Somatic Pulsatile Tinnitus Syndrome, as identified by Dr Aron Levine

[PSK71]

After nearly a year of high pitched pulse synchronous hissing in mostly left but sometimes both ears, I’ve had a lot of ups and downs. My symptoms are very changeable (I have several days 24/7 annoyance and then a 21 hour day of zero noise, literally gone. I can stop and actively listen and still can’t hear it, then it comes back bad for several horrible days. Also fluctuating during the day. Some morning wake up loud 8/10 and another morning, Zero or 1/10. I’ve tired to keep records to identify a pattern. There is too much data to go on about here now, but it seems NOT to be the “whooshing” PT that Mr Axon and others deal with. I have some leads to get to the bottom of this and it’s looking more and more neck / jaw / muscular caused and stress and worry clearly make it worse. (I can turn volume up and down with neck and jaw movements. Literally sometimes like turning on and off a light with a switch. Looking at threads here say Mr Axon can’t help with this non whooshing type, was 4 years ago. I wonder if any change in 2023? Does anyone have similar. I’ve tried the CBT stuff but it isn’t helpful. (I know this is Neck / jaw / stress / worry issue. I had almost nervous breakdown leading up to my onset last year which my GP is adamant started this. I’ve unfortunately wasted thousands on sound therapy, CBT etc but my body is telling me this is something physical and can be helped. My two audiologist said I have mild high frequency hearing loss but both don’t believe it’s the cause and say look to neck and jaw. Im waiting to see ENT doc again as the last one (NHS) booked MRI : MRA but didn’t do it properly and I waited I 8 MONTHS for nothing. Now I have an expidited appt thankfully. Anyone with similar symptoms and experience? I’ve read a lot about cervical spine treatment for my super sore neck, dry needling etc

[Karlos99]

my tinnitus is somatic. Got three noises that change when I manipulate my jaw and neck. The sound changes all the time especially with stress which makes it worse. It never goes away though. I’ve got no hearing loss either. I’ve had mri ,seen ENT and even my dentist referred my to the hospital because I have temporomandibular disorder. All of them refused to help and said there’s nothing they can do. The neurologist said my nervous system has become over stimulated

My chronic tinnitus started after a prolonged stressful period in my life. I’d had it previously but it was only one noise that was barely noticeable. My biggest problem is sleep. Because of the hyper stimulation I’m never tired and can go days without sleep which leads to anxiety and stress which makes my tinnitus worse. It’s a vicious cycle. Good luck.

[PSK71 in reply to Karlos99]

Thanks for replying, yeah I can understand the issue with being hyper stimulated. Regarding sleep, have you ever used medication to help with that? When this first started for me, it was so bad I was getting an hour or two a night max. I got some meds and the relief was immediate. You mentioned Somatic which I now (unfortunately) have read extensively about. Have you ever tried any of the things suggested for this type? Cervical spike treatment or any type of treatment for your TMJD? you said docs and hospital won’t help (same) can you find some help privately? I did try dry needling / acupuncture and found that within a few days of the treatment, I had 21 hours of almost zero symptoms until it started again. Sadly the practitioner moved overseas very soon after so didn’t see her again. I’m currently looking for someone to do some more. I strongly agree about the worry and stress. I keep meticulous notes and can identify very clear patterns where emotional stress in particular, bad worry etc lead to worsening somatic tinnitus. I try to keep this stress down but who knows when a new worry pops up!! Haha can’t really avoid it all. I am finding therapy im in for the last few months very helpful. It’s for anxiety and depression and is helping. If you’ve not tried, maybe have a go? I guess it depends on how much the T is impacting you. Wishing you good luck also

[Karlos99 in reply to PSK71]

I was put on mirtazapine for sleep which worked for about 8 months then stopped. Tried everything since then and nothing works. Even zopiclone won’t work. I ended up in hospital a couple of months back after 5 days and nights with zero sleep and they wouldn’t help. Was in a really bad way.

I’ve had dry needling, acupuncture, physio and even saw a chiropractor but nothing helped.

My tinnitus didn’t bother me for a long time but these sleep problems have made it spike quite a bit. It’s caused huge anxiety again. I’m waiting to see a therapist which should be in the next 4 weeks. Also waiting to see a hypnotherapist who lives near me. Got to wait until January for that though.

All the best.