Has anyone got tinnitus & epilepsy?

[Dobradee]

The epilepsy started about 2 years after I noticed a roaring in my head but tinnitus wasn’t diagnosed & the neurologist I was seeing when I was diagnosed with epilepsy said there was no link. 10 years on I’ve now been diagnosed with tinnitus after trying to ignore it. I’m sure there must be a link between the two & would love to hear from others in the same situation

[elsieadams]

I was diagnosed with grand mal epilepsy at the age of 14 with many years to control the seizures and lots of different meds. The tinnitus did not start until my late fifties. I have been seizure free for over forty years so I do not think the two are related. However, I developed osteoarthritis in my neck several years ago and now have five cervical vertebrae that are really bad . the bone spurs cause facial spasms from time to time and the tinnitus started about six years ago. When I move my head side to side the ringing in my ears changes pitches and I sometimes wonder if there is a connection the development of tinnitus. Since the doctors do not know how to help with the tinnitus how can we understand what is the real cause? It is definitely frustrating for sure. Maybe if enough of us explain our experiences and other health issues we may come up with some answers. Let us see what happens. Take care Elsie

[Sazzyrich]

I was diagnosed with epilepsy aged 26 although looking back I think I had had it since a teen. I was put on meds which controlled my epilepsy but came off them after 4 or 5 yrs to have a family and never needed to go back on them. I am now 50 and been seizure free for over 22yrs. My pulsatile tinnitus started 4yrs ago so don't think there is an obvious link but who knows what effect the medication had 🤷‍♀️. I think my PT is likely hormone related.

[Dobradee in reply to Sazzyrich]

How fantastic that you managed to stay seizure free, despite with the stresses of bringing up a family. I didn’t consider the hormone link, I’m peri menopausal, I wonder if that’s been explored?

[Sazzyrich in reply to Dobradee]

I'm definitely perimenopausal and am pretty sure that's a big factor in my pulsatile tinnitus. Tinnitus is a well known symptom of perimenopause due to falling hormones. Have a read. Dr Louise Newson is the Queen of menopause knowledge! 😊

[Dobradee]

Thanks I will, bloody hormones 🙄