Hi Everyone....

My names Ali, 22yrs old and I've had a diagnosis of CH since 2004 - diagnosed by a consultant neurologist...

bit of a history about my rollercoaster ride with this beast and how i've ended up at CH.com...


started having these long painful headaches since about 2002/3-ish, would wake up with them early morning (4/5am), these would last until mid-morning, then resolve and reappear late afternoon until mid-evening. this cycle would repeat daily for 8/9 days at a time for roughly 3 months then i'd go 6-7 weeks with just an odd headache lasting a few hours here and there until it all started again...

pain began to get unbearable at a certain point and it started taking its toll and got taken to see my GP who referred me straight away to the emergency department to have my eye sight checked... (so mid-cluster, photophobic and then i've got a doctor shining a slit-lamp into my eyes!)

that all came back clear, so he referred me for an MRI and neurology consultation, MRI came back as clear, and the neurology consultant diagnosed Cluster Headaches...

Treatment: Amitryptiline 10mg at night...
this worked for 8-9months until it began to wear off, then doubled dose again for 6-7months had to double dose again to 30mg until the sedative effects became a little bit too much...

changed treatment to verapamil 80mg three times a day...this didnt work at all...despite my doctor persisting with it for the best part of 18months... 'it takes a while for your body to adjust' .....i changed GP's....

new doctor decided to give nortryptiline a go, that worked at 10mg, same cycle - worked for 6months, then doubled to 20mg for 6months, then upped to 30mg

was seen by a different GP at the same practice as an 'emergency' when i needed a repeat prescription who first gave me 'Maxalt Melts'

WOW! RESPITE!!!! absolutely amazing, popped one of these on my tongue and the headaches would subside within 5-10minutes

he referred me on to Queen Elizabeth hospital for a neurology consultation and MRI again just to be on the safeside
they queried 'trigeminal neuralgia', MRI came back clear

treatment was changed here to include 25mg topiramate to my 30mg nortriptyline.... worked wonders from april 2011
saw consultant in october 2011, he doubled topiramate to 50mg

suffered another cluster beginning of this month...quite bad pain waking me in the mornings, persisting, making me very irritable, photophobic, and just really really really really bad

saw consultant this morning, he upped dose of topiramate to 75mg, wrote a letter to my GP to add olmatriptan 10mg PRN to abort attack and if that doesnt work for me to prescribe me imigran auto injectors....

was searching about imigran auto injectors that i stumbled across this site....


so....hello!

The QE hospital neuro. consult may or may not have been the best place. In the U.S., neuologists have meager education/training in headache.

Suggest you contact your excellent support group and chat with them about a direct referral to a HEADACHE clinic, by-passing your local folks. I understand that have a legal right for this procedure.

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

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Print the PDF file, below. Use as a tool to discuss treatment options with anyone you consult. This is the latest evaluation of commonly used meds for Cluster.

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Pills are generally too slow for a CH. The autoinjector works much quicker but I find it is limited in duration. While you're here, check out the O2 link at the left. It sounds too good to be true, but it's not. It is an amazing and quick abortive. Coupled with an effective preventative one can manage, though not eliminate, the attacks. Good luck and God bless. lance