see his anguish when it gets to that bewitching hour. He knows its coming... I want to reach inside his head and pull out that F-ing demon !! I'm sure he does too...
   All i can do is wait it out with him... I am coming to terms with the fact that I'm not going to find the one thing that will make the pain stop. I can just tell him I love him and be there when he needs me...

On that note...It's a nice afternoon here in Upstate NY... the sun is out. Gonna try some last minute yard work b4 the snow flies!!

Debbie

Hi Aura

Quote:

I think you should count yourself luck that you've bumped into people that thought you worthy of the effort.  Some aren't so lucky

like Dennis said.

We have the reputations for people not sticking it through.  All you can do is be who you are, and when life is better and you feel better, give a little extra love and care to your partner (and children if you have any).


Quote:

Dont stop looking for that 'one'... The right one will support you and be right by your side through it all...

Debbie is right and you Debbie, hang in there Girl, you are a good supporter.  Don't worry too much about what you think he feels and what you should or should not say.  Normality is the key.  When he comes out from a session the last thing he wants is for you to feel guilty because you do not have his symptoms or pain.

Hugs to both of you
Jazz ;)

Hello Debbie,

I'm a sufferer, huge thanks to you for your posting.  I've been trying to get the hubby on here, no such luck yet.

I might of missed some of the things he's doing for CH's...
But, a remedy, melatonin?  Is he taking any for the night time attacks?

Angela

Angela,

I used to take melatonin when I travelled a long distance between time zones.  Knocked me on my butt for some much needed sleep. I would only take like 2mg. I see on here some CHrs are taking 7, 8 and 9mgs!!  Seems like he would benefit from 8hrs of uninterrupted sleep.  Has anyone had rebound headaches or stronger than normal ones after sleeping for 8 hrs?? I will ask if it might give him at least one good night sleep... Doesn't seem right that he has to go through this thinking all the meds and O2 that he uses is the best he can do... I am learning alot from everyone. Thank You.  HUGE help...

Debbie

Hey,

I don't know if this will help, but I'm in a new relationship with a sufferer.  We're coming up on our six month and he's about a month and a half into his cycle.  This is also only the second time that he's had the headaches, so neither of us really know what to expect.  To make it even more stressful, we're currently living on two different continents. 

But I find that it became a lot easier, at least for me, when he was honest with me.  He tried to pretend they weren't so bad and hide it from me and that just made it more stressful.  I can't imagine how frustrating it must be for him to keep having to explain things, but I think I'm getting better and this website has done wonders to help me understand and it's such a wonderful resource to have people who know what I'm going through and have done it for years.

I know that I'll never understand his suffering, but I want to do whatever I can to help.  Even if it's just giving him his space and letting him know as often as I can that I understand that he can't always call me.  And I must admit, I do sometimes take it personally that he doesn't want to talk to me, but I am getting better and learning how to read his moods (pretty difficult over a phone).

As scary as it is for a new relationship, I love him very much and the fact that he has 'the beast' doesn't make me love him any less.  Keep looking.  I would rather have him, attacks and all, than to not have him at all.

Katlin,

You are right. I would rather have him... headaches and all... than not have him at all. He is very honest with me about the pain and frustration he feels. We are seeing alot less of eachother durring this cycle. He prefers to be alone when he has headaches. It took me a bit to understand it all. I am getting a good handle on it. He and I talk about how we both feel. He knows it hurts me to see him in pain.  I know he is frustrated and depressed and pissed off. I would have a million holes in my walls (and a broken hand) if I had to endure what he endures. This is week 3... he says all the years of having headaches it lasts 4 weeks... I am praying for the week to fly by and he can finally get that much needed sleep...

Hang tough,

Debbie

Thanks Debbie!

I've been feeling very down about our relationship lately and I don't think I would have had the strength to do this if not for this site.  I want to thank all of you for your honesty and your openness to help.  It helps to know that there are people out there going through the same thing I am.  It's also so wonderful see people who've been amazing enough to be supporters for years!  You're so inspiring to me!  Hang in there!  I hope I have the strength to be there for him.  But I think I will with all of you behind me

- Katlin

Hi aura,
Actually I want to tell my story connected with that topic. I think that when they care, then it is one of the best things that happens.

