Lurker No More :)

[Twitch]

Hi folks,

I finally mustered up the courage to join this wonderful community which has helped me greatly over these past months. Here's my story. I 'developed' non-pulsatile tinnitus last November. I started noticing a hissing sound in my head this one evening not long after having a spasm in my neck. This is the only incident I can attribute my tinnitus onset to and occurred no longer than 30 minutes before I started noticing this hissing.

The first night I didn't pay much attention and I slept as normal but the morning after, I still had this hissing and over the days, I became worried and couldn't sleep because of this sound which I came to find out was tinnitus. As the days progressed and as I focused more on this foreign sound, I became more anxious and my perception of my tinnitus 4 days after onset was that it was tonal, loud and was coming from my left ear only.

I saw an ENT towards the end of November who sent me for an MRI of my ear canal. I was prescribed Amoxicillin/Ibuprofen in case there was an infection/inflammation as my, especially head behind my left ear was feeling tender at the time. I got lucky and accepted a cancellation appointment 2 days after seeing the ENT. Thankfully the MRI ruled out an AN tumor and I was told by the ENT I would pretty much have to live with this tinnitus which at the time was heartbreaking to hear.

Over the months and after scouring over this forum and online, I wouldn't say I've habituated and while still annoying having this sound constantly in my head, coming back to this forum, reading peoples experiences, possible treatments and seeing the increase in trials and companies working towards treatment/cure for T, it gives me belief that one day all us T sufferers will all be cured of this evil condition.

My T during the day is masked by sounds around me at work where I don't notice it as much. I'm generally more aware of it when I am at home, in the quiet or lying down to get to sleep. It's annoyance is usually around 4-5/10 and its origin in my head but when I plug my right ear I also hear it. Most of the times its hissing or whooshing but sometimes it does get loud.

I had an MRI of my head a few days ago after persisting with my ENT who said I should have had an MRI of my head when I had one of my ear canal back in December!! I'm also thinking of going down the private route of getting an MRA done of my head and neck if the MRI comes back clear just for removal of doubt in my mind of a more serious underlying problem.

I just want to thank all the regulars on this forum such as @Kaelon @Dr. Nagler @Danny Boy @erik just to name a few. I'm sure all lurkers appreciate all bits of advice and experiences everyone here posts to hopefully rid them of their T and I hope in my lifetime that there will be a cure for all of us to hear silence once again.

Peace

 

[gary]

Hi folks,

I finally mustered up the courage to join this wonderful community which has helped me greatly over these past months. Here's my story. I 'developed' non-pulsatile tinnitus last November. I started noticing a hissing sound in my head this one evening not long after having a spasm in my neck. This is the only incident I can attribute my tinnitus onset to and occurred no longer than 30 minutes before I started noticing this hissing.

The first night I didn't pay much attention and I slept as normal but the morning after, I still had this hissing and over the days, I became worried and couldn't sleep because of this sound which I came to find out was tinnitus. As the days progressed and as I focused more on this foreign sound, I became more anxious and my perception of my tinnitus 4 days after onset was that it was tonal, loud and was coming from my left ear only.

I saw an ENT towards the end of November who sent me for an MRI of my ear canal. I was prescribed Amoxicillin/Ibuprofen in case there was an infection/inflammation as my, especially head behind my left ear was feeling tender at the time. I got lucky and accepted a cancellation appointment 2 days after seeing the ENT. Thankfully the MRI ruled out an AN tumor and I was told by the ENT I would pretty much have to live with this tinnitus which at the time was heartbreaking to hear.

Over the months and after scouring over this forum and online, I wouldn't say I've habituated and while still annoying having this sound constantly in my head, coming back to this forum, reading peoples experiences, possible treatments and seeing the increase in trials and companies working towards treatment/cure for T, it gives me belief that one day all us T sufferers will all be cured of this evil condition.

My T during the day is masked by sounds around me at work where I don't notice it as much. I'm generally more aware of it when I am at home, in the quiet or lying down to get to sleep. It's annoyance is usually around 4-5/10 and its origin in my head but when I plug my right ear I also hear it. Most of the times its hissing or whooshing but sometimes it does get loud.

