Pulsatile Tinnitus Mystery

[Paul13]

I'm reading here and in other blogs that PT it is mostly from vascular reasons, but recently I was told that there are instead a lot of cases with no evident vascular reason, pointing to different cause.

Do we need to think that at least 30%-40% of PT are not from vascular origin? If this is correct (it is?) we can maybe better understand the nature of this ugly illness and hopefully find a cure...

 

[AuntSally]

Hello. That's interesting. I developed PT several months ago and have not yet found a cause. Unlike normal T I think that PT must have a physical cause. I'd be interested in knowing where you found out that a lot of PT isn't vascular. I've had diddley squat from GPs ENTs and suchlike and have been assuming it must be (vascular). A website I saw said only 3% of T is PT But I often wonder if it's more than that as I read incidentally around forums. Some people have both normal T and PT.

 

[volsung37]

Some PT is from inflammation due to inner ear infections.

 

[Kelvin]

Hello. That's interesting. I developed PT several months ago and have not yet found a cause. Unlike normal T I think that PT must have a physical cause. I'd be interested in knowing where you found out that a lot of PT isn't vascular. I've had diddley squat from GPs ENTs and suchlike and have been assuming it must be (vascular). A website I saw said only 3% of T is PT But I often wonder if it's more than that as I read incidentally around forums. Some people have both normal T and PT.

I got T that is nearly always Pulsatile. It started about Two hours after a tooth filling. Never had T before that filling. Then boom. Still have it. Damn thing. Im convinced its jaw related.

This Doc gave himself T after doing jaw exercises...see 14.45min. Not sure if pulses though.

 

[Rasmus]

I got T that is nearly always Pulsatile. It started about Two hours after a tooth filling. Never had T before that filling. Then boom. Still have it. Damn thing. Im convinced its jaw related.

This Doc gave himself T after doing jaw exercises...see 14.45min. Not sure if pulses though.

I can also make my T twice as loud just by putting presure on my troat/jaw.

 

[Fungus]

I can also make my T twice as loud just by putting presure on my troat/jaw.

A lot of us have tinnitus affected by pressure etc. Stretching the skin around may ear when lying my head on the pillow cranks my regular tinnitus up.(I have 24/7 hissing tinnitus and intermittent PT.
I don't think my PT is due to vascular disease, more likely inflammation. Anything which increases congestion, head colds, sinus infection etc, brings on my PT. It lessens when I take ibuprofen.(Though ibuprofen and NSAIDs are implicated in tinnitus causation in some folk).

Some PT is from inflammation due to inner ear infections.

You nailed it for me.

 

[volsung37]

A lot of us have tinnitus affected by pressure etc. Stretching the skin around may ear when lying my head on the pillow cranks my regular tinnitus up.(I have 24/7 hissing tinnitus and intermittent PT.
I don't think my PT is due to vascular disease, more likely inflammation. Anything which increases congestion, head colds, sinus infection etc, brings on my PT. It lessens when I take ibuprofen.(Though ibuprofen and NSAIDs are implicated in tinnitus causation in some folk).
You nailed it for me.

I noticed when I took phenergan - an antihistamine - that the PT lessened or disappeared.

 

[Paul13]

I'm glad I promoted 'reflections' here, I'm not sure who is right or is wrong, definitely some doctors told me that several people has PT without an effective cause and at times, often, PT can disappear by itself. This imply in my opinion much more of the famous 3% of people getting PT without a vascular problem. All that said I don't like to give fake hopes to sufferers and to myself. Still a fact that I was told that way…

 

[Fungus]

This imply in my opinion much more of the famous 3% of people getting PT without a vascular problem.

I'm as sure as I can be (ante-mortum!) that I don't have vascular disease causing my own PT. I've had a minor episode of infection/inflammation in my left ear over the last couple of days. Not only did my regular hissing tinnitus get much louder but I noticed PT again in my left ear (haven't had it since about Xmas time). I also felt a bit inco-ordinated, but didn't go on to get full-blown vertigo as I have had in the past ('Benign' Positional vertigo).Now that my ear is improving the PT has stopped, the hissing has gone back to its previous volume, and the inco-ordination has resolved.

