[MAT52]

Hi All - trying hard not to panic as I'm away up on my old island home where small local hospital isn't good -as I discovered last year! So I posted recently about Tinnitus and I'm doing as MrsD suggested and taking Taurine -day 4 on 500mgs. So far nothing has changed but I'll keep trying.

Meanwhile I'm feeling increasingly terrible - bouts of nausea mixed with chest tightness, weakness and ache in arms, bone pain in legs, gastritis, breathlessness and a "feeling of impending doom", usually a side effect of certain drugs such as Tramadol for me. Not on anything new at all apart from Taurine and this started before taking it.

The tinnitus is raging and I have become totally oversensitive to certain sounds such as children shouting and clattering of plates and places with echo sound effects or certain sounds on tv. I've never been good with loud noises but today it all became impossibly aggravating and I ended up with hands over ears when eating out with my husband. Even the canned music in the supermarket made me feel sick. I'm totally fatigued so end up back in bed all the time resting my arms on soft pillows. My mouth and nose are full of horrible parasthesia and tightness even more than usual.

So what is happening to me? - can anyone advise if this sounds neurological or vestibular or is it just some kind of anxiety that I'm unaware of?

[pinkynose]

Mat I am sorry you are going through this. I wish I had an answer but hopefully there will be some out there with ideas. I will be rooting for you.
carol

[Healthgirl]

Originally Posted by MAT52

Hi All - trying hard not to panic as I'm away up on my old island home where small local hospital isn't good -as I discovered last year! So I posted recently about Tinnitus and I'm doing as MrsD suggested and taking Taurine -day 4 on 500mgs. So far nothing has changed but I'll keep trying.

Meanwhile I'm feeling increasingly terrible - bouts of nausea mixed with chest tightness, weakness and ache in arms, bone pain in legs, gastritis, breathlessness and a "feeling of impending doom", usually a side effect of certain drugs such as Tramadol for me. Not on anything new at all apart from Taurine and this started before taking it.

The tinnitus is raging and I have become totally oversensitive to certain sounds such as children shouting and clattering of plates and places with echo sound effects or certain sounds on tv. I've never been good with loud noises but today it all became impossibly aggravating and I ended up with hands over ears when eating out with my husband. Even the canned music in the supermarket made me feel sick. I'm totally fatigued so end up back in bed all the time resting my arms on soft pillows. My mouth and nose are full of horrible parasthesia and tightness even more than usual.

So what is happening to me? - can anyone advise if this sounds neurological or vestibular or is it just some kind of anxiety that I'm unaware of?

For me these symptoms are all part of my neuropathy. Usually is worse when my gastroparesis is worse.

Are you constipated? Also, do you have a muscle relaxer? I get spasms in my ears and the nerve stuff in my face is terrible when my traps are tight. Also it helps with the vertigo feeling.

Do you have low bp? Make sure you are having a lot of salt to help hypovolemia. Sometimes I drink pedialyte.
All those little nerves in the ears can cause terrible vestibular symtoms.

You could also try lying flat on your back on the bed and let your head hand slightly off toward the floor. It might help with the dizziness.

I know how all of this feels. IT is absolutely terrible.

[madisongrrl]

Originally Posted by MAT52

The tinnitus is raging and I have become totally oversensitive to certain sounds such as children shouting and clattering of plates and places with echo sound effects or certain sounds on tv. I've never been good with loud noises but today it all became impossibly aggravating and I ended up with hands over ears when eating out with my husband. Even the canned music in the supermarket made me feel sick. I'm totally fatigued so end up back in bed all the time resting my arms on soft pillows. My mouth and nose are full of horrible parasthesia and tightness even more than usual.

So what is happening to me? - can anyone advise if this sounds neurological or vestibular or is it just some kind of anxiety that I'm unaware of?

I had tinnitus for a year and suffered from hyperacusis for a few days at the peak of my miserable symptoms. It sounded like someone was shouting in left ear with a megaphone. Mine is both neurological and vestibular. Some days when I walk, it feels like the floor is a sponge.

I couldn't go out into crowed spaces, I couldn't watch anything intense or loud on TV, and I also purchased a white noise box to use while I was sleeping. Do your best to try an ignore it. If you fixate on it, the symptoms will seem worse. Easier said that done, I know, because living in this situation is incredibly distressing.

Get into an ENT for an assessment and hopefully they refer you to a vestibular PT or even offer some medications to help this situation.

[en bloc]

Have you requested the ENT appt yet? If not you need to get on the books for that (since it will likely take a while to get the appt).

Is there any sounds that are soothing to you? Like nature sounds (ocean, stream, birds, etc). If so, get a CD of whatever you like (they make all of these) and put some earphones on and listen. The best way to treat hyperacusis is sound therapy. They have specific sound tapes for people with this condition, i believe. Ask your PCP if she/he has any ideas to help you until you can get into the ENT.

Sounds as if you could use some soothing sounds/music just for relaxation purposes, at this stage. Try to start focusing on ways to relax...warm (not hot) bath, quiet walk in a park, massage (only if it doesn't increase pain as it does for some with PN/SFN), etc, etc. Find things to take your mind off how you feel...movies, reading (a book, not medical related stuff online), crafts/hobbies, etc.

[MAT52]

Originally Posted by en bloc

Have you requested the ENT appt yet? If not you need to get on the books for that (since it will likely take a while to get the appt).

Is there any sounds that are soothing to you? Like nature sounds (ocean, stream, birds, etc). If so, get a CD of whatever you like (they make all of these) and put some earphones on and listen. The best way to treat hyperacusis is sound therapy. They have specific sound tapes for people with this condition, i believe. Ask your PCP if she/he has any ideas to help you until you can get into the ENT.

Sounds as if you could use some soothing sounds/music just for relaxation purposes, at this stage. Try to start focusing on ways to relax...warm (not hot) bath, quiet walk in a park, massage (only if it doesn't increase pain as it does for some with PN/SFN), etc, etc. Find things to take your mind off how you feel...movies, reading (a book, not medical related stuff online), crafts/hobbies, etc.

Thanks Enbloc. I'm going to do as you suggest because I'm encountering terrible insomnia from a flare of very painful SFN and other stuff too. Yes GP has now referred me to ENT but it will probably take a while to be seen -especially as I'm not living anywhere near yet -still up in island in far north for winter until our wee house is habitable.

I have worked out that the sense of impending doom is from another drug intolerance. I've been taking an anti-imflamnatory called Nefapam for the very severe SFN pain. This was a drug that my last rheum prescribed for my pain. It does work to some extent but comes with a sense of doom and horrible gastritis!

[MAT52]

Originally Posted by madisongrrl

I had tinnitus for a year and suffered from hyperacusis for a few days at the peak of my miserable symptoms. It sounded like someone was shouting in left ear with a megaphone. Mine is both neurological and vestibular. Some days when I walk, it feels like the floor is a sponge.

I couldn't go out into crowed spaces, I couldn't watch anything intense or loud on TV, and I also purchased a white noise box to use while I was sleeping. Do your best to try an ignore it. If you fixate on it, the symptoms will seem worse. Easier said that done, I know, because living in this situation is incredibly distressing.

Get into an ENT for an assessment and hopefully they refer you to a vestibular PT or even offer some medications to help this situation.

Sorry I never received e-alerts for these last comments so only just found them!

I spoke to me GP on the phone and and has referred me to ENT now. The tinnitus does fade to minimal overnight but returns in the mornings once I'm awake, like the heating coming on. Hopefully once I see an ENT specialist and have hearing tests I'll know more. Thanks very much for describing your horrid experience of all this - it helps knowing that I'm not entirely on my own with it.