Pulsatile tinnitus driving me mad

[Bedlington14]

Could anyone give me some hope please? I’ve had pulsatile tinnitus for some years but recently it’s become much worse, so loud it wakes me up at night. I’m taking meds for anxiety and I have Vestibular Migraine (maybe meniere’s) but this is almost too much to bear. I’m scared there’s something seriously wrong with my brain. I had an MRI to check the blood vessels in my head a few weeks ago (haven’t had the result yet) and an MRI last year which showed white matter on the brain, which my Doc wasn’t concerned about. I have some hearing loss and regular build up of wax in my ears with a ‘fluttery’ feeling in the inner ear. My tinnitus is constant although sometimes worse than others, and I feel dizzy with it too at times. I’m a 61 year old female, otherwise pretty healthy. If anyone feels like sharing their experience, I’d love to hear about it.

[soos]

Hi Bedlington 14, My tinnitus is also constant but get some relief when I am out walking, or engaged in an activity etc. I have that fluttery feeling and I also have some hearing loss. Additionally, the quality of my hearing is getting worse. It has a metallic ring to it. However, I am so grateful to still be able to communicate. Perhaps we can support each other! Kind regards, Susan

[Bedlington14 in reply to soos]

Hi Susan, thank you for your reply. It’s nice to know someone else understands how it is. I had the result of my head MRI today and all was well so that’s one thing less to worry about! Have you had any tests? I’m wearing my hearing aids all the time now as I’ve been told the improvement to hearing masks the noise of the tinnitus. I’ll try anything. Will be good to hear from you again, Julie.

[1Dar in reply to Bedlington14]

Hi Julie , I have had tinnitus for nearly 4 years, have had a lot of operations and now onto my second cochlear implant..... long story ! I’ve recently developed hyperacusis which is awful , even my husbands voice is really loud,! I’ve been some pretty dark times but have to keep positive and just take one day at a time. Would really like to chat to someone on the forum just to help each other and share experiences so feel free to send me a message or even a private message, take care . Jenny

[Bedlington14 in reply to 1Dar]

Thanks for your message. I’ve started wearing my hearing aids all the time in the hope that sounds will drown out the sound of my pulse whooshing in my head. Today is really bad, it suddenly changed tone to a high pitched whistle which is driving me mad, but for 2 days last week I was hardly aware of it at all. It changes all the time. I’d like to chat to you and would be interested to hear your story. Are your ears the problem, if you’ve had a cochlear implant? Julie

[1Dar in reply to soos]

Hi Susan , I developed tinnitus nearly 4 years ago after I had a grommet put in my ear. I then had the grommet taken out and put in 3 times , a stapadectomy ( bone removed ) a cochlear implant put in my ear , but it was taken out due to so much pain and now I’m onto my second cochlear implant so as you can see I have had many operations ! I’m in a lot of pain and recently developed hyperacusis which is high sensitivity to noise. It’s been a journey for me and some days I think I just can’t go on , but push through it somehow . It’s good that you get out and can communicate ... I’m sure you will habituate and hope that you do. It’s a cruel thing to have and I try not to let it overtake my life too much.

Just thought I would write to you so we can perhaps help each other especially at the moment with the world the way it is! Take care, Jenny 😊

[1Dar in reply to 1Dar]

I hope I didn’t whinge too much!,,,

[Jimmuck in reply to 1Dar]

Hi Jenny. I hope you don't mind me replying to your post but I just had to when I read about everything you have been through. On top of my tinnitus, I have been having problems with a blocked eustachian tube and my GP suggested that the only option left for me was to have a grommet fitted, After reading your post, I think I would rather stick with the blockage! I take my hat off to you for all you have endured and I hope you manage to find some peace soon. Best wishes.