Connection with tinnitus and epilepsy?

[Scrambler]

Hi, I’ve just joined this forum and this is my first post (I didn’t even know it existed until I followed a link on Twitter). I was diagnosed with epilepsy about 10 years ago when I was 40. I was put on lamotrigine which had dreadful side effects for me, violent mood swings, depression, pains in my joints etc. It was around this time I also developed tinnitus. For me it’s a very high pitched screeching tone in both ears (feels like the centre of my head) and is continuous - it sometimes changes tone but never stops. I complained to my neurosurgeon so much that after a year he finally changed my medication to levetiracetam (1000mg daily). On the whole it’s been good, my seizures stopped, I got my driving licence back, my mood swings and joint pain slowly subsided. But the tinnitus remains (if anything it’s gradually got worse). I use thunderstorm sounds at night as a distraction to try and help me sleep but it doesn’t help that much. Any quiet time during the day is getting unbearable - I can’t even read a book in peace anymore as it’s such a distraction. I went to my GP and explained the symptoms, the response was “yeah I get that too, there’s nothing that can be done”. I’d be interested if anyone has any advice on how to cope or even is it reversible? Is this a side effect of my meds, should I consider changing them again? I think I follow most of the common (accepted?) advice - I always wear ear plugs if I ride my motorcycle, I stay away from concerts and loud places. I avoid stress (hard to do sometimes), I don’t drink alcohol or smoke. I do eat too much and don’t exorcise enough. And I’ve just realised I write way too long posts on forums (sorry). Any advice gratefully received.

[Judyspal]

Hi,some meds do have the side effects of tinnitus,rare but does happen,my sister in law started with T after taking medication.

I started with (diagnosed as) trauma tinnitus nearly 2yrs ago,very loud bangs in close proximity.

I have a fan going all night which I find helps immensely with regards sleep, during the day I also wear bone conduction headphones,which I love,as I can also hear sounds around me whilst listening to sounds to cover the T.

Has your Dr referred you to ENT ,they in turn could refer you to see an audiologist to see if you're hearing has been affected,and advise you about tinnitus retraining therapy, habituation etc

Hope this helps

[Scrambler in reply to Judyspal]

Hi, thanks for your reply. The doctor was pretty rubbish to be honest. Just saw it as a sign of the ageing process. He didn’t refer me anywhere or offer any advice. That’s not to say he’s a poor GP, he was the one who identified my seizures and referred me to a consultant. He just doesn’t see the need to try and tackle tinnitus. It’s frustrating but I’m hoping there’s a few resources on here that will help.

[Judyspal in reply to Scrambler]

I would try another Dr,he should refer to ENT as the consultant will probably organise a CT scan just to make sure there is no underlying cause for your tinnitus,just because a medication states tinnitus as a side affect, doesn't necessarily mean it is the cause.

Unless you have already had one of course.

[Scrambler in reply to Judyspal]

I had one when first diagnosed with epilepsy but that was before the tinnitus started. However it didn’t flag anything - to be fair it was on my brain as opposed to ears.

[Judyspal in reply to Scrambler]

Might be worth having a chat with your Dr, although I explained to my Dr what had caused my T,I was still sent to see ENT consultant,who referred me for CT scan,and also hearing clinic , audiologist etc

[Scrambler in reply to Judyspal]

Hi, I took your advice and went to see another GP. He was much more receptive to the problem - he thinks there’s significant hearing loss in my mid range and put me on a course of Serc-16 (16mg x 3 per day) it contains betahistine dihydrochloride which is meant to reduce blood pressure in the ear. I go back to see him in a month and if there’s no improvement, he’ll refer to me a consultant. Thanks for your advice.

[Judyspal in reply to Scrambler]

Glad to help,hope all goes well

[Colleen_The_BTA]

Hello Scrambler and welcome to the British Tinnitus Association forum.

Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

We have some resources that you might like to check out in addition to our home here:

tinnitus.org.uk (information and support details)

takeontinnitus.co.uk (free tinnitus management programme)

If you’d like to sign up to receive ‘Focus’, our new free monthly e-newsletter, you can sign up at tinnitus.org.uk/forms/conta...

Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call [phone])

We also offer a new web chat service at tinnitus.org.uk/helpline. If you are seeking an online ‘safe space’ to talk about your tinnitus? We're here to offer real time support, exactly when you need it. We listen, advise or direct, whilst engaging with you one to one when you are unable to make a call. We want you to feel you are able to communicate at your own pace in your own space confidentially with one of our Helpline Advisors who are on hand to look after you and answer any questions you may have around tinnitus. Simply click on the icon called 'We are here!' at the bottom right corner of the screen to start your chat.

Kind regards

Colleen

[Dobradee]

Hi, I’ve just joined this forum & found your post. Did you get anywhere? I too have epilepsy (started age 43) & am on levetiracetam. Although I think my tinnitus started before my epilepsy, but was much worse after the seizures