Sleeping Positions... Everything Makes It Worse!

[Alphasignal5]

So I've had the T raging for the last few days (see my story in the introduction section, SSHL induced) and I'm finding it increasingly hard to sleep.
It seems to be getting louder and I can't find I posture lying down that doesn't make it unbearable. If I lie with my head elevated like I'm doing now it's bearable, but if I lie fully flat with my head to the left, middle or right it gets way worse.
Sometimes I manager to drift off for 15 minutes but then get woken by the noise, neck pain, often a tightness of the jaw and, most oddly, numb arms / legs / face.
Does anyone else struggle in this way?

Rob x

 

[Chelles]

What caused your tinnitus? It seems like your neck muscles might contribute to your tinnitus, perhaps you can benefit from PT or a chiropractor. Are you using anything to help you sleep at night like a masker?

 

[Alphasignal5]

Hey Chelles, unfortunately it was caused by Sudden Sensorineural Hearing Loss so is associated with nerve damage rather than spinal misalignment. I wish it were that simple! Having said that perhaps chiropody is worth a try.
I'm no doctor but the fact that I'm going numb while I sleep seems quite serious to me.

 

[Chelles]

What goes numb when you sleep?

 

[svintegrity]

Rob x, I have the same struggle. Not only can I not find a sleeping position that works, if I do finally doze off I am awakened 15-30 minutes later by the loud noise. I also get numbness and tingling in my legs and hands, along with severe neck pain. I have tried every treatment from acupuncture to chiropractics, to PT, to maskers, to Neuromonics, you name it. Everything made it worse. I went to a Neurosciences Institute and they ordered a very arcane MRI, so rare that the imaging department didn't know how to schedule it. It turns out that I have an artery compressing my eighth cranial nerve, which consists of the auditory and vestibular nerves.

 

[Chelles]

@svintegrity what's the treatment for that?

 

[linearb]

I don't know exactly what you should do, but wanted to say that as much as my T drives me bonkers sometimes, I now sleep pretty solidly, and lately have even been falling asleep without a fan/masker/etc... so, whatever happens with your T, your sleep will come back.

I think that for me, and for many people with T, the anxiety is actually what causes insomnia, and not the noise itself. Hell, I used to live ~0.5 miles from train tracks, and after a few months I didn't even notice the freight trains pounding by at 3AM, let alone wake up from it.

 

[svintegrity]

Skull-based surgery. I am scheduled in two weeks. It will be a co-surgeon case. I am actually looking forward to it, because I have been suffering for 14 months. I was told time after time that I just needed to learn to live with it. It took trying every recommended treatment and persistence over 14 months to find out what was wrong. In my case the artery enters into my inner ear, and I won't find out what exactly they are going to do until my pre-op appointment next week.

 

[Alphasignal5]

@svintegrity That's very interesting, I'm glad they've found the route of your problems. What caused your T in the first place?

 

[Fiore]

So I've had the T raging for the last few days (see my story in the introduction section, SSHL induced) and I'm finding it increasingly hard to sleep.
It seems to be getting louder and I can't find I posture lying down that doesn't make it unbearable. If I lie with my head elevated like I'm doing now it's bearable, but if I lie fully flat with my head to the left, middle or right it gets way worse.
Sometimes I manager to drift off for 15 minutes but then get woken by the noise, neck pain, often a tightness of the jaw and, most oddly, numb arms / legs / face.
Does anyone else struggle in this way?

Rob x

I have a question if its SSHL induced what nerves were damaged? Is there anyway you can get treatment for your nerves to heal. I do read that nerves heal over time. and since i see your onset of 2/2015 did you try corticosteroids to avoid further damage? You should if you haven't. I notice that i still with no T sound and can on some days wake up to silence when i sleep on my back and a pillow elevating my head.

 

[Alphasignal5]

I don't know exactly which nerve was damaged, presumably the main hearing nerve in the ear. It gets pinched under pressure from inflammation and dies if not treated quickly. I took steroids for 6 days after I saw the ENT but they got to me too late. The really bad T actually started when I was on day 5 of the steroid treatment, then they told me to stop. I do wonder if it's the prednisolone that's caused the T rather than the hearing damage, but I guess there's no way of knowing.
I'm taking B vitamins and lipoic acid every day as apparently these are good for nerves. Probably in vain though.

 

[Chelles]

@Alphasignal5 have you tried magnesium? It's good for nerves n muscles.

 

[svintegrity]

Alphasignal5 The artery pressing on the nerve is now what is thought to have caused the T in the first place. But five ENTs and three audiologists dismissed it. The neuro-otologist wanted to take a closer look and the neuro-radiologist an even closer look. It shows that even when you are told that you have to learn to live with this, that there is always a solution out there. The message is never give up!

 

[linearb]

What does yours sound like, @svintegrity ? Is it pulsitile, or constant? High-pitched or low pitched?

 

[Alphasignal5]

@svintegrity Can you tell us exactly what kind of scan you had? I doubt it'll help me but if others can ask for it, it might help them.

 

[Matt01]

I don't know exactly which nerve was damaged, presumably the main hearing nerve in the ear. It gets pinched under pressure from inflammation and dies if not treated quickly. I took steroids for 6 days after I saw the ENT but they got to me too late. The really bad T actually started when I was on day 5 of the steroid treatment, then they told me to stop. I do wonder if it's the prednisolone that's caused the T rather than the hearing damage, but I guess there's no way of knowing.
I'm taking B vitamins and lipoic acid every day as apparently these are good for nerves. Probably in vain though.