After I had surgery to my ears (first grommets and then T-tubes for Eustachian Tube Dysfunction) I had very loud and bilateral PT (woke up from both surgeries with it) With time my PT disappeared in both ears and has only re-emerged when I have had inflammation in my ears.

I'm not sure if anyone ever has done accurate or large enough studies as to exactly what has (or has been thought to be) the cause of sufferers' tinnitus. What I read here makes it clear to me that those who are studying the disease need to go back to the basics of aetiology, natural history and effects of various interventions. In the meantime it seems we have to rely on self-help and natural habituation to a greater or lesser extent.

 

[AuntSally]

When I discussed the results of my MRI scan the ENT said it showed I had a couple of vascular loops, which are blood vessels looped around your inner ear. I guess all it takes is some inflammation or changes in there to be able to hear those blood vessels. I don't know how common they are. He just said it was an atypical formation. Maybe thats why some people get PT. If it is that maybe it'll fade when the inflammation goes down. I dont know. All I know is I had normal T first of all, which seems to have abated, mostly, but now I have PT 24/7.

 

[Karen]

Hi, @Aunt Sally,

I'm glad to hear you have gotten some answers from your ENT. Yes, it is possible that when the vascular loops become inflamed or irritated, the pulsating sound could result. I'll be interested to hear if your PT settles down as your inflammation goes down.

Like you, I had regular tinnitus first, then my pulsating started later (due to taking a blood pressure drug). I don't have any explanation as to why it started, it just began suddenly.

Good luck, and please keep us posted on how, or if, your PT changes over time.

Best wishes,
Karen

 

[ChristineRose]

Hi, @Aunt Sally,

I'm glad to hear you have gotten some answers from your ENT. Yes, it is possible that when the vascular loops become inflamed or irritated, the pulsating sound could result. I'll be interested to hear if your PT settles down as your inflammation goes down.

Like you, I had regular tinnitus first, then my pulsating started later (due to taking a blood pressure drug). I don't have any explanation as to why it started, it just began suddenly.

Good luck, and please keep us posted on how, or if, your PT changes over time.

Best wishes,
Karen

 

[ChristineRose]

Hi Karen...I was reading an older post of yours where you said your T was getting better and perhaps the PT was next...has your PT gotten any better?

I've had regular T since July of 2008. It changes with colds, diet, sleep...but im prep much used to it.

PT started for me on 2/7 this year. It has yet to go away.ive had it before, with sinus infections, head colds and such. It never stuck around this long.

My ENT ordered an MRI for me. I go this Friday. But I see most ENTs do this.

I'm so afraid it won't ever go away. It has caused me anxiety. Now I'm just sad. I want it gone.

 

[Karen]

Hi, @ChristineRose

I'm sorry to hear you have pulsatile tinnitus, and there are so many possible causes that it would be hard to pinpoint what might have caused yours to begin. Since you've had head colds, sinus infections, etc., it's possible that you have some inflammation, and yours could subside with time, and possibly medication.

I'm glad you are going for an MRI, and will be interested to see what the results are for you.

Yes, I do still have both T and PT, but mine has calmed down, and I have pretty much learned to live with it. At first, the PT was horrible, and I was crying and worried every day. But now, I have learned how to manage it so that I can live my life normally again.

Good luck with your MRI, and please post an update.

Best wishes,
Karen

 

[Fungus]

I'm so afraid it won't ever go away. It has caused me anxiety. Now I'm just sad. I want it gone.

