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BenzoMom

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Posts: 5
Reply with quote  #1 
I am in the midst of a severe benzodiazepine withdrawal storm (hell on earth) with many symptoms, some nerve symptoms.  I noticed my ears becoming sensitive to noises a couple of months ago, while I was on a much lower dose of clonazepam than previously (long story, bad story).  Tinnitus came on about 6 weeks ago.  I started resuming my taper of the medication (with a likely 1-2 years remaining) a month ago; however, this past week, my noise sensitivity has gone through the roof.  Every day, it is getting worse.  Yesterday, normal voices were hurting my ears and had me in tears.  This morning, the flushing toilet is hurting.  The past 3-4 days, my eardrums are burning and it feels like hot knives stabbing at my ears.  

Previous to last week, the noise sensitivity would come and go but just this last week, it's becoming more and more unbearable.  And I mean UNBEARABLE - I can even hear sounds a lot with wax earplugs in or noise cancelling headphones.  I assume that it's mostly due to the medication withdrawal but I don't know if there's more to it and I don't know what to do.  I guess I need to get into see my ENT sooner rather than later.  For about a week or two prior to this, I had been putting a little bit of olive oil in my ears because my ears felt dry/itchy.  But I quit doing this once I noticed even more sensitivity.  I'm guessing that olive oil couldn't cause damage, unless it just stripped all of the wax from my ears and that's contributing.  I've been assuming that it's likely the medication w/d for the most part but maybe something else could be contributing too?  Earplugs hurt my ears even more and of course, with the tinnitus, it's all the worse to wear earplugs.  

What are some of the other causes of hyperacusis?  What else can I do to help this right now?  I do listen to a white noise machine next to my bed at night and perhaps it's been a little too loud, though I do and always have worn earplugs at night.  I just don't know. 

I just quit my job.  I have 7, yes 7, kids at home with me at all times.  I'm going to lose it as every morning, I am now waking up with this getting WORSE every day.  HELP!!  What do I do here?  What tests do I ask for to ensure this isn't just w/d from the medication.  I'm sensitive to all medications now, and supplements, and am limited with what I can take because of the clonazepam interaction.  

Sorry about my desperation but I am just that - feeling desperate.  Had NO idea that even "normal", not loud sounds, could cause such pain - I've been crying buckets the past 3 days as this is getting intensely worse.


Update:  I just posted this and got an appt with my ENTs office and the audiologist.  What should I ask for/request?  I know this is at least in part due to the WD.  I'm afraid of undergoing any sort of loud sound testing......normal voices are intensely loud right now.......this has gone south rather quickly.....a week ago, I was giving my kids haircuts and vacuuming.  

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Mother of 7 beautiful kids, trying to taper off clonazepam.  In benzo w/d torture.
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Margy

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Reply with quote  #2 
Hi. You are in a bad situation that is very complicated, and I sympathize very much.

I have had hyperacusis for five years, have read everything I can about the subject, and I’m still trying to figure it all out.

What I can say for sure is, please Don’t continue to taper off from your benzodiazepine, because tapering off makes these symptoms worse. Keep the benzodiazepine dosage steady while you wait for some steady ground in your symptoms and your life. It is very possible that the tapering off set up a sensitivity that might go away if you just try to make everything as steady and comfortable as you can.

It’s probably best not to rush to ENTs and audiologists right now. Wait till the benzodiazepine levels off and stays steady, and you feel better.

This is just my opinion as someone who has learned a lot of caution.
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BenzoMom

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Reply with quote  #3 
Thank you, Margy. Yes, it is very complicated and torturous. I'm sorry you are suffering from this.  Unfortunately, the hyperacusis (mild to moderate) came on as I was holding my dose too long, as did a whole host of symptoms.  It's called "tolerance withdrawal", where basically your body wants more and more of the medication because it's no longer effective at that dose and your body has downregulated the GABA receptors. This is what makes benzos so dangerous and addictive.  

I have many other nerve related symptoms that are difficult so this is just one but at the moment, this is the grand-daddy symptom that is causing me the worst pain right now and keeping me, this week, from tapering further.  

