New to OUCH
#1
Thu, 14/04/2016 - 19:21
New to OUCH
Hi all new to this site, was diagnosed with CCH in December by a neuro at Newcastle rvi after being referred my gp.
So far I've been on verulamium, topirimate
and now I'm trying venlafaxine but these headaches just seem to get worse and worse day by day.
Anyway that was my little introduction, hope this forum can help!
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Hi there and welcome to OUCH. Sorry you have to be here. If you have a look around the website you'll find lots of useful info. Meantime ask any questions you may have, you're in the best place. How long have you been suffering with this, as you mention he said you have CCH. Have you been offered oxygen and sumatriptan injections for your attacks?
Dorothy
Dorothy (Trustee)
Hello there,
Glad you found OUCH, this the place where everyone understands so I really hope that will help you cope. My husband is CCH (8 year). Is your neuro a headache specialist?
Harriet.
I have been suffering withave these headaches for about 18 months, my neuro mentioned the sumatriptan injections and oxygen but has not offered either of them.
I'm not sure if my neuro is a headache specialist ( Dr goldsmith at the Newcastle rvi)
Hello,
when I was first diagnosed it was like trial and error and a long wait to see neuro only to say nothing helped and again to go through months of pain,
there is a lot more help out there now thankfully for us sufferers a bit more knowledge etc
my saviour was oxygen and sumatriptan injections works every time good luck with your next appointment
ELma
I would ask your neurologist to refer you on to the headache clinic which is held each Wednesday at Newcastle RVI. In some hospitals you are seen and assessed in general neurology and then from there, referred to the headache clinic. I don't understand your not being offered sumatriptan injections and oxygen when you've been diagnosed with CH.
Dorothy (Trustee)
Well my nuero is now nasically abandonning me, he said he plans to discharge me and refer me to chronic pain management
Ring our helpline on 01646 651 979 and get some advice from them on referral to a headache specialist who should prescribe the right treatment if the diagnosis is confirmed. Good luck and don't give up!
Dorothy
Dorothy (Trustee)
Hi Thestalosj
sorry to read about his hopefully I may be able to help and point you in the right direction. I have suffered with CH for 18 years originally from Buckinghamshire but have lived in Newcastle for the last 3 years. I am currently under a neurologist at the rvi but am in the process of being transferred back down to London due to various issue. Would you like to talk?
Hopefully I can offer you some advice.
Njacktastic
As Dorothy has suggested our helpliners have a wealth of information on CH and the different treatment options not only of CH but also the other conditions in the TAC group [trigeminal autonomic cephalalgias] to which CH belongs. The service is free! All you do is leave a message, your name and number and one of our volunteers calls you back between 10.00 am and 2.00 pm ,or at a time you state suits you. Please note calls are returned from a withheld number.
Also recommend a good read of our website, there is a wealth of information on CH and things like research volunteer opportunities etc, useful documents to download, basic info if you are new to CH etc. etc.
Val.