Hi everyone new, here but not to CCH
Hi everyone new, here but not to CCH
Hi all I'm jason, I've suffered CCH for about 6 years now and was finialy diagnosed by neuro last year with CCH,hemiplegic migraines, 3 forms of tinitus and photophobia.
They have tried all the drugs going, I'm now on propanolol and amatryptaline with gabapentin for my degenerative disc disease, but nothing touches the CCH
The past few months the beasts have started stopping and waking me from sleep, means I struggle to get any sleep, I'm lucky if I get a couple of hours a night and during the day I'm lucky if I get an hour or two free of CCH's
I was politely asked to leave my career last year as I was off sick pritty much the whole of 2014 as I could no longer cope with the CCH attacks, so I will be soon asking for help and advice on how to claim bennifits as I have never claimed anything before in my life, I don't want to claim any but the stress this evil has put on family life and my wife having to get a job that isn't half of what I earned means I have no choice.
I have been reading the forums and see so many people with the same symptoms and problems and it's so nice to have people who understand what I go through and not see it as just a headache or an excuse to get out work.
Well that's me
Jas
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Hi Jas,
Yikes, sounds bad. I guess I'm lucky that the oxygen and injectors keep my CHs under control, though they are still, a daily and nightly, monumental, pain in the arse !
I'm sure you'll get lots of good advice on here,
best wishes
Neil
3 forms of tinitus
mine stopped when i had a hearing aid for one ear, mentioned to dr and got another forr the other ear, now only get ringing in the ear at night when i take them out.
these do not get offered for tinitus due to cost so you have to ask.
some areas are talking of scrapping hearing aids on nhs so be quick
3 forms of tinitus
mine stopped when i had a hearing aid for one ear, mentioned to dr and got another forr the other ear, now only get ringing in the ear at night when i take them out.
these do not get offered for tinitus due to cost so you have to ask.
some areas are talking of scrapping hearing aids on nhs so be quick
Thanks Neil yeah they are bad but everyone's are lol, they tried oxygen but it didn't work for me, last port of call for me is the amatryptaline which makes them worse grr so I'm stuck on propanolol, which doesn't do much for them but does for my tinitus well 2 forms of them but it lowers my blood pressure so when I get up I almost faint everytime or if I overdo things it's the same..
Duetto yes mate I get the high pitch 24/7 then I get the heat beat thumping type and finally the wooshing type that I get when my blood pressure goes up.
I've had loads of hearing tests and an mri and they say hearing is fine,I'd love to try a hearing aid as I get no restbite from the screaching in my ear, but they are thinking that it's connected to my CCH as it's mainly on the same side of the head as my CCH, I was discharged as they no nothing about tinitus and couldn't do anything for me ....Dr's words.
The one thing that annoys me is no one in the hospital want to link all my issues back to a severe motorcycle accident I had 7yrs ago and all of these issues started around that time,the most I get is a mumble from them, I mean at one point I had a back specialist tell me it might be MS, neuro ruled that out in 2 mins....even though I've been diagnosed with loads of different things and have told them about the accident they still refuse to scan my brain.
Does anyone else find that when they have a CCH attack that there mood changes, that they get really angry ?
Thanks sorry for the rant,but it's nice chatting to people who understand
Jas