Somatosensory Pulsatile Tinnitus Syndrome

Thank you for this info. I have this debilitating condition since June 2014. Are you a member of the facebook group called pulsatile tinnitus?

 

kaelon, Thanks. I read through you post and blog and feel I've got Somatosensory Pulsatile Tinnitus Syndrome.

I'm getting TMJ treatment but where do I go to get check and treatment for this? What type of
anti-inflammatories and PT do they use?

 

where is he located?

 

I just found this site while googling Pulsatile Tinnitus. Interesting discussion, and I'm pretty sure I know how I got mine. I just started hearing a very faint swooshing in my left ear that sounds like my pulse. It's quite subtle, hard to hear in all but the quietest room. For the last week or so I have manipulating my head, turning it as far as I can to the left and and then to the right, in order to increase its rang of motion. At times I have gently pushed on the head, and the jaw, in order to help the head stay at the extreme position. This must be the cause. I feel somewhat better having found this page, and I hope in a few days any muscular or nerve irritation subsides.

 

Hi everyone, glad I found this thread since what I have is very similar: pulsating T with heartbeat (95% of the time) that can be "turned" up or down by pushing on portions of my neck or turning my head. Most of the time my T can be turned down to almost off with large amounts of muscle relaxer (Robaxin) and general relaxants (like alcohol). However, on days that the T is high the relaxers don't do much at all.

I initially had a hearing test which came out fine. So they sent me to a dentist. After a CT scan showing my jaw too close to my skull they are treating it as a TMJ/TM Disorder (but without any pain) as a result of bad ortho plus grinding, which I am having various treatments:

- Splits since they believe I am grinding at night, plus put on a soft diet. Can't say I see any improvement from just this, but has been only two weeks.
- Massage therapy on neck. Definitely feels good and removes stress. Multiple knots removed and T seems to go down the evening after
- I had "trigger point injections" for the first time last week. Interesting result - when I turn my head to the right my T no longer goes up. I count this as an improvement. I go in for more injections tomorrow.
- I added a shrink to the mix and am on anti-depressants/talk therapy to deal with the initial panic from getting this. I will have to say I went from being in permanent panic mode to now more or less functioning normally, working, etc.

So as a summary the treatment is to prevent me from biting down (splits), work out all the knots in my neck and jaw with massage and injections, and thus allow for the TM joint inflammation go down and heal.

This is all theoretical, and some days I am hopeful (when T is way low - had a nice family dinner Tuesday where it was almost gone) and some days frustrated (up to screeching so loud last night that there was no pulsating). I will say there has been "improvement" in the last three weeks, but I can't say it is definitely going away.

I will give it six months and move to something else if I can't say there is definite improvement...

 

What did they use for trigger point injections?

 

@DirM

Sometime its a jaw muscle in spasm and not the joint itself. I'm on a bit guard splint as well but I feel I may need a mandibular repositioning device. Do you have sleep apnea?

 

@whale

No sleep apnea although I've had insomnia for years. I am wondering if the unknown grinding was a cause. I'm only two weeks into having my night splint but I do think the sleep is a bit better.

I am not sure what is used for trigger point injections but will find out Tuesday and post.

 

@whale

Okay had my second trigger point injections, going from the base of the back of my head down to the shoulder. He uses a topical freeze before the injection and uses lydocaine as the injection itself.

His theory is that the TMJ and grinding binds everything up, and just giving splints isn't enough. The muscles through the head neck and jaw are so bound up that they need additional support for the patient to "catch up" from all the spasmed and knotted muscles.

Most his patients have traditional TMJ pain and/or vertigo, and he admitted before we started that T alone was unusual for TMJ and is hard to chase down completely.

Now before I started this treatment I was running steady T up to a 7/10 (peaking even more), was able to get to 4/10 with muscle relaxers, and am now anywhere from 2/10 to 4/10 without relaxers (and even had a few hours of 1/10). My T is not gone but it has definitely gone in half in three weeks since I started splints plus trigger injections (plus massage therapy plus anti depressants I added on side).