When I had my first cycle (last winter/spring) I was in a relationship and my boyfriend was not able to handle this. He was no help at all and left me due to the illness.

But everytime when somebody says "what should I do during your hit?" I say that he or she should leave.
Right now it is hypothetical, as I am in glorious remission.

My wife and I acclimated together to CH.

We've been together for almost a decade now, and I still remember my first hit. I was driving us somewhere, and out of nowhere I got a blinding pain in my left temple behind my eye that lasted only about 30sec to a minute(if that long). About 2 weeks later, the beast came on full time. It took me about 3 weeks to get diagnosed about a month before our wedding. Right after the MRI, they stopped.

She's put up with me and CH ever since-even though I'm not the best sufferer. I count myself as one of the lucky ones and have to thank ALL of the supporters because without mine, I have my doubts about where i'd be in life right now.

And remember, we aren't always that grouchy! ;)

Honestly, it has never occurred to me to mention my headaches to anyone I meet.  It is way down on the list of things that are important about me.  However, I am a 25 year episodic sufferer...if I were chronic, it might be a different story!  I can't imagine that and feel very lucky.

Hi all  :)

I'm new to this forum.  I also have recently started a relationship with a CH sufferer.  We have been friends for over a year now and I have known him through two cycles, the last cycle for him was the worst he has known. It lasted just over four months, we started out relationship right at the end of the most recent cycle, before we really became close. Now we are living together and so I am just looking for support and advice before the next season begins, thankfully he is in remission now. I have never spent the night with him before in the season so I am still unaware what to expect. I know he likes to be left alone during the attacks, and also (unlike many it seems) he is always just still and motionless during an attack. I don't know if he has just a lot of control, but he says any touch anywhere on his body or any sound like amplifies the pain, I wish I could just hold him while he suffers.

He has done A LOT of research over the year, having been a sufferer I think over 15 years now, so I am sure there is not insight I can offer about treatments, and he told me about this website so I know he already knows there's online support when needed. I know there is nothing I can do and I hate feeling helpless.

Look forward to chatting to you all on here and hope we can help each other, whether sufferers or supporters.

Sam

Welcome Sam - it is great your CH Sufferer and you are on this site. Look around - read what you can - and post to us when you have questions, want to say hi, or if we can help!

Quote:

So how do you introduce the new man/women in your life to your headaches?

You get prepared, that's how.

On my first date with my (now) husband, In the course of conversation...I told him I am a very healthy person, except for this..... ONE.....  little thing that I've been chronic with for 23 yrs. .  I had some very brief and condensed info I had printed out and let him read it.  He was very interested and asked a 1000 questions which I could then expound upon making him understand. 

On the 2nd. date I got hit in front of him.  He was prepared for what he saw and has been a wonderful supporter ever since.  He doesn't give a rats behind if we have to leave a movie in the middle of it or a party or what-ever.  He's even gone so far as to put his non-profit experience to use for OUCH, being on the BoD and as Treasurer.  That's how strongly he feels.

I do not want to even be around fair weather friends who won't TRY to understand much less leave you when the chips are down and neither should anyone else with this condition.

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Hope this helps.   Linda

Linda_Howell wrote on Jan 13^th, 2010 at 4:07pm:

On the 2nd. date I got hit in front of him.  He was prepared for what he saw and has been a wonderful supporter ever since.  He doesn't give a rats behind if we have to leave a movie in the middle of it or a party or what-ever.  He's even gone so far as to put his non-profit experience to use for OUCH, being on the BoD and as Treasurer.  That's how strongly he feels.

I've been a supporter for almost nineteen years.  We went through hell before he was diagnosed - I was pregnant with our first child and thought he was going to die of a brain tumor and my child would never know his father.  It was actually a relief to find out it was "just" CH.

Leaving him because of CH has never, ever, entered my mind.  It's no picnic for me watching him suffer, but I'm no picnic going through menopause, either - it all evens out.  The vows we took said "In sickness and health, for better or worse."  I mean it just as much today as I did 27 years ago.

I just want you to know there are people out there who stick.  Who take it in stride and play the hand we're dealt. 

Best of luck to all of you who are still looking.

Perfect Pat!!!!   Well said my friend!