I had an MRI of my head a few days ago after persisting with my ENT who said I should have had an MRI of my head when I had one of my ear canal back in December!! I'm also thinking of going down the private route of getting an MRA done of my head and neck if the MRI comes back clear just for removal of doubt in my mind of a more serious underlying problem.

I just want to thank all the regulars on this forum such as @Kaelon @Dr. Nagler @Danny Boy @erik just to name a few. I'm sure all lurkers appreciate all bits of advice and experiences everyone here posts to hopefully rid them of their T and I hope in my lifetime that there will be a cure for all of us to hear silence once again.

Peace

Hi Twitch, glad you joined. My T right side only. I just had an MRA & COW T is on right but MRA showed 70% blockage of my left carotid right side was 30% & COW (circle of willis) showed a dark shadow. Dr. said dark shadow could be there from birth or from when I had open heart surgery and my blood pressure dropped. Going to have another MRA & COW done in three months to see if there are any changes. As for any symptoms like dizziness, tripping, numbness etc nothing at all, I feel fine. The dark shodow form the COW usually means a artery has collapsed and had no blood going to it. Not trying to scare you, I am 68 with many other medical issues, so I am glad ENT ordered these tests, especially the MRA. He will continue to monitor it. They do not do anything, other then prescribe blood thinners until it is at 90% blockage.

I am already on blood thinners since I have cardiac issues, so for now I am good to go!

 

[Twitch]

Hi Gary, sorry to hear about your cartoid artery blockage and I hope things improve for you. When I first saw an ENT, he ordered a MRI of my ear canal only and I had a hearing test at the time which showed no hearing loss and a tympanogram that was normal.

The second ENT I saw booked the most recent MRI scan of my head which I've had in the last week and told me that I should have this done as routine the first time around. The results aren't in for another couple of weeks but he was quite blunt in that if the MRI was unremarkable, there was nothing else that could he could offer other than refer me for TRT or CBT.

I'm going to wait out for the MRI results and then might go down the route of getting a private referral for a MRA of my head and neck and pay for this myself.

 

[Kaelon]

Hi @Twitch!

Welcome to Tinnitus Talk, and thanks for the shout-out!

Firstly, I'll say that I think your etiology is pretty clear and it's not just a coincidence that you suffered neck/back spasms prior to getting your tinnitus. I'm going to assume that the tinnitus is bilateral and, sometimes, almost sounds like it's coming from "behind" you, or inside your head, right? If so, you and I have a very similar etiology for our tinnitus. In my case, TMJ is suspected, but by and large, when the head, neck, jaw, and back muscles start to spasm, the entire system starts to go haywire; my neurologist confirmed this was my case just this past week and identified that wherever the spasm is originating, it's emanating up the back of my neck, at the top of my head, and along my jaw right over my ears.

My belief is that our shared situation - to which I have, also, been largely habituating - is caused first by stress, which is expressed through poor sleep and terrible posture. This is a common set of circumstances for those of us suffering from inflammation-driven tinnitus, and also explains why when we lay down, sit down, etc., our tinnitus becomes more pronounced (and not only because it's quiet). If your tinnitus is amplified or changes substantially in any way when you turn your head, strain your neck, clench your jaws, or arch your back, this is generally the "smoking gun" proof that neuromuscular inflammation is the cause.

Unfortunately, it only gets trickier from there. Because while there is consensus about the underlying cause -- and it usually takes several months for all parties to be in pure alignment, especially patients with their ENTs, neurologists, dentists, and physical therapists -- the cure is elusive and the only reliable cure involves physical therapy to address the underlying tension or dysfunction that is causing the muscle spasm or dislocation. For TMJ, this usually means wearing an orthotic device for at least 4 weeks to see if clenching or grinding is the aggravating factor. For neck/back/head neuromuscular spasms, it's a bit trickier -- I have found my chiropractor is pretty helpful in targeting and treating these areas, and I notice substantial improvements over time with her.

Back in January, I was able to confirm that inflammation was absolutely linked with my tinnitus when I went on a 15-day course of prednisone and my tinnitus was completely silenced in one ear, and almost totally silenced in the other. The effect lasted for days but, of course, as the prednisone was tapered down less than 40 mg, the tinnitus returned. I write a lot about prednisone elsewhere, but I'm on the search for other anti-inflammatory treatments, including herbs, and I'm seeing some results from Cat's Claw (u. tormentosa) but I've only been taking this for a few days; other forum-goers here report being cured by this.