It may well go away.(See my post above).
Strangely enough, I am have never really been too concerned about PT (maybe because I had 'the full works' related to my sudden onset of regular tinnitus...severe depression etc).
A good way to think of PT is this......The carotid arteries, the two major arteries suppling the brain (the other two being the vertebral) pass very close to the inner and middle ear mechanisms (look at any anatomy diagram of the area). The big surprise is that everyone doesn't have PT. (Maybe prenatal habituation to the heartbeat's sound in the head takes place during formation of the brain). Anything which affects the area immediately adjacent to the carotid artery/inner ear territory, such as inflammation making the tissue more solid, is likely to cause PT. Sound is conducted better by some tissue, particularly more solid tissues, than others. Hence PT (or, of course vascular abnormality).

Try to be reassured by the rhythm of the heartbeat rather than concerned by it.

You WILL habituate to PT with time....and PT may well disappear. It seems that inflammation caused it before....it may be that it has caused it now.

Good Luck,

Fungus.

 

[ChristineRose]

Thank you so much Fungus. I read your post last night about when it started for you. It gave me a lot of hope.
My faith is strong. I lean on it a lot. I don't know why this has happened to me right now, but I refuse to let it stop me living my life. It does scare me at times...yes...it's those times that I turn it over to the Lord, again.

It's people like you that reach out in care and kindness that make it easier to bear this.

Thank you sound much! Your words truly encouraged me!

 

[Dori61]

I have PT,. 2 MRI's with contrast... No tumors, no infections,,.. Neurologist thinks MAYBE some inflammation,,, ENT doctor says no... Having CT scan in two weeks to check the bones in my inner ear because sometimes I get "clicks" .. hearing loss equal in both ears... Ive come to the conclusion that doctors even "specialists" know very little about this condition.. If they cant find the obvious cause.. they just start guessing. This condition effects so many people, you would think research would be more urgent, but since it isn't physically "life threatening" in most cases, its put on the back burner.

 

[Karen]

Hi, @Dori61,

That is so true! I've been to so many doctors, had a lot of tests, and nothing conclusive was ever found. How I wish there were more research into this condition.

There is a new clinic that has opened out in San Francisco that specializes in PT. Wish I didn't live on the other side of the country!

Take care, and I'll be interested to hear the results of your CT scan.

Best wishes,
Karen

 

[Dori61]

Thanks Karen !! I live in Pennsylvania so I can relate totally. I also have twitching in my right eye, the side the PT is on. Another mystery doctors have no clue about. Age and stress seem to be the " safe"'conclusions for some of the doctors.. I'm tired of the tests and the puzzlement of these " specialists " at least I know it's not a tumor, my ENT liked being able to tell me that good news as if I should be satisfied and learn to live with this, he even said his eye twitches too but he ignores it... sigh

 

[Karen]

@Dor61,

I've had PT for almost 7 years now, so it's hard to remember all the symptoms when mine started, but I believe I remember having some eye twitching, too. It was sporadic, not constant, and I had no explanation for it.

Now, most of the early symptoms are gone, but the pulsating remains. Have you had a lot of ear fullness since the start of your PT? I had it really bad for awhile, especially the first year, but it finally went away. I also had some dizziness, and episodes of vertigo.

It's possible that your eye twitching will settle down after awhile, as mine did. No, I don't think it has to do with aging; it probably has to do with the fact that the PT is aggravating that side of your head. It can affect the eyes in some strange ways. When mine was really bad, I often felt that my eyes were bleary; and, for some reason, my PT always seems to settle down a bit after eating dinner. I don't know why, except that I feel calmer and more relaxed in the evening.

Take care, and I hope you get some answers from the CT scan!

 

[AuntSally]

I find it helpful to hear peoples experiences of PT so thank you everyone. Otherwise I would think I'm totally alone with this distressing condition. I find it a little easier during the afternoons and evening and sometimes, depending on how much sleep I had the night before, can feel almost normal despite a bit of mild pulsating mostly just in my right ear. But it gets worse during excercise, in both ears,which is very difficult due to the loud pulsating. I don't even enjoy a walk in the forest these days, which was a cornerstone of my life before. And night times are a major problem. I wake with every change in my heartbeat and don't often get back to sleep. I average about 4 hours. @Karen I remember from a previous thread you had a lot of trouble sleeping. Did you get over it?

