Howdy from Pulsatile Land

[gmcmanus66]

Sorry, I might have broken etiquette by going right to the pulsatile forum. I'll post some of what I posted in there as a way of an introduction. Short story long, back at the end of August I either started hearing or just started noticing a very high-itched (hissing?? ringing??) that was perfectly timed to my pulse in mainly my left ear. Being a psychologist-treated health anxious person, I immediately panicked before deciding to do what my counselor trained me to do...wait a few months to see if my symptoms changed before I ran off to the doctor. This is advice strictly for something that doesn't appear life-threatening, of course. And STAY OFF THE INTERNET, of course! Well, my paranoia got the best of me and I started looking up what was going on and found the term "pulsatile tinnitus." I started with "tinnitus" but quickly found this sub-diagnosis.

My PT tends to be screaming when I wake up in the morning, sort of comes and goes during the day (but if I try hard I can always seem to go find it if it has gone to the background). It tends to slack at night. I can go to sleep just fine.

So in my internet searches, I have discovered that I'm either totally screwed by things such as fistulas, carotid stenosis, various types of tumors...OR, PT is "most often harmless," "usually nothing serious". I think I read that some cases of PT can resolve on their own if given time as well, so maybe 2 months (1.5 months really) isn't enough time for any improvement.

After getting panicked, I did make an appt. with my family's ENT for Monday. I'm to go for a hearing test then directly to see him. I'm dreading starting all these tests. I've had 7 MRIs already due to a spinal tumor 6 years ago and the 5-year annual follow-ups. But, I guess I'll just do what I need to.

A bit of background...I'm 50, in good shape, work out pretty vigorously 6-7 days/week. I am hypothyroid controlled by medicine, and I take an anti-anxiety med daily due to the health anxiety. I've always had a cricky neck, seems like, with some shoulder pain over the last several years.

 

[Breezer]

Sounds terrible.

 

[James]

Welcome @gmcmanus66

Nothing wrong with seeing the doctor. My Audiologist (hearing test) was also knowledgeable about T, besides my visit to the ENT doc. I hope the best for you. Thats great, you fall alseep just fine.

 

[Dominic1955]

Have noticed hearing loss ?

 

[Karen]

Hi, @gmcmanus66,

I read your post with great interest, because your pulsatile tinnitus sounds similar to mine, except that mine seems worse in the afternoon/evening, and calmer in the morning. I had mild tinnitus in my right ear for many years, but it was after I took a blood pressure drug for the first time that my PT started, and my regular tinnitus got much worse (high-pitched hissing), as well.

Some people really do have cause for concern when they find themselves with PT; you're right that it could be caused by a fistula, etc. But for many of us, a cause is never found. I've had mine for over 6 years now, and had a lot of tests without any answers. It is still there, but I've either gotten used to it, or it has become more bearable with time.

By the way, it's possible that there is something to the fact that you're hypothyroid. I've heard from others who are also hypothyroid who have PT. I'm one of them myself. I've had hypothyroidism for many years, and have been on levothyroxine for a very long time.

I think you're right to get checked out by a doctor, and then, if you try various tests without any results, then you can make a decision as to whether you want to circulate your scans to other doctors/specialists, or to try living with it for awhile.

Did yours begin suddenly, or did it come on gradually? I'll be interested to hear what your doctor has to say, and hope you will post a follow-up.

Best wishes, and I hope you are able to get some answers!

Karen

 

[gmcmanus66]

Hi Karen,

I have certainly read your story as I've gone through the tinnitus talk pulsatile forum...you do a great job of making people feel welcome. Mine came on fairly suddenly I think, about 1.5 months ago.

I saw the audiologist for a hearing test yesterday morning and I do have hearing loss in the high frequency range (probably due to either age or some previous exposure to loud sounds, plus I'm from a very poor, rural area and I had a ton of untreated ear infections as a kid). So then I saw the ENT and he examined me, listened to my neck and around my ears, checked for bruits and objective vs. subjective. Said he couldn't hear any problems anywhere. We went through my medical records and did a thorough history.

After hearing my description about how my PT can switch between PT and regular T (albeit infrequently), go from left ear to both (albeit infrequently), and go away altogether for a portion of the day, he didn't feel the need for any imaging tests. In his opinion, if it was one of those rare cases of something curable or even more rare cases of something dangerous, it would be less intermittent and also louder.

He said my lower range hearing was still excellent but with my higher frequency hearing loss, my brain was reproducing that sound for me because it missed hearing it so much (haha, I'm paraphrasing there). I've always been able to sense and feel/hear by heart rate throughout my body, particularly in my left ear for some reason. I have a very hard heart beat due to the amount of exercise I do (ejection fraction close to 70% from left ventricle). So as he put all my medical records together as one, basically what he came up with is that my brain is producing the high pitch (which comes and goes) and that's sort of "mixing" with my hard heart beat through either my jugular or carotid next to my ears (but especially with my left). Since I'm still have excellent hearing in that lower frequency range, that's why I'm having a mixture of PT, T and nothing. Venous hum he thought.

I think that's good enough for me to come to peace with it and start to habituate. If it gets louder or constant, he said come back and we'll start over. I went in thinking he wasn't even going to know what PT was but he was fairly knowledgeable. I'll keep track of it and watch (or listen I guess) for any changes. He did say I'm fairly early in this event it could improve.

I'll repost this in the pulsatile forum I guess.