Can anyone tell me what this is?

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Hi, my name is Sarah. I have come here really hoping to get some advice regarding medication and possible ototoxicity.

Basically, each time I try a new medication my ears really suffer to the point where I cannot continue because I am scared of what I might be doing to my hearing.

Since being diagnosed with MAV I have tried Propranolol, which did work (for 3 months) but then the dizziness came back and rather than go to a higher dose I asked my GP if I could try Topiramate instead. This worked well for the dizziness too but ended in disaster. I was ok on 25mg but then I went up to 50mg and within a week my ears felt strange. I shrugged this off and carried on but then my hearing began ‘zoning in and out’ (not completely), a bit like I was hearing under water. I noticed almost as soon as I took a tablet sometimes that my hearing went quieter. I carried on about 3-4 weeks on the 50mg. This culminated in a blocked ear feeling, ear pain/pressure, hyperacusis and numbness. It took three weeks after discontinuing Topiramate to get back to (almost) normal after this.

I was given a hearing test about 5 weeks after this and there was no hearing loss registered. In fact the audiologist seemed to indicate that my hearing might be slightly better?

I went onto Betahistine then, which caused no notable side effects but didn't really work either.

I then tried Venlafaxine but had the blocked ear feeling/pressure and sensitivity virtually straightaway (and slight tinnitus as well) and had to discontinue after less than a week. I tried it again and the same thing happened. My glands came up also.

I was then prescribed Zonisamide (50mg a day) and almost straightaway I felt something happen in my head, like a detached feeling and my ears went strange again. By the 5th day my glands were swollen in my neck, the back of my head hurt and my ears feel very painful and like there was pressure round them! I stopped, then tried a lower dose (25mg) but my ears still felt ‘blocked’ and there was pressure and pain.

I was then prescribed Amitriptyline. This time my glands didn’t come up but after 3 days on 5mg, and then 3 days on only 1mg, my ears are feeling so block/pressured and there was some pain again that I don’t think I can go on with this.

This is really getting me down as I need something to control the dizziness and each time I try something new, the same thing happens.

Does it sound like I suffered ototoxicity with the Topiramate and now whatever damage was done is being exacerbated each time I take a migraine preventative medication?

Does anyone have any advice for me? I can’t get a satisfactory explanation for why this happens from anyone. Thanks if you can help.

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7 Replies

  • Posted

    Hi Sarah I can't tell you anything about a toxic reaction to drugs as such but I did have ear problems vertigo and migraine all of which turned out to be related to auto immune disease. A lot of what you describe was familiar to me in early onset of disease.

    It also rang a bell that amytriptiline made it worse. That was also my experience. I saw a very good doctor who deals with auto immune inflammatory disorders and he explained to me why amytriptiline wouldn't work for me and why it made me feel worse.

    Docs prescribe these pills to people without often understanding the mechanisms which cause these problems. They can't diagnose it but are very happy to prescribe strong meds which may make you feel worse. But I feel quite certain they won't do any long term damage. Simply not work and temporarily make you feel worse.

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    • Posted

      Hi Margaret. Thank you very much for replying to me. I have some questions based on what you said if you wouldn't mind?

      Did you take Amitriptyline for migraine associated vertigo?

      Did you have problems with your ears when you took medications? Or do you mean generally and linked with the vertigo and migraine because of an undiagnosed (at the time) condition?

      I have to ask, I am curious, why did Amitriptyline make it worse?

      I had a problem with it in that not only has it exacerbated my ears but I had a fast heart rate when I went to the GP's and that was on a low dose (5mg).

      Regarding the possibility of ototoxicity, I have written to someone who has experience with this and he says it is ototoxicity for sure.

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    • Posted

      Ok ...yes I took it for migraine and associated vertigo. Fast heart rate is another symptom of my disease and for many like me with auto immune disease.. ...never given any reason for it it just is. Ami made me feel worse. Didn't really help the pain much and made the dizzy seasick thing worse but with an added dimension if other world ness I couldn't cope with. Saw a specialist in my type of dis9rder who explained why ami could make it worse. I didn't take it any more.

      Problems with ears before during and after ami. Not even vaguely related to that.

      Just for your own reference...a lot of the symptoms I had could look like toxic reaaction to something. It seems the most obvious answer but it wasn't.

      Do you have any other health issues? Any gastro problems or any skin problems? Joint pain?

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    • Posted

      Hi Margaret, no I don't have gastro,skin or joint problems, ... I do have a bit of neck stiffness, but that could be because I often don't move my head around a great deal or I have too many pillows!

      I am going to ask my GP about this auto immune disease.

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    • Posted

      Neck pain was also a symptom. I started off with the vertigo ear problems and then everything else came along over time. Joint pain was a good bit later.

      Anyway you can flag it up to them and have a chat about it. Ask about the blood tests too. Let us know how you get on.

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  • Posted

    If I were you Sara, with the benefit of hindsight of course, I would get full blood tests. I would ask for esr crp and ana to be checked.

    I would also mention to you that after long treatment I am in remission. I currently have no symptoms at all after years of going round in circles...trying detox plans you name it. Little did I realise they were making me feel worse.

    Ear problem migraine vertigo everything now gone completely. I would love to say it was some kind of detox situation that helped me but it was old medication and nothing more. My life is currently pain free and as normal as I can ever hope to be. X

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    • Posted

      May I ask which medication you use to treat this disease (if you don't mind of  course). I am genuinely interested in what you take for this that doesn't harm the ears.

      Many thanks for your replies to me.

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