 

[Karen]

@AuntSally,

Yes,I got over the worst of the sleep problems. However, when I wake up at night, I often find it hard to return to sleep. I average 4 to 6 hours a night, for the most part. I have PT in my right ear only, so I try to fall asleep with my opposite ear on the pillow.

I hope your sleep improves as time goes on, and I believe it will!

Best wishes,
Karen

 

[Fungus]

Thank you so much Fungus. I read your post last night about when it started for you. It gave me a lot of hope.

You're very welcome, Christine. The lack of knowledge of some professionals about tinnitus in the various forms often makes things seem worse. At least those of us who have the condition can say how it evolved.

You WILL find that it improves. It may well disappear, but, if not, then it will become unimportant.

Best regards,

Fungus.

 

[Ruby64]

I have had a journey with PT. Mine started two years ago in one ear. I am a Migraine sufferer and possible MS. I have some signs but not all. I am an enigma lol. I had MRI, MRA, MRV with and without contrast. CT scans and even cerebral angiogram. Saw specialist ENT. I have a few spots on MRI. They have been stable for years. Two herniated discs in neck. I do take Metoprolol. Everything on tests was fine even cerebral angiogram, which was no picnic. So no one really had an answer. The neurosurgeon also stated that sometimes with age the temporal bone thins out and that vessel is close to the war drum. I did also get this about a month or so after a root canal. My neuro thinks I could be in a constant state of Migraine on brain as I can sometimes feel it into my face. So basically I give up. Some days it's louder especially if I'm tired or upset. I just have to live with it. Ugh.

 

[Paul13]

Getting more and more unfortunately used to PT, that never stops, it is really hard to believe that this pulsating hiss is not from a vascular precise reason, even if unseen. But if it's from an inflammation cause instead, as I read often here, what kind of inflammation can create a PT sounds that go on and on for months, years and so on?…lastly, a neural reason seems close to impossible to me, even if doctors I saw will say this being possible. I guess that many doctor, as usual, grasp in darkness...

 

[AuntSally]

@Paul13 me too. Just wondering about the prospect of having to live with my ears pulsating for the rest of my life. I'm 58. Some days I'm nearly ok and think to myself ok I can do this! Others I wonder how it's going to be possible to live any sort of normal life or sleep properly again. It's the mystery too that gets me. On another forum I read that the first step to habituation is loosing the fear. Well I haven't made that step yet. To me its not "just a noise". Not yet.

 

[Paul13]

@Paul13 me too. Just wondering about the prospect of having to live with my ears pulsating for the rest of my life. I'm 58. Some days I'm nearly ok and think to myself ok I can do this! Others I wonder how it's going to be possible to live any sort of normal life or sleep properly again. It's the mystery too that gets me. On another forum I read that the first step to habituation is loosing the fear. Well I haven't made that step yet. To me its not "just a noise". Not yet.

Let me be straight: You have totally my sympathy. If its 'a a noise for life' will be insane. So its not just a noise it is more a torture. You're right in your rejection. Also acceptance of the illness depends how strong is your symptom and loudness of PT. Probably for some the level is really low so that is easy to forget or the PT got masked with other noises from ambient. But if is strong like is for me sometimes it is impossible to mask or 'not to care'. Is there and you feel it. Still many of us grasping in darkness and doctors too...

 

[Bidyut saha]

I don't listen my PT all the time. Only when i in bed to sleep and when sit I notice it in my right ear. I don't know the reason still now. If someone could tell me how should I try to know why this is !
Best

 

[Purva]

When I discussed the results of my MRI scan the ENT said it showed I had a couple of vascular loops, which are blood vessels looped around your inner ear. I guess all it takes is some inflammation or changes in there to be able to hear those blood vessels. I don't know how common they are. He just said it was an atypical formation. Maybe thats why some people get PT. If it is that maybe it'll fade when the inflammation goes down. I dont know. All I know is I had normal T first of all, which seems to have abated, mostly, but now I have PT 24/7.

Hi
Is your tinnitus coming from vascular loop only?