Hi everyone,

I've only been reading the posts for a day or so, but have been trawling for many hours trying to understand more about this horrible, relentless condition. My friend developed CH a few months ago, and it seems that only recently it has really, seriously been affecting his life.

He's lost all hope, and has been seriously contemplating suicide. I really don't know what to do or even what to say to him anymore, he knows I am here to support him, but he just feels helpless and that his life has been completely taken over, which I do understand, but he doesn't seem to have the hope that he used to have about new treatments etc.

I really want to help him, but am just completely clueless as to how, does anyone have any advice?

Thank you so much for taking the time to read this

A good start would be to see if you can get your friend to come to this board.

There is a ton of knowledge to be found here.  There are many who will reach out and do all they can to help your friend.

We all need supporters like you who care.  Thanks for being there for your friend.

Carol

Hi Carol,

Thanks so much for the brief reply. Yeah I am working on it, as I don't think I even fully understood how much pain he was in until today, so I don't feel I've been there for him as much as I should have been anyway. But I have asked him if he's been on any forums or anything yet, am still waiting for a reply. Tend not to call him as I hate waking him when he manages to steal a few precious hours of sleep, so we shall see how he responds.. Fingers crossed.. Hopefully if I can persuade him to join he won't feel so alone.

I'm not qualified to deal with suicidal people, but I will comment that you need to explain to him that he has NOT exhausted all avenues to get control of Cluster Headaches.

So many people come her saying that "they have tried everything" only to discover how untrue that was. Most of us are not Doctors, but our collective experience is truly astounding.

With CH's, it is easy to let depression and feelings of isolation take over - but it is critical to understand that there truly are ways to retake control of his life!

We've been there, we understand.

Marc

Hi and welcome. 

You said your friend only developed CH a few short months ago.  There is no way he could have tried all the different approaches that are available to us to ease the pain or abort it altogether.  For instance..Oxygen has been a life-saver to so many of us.  Most times I can abort a headache in as little as 10 mins.  If your friend just tried the 02 and could see how helpful it is..his entire attitude about this condition would change.  Add a preventative to the mix such as Verapamil or Lithium..and his world would look a LOT brighter.

You are wonderful for trying to research this for him but I know for a fact that if you could get him here, to read up on all of our experiences, what works, what doesn't and all the medical info on this site as well as OUCH...he will not be sorry he did.  His outlook and depression will lift, I promise you.

I have been chronic now for 22 years and until I found this place 11 years ago I was pretty much where your friend is right now.  A lot of us were.  Having all this info, educating ourselves so we can educate our Dr.s, knowing we are not alone and that there are so many others in the same boat...well, it's Priceless.

Yeah it seems so, this is what I'm trying to make him understand. He just gave me a massive long list of a load of the things he HAS tried, and it seems like a lot (I'm sure there's still plenty more as I have seen just from looking on the message board here) but is there maybe different effects from taking the certain things he's prescribed differently to maybe how the doctor says he should take it? I'm sure I've read that some people have taken matters into their own hands to a certain extent. So maybe he needs to try them in a different format/different combinations? Am not entirely sure.. Bit out of my depth I think

A couple of things, if your friend has only had these headaches for a couple of months and has already been diagnosed, then he's damned lucky.  If I'm not mistaken, it takes most clusterhead years before they are diagnose.

Secondly, if your friend has only had them a couple of months, there is absolutely NO way that they've been through the range of treatments available, not unless they are just throwing pain killers at them.  Most of the prevents take awhile to even take effect (quite a few you have to ramp up the dosage gradually).

Have your friend join here and read read read and then read some more.  We have quite a few members from the UK and they are more than willing to help a fellow clusterhead (not that the others aren't.....).

Carolyn~aka~deltadarlin

Just want to start by saying what a great friend you are to have been researching for him and joining us as a supporter. Hate to be repetitive but it's true that only a couple of real cluster treatments could have been tried by now as the diagnois is so new. Many doctors don't know what they are doing when it comes to this since it is "rare" so to speak. So even if a laundry list of things have been tried, they unfortuantely probably have nothing to do with real cluster treatments. Your post caught my attention because I too was suicidal when they began for me. Instant hopelessness is a seemingly side effect of these nasty things. I'm sorry you are seeing first hand why they also call them suicide headaches. If it seems slowgoing to get him to join us, try having him search cluster headaches on youtube.com as just seeing other grown men going through the same thing and literally recording themselves while going through one may help just the littlest bit in seeing it's real and people live through it nonetheless. Just a thought. Not all men are ready to join a "support group" as I'm sure you can imagine.

Let's talk about what his current treatment plan is? What does he do when he gets a headache to abort it?

Have they given him anything to work as a preventative?

And has he discussed oxygen with his doctor?

Wow, so much to take in! Thank you all for being so responsive :)

Well, he seems to have cheered up a little bit as I have been talking things through with him over the past couple of days. He seems fairly reluctant to join any sort of group, and has said that he has looked through forums and read quite a few posts (he's very up on his research) but it seems to have done the opposite thing for him, and instead of giving him hope, has made him take on more of a 'what does it matter im going to have them forever anyway' approach. as far as i know he hasnt had a period of remission since he first started getting them in april too.. I'm not sure how long the periods of getting them last for.. but that seems like a pretty long stint? Please correct me if I'm way off. As far as I know medication-wise, he's taking some sort of sleeping pill type thing that knocks him out for around 16 hours or so (I personally don't think this is a good thing..) and has decided to self medicate right now with ketamine when he thinks he's gonna get one. Which is also an appallling plan. However, he now seems to realise this. I don't think he uses anything else to prevent or abort, but I need to probe him a little further (he's only just started talking to me about it, so I don't want to push it too far).

I know he tried some oxygen in the beginning, but I don't think he could get enough of it on the NHS, for some reason or another. But again, I haven't spoken to him enough about it as he's fairly reluctant it seems.

He did tell me he's so far been put on sumatripan, zolmitriptan, some kind of steroid, methysergide, andother triptan, and 2 other SSRI's he can't remember the name of.

That's pretty much where we're at right now

Please tell him he does NOT have to join any kind of group.  Tell him to just come to this site and read.  That's all. 

Hate to be real blunt here, but why in the hell would your friend use ketamine? 

I have to ask the same - and what's more is I would like to know who prescribed it and with what cause? Ketamine - okay now that's scary. Is it an in patient thing as the only papers I can find on it so far state it should be given with pulse/ox monitoring as either an in patient or in an outpatient clinic with a lot of monitoring

   What are the street names/slang terms for Ketamine?
Cat Valium, K, Special-K, Vitamin K.
What is Ketamine?
Ketamine is a dissociative anesthetic developed in 1963 to replace PCP and currently used in human anesthesia and veterinary medicine. Much of the ketamine sold on the street has been diverted from veterinarians' offices. Ketamine's chemical structure and mechanism of action are similar to those of PCP. 


       [smiley=eek5.gif] [smiley=eek5.gif] [smiley=eek5.gif] [smiley=eek5.gif]

Well.. I dunno if it's something to do with the effect it has like anaesthetic that means he doesn't get a headache, or doesn't feel it, something like that. It's not good... I think he just got to a stage where he was willing to try ANYthing that worked, and knew about some of the effects from friends, so then discovered his head didn't hurt when he took it... However, he has said he's gonna stop after he sees the neurologist on 15th..

Oh, yeah, he wasn't 'prescribed' it, it's not legal