What I am now learning about the hyperacusis, however, is that I should have been more cautious about protecting my ears.  I had been told to "distract", etc, as some of these symptoms are just w/d. But I did not know that I should not go to Mass where there's an organ playing (even though I set outside or wore earplugs) or that I should wear earplugs while using the vaccum cleaner, etc.  So now, I have learned the hard way that I have possibly done more damage to my ears, thinking this was "just withdrawal".  I'm kind of angry about it and I won't go into details.  This level of pain and sensitivity that I've been feeling this week is too much. Previously, the hyperacusis was more mild if you can call it that - annoyance at dishes clanking, dog barking, kids being a little rambunctious.  

Unfortunately......I have no choice but to continue to taper the medication soon. I'm holding for a couple of week, in hopes that this will settle. But the doctors are basically forcing this on me.  Going up on dose, if I want my life back long term, is not an option and just sets you up for more tolerance.  If you hold longer than 2-3 weeks at the same dose, then more tolerance can set in.  The only and best way, unfortunately, is to continue to taper at a slow rate.  

I need to see the ENT and audiologist.  Thanks to these sites, I now am learning that I don't necessarily want a bunch of hearing tests that could make things worse - I already know what I have.  But I do want the doctor to check my ears and ensure there is nothing else going on since there is pain too.  And I would like to ask the audiologist about more practical solutions, perhaps custom ear plugs or something? I don't know.  This is horrendous.

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Mother of 7 beautiful kids, trying to taper off clonazepam.  In benzo w/d torture.
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phacker

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Posts: 133
Reply with quote  #4 
I am really sorry that you are going though a difficult time  with H & T.  I am going to give you what I do when I have a set back with H & T.  It may help or not help. 

First, go see an ENT to be sure that you do not have something else going on with your ears that may be contributing to your H and T.  The ENT most likely will know little about H, so do not expect too much. Do not let an audiologist that is not certified in TRT do sound testing on your ears. If you do have sound testing done, take control and only do what you can handle. 

Embrace all the sounds that do not give you pain, fullness or fluttering, but do not over do it as your ears need some rest to recover. 

Try to avoid sounds that cause pain, fullness, or fluttering, ect. so that, your ears can rest and recover.  

If you can not avoid the loud sound environments, protect your ears with ear plugs, ear muffs, etc. Do not over protect with the use of the sound protection as your brain and ears still need to hear sound as it is part of your bodies defense system. 

Try taking one 250 mg of Magnesium daily as there have been some studies that show Magnesium helps with ear recovery from loud sound as it increased blood flow to the ears. Try taking hot baths twice a day to get blood flow into your ears. 

Try taking one 5 mg Melatonin before bed to see if it helps your T.  If you do not notice any improvement in 3 or 4 days, it is most likely not going to help. If you get any T improvement, you should notice it in the morning with you wake.

For the ear pain try a heating pad on your ears as you may get some temp relief and it helps with blood flow to the ears. 

My regiment is directed at getting blood flow to the ears and I do seem to get back to my base line of H and T faster. 

I wish you the best 
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BenzoMom

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Posts: 5
Reply with quote  #5 
Thank you very much for your kindness.  This is nothing like I ever imagined - the whole thing.  But the severe hyperacusis also and it's gotten progressively worse.  I saw the ENT yesterday and everything looked good as I imagined it would - he was a young doc and had not seen anyone like me. The audiologist was young but good and said that she has only encountered two severe like me before, one of which was helped by WNGs drowning out the noise but in my case, I'm finding normal noises painful now, which was not the case only 10 days ago.  They have referred me to an audiologist who is supposed to be specialized in hyperacusis, tinnitus and misophonia.

Unfortunately, living in a house with children, it's not easy to predict when there will be sounds.  I ordered a bark collar for the dog and am ordering things to keep the chairs from making noises on the wood floors - that sort of things.  But bags rustling, children talking/singing, etc, I cannot change.  I notice much more pain in the morning from normal sounds.  Even a shush from another room made me startle and cringe.  The toilet flushing.  Normal voices.  This again, is much more severe than it was just days ago so I'm distraught.  

Thank you for your suggestions - unfortunately, magnesium impacts the GABA receptors and so I cannot take and hot baths make my skin burn.  I'm really up a creek.  But I will try the warm compresses.  

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Mother of 7 beautiful kids, trying to taper off clonazepam.  In benzo w/d torture.
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