In sum, regardless whether your tinnitus is caused (as I suspect) by some sort of neuromuscular conflict, or if it can be attributed to another set of causes, you're in welcome company. Please keep us posted on how it's going!

Kaelon

 

[gary]

Hi Gary, sorry to hear about your cartoid artery blockage and I hope things improve for you. When I first saw an ENT, he ordered a MRI of my ear canal only and I had a hearing test at the time which showed no hearing loss and a tympanogram that was normal.

The second ENT I saw booked the most recent MRI scan of my head which I've had in the last week and told me that I should have this done as routine the first time around. The results aren't in for another couple of weeks but he was quite blunt in that if the MRI was unremarkable, there was nothing else that could he could offer other than refer me for TRT or CBT.

I'm going to wait out for the MRI results and then might go down the route of getting a private referral for a MRA of my head and neck and pay for this myself.

Hi Twitch, well an ultra sound was my first step, they are much cheaper than an MRA. Usually be fore doing a MRA they do a ultra sound, in my case the ultra sound showed a blockage of 59% to 79% on the left side and 0% to 39% on the right side, which is normal.The ultra's are not all that accurate, but enough to get a rough idea.

My ENT said if both sides were 0% to 39% he would not have ordered a MRA, but seeing the 59%-79% he wanted a more exact number, and it came up 70% doing a MRA, right in the middle of what the ultra showed. You could ask you're Dr for a ultra sound, Dr.s are more likely to give you one. I had my first ultra sound done right in his office, like I said way cheaper than a MRA. No need to spend $1000 for nothing. I would the ultra sound first. I do understand you're concern.

Also Kaelon makes a lot of sense in his post.

 

[Twitch]

Hey @Kaelon, thanks for the welcome and I love going through your long posts and appreciate the effort you put into them, not just here but all over the forum!

The only real trauma I could put my T down to is the spasm I had in my neck that evening. Prior to this I was doing daily nasal rinsing and my left nostril that morning was blocked up and I did force blow but I've done this accidentally in the past without any negative effects and if this was the cause for my T, I think I would've noticed it earlier that day. I could probably count the total number of neck spasms on one hand over the last 2-3 years so it's not a common occurrence and further complicates my etiology but I can vouch my posture is bad.

I've not had any call back or results from my MRI scan of the head so I presume that's clear. The sound itself is a constant hiss/whoosh in the 8khz range and seems to be coming from inside my head and not my ears. I sense it being left sided which is the same side I had the spasm and had to keep my head in a certain awkward position for 20-30 seconds just to relieve myself of the pain. I think this 'may' have caused damage or compressed a nerve which is why I wanted to go down the MRA route.

I've also pondered about the AM101 trial. Auris are still recruiting people in the 3-6 month onset of tinnitus but I'm a little hesitant going down this route, because as from what I perceive, the tinnitus doesn't seem to be from within my ears.

@gary thanks for the advice. I think I would prefer an MRA as ultrasound wouldn't be 100%. In the UK a private MRA costs in the region of £300 for 1 area and I believe if I recall correctly each additional area is £200 extra and the contrast injection is about £40 so in total I would be looking at a total scan cost of £550 / $800. If I were to get my GP to refer me to an NHS neurologist, I'd have to wait until mid May for an appointment and then another 6 weeks till July for an MRA if the neurologist agreed to this and the another 2 weeks for the results so a potential 3.5 month wait. Compare this to the 2/3 day wait time for a private scan and perhaps a week for the report to get back to my GP.

I've reached the point where I want to rule out a serious underlying mechanical problem and if that is ruled out, at least then I can try to habituate and try alternative treatments such as trials for AM101 and/or AUT0003

 

[gary]

You are most welcome twitch. I think you may find this link helpful, as to whether you really need an MRA. I am not trying to talk you out of it, but just trying to enlighten you and just perhaps save you some money. Have a look.

The Mayo clinic is one of the most respected health institutions in the US

http://www.mayoclinic.org/diseases-conditions/carotid-artery-disease/basics/symptoms/con-20030206