Hi my name is John

I was first diagnosed with cluster headaches when I was 15 years old. Since then I have had chronic cluster headaches which I have spent pretty much my entire adult life trying to find an effective treatment.

They come in cycles (clusters) and are generally worse in Summer than winter. However the truth is they can hit me whenever (even out of cycle). I have tried everything, and I mean everything to try and keep them under control. It has only been in the past 2 years that I've found an effective treatment program.

If there is one thing I've learned about cluster headaches - it is that what works for some people doesn't work for others. For me, verapamil and oxygen are next to useless. The best treatment I have found for my headaches is the Imigran Injector Pen, that thing works every single time and stops even a KIP10 dead in its tracks. Unfortunately, it's cost prohibitive - especially when you have three clearly defined headaches each day over a period of 3 - 6 months.

Cluster headaches have prevented me from getting any real stable employment, I'm currently on the Disability Support Pension for my cluster headaches because I simply cannot work with them - I've tried and I so badly out of anything want to have a career, but at the age of 30, it looks as though that dream is slowly fading away.

My medication regime consists of:
Methadone 160mg Daily
Abilify 30mg Daily
Mirtazapine 30mg Daily
Concerta 160mg Daily

I was placed on OxyContin before they realised how addictive it was. I was only 15 at the time and continued treatment right up to the age of 24. The OxyContin covered up the pain of the cluster headaches for a little while but I kept having to increase the dose every 2 months, I was converted over to Fentanyl patches (Duragesic) but it was the same story - I kept needing to increase the dose every 2 months.

I know that most people frown at the idea of using opioids for cluster headaches but for me they worked to make the pain at least a little bit more tolerable. I could still feel the sharp pain of the cluster headaches over the dulling pain of the pain killers - combine that and the addictive part and to be honest I probably wouldn't recommend them either. I had the opportunity to come off opioid altogether but the pain of the headaches was unbearable and the truth is that I became quite suicidal - hence the methadone.

Anyway I'm not on here to have my situation judged upon by others. The real reason I decided to create an account was because of the Concerta / Ritalin. I had forgotten to take my dose this morning and just before felt a massive CH come on - I took my tablets and within a few minutes I felt instant relief - kind of like the Concerta has a "blocking" effect over the headaches. It got me thinking, this medication is quite new for me and I haven't really had any major attacks since I started treatment - combine this with the other effects of cluster headaches (tiredness, yawning, lethargy, confusion) and it kind of seems like Concerta could be an 'anti-cluster headache' kind of medication. I don't know if it would work for everyone, but a quick Google search shows I'm not the only one who has experienced this kind of relief before.

I have been fortunate enough to have grown up in Australia, where access to medication is freely available under Medicare. I have tried all the typical cluster headache treatments and was under the care of a Neurologist for many years until we both mutually decided to stop seeing eachother, because it just wasn't productive anymore and regular appointments with a psych meant he could just communicate with one doctor.

About 2 years ago I was diagnosed with Schizophrenia, this was a major blow to me and whilst the medication (Abilify) helps considerably, the whole dual-diagnosis thing really complicates the issue somewhat. Thankfully I have an amazing Psychiatrist who has seen me at my best and my worst and more than anything else actually believes me - this is something I've really found difficult. Finding medical professionals who actually believe just how serious the pain is, especially when you are on addictive medications, many just want to put you down to being a doctor shopper because it's 'easier'. I had one GP who treated me for over 5 years, I had such a great relationship with him and then one day he said outright 'all this time and you just want to get high' - I mean, how insulting is that?

So yeah, my story is really, really complicated but I hope that I can help others on this website as well as find others who are suffering like I am.
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