[i][b]well ive been with my bf for a little over a yr. he never mentioned cluster headaches.. bc he wasnt diagnosed till after we started dating.. weve come across a problem.. he doesnt like to go out.. i mean at all.. leave it to him we would stay inside everyday.. is this common for cluster headache sufferers??? [/i][/b]

I don't know that I'd call it "common" but certainly understandable if he was just diagnosed and doesn't have a handle on treatment yet. What is he doing to prevent/abort CH so far? It is scary to be out and about and get hit. This is what he needs to overcome though so that he can own the beast, instead of the beast owning him.

What part of the world are you in? Maybe there is another sufferer nearby that can recommend a doctor etc.

Do tell us more!

My boyfriend and I have been dating for almost 3 years, but am going through the cycle with him for the first time in our relationship, right now. He always told me about his CH, but I didn't really understand what they were or how he would react until now. He had actually thought he had beaten them because he hasn't had an episode in over 5 years (he's in his mid-40s).

Last Wednesday, the headaches started in the middle of the night. I felt him get up a few times, but wasn't aware when he came back to bed. I didn't know until the next morning what was going on. He was able to get in with his GP (he's on an HMO) and get a prescription for Imitrex shots (since he didn't have a current one -- 5 years, remember). He found out that his insurance would only cover 2 shots/MONTH! He used both of them on Friday and then didn't have any more. When he got a horrible one on Friday nite, I just felt so helpless -- he was SOBBING and yelling in the other room. I just started to cry.

I, like many supporters, began reading everything I could on the internet (including the boards, here). It was a way to help calm me down and make me feel like I had a little control (even though I know I don't really have any). I went to the store and bought some 10mg Melatonin. When the hit subsided an hour or so later, I told him what I had read about Melatonin and he took the 10mg pill. He had no more headaches for 2.5 more days! He was taking 10mg melatonin each nite before bed.

Unfortunately, the headaches are back with a vengeance. We are now spending $160/day on shots (since the insurance won't cover any more). His GP won't prescribe Oxygen (or, at this point, even return his calls!) and I've BEGGED him to see a neuro. I even found an "expert in the field" who is taking new patients. But, he's really stubborn and says the doc probably isn't even on his insurance and refuses to call.

It breaks my heart to see him in so much pain. I would do ANYTHING to make him feel better or help him. But, short of just rubbing his shoulders and "being there," I'm not sure what else to do. I'm not sleeping well because I'm so worried he's going to have a hit and when he does, I don't know what to do.

I know he has the worst of this equation, but it's awful to see someone you love so much hurting so much.

Oh boy Cinnamon, you've got to get him to the neuro and some 02. It will make such a difference in battling the cluster headaches. Plus, he should discuss prevent meds - common ones are verapamil, lithium, etc.  Please read the  info on here and help him organize and take to the neuro appt with him. By the way, the HMO doctor has to return his calls, not sure what HMO he has, but call their patient/member services and demand a returned call. Once you get them, demand a referral to neuro.

Your loved one pays THEM, not the other way around. We're here to support you too, hang in there!

Christy

Cinnomamon,
         Why not get a welders tank,then get a regulator from E-Bay?It would be cheeper than shots.

You've gotten some good advice here,a true supporter
will go through hell and back with you many times

If you are a sufferer AND supporter,well that's a whole
different level of hell.


Just a suggestion,but it has helpped many,many ppl
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aura wrote on Sep 30^th, 2009 at 11:48am:

.... They always want to help and repeat all the info we have all heard for years. But they are so proud of their research....

I hate, hate, HATE when people who have NO IDEA what hubby has gone through pop up with a suggestion for treating with a chiropractor (I LOATHE chiropractors), some article on treating migraines (he has CLUSTERS dammit!!) or tell him all the great things they do to stop their migraines.  We both stand there and smile, nod our heads, kindly take the information, get home and FILE it away.

People have great intentions and genuinely hate to see others suffer. They want, they NEED to help in some way. Instead of deflating their efforts, we listen, but let them know we're doing well, are satisfied with our treatment, and are so very grateful for their concern. This site, and the majority of the people here we place in the highest regard and have received the most useful and productive information. It's kinda like what I've heard about alcoholics - only another alcoholic can help an alcoholic.

AMEN adore!!!