HELP, Pulsatile Tinnitus for 13 Years

[DARUN]

Hi Guys,

I am so glad that I found a forum with people who can understand me. I have been having pulsatile tinnitus for the past thirteen years, yes it started when I was 13. In the beginning though it was just episodes but for the past 4 or 5 years it has been continuous. It has been getting loud too, also the ear feels kind of heavy like some pressure has built up inside. It is so dominant on my left ear or I am not able to decide whether I hear it in my right one. I have trouble hearing in my classes as I rush to the class my heart rate increases and so does this constant sound. It is so frustrating when I lose sleep because of this, I have to sleep with this and wake up to this. I forgot what a moment of silence felt like. In so many social occasions I had to just pretend that I heard what was so funny. I really do not know what the future holds for me.. Currently I cannot afford to see a doctor nor do I have a health insurance. I live in Tempe, Arizona. Any advice regarding anything will help... PLZZZZ

 

[billie48]

Welcome to the forum. There is a support forum on TT specifically for pulsatile tinnitus. So try to post there for support so a much larger membership can help advise you. Also @Karen is a notable member here who has have this condition so perhaps she can give you some advise. Don't worry about the future yet. Your condition may be temporary, or the spike may subside. Too much anxiety and stress can aggravate T. So try to stay calm and positive. Seek advise from others and try to apply some strategies learned. The future may not be what you project based on the most struggling time. At least that is what I have found out myself. I was in a mess initially and erroneously projected the future to be like that, and suffered horribly due to such catastrophic thinking (a cognitive distortion). But now I live a normal and absolutely enjoyable life. The dreaded future never materialize and I suffered needlessly. So try post for more support and check out the resource on TT. Take good care. God bless.

 

[James]

Hello @DARUN

Welcome, welcome. Glad you joined the forum. I know what pulsing T is like. I live with it everyday. Although, 13 years is ahead of me. You've coped with this a long time. I understand trying to carry on a conversation when you can't hear it, and smile and agree? to what. Sleeping is important to me too, I take some low dose AD for that.

I like billie's advice, to lead a normal life. I need to get there too. You got to get some medical care, insurance imo,, just in case you need some prescriptions and a doctor(s) care. Are you working full time, if not, I'd hope an employer could help with medical insurance for their employees. I hope you get better.

 

[Karen]

Hi, @DARUN,

I'm so sorry you've had pulsatile tinnitus for 13 years. That is a long time to be afflicted with this condition! I too have pulsatile tinnitus, and regular tinnitus as well. I've had mine for over six years now, and have been to a number of doctors and practitioners without finding a cause. However, in my case, the pulsating has not gotten any worse; it has stayed pretty constant (right ear only), and so has my regular tinnitus.

Billie and James have given you some good advice, and I don't have much to add, except that I've heard some people have found that taking vitamin B-12 supplements have helped them. It may not take the pulsating away, but it might soften it. Also, you could consider making some dietary changes, such as cutting back on sodium, caffeine, and sugar. For some people, those foods are triggers that make their pulsating seem even worse. It wouldn't cost anything to try, and it might help. Also, for some, losing weight can ease the worst of the pulsating. Worth a try!

Do you have any idea what might have caused the pulsating to begin back when you were 13 years old? Did you have any health condition that occurred around that time, or start taking a new drug, or have some kind of traumatic experience at that age? Sometimes, such things can be the trigger that sets off the PT.

We here at Tinnitus Talk certainly do understand what you're going through, about often not really being able to hear what someone is saying, but nodding and smiling anyway. I can certainly relate to that!

I hope some of our suggestions have been helpful to you. We're all in this together, and are happy to provide emotional support and understanding.

Take care, and keep us posted on how you're doing!

Best wishes,
Karen

 

[glynis]

Hi @DARUN,
Welcome to Tinnitus Talk.
Some people find beta blockers help slow the pulsation down and quieten it down a bit or hearing aids can help also but will need be seen by a doctor or audiology....lots of love glynis

 

[DARUN]

@billie48 @Karen @James @glynis

Thank you so much guys, You all have been a big help. I just graduated and have been looking for a job for the past few months, and is pretty much the only reason for my stress. Also I have been spending most of my days at a cafe lately. I am gonna cutback on it definitely.

One more question, My dad as a kid had some sort of extra bone growth in his ear which was removed through surgery, could this have any link to my condition?

 

[GregCA]

One more question, My dad as a kid had some sort of extra bone growth in his ear which was removed through surgery, could this have any link to my condition?

Sounds like he may have had otosclerosis, and it's a disease that is known to have some kind of hereditary component, so it's worth a check (audiogram, tuning fork test, ct scan...).

 

[Karen]

I agree that it could be otosclerosis, which tends to be hereditary. You could go to an ENT to be checked for this condition. They can check by giving you a test with an instrument like a tuning fork, to tell what type of hearing loss (if any) you might have. If it is conductive hearing loss, you may have otosclerosis.

Please let us know if you do decide to go for the testing.

Best wishes,
Karen

 

[DARUN]

I am at a stage now where I can't sleep without a sleeping aid or working out myself to exhaustion. Luckily my doc diagnosed it to be otoscelrosis in both of my ears. I am getting the surgery done in September this year for one ear and the other later. BTW my hearing capacity had considerably reduced in my left ear and progressively getting worse in my both my ears. I know this is hereditary and I cannot imagine my kid having this

 

[GregCA]

I am at a stage now where I can't sleep without a sleeping aid or working out myself to exhaustion. Luckily my doc diagnosed it to be otoscelrosis in both of my ears. I am getting the surgery done in September this year for one ear and the other later. BTW my hearing capacity had considerably reduced in my left ear and progressively getting worse in my both my ears. I know this is hereditary and I cannot imagine my kid having this

It is not very well understood unfortunately. Some people believe that there is a genetic component to it, others link it to availability of fluoride in the environment... but some cases (like mine) are unexplained.

Do you have any sensorineural hearing loss in addition to your conductive losses from O?

The surgery you are going to be doing (I assume a stapedotomy) has great success rates in terms of restoring hearing and reasonable success rates in terms of getting rid of T. There is hope in the offing!

Good luck!

 

[DARUN]

Yes, both my audiologist and ENT (otorhinolaryngologist ) deduced that I have both conductive and neural hearing loss. My tinnitus sound is approx 10kHz sound all the time besides the pulsatile whoozing sound. And to top it all I get episodes of explosive tinnitus.

 

[GregCA]

Yes, both my audiologist and ENT (otorhinolaryngologist ) deduced that I have both conductive and neural hearing loss. My tinnitus sound is approx 10kHz sound all the time besides the pulsatile whoozing sound. And to top it all I get episodes of explosive tinnitus.

Are you on any meds at all? (fluoride)
Have you considered a stapedotomy?

In my case the stapedotomy got rid of most of the hyperacusis, and it also seems to have stabilized my hearing (in conjunction with fluoride - not sure which one or both did the trick since I did both simultaneously).

 

[DARUN]

Nope, am not on any medication right now. I am having stapedectomy/middle ear exploration scheduled for sep 21st in Sacramento. Hoping for the best

 

[GregCA]

Nope, am not on any medication right now. I am having stapedectomy/middle ear exploration scheduled for sep 21st in Sacramento. Hoping for the best

Yup!
Success rates are pretty good! Good luck!