Am trying not to take too many supplements, but I think a small magnesium supplement is a good idea. It's just like eating loads of dark green veg, good for nerves and will not do you any harm at all with a sensible dosage.

 

[svintegrity]

@Alphasignal5 The scan was an MRI of the auditory canal without contrast, limited. The technique was Axial T2 FIESTA through the skull base and IAC. Multi planar reformatted images. If this information can help someone else I would be ecstatic. My heart goes out to every single person on this forum!

 

[linearb]

@Alphasignal5 The scan was an MRI of the auditory canal without contrast, limited. The technique was Axial T2 FIESTA through the skull base and IAC. Multi planar reformatted images. If this information can help someone else I would be ecstatic. My heart goes out to every single person on this forum!

thanks for the clarification! I had an IAC MRI with contrast that showed nothing unusual, so I guess this isn't my problem!

 

[svintegrity]

@linearb My T sounded like my entire head was full of high-pitched noise. Then it went to a high-pitched screaming pulse. I had two audiograms and an MRI and MRA, only to be told that I would just have to learn to live with this. I tried every treatment out there, from corticosteroids to masking hearing aids to acupuncture to TMJ treatments to chiropractics to physical therapy to intra oral massage to cranial sacral therapy to trigger point injections to Neuromonics. You name it. Every single treatment made it worse and turned it into what I called a screaming 20. Neuromonics gave me high pitched screeches in both ears, when my T was originally unilateral. And like @Alphasignal5 I started experiencing numbness and an extremely sore neck. Every ENT or other specialist couldn't get me out of their office quickly enough. I just want people to know that there is an answer out there for them. It is just a matter of finding it, and not giving up! You need to keep looking for that needle in the haystack.

 

[linearb]

@svintegrity , wait... so the MRI was what found the vascular loop, but even after the MRI you were told that you'd just have to learn to live with it? Did someone else have to review it, or what?

I'm pretty sure that my MRI report says, literally, "no vascular loops".

 

[svintegrity]

@linerb Yes. The vascular loop was found over a year ago by both an MRI and an MRA. And yes, I was told by every specialist I saw that it was too far in my brain for surgery, and that I would just have to learn to live with it. Even the latest neuro-otologist that I saw six weeks ago told me he didn't think it was the vascular loop, and that I would just have to learn to live with it. But the neuro-radiologist wanted a closer look at the vascular loop and ordered the specialized MRI that was focussed on a smaller area and sectioned the area at a different angle. It was my needle in the haystack. If yours literally says no vascular loop, you will find something that works for you. Just keep looking and never give up. Is your T constant or pulsatile? What does it sound like?

 

[svintegrity]

@linearb I misspelled your name above. Sorry about that. Hoping this correction gets through to you.

 

[linearb]

It sounds like the noise an old CRT monitor makes. I'm doing okay with this at the moment. My main fear is it getting worse to the point that I can't mask it easily.

 

[svintegrity]

@linearb I don't know what the sweep frequency of an old CRT monitor is, but the sweep frequency of an old analogue TV was 15,750 hz, which is right at the fringe of human hearing. I assume what you are hearing is an extremely high pitch? I am glad you are doing okay at the moment, but I certainly understand your fear of it getting worse. My T was never maskable, and has gotten considerably worse over the year, because of various treatments-- especially from Neuromonics. But many people have T at a steady state. It sounds like you may be in the latter category. What do you use to mask it?

 

[linearb]

@svintegrity, mostly nature sounds, recordings of streams, cricket noises, etc. Sometimes if I am listening to regular music and don't want to hear the T between songs, I'll put on very quiet white noise in the background using simplynoise.com.

 

[svintegrity]

@linearb I used to listen to many of those sounds, but my hyperacusis has gotten worse from Neuromonics, so crickets, etc., make my T go up. I will try simplynoise.com. Thanks!

 

[rtwombly]

Hey Chelles, unfortunately it was caused by Sudden Sensorineural Hearing Loss so is associated with nerve damage rather than spinal misalignment. I wish it were that simple! Having said that perhaps chiropody is worth a try.
I'm no doctor but the fact that I'm going numb while I sleep seems quite serious to me.

The numbness could be an indication of thoracic outlet syndrome. Definitely see a chiropractor. They vary greatly in competence, so you might want to ask around. I recommend a speciality called SOTO chiropractic. If there is a qualified practitioner within 50 miles, it's worth the trip.

 

[Thongjy]

@svintegrity That's very interesting, I'm glad they've found the route of your problems. What caused your T in the first place?

How are you sure that your T is due to SSHL?

 

[Alphasignal5]

How are you sure that your T is due to SSHL?

The low frequency ringing started after I lost my low frequency hearing in the damaged ear, albeit a couple of weeks after the initial damage, but seems to make sense.
Unfortunately I've now got high frequency T in my left ear as well, which was really loud this morning but has quietened down a bit now.
I don't know what's causing this and am terrified it's a sign that damage is somehow happening to my good ear.

 

[svintegrity]

@Alphasignal5 what caused your SSHL in the first place?