Hello, this is my first post, and really hope my last one.  My husband has suffered from Cluster Headache since he was 12 years old.  He is now 35. He has been having the episodes once a year, and each time it lasted for over three months.  WIthin that period he had a maximum of 7 and a minimum of 5 episodes per day, each of no less than 30 minutes. 
To my joy, last year a new doctor prescribed him a new medicine.  Not that it is new in the market, but it was the first time someone had told him about it. The name is IMIGRAN, by Glaxo Smith Kline.  It comes in injectable version but also as pills.  He argues that the injectable ones are much faster, durable and effective.  He combines that with Verpamil from Orion Pharma that lowers his blood pressure. 

The reason why I am writing this is that when I met my husband and I experienced his suffering, I came to the internet, and the information I found helped me understand what it was, and how to handle it, him and myself during the episodes.

This 2 drugs together have made wonders.  He has the pain, but it lasts 10 minutes, no more than 2 times a day maximum, and the pain is just like a normal migraine.  He just lays down on the sofa, and waits when before he would scream and say that he was going to jump out of the balcony.  And I can tell you, he was not joking.  This has been the second year, and I did not want to write immediately after the first year, beause I thought that maybe we were just being lucky. But now, that the same happened in this year's episode, I feel more confident to tell you my experience.

Well, that is all I had to say.  If you knew this already, then great.  If you did not and by trying it you get better as well, then I am extremely happy.  And if you want to try it or already tried it and it did not work for you, I wish from the bottom of my heart that you dont give up! there is for sure something that will work for you!

All the best, and my sincere best wishes for all that go through this difficult situation.

I wrote before doing some reading. I was so happy and enthusiastic.  But it appears that nothing I say is going to be new to you, and I am glad that u already knew of something that can at least reduce your pain.

Hit and run post? I think not.

I think you're going to have to stick around, daita. Once you become a member of the family, you can't leave the family. It's not tolerated.

See if you can get your husband to come on here. He can kick it around with some folks who know exactly what he's going through.

I can abort in five minutes using oxygen at 25lpm.  Look into it.

              Potter

Daita,

It doesn't matter one iota if we've all known about Imitrex and Verapamil.  What is important is that you found this place.

There is so much information here as well as folks who want to help you sort through it.  Please do not let these be your only posts.  There are other supporters just like yourself who can help you deal with this, make you laugh, and give you tips and pointers and take you under their wing so to speak.

I hope you can convince your husband to come here also.  At times he may need to vent...oh hell, some times he may need to scream, cry and cuss and we'll all be here to listen and allow him to do that too.

What state are you in?  There also may be someone near-by who can become a sort of buddy to you, help you get squared away with oxygen and show him how to use it, etc.

Linda

Linda,

I wish I could have said that so well.

Marc

welcome to the biggest family in the world
I use Oxygen at a flow rate of 25 and abort an attack in 5 min wich gave me back my life (not that i really had one in the first place) I hope you can get your husband to join our little band of merry men as the help and support is second to none.

Mark (feeling very robin hood today)

Hello!
I truly appreciate your replies.  I know you all know how I feel every time I see him going through that, and how happy I am that at least the pain has diminished. 

I will try to convince him about joining, but I think he might not do it.  He is a very private person, and deals with the episodes muuuuch better than me.  He is over it, he just goes on living, as usual.  It is me who suffers because I can't help him.  It probably sounds very selfish that I am the one suffering, well I don't thing I have to make that point clear... you all know what I mean.  But definitely, I will try to convince him to join.  And if I can't at least be sure that he will read the page, and you will hear from him, at least though me.  It is like, when he has the episodes, he deals with them, and when he is in remission, he just wants to forget about it altogether.

Btw, we are in FInland.

I have looked into the Oxygen thing.  He has as well, but since the doctor told him that Imigran was better, he never did much research. I will put more effort in getting him to get it before the next episode series begins.

Thank you so much. 

All the best!

Yes Daita...stick around.

I use Verapamil as well, and it is a good one, but I will never in my life be without an O2 tank , weather it be in the closet, (during remision) or by my bed.
   You really need to try it out.
  And Welcome !         lorac

I'm from The Netherlands, and around here there's doctor's too that say oxygen doesn't work for a majority of CHers. That probably is because they prescribe it at 7 lpm and often order the wrong mask with it.
Luckily my neuro immediately prescribed O2, but at 7 lpm and the wrong mask. Thanks to the info on this site I didn't give up on it, but got a non-rebreather mask and upped the flow-rate from 7lpm to 15 lpm. This way it did work for me. And now I'm on 25 lpm, it works even better!

So don't accept your doc's opinion about it, and ask him to prescribe it anyway. If he won't, find a doc who will! It doesn't matter if he prescribes 7 lpm, for some that works good as well, and if it doesn't you can get a high flow regulator yourself. You don't need a script to get another regulator.

Good luck and do stay in touch!

Lottie

Hi Daita!  Welcome to the nuthouse!  Have your husband at least do some reading here.  There is a tremendous amount of great info that is helpful to know even if one doesn't use it directly.  Understanding is key to dealing with it most effectively.  When you understand what is going on you can deal with it with more confidence.  Knowing there is a vast family out here to help support you is priceless.  I know I was on the verge of suicide when I found this place, and that was before I went Chronic.  I never would have made it had it not been for DJ and this crazy family that I joined.