So I'm hopeful that another month or two will push it down to a constant 1-2. I don't know if I can eliminate it, but can magage it if it stays there. After running 7 and panic peaking at 8 or 9, I really don't know how people manage, so my heart is out to those at those levels who have not been able to get relief.

I'll post on my progress and anyone feel free to drop me a an email with any questions.

 

I still have not gotten any relief, at first only in some rooms it would turn up, then about 2 or 3 week in, I did some yard work with those gun range ear protection on, I took it off and have been at 6-8 for the past 2 months. nothing has given me relieve. I was under a good deal of stress and wonder if I got acoustic shock disorder from working on my house. my hearing test ok, with only a slight loss in my left ear. I don't know if it will end and I think about suicide daily. Photos on my kids bring me back mostly , but its hard

 

@whale Hang in there. For me when I was that high Robaxin (muscle relaxer) brought it down a notch or two. Alcohol did early, but now it doesn't do anything if at all. I read someone on this board Valium or similar drugs helped (I haven't tried yet), but this long in I am going to guess you have tried most of those.

 

Robaxin didn't do much, but adivan brings it down a bit. its a benzo like valium. I took about 1.5mg of adivan and it calmed me down.

 

I can join the club....because I finally know what I am dealing with the last couple of years. It was gone for months and than I did some dry needling therapy and it would subside for several months and come back again.
This week it came back very strong and had one dry needling session and in de evening I was free of it but the day after it was back full force. Perhaps because my body has not healt from the dry needling yet.
I thought things finally were going better ....but now I got this to deal with again.....well at least there is something that can be done so!

 

Interesting thread.
I have a pulsatile high frequency "chirping" in the left ear like a glissando of a tiny harp.
It is not loud, but annoying in quiet surrounding. And sometimes I have the impression it
is the "reason", if I get my constant hissing....

 

Great thread and info. Thanks folks. I just saw the neurologist today - and she is familiar with this condition - so tests will be coming in the next couple of weeks - MRI/V CTA/V, etc. etc. She doesn't think I have this even though my T is mostly pulsatile right now. She actually thinks it's related to srtess - physical and mental - and that I may have even have had a mini-stroke - as my BP was running insanely high for a few weeks - and was over 200 when I first went to emerg. So far all the docs have said they were amazed I didn't stroke out entirely. She says obviously we'll have a better idea after all the tests, but thinks it should resolve itself. My eyes are quite bloodshot and there are some other quirks she's concerned about but said I likely have burst some capillaries and/or stressed some other stuff which is why it's pulsatile - the brain is trying to repair itself and laying down new pathways for blood vessels.

Couple that with the major levels of depression and anxiety from this right now and there you go. She told me to keep it up with the AD regimen for now (nortripilyne 10mg) , keep losing weight - I'm 235 and should be 190, but I was 250 2 months ago so there ya go. Keep at it with diet, keep stress down, and exercise and physical therapy - osteopathy, massage, etc. All the usual things. She seems to think it'll resolve itself in time. So I was pretty happy about that. Thanks for the information and good conversation, folks.

P.S. Pilot, if you're still around did you ever try that cranial nerve stimulation?

PPS: Has anyone tried a TENS machine?

https://www.tinnitusformula.com/library/somatic-tinnitus/

"Another treatment option is Transcutaneous Electrical Nerve Stimulation (TENS). These portable devices are connected to the skin using electrodes. They are attached to the skin close to the ear and, as a current is passed through, they augment the inhibitory action of the DCN, reducing tinnitus. One small study showed 46% of participants had improved or completely resolved tinnitus using a TENS unit.7 Patients used the units at home for two hours per day over two weeks time. Intermittent “typewriter” type of tinnitus was the most responsive. Somatic tinnitus without otologic disease had better response than tinnitus associated with otologic causes."

