Hi Everyone
I'm new and just wanted to say hi to you all. My husband is a sufferer, he's had the cluster headaches for 37 years. This year has been pretty horrendous for us, the worst time we've ever had  :(  This episode started in November and he hasn't had much relief since then. He had the occipital and trigeminal nerve stimulator implanted in March but had to have it removed due to infection. He then had it implanted again in June but ended up with staph so it got removed in July. Now we're playing the waiting game, hoping that this episode just stops by itself otherwise the specialists want to try the implant again in March. In the meantime, he's just swallowing all the medication they give him, trying different things that he has tried in the past in the hope that they may have effect and hoping for it all to stop. Over the years we've had many people (including doctors and my family) call him a liar, drug addict and say that he is putting it all on, just because they don't understand the condition and thought that he was just doing it to get medication. He was seeing a neurologist who in the end apologised that he couldn't treat him anymore because he just didn't know what else to do so now he sees the pain management clinic at a major hospital and they are a Godsend! They understand the condition and try everything they can think of to help us. They even helped us get a disability pension for him to help with the bills etc because the CHs are so debilitating at the moment he can't work. A little bit about us...We've been together 10 years, married for 8 of those, we first met when I was 17 and fell pregnant almost straight away so we've now got two girls together aged 9 & 6 and we live on the Northern Beaches of Sydney Australia. I was thrilled to come across this community because it looks like it is a great place for sharing information and to also speak to other supporters! I can't wait to get to know some of you and I would love to be able to help if I can, so please feel free to ask me anything and I will do my best to try to help :)
Sarah

Welcome to the board Sarah, we're glad you found us too. ;) Two immediate suggestions, read this link:

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

Should be his FIRST line abortive. And with a case as severe as his, it may be time to try the "alternative" route. Non main stream treatments that have helped people with CH as serious as your husbands:

clusterbusters.com

Wishing you both some peace and pain free time soon.

Joe

Sounds like you guys have really been through the ringer.  Your not alone anymore, you have all of us  :)

Joe gave you some great places to get started.  Also check under the Medications and Treatments tab and find the thread titled 123 Days PF and I Think I Know Why.  Lots of good info there as well.

Hang in there.

G'day Sarah, and sorry you had to come looking for us, but welcome to our little house of understanding. We know only too well how cruel outsiders can be but you're amongst friends now.

You say hubby's been swallowing all the stuff the doctors give him so I presume that means Imegran tablets as well. Truth is they're not much good for this condition as they act far too slowly. Many people get great results using variously the Imegran injections or nasal sprays instead.

As others have mentioned, oxygen used correctly is a godsend and absolute first line of defence. After that there's Red Bull energy drinks guzzled at first hint of a hit and even melatonin, an OTC medication that can give quite some night-time help.

In the meantime just relax, take a big breath, and we're with you all the way.

Either you or what's-his-name is ever welcome to call even if it's just to say hello and organise a soothing ale.

Cheers from the north,

Brian

0406 068 295

G'day from the other side of the Tasman Sea

Brian is spot on with the oxygen. With a high flow rate and a non-rebreather mask I can kill off my CHs in about 5 minutes, which is a life changer.

Has he used imitrex (imigran) injections? They also can kill off a CH quick.

Did the stimulator help at all? Or weren't they able to turn it on because of the infections and such?  The Neuros/headache specialists around here had said the same thing to my husband.  Not much more we can do for you, but suggested the stimulator.  We cannot personally afford it, and can get NO insurance on board with the idea either.  :-[  He doesn't work for the same reasons.  They are pretty debilitating.  Hang in there.  I am still trying to get my CHer to get on here and read all the testimonials and blogs about the O2! Good luck to you and stick around.  You have found some wonderful friends from all over the globe here!!

Beth
Pennsylvania, USA

G'day Everyone

Nice to hear from you :)  So excited to chat to people that know what I'm talking about :)

My hubby, Matt, recently started back on O2, he tried it years and years ago but didn't think it helped but I asked him to start trying some of the treatments he'd used in the past to see if they had any effect this time round and he was willing to try everything. I guess we'll see how he goes.

At the moment he is taking Lyrica 300mg twice daily, Endep 100mg daily, Endone up to 60mg daily and then Morphine injections occassionally just to get a couple of hours of sleep but this is not a regular med.

Mike NZ - He has found that Imigran injections help sometimes but they are really expensive - about $120 AUD for 2 injections.

Brian - I told him what you said about energy drinks and he's going to give it a go. If we're ever up north, we'll let you know :)

Beth - he had a trial stimulator (everything connecting from the outside) and it worked fabulously so that's why they decided to do the permanent one. Both times we had it working until the infections set in, then it wouldn't work because of all the swelling. At the first sign of an attack, he would turn it on and within 15 minutes all pain was gone. He could turn it on no matter where he was. Fortunately we have been able to go through the public system every time except for when they took it out the first time (his specialist was on holiday and the only bed they had available was in the private hospital).

It is a relief that the government now recognises him as having a disability so at least for now until the next stimulator is put in, we can get government assistance. It's not a lot but at least enough to keep up floating and me not having to pick up multiple jobs.

I'm definately going to have a wander around the site, learn lots and hopefully be able to help some of you as well.

Sending my love to each and every one of you,

Sarah

Supporters like you are GOLDEN! [smiley=hug.gif] My wife found the original streaming CH site many eons ago, or I'd still be wandering in the dark doing lidocaine nose drops and popping firoinal. He's a lucky man to have you in his corner.

Joe

sarahCHwife wrote on Oct 14^th, 2011 at 6:44am:

I'm definately going to have a wander around the site, learn lots and hopefully be able to help some of you as well.

Good for you Sarah.  Knowledge is power  :)

Hi Sara,

I like Joe would still be popping Fiorinal like candy, if not for the lovely Mrs. Baer. You supporters are the best, hope your husband gets relief. Read ... read.. read... ask questions... repeat.

Great site, and greater members, we've all been through it, some directly and some as supporters. Within this little dysfunctional  ;) community is a great deal of information and support.

You've come to the right place. Sit down and stay a spell.

All the best and welcome aboard, when he's up to it, try and get your husband on the site as well. My wife was a member before I was, don't know what I'd have done with out her.

Baer