Please look into the oxygen.  Print out some of the information on the oxygen info button (in yellow) to your left.  If your Dr has any further questions about it refer him to this page or to the O.U.C.H. website for more information.  The info button talks about 15 lpm, but I found that 25 lpm works so much faster.  I, too, can knock out a hit, even after it has gotten a good hold on me, in 5-8 mins. 

Oxygen has no side effects, and is considerably less expensive than Imagran.  Also, it will not cause rebound headaches.

Glad your husband has found some relief.  I also hope you both will stick around and become part of this family.  We are always looking to adopt nice people! :)

Jerry

The light at the end of the tunnel is a train. Full of people coming to help.

Our bodies have a way of building resistance to medications. No one is advocating dumping the Imigran, it's wonderful stuff. High flow oxygen , strange as it sounds and done right, really will abort most headaches. The ones that get through get tagged by the Imigran. It's cheaper and none of us have developed a resistance to Oxygen.

BTW To avoid confusion while reading the board; Imigran (EU) = Imitrex (US)

Yes Daita, do encourage your husband to search for info FIRST HAND.

CH is not common at all, and is not studied, at med schools, as thoroughly as more common forms of migraine. Hence, most doctors who are not neurophysicians are not very well informed, especially on therapies, most of which are relatively recent discoveries.

Most senior CH patients who have tried different therapies over the years will be far more informed than the average family doc.

Bless your heart for doing the research for him! [smiley=hug.gif] My wife found this site for me and gave me my sanity back. Let him know he doesn't have to explain how a CH feels, and how it screws up your life at times. Everyone here knows exactly what he means.

I'm another one who raves about the oxygen therapy. Kills an attack for me in less then 10 minutes without the imitrex "hangover!" Do consider sticking around, check out the "supporters" section where our significant others hang out and complain about what a pain we are while in cycle! ;) Glad you found us, welcome to the family.

Joe

Daita,

I too am a VERY private person,this site was a life saver for me...In the last part of 99,my ex-wife called me and told me that she had to speak with me in person (not on the phone) when i got to her place she brought me straight to the computer and showed me this site(within minutes i was very choked up) remembering how almost every night of battling with the beast thinking that there is someone else out there doing the same and thinking that i would never meet another clusterhead.....If i recall correctly i must of stayed on her computer that day for 5-6 hours reading all i can read and for the next month or so i would do the same( driving her crazy)i did not have a computer at the time ;D.....Please try to get him to atleast come to the site and read.....Lenny

Lenny wrote on Oct 11^th, 2009 at 1:23pm:

Daita, I too am a VERY private person,this site was a life saver for me...In the last part of 99,my ex-wife called me and told me that she had to speak with me in person (not on the phone) when i got to her place she brought me straight to the computer and showed me this site(within minutes i was very choked up) remembering how almost every night of battling with the beast thinking that there is someone else out there doing the same and thinking that i would never meet another clusterhead.....If i recall correctly i must of stayed on her computer that day for 5-6 hours reading all i can read and for the next month or so i would do the same( driving her crazy)i did not have a computer at the time ;D.....Please try to get him to atleast come to the site and read.....Lenny

And then you had the opportunity to meet some really special people  ;)

And then you had the opportunity to meet some really special people  ;)


[/quote]
Yes indeed...i will never forget that day( that was a special day for me)...BTW,that was the one and only time that i ever met with other clusterheads.....Lenny

So come to St Louis in Jan.  I'd like to meet you too Lenny.

Jerry

Hi Daita

My husband has also suffered from cluster headaches since he was about 10 but was only diagnosed about 6 years ago.  He also takes imigran in injection form, but on his last visit to the doctor, they were worried that his blood pressure was very high.  I am concerned that he is injecting too often, but know he will do anything to make the pain go away.  He is still experiencing several episodes per day but gets relief quickly once injected.  You mentioned that your husband takes medication for blood pressure.  Is his high blood pressure caused by Imigran or something else.  I was thinking that my husband should ask the doctor to give him blood pressure tablets also.  Thanks

Hey Sue,

Imitrex certainly can be a Godsend, but in many cases such as your husbands, it's generally better reserved for when it's necessary to bring out the big guns, while taking preventative measures to quash most attacks, and using the newer, more effective method of administering O2 to abort other hits when possible.

First thing your husband needs to do IMO is read and use this info which will inform him how and why to use half doses of his injections. This should HALVE his risk and DOUBLE the quantity of injections available to him, and take it from a huge consensus of imitrex users/cluster people here, it still really works very effectively:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Second thing is he just has to come to this site and educate himself with the ton of practical info regarding very effective treatment options to pursue alongside his imitrex injections. This will save his butt, as it has mine.  :)

One last big FYI: The Verapamil that Daita mentioned is a preventative drug for cluster headache that many report to work very well. Apparently it also lowers blood pressure (?)...something I hadn't paid attention to until now.

bejeeber wrote on Oct 17^th, 2009 at 12:08pm:

Second thing is he just has to come to this site and educate himself with the ton of practical info regarding treatment options to pursue alongside his imitrex injections.

I beg to differ.

There exists more that TWO tons of practical info on this site. ;)

Brew wrote on Oct 17^th, 2009 at 12:13pm:

I beg to differ. There exists more that TWO tons of practical info on this site. ;)

OK, point well taken, but lets be clear about this - those are metric tonloads.  :)

Absolutely. I'll give you that.

And I thought we Swedes were droll and private until I met the Norwegian who said, "It (a joke) was so funny that I almost laughed!--and then I met a Finn.

Welcome aboard, near "Landsman"....