 

Just to be clear, as some others have said. My T is mostly pulsatile in nature. And when I do thinks - again as others have mentioned - like yawning, bending over to pick something up, turning my head from side to side - I really need to overextend the turn like if I'm trying to look behind me and really engage the mastoid - than the sound goes up. I haven't seem to found any trigger points that make it go down however. With the exception when I'm lying on my side, sometimes I'll be in such a position it does dimish quite a bit. And it's really weird because I can't seem to put my finger on it so to speak. And as soon as I move it goes back to normal. But like everyone else mine seems fairly mild most of the time and moderate now and then - definitely tied to stress and BP for sure. Huh, it's all so confusing.

 

Hmmm just want to post to.
Since my holiday 9 weeks ago My t when very somatic en pulsatile in mine right ear.
I have T for 3.5 years now but a lot of things happends in 1 year. I also devevoped a Anxiety Disorder.

So i thought to go on a holiday with the plane. After i got home 2 days later it al began. When i wake up i hear my hartbeat. When i turn my head my T (hissing) becomes loud, also when i bring my ear to my shoulder. When i pull my
eyelid down it is louder. But when i press on the bone behind my ear and the muscle under that the somatic is almost gone. How strange is that.

On my holiday my body was very tense. Affraid of al the sounds. Could nog relax.
Could it be from the anxiety or sound damage?

Can somebody give my some input about that?

 

I think my PT is due to a TMJ disorder. My PT started in 2015 when I had a brief episode of contrast-induced hyperthyroidism and experienced afib. My thyroid hormone levels have been back to normal for over a year but I continue to experience the PT and I am wondering if the brief episode of afib aggravated a pre-existing neuromuscular inflammatory state.

 

I'm pretty sure I'm a member of this club. I have pulsatile T in the R ear that gets very loud when I lie down, but if I jam my cranium up to the headboard, it almost disappears.
In the L ear I have a short hiss with each footstep (very annoying). If I clench my teeth while walking, this hiss almost disappears.
I can hear the same hiss continuously when I just my lower jaw forward, or when I chew.

 

I must be the chairman of the board ... had low level bilateral ringing for 30 odd years and it never really bothered me until I tried a yoga move that I used to be able to do 25 years ago. This was going from a headstand to dropping the knees to touch the floor. Big mistake - something weird happened in my neck like a painless rupture. I quickly got up and felt a bit spaced out but seemed ok. I carried on with my day counting myself a lucky idiot for trying that. 2 days later the pulsating hiss appeared, It drove me nuts and I noticed that clenching jaw, bending over etc would alter the levels. Also when I jogged the cadence of my footstroke controlled the pulse as opposed to my heartbeat.
I carried on with this for a couple of years until one day I attended (ironically) a concert by the UK band The Cure. I was feeling very depressed and stressed but welcomed the great music and the masking of the Hiss for 3 hours. I also rolled my head around a lot during the show. Two days later both T and PT levels went through the roof from about 2-3/10 to easily 7-8/10+. After 15 years of insomnia, anxiety/depressive episodes and extreme stress something had 'popped' in my brain and I suffered a complete nervous breakdown. 2.5 years later and I haven't been able to work. I walked out of my great job which I'd enjoyed for 16 years letting down a crew of great people that I considered friends.
This is a very tough thing to live with and nobody understands so I have extreme sympathy for anyone else with this punishing condition. Now I'm pretty sure I have fully blown Menieres as I get crazy vertigo and it feels like I've just stepped off a boat when I am walking. Also my ears feel like they are blocked but I can't clear them.
Now some days are better than others especially when you can find engaging things to focus on. Masking devices are crucial and have saved my life. Benzos (lorazepam) can be a short term relief but there are some who believe that benzos can cause T so be aware. Currently having a serious 3 day spike to see in the new year! I am 53 and in otherwise good health - another 30 years seems like way too long right now