New member !!!
New member !!!
Hi, can I start by saying I'm a massive fan of OUCH and its members and its help keep me going through a very difficult time.
Any advice/support would be welcome and very much appreciated,
I've gone from the living in the 'normal' world to to what feels like the nightmare of cluster headaches / migraines. At the beginning of October I started getting mild headaches that built in intensity over 2 weeks and then bang! the first cluster headache happened and I thought I was dying of a brain tumour! Fortunately I was in the hospital at the time and I was give oxygen but it still lasted 50 minutes, over the next 10 days I had 18 clusters. I was hospitalised for approximately 10 days due to the severity of the attacks. Even though I tick most boxes (the unbelievable pain, the set times, the set locations, 1-3 attacks per days, no notice, respond well to oxygen / sumatriptan(relieved the pain between 5-10 minutes), they will not diagnose cluster headaches because I don't tick ALL the boxes red eye and runny nose! Since November I've had a sever 24/7 headache which is only now starting to reduce. I feel like the hospital and the GP have no answers apart from prescribing more medication, I'm currently on Propranolol 160mg 1 per day, Topirimate 100mg 2 per day, Lamotrigine 50mg 2 per day and Morphine Sulfate if required.
Ive got an appointment in February to discuss pain management and a nerve block injection.
The most frustrating thing is that the hospital and GP have diagnosed me with migraines! And as a result don't seem as interested as they were initially, when they thought it was cluster headaches.
Question, do you have to have all they symptoms to have cluster headaches?
Thanks a lot, it's been really good to write down my thoughts and frustrations.
J Pratt
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Ask for a referral to a neurologist: Prof. Goadsby, Dr Matharu, or one of the other CH specialists we know of. (Ring the helpline, one of the dedicated volunteers will explain with a full list of professionals).
You don't have to present with all the symptoms, the list is for diagnosis.
hi welcome to the site, i was also diagnosed with cch and got treatment for migrains for years, i now have suma injections and o2, its important to see a specalist nuro for correct diagnoses and meds, life will be so much harder till then, unless your lucky enuff to get a good gp and right meds that work, have a good read of the ouch site meny questions can be answered there, time will tell if your ch is episodik or cronich(cch), ch brings meny lows and hard times, we know as the ouch staff and members are ch like you, so we bin through and are going through the same struggles, so try phils good advice and start with ringing the help line to find a headache specalist near you and get the right help, theres alot of members on faceache with some good ch banter and support, so any questions how ever daft thay seam just ask, all the best d
Cheers Phil and Darren, really appreciate your comments and support, think the best way forward is to ring the help line for some specialist advice.
cheers.
J Pratt
hi john, thats what we do for each other, glad to help always d
Update.....got an email from Val and had an conversation with Liz ( both from OUCH) really helpful, as a result my GP is going to refer me to a a specialist Dr Nick Silver in Liverpool, in can see light at the end of the tunnel, thanks to OUCH!
J Pratt