Whatever Happened To Lucy?

Remember my post Lucy In The Sound Dome With Diamonds from just over a month ago?  Lucy (that’s me!) was waiting to see a specialist after being told she probably had a tumour being played out in music hallucinations.  Yes, that’s right, a tumour on either my ear drum or my brain.  I had a whole list of other symptoms which I had no idea whether or not they were connected.  Thanks to one of my brothers I finally found a way to be seen by a specialist.  This specialist was an Otolaryngologist (I can’t even say that, let alone spell it!), which means a Head and Neck Surgeon, including the better known Ear, Nose and Throat.

I admit that the night before my appointment I was perusing websites selling hats.  I had, by the time I had nearly three months of hallucinations, convinced myself that I was going to need surgery and what’s more I was going to lose my hair.  All of my hair.

The good news is I’m not losing my hair, but I have decided that hats would be a good look for winter (fast approaching) anyway.

Instead of answering the question I desperately wanted to know, the specialist started off on what I thought were the minor but annoying symptoms – dizziness, nausea, loss of balance not to mention more dizziness again.  I could hardly stand up straight.  By looking at my eyes (it’s a while since anyone has been looking into my eyes!  He had to stand on his tip toes to do so.) while dizziness was induced, he could apparently tell that something was going on with my ears that usually happens after brain injury.  No brain injury here and he couldn’t tell why it had happened to me.  He simply manipulated my head in all sorts of strange directions and sent me into a spin like no spin has ever been.  I admit I swore…  the room was spinning so fast.  He ignored my colourful language and insisted that I keep my head where he’d left it for another 20 seconds.  Easy for him to say.  …and apparently it was fixed, as long as I slept half sitting up for a couple of nights.

But onto the important stuff.  The supposed tumour.  He had an old MRI from a few years ago which apparently told him I was tumour free. It’s still beyond me how an old MRI can tell him how I am now, but the fact that I didn’t have to fork out for another MRI was good.  And he gave every impression of knowing what he was talking about.   He seemed to be one of those doctors who are very knowledgeable but a lacked a little in terms of sharing that knowledge with the patient.  Actually he appeared to be getting tired of my questions, but for the money I was paying why shouldn’t I ask a question or six?

That’s the good news anyway, and don’t get me wrong I am very happy to be tumour free.

But the bad news now.  It may seem like there could be no bad news. After all, tumour-free is fantastic.  But I still needed an answer as to what was causing the music blaring in my ears most hours of the day.  It might not sound that bad to you, but it is like a form of torture and my biggest fear was that I would be told I just had to live with it… forever.

The music hallucinations are apparently being caused as a side effect of the pain medication I use for Fibromyalgia.  It has taken two years to find a medication I could use (in this case, Codeine), and now I can’t use it.  What’s more he was quick to add that the only other pain medication I had been able to use (Tramadol) is also likely to cause the same side effect.  In other words, I can’t use either.

Understandably the specialist wasn’t an expert on pain and so has sent me back to my usual doctor to work out what I do now, but it looks very much like I am back to only being able to use over-the-counter medication,  which does nothing.  Lucy is not happy.

Do I want pain?  Or music?  That might seem easy, but I don’t want either.  Maybe I’m expecting too much.

At least I don’t have a tumour.  At least I am not going to lose my hair.  But nor am I going to lose the pain or the music.

But hey, I bought a couple of hats!

“He took his pain and turned it into something beautiful. Into something that people connect to. And that’s what good music does. It speaks to you. It changes you.” 

― Hannah Harrington, Saving June

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7 thoughts on “Whatever Happened To Lucy?

  1. silverscreendreamer

    I am so glad you’re tumour-free but it must be frustrating as hell to have to stick with OTC pain relief to manage the hallucinations! Seeing the word ‘Otolaryngology’ made me laugh because I had to use it ten times a day when I was in the ENT dept at the hospital. Tongue-twister!

  2. John Richardson

    I’m glad to hear there is no tumor. Are you doing better with your new sleeping position? Try acupuncture and start smoking cigars. God Bless!

    1. The sleeping position was only for a couple of nights thankfully. Acupuncture is on my list to do but I’m still not convinced by those cigars. But hey, did I say anything about cigarettes? 😉

  3. Oh honey. . . While I’m so grateful there is no tumor — pardon, tumour — what an awful choice you’re forced to make! Maybe a little of each? Bear what pain you can to quell the awful music, then deal with Radio Lucy when the pain is so bad. Perhaps being able to have a choice, some control. . . Well, it may help a little.

    Incidentally, have you ever tried hydrocodone in place of codeine? They’re similar in many respects, and I’ve done hydrocodone pretty frequently for my migraines and sciatica, for a decade and a half and no music in my ears. *knock wood*

    Not to give unsolicited advice, but, well, you know.

    Sending lots and lots of love to you. ♡♡♡

    1. Hey Ruby, I knew you’d appreciate the awfulness of the choice. Most people I have found just don’t get it, and actually I’m glad for them that they don’t but it is nice to be understood.

      The balance between pain and Radio Lucy ( I like that a lot!) is what I am working on at the moment. There’s no real system, just reaching the eventual breaking point.

      I haven’t tried hyrocodone and am not sure whether it is one I can take. The list of options is tight but I will do some home work and discuss it with my doctor.

      And as for unsolicited advice, your’s is always welcome. Love you lots♥♥♥

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