New to Pulsatile Tinnitus and It's Driving Me Crazy

[OliviaPT]

Hello all,
First of all, I have to say I am so happy to find this forum this because I thought it's just me having this rare condition, but of course I am not happy that you're all suffering from this unsolved mystery.

I first noticed my PT last year, very faint and quite randomly when I was asleep. I'd wake up in the middle of the night and hear this noise, but then it'd go away quickly, so it never really bothered me. Then started in Nov. 2015, it's been very noticeable and started during the day as well and then it became 24/7. I read some other forum about noise in the ear and a lot of people say take magnesium or eat almonds, and their symptoms went away. I started taking the magnesium and ate almonds, but nothing happened.

I went to my GPs, both saw fluids in my ears, so gave me nasal spray, ear drops and allergic medicine to clear the ears. He thought that's why I was hearing my own heartbeat. 2 weeks later, fluids were gone, but I still hear it pulsing noise in my right ear, then I was asked to go see ENT. During the day the PT is less noticeable if I am out and about, but if I am home or at night sitting down to watch TV then I can totally hear it, even in the shower. For the first month and half it's kind of comes and goes.. it's always there, but some days are quieter than others and also depends on my position, I noticed if I tilt my head forward or lean my body forward, then the noise becomes louder, and if I press down my neck to block the blood flow/stop my pulse basically, and it stopped. And during sleep, if my head is facing straight up or tilt to the right, then no noise, but if I tilt to my left then the noise it there and definitely very loud if I sleep on my left side. Needless to say I haven't really been able to sleep on my left side for the last 2.5 months. Most of the time I sleep on the right side to put pressure on my neck/face to stop the noise.

There are good days and bad days. Some nights, as long as I keep my face up straight or tilt to the right then I don't hear it, but some nights the noise was loud enough that I have to sleep completely on my right side for it to stop, by tilting the head wasn't enough.

I am in my 30s, pretty healthy, not overweight, not on any medication, no family history medical conditions, no kids and no surgeries. My PT kind of just started randomly. Been to my GP several times and ENTs, tests all been ordered (CT, MRA, hearing test, wave test) and all came back negative. GP seem to think that this is one of those diseases that's hard to diagnose if thel major tests all came back negative, there's nothing they can do about it. As my friend said it the best, "I don't understand how we can put people on the moon, but we can't figure out what's the cause of PT (for those have all tests negative). If Bill Gates is having it, they'd have spend more time to figure out the cause."

About 2 weeks ago, for 2 days, I could barely hear the noise during the day and even at night, I was able to sleep on my left side with the noise being very minimal. Although I could hear the very faint noise, I still wanted to lay on the left side just because i haven't been able to for a while. I could turn around all night and the noise still didn't show or noticeable enough. Just when I thought it's a miracle that this thing is finally going away... no such luck. It's been non-stop and very loud for the last week and a half. Bad enough that I am doing research on line (since Dr. can't seem to help me). I really don't understand why this is happening and why it's affecting so many people that there's no treatment or can't find a cause. I really hope my PT will fade away soon or at least give me back the good days and bad days so I can take a break. Now I literally have to hold down my neck for a few minutes during the day just to give the noise a break in my head. And I also can't pop my right ear... no pain though and no hearing loss.

I appreciate whoever is reading this and maybe offer some guidance. I know 2.5 months is a lot easier for some of you that have been living with this for years or decades. But it's driving me crazy!!!! Thank you.

 

[Karen]

Hi, @OliviaPT ,

I'm so sorry you're having a problem with pulsatile tinnitus, and have not been able to identify a cause. I have pulsatile tinnitus, too, and am in a similar situation. I've had mine (right ear only) for about 5 1/2 years now. I've had the same tests you've had, and they all came back negative. PT is such a mystery, and it's very hard to live with. Only another PT sufferer can understand what it's like to have that sound going on in your head all the time!

A couple of suggestions for you: You have been to a general practitioner and ENT for these tests. Perhaps you could consider going to another type of doctor for a second opinion, such as a neurologist, neurotologist, or vascular surgeon. They might know more about PT than your GP, and could perhaps work with you to determine a cause. Another thing I noted -- your PT does go away when you push on the jugular vein in your neck, so maybe yours is venous in nature. Did one of your tests include an MRV? If not, maybe you could ask for that test, just to rule out anything to do with the veins.

I have had a number of tests, too, and since nothing was found, I've been living with mine for these past few years. I will tell you that mine has gotten less severe (or maybe I've gotten used to it!) over time, so that it is easier to live with now. Also, that feeling of fullness in your ear is a common symptom, and will probably go away in time. I had that, too, and mine is gone now. I still have both T and PT in my right ear, but I am managing better than I was at the beginning. So, there is hope that you will improve in time, too.

Another thing to mention: I've heard that there is a new clinic in the San Francisco Bay area that specializes in pulsatile tinnitus, so as a long shot, you could always consider traveling there to see if the doctors there could help you. Here is a link: https://radiology.ucsf.edu/people/matthew-amans

I wish you a peaceful day, and hope that you will one day find a curable cause for your pulsatile tinnitus. But if not, things may begin to get easier for you over time.

Best wishes from a fellow "whoosher",
Karen

 

[OliviaPT]

Thank you Karen for your kind words. I can't imagine to live with this for years, but I guess I will have to somehow if it doesn't go away on its own. I had an MRA that look for blood veins apparently and came back clear too.

I had a massage once and it stopped for a few hours right after the massage. Thought it's a bit of miracle, unfortunately PT came back.

I might have to check out other doctors to see if they can come up with anything, as you suggested. My PT seems to get louder and louder at times... and sometimes I think I still hear it even though it stopped for a few seconds on its own. Hope yours will go away and it's great to know that you're managing it much better than before. Thank you again!!!

 

[Karen]

You're welcome, @OliviaPT ! I hope that things will get better for you, too.

What country do you live in? Are you near a large city, with hospitals, etc? I've heard that going to a doctor who is affiliated with a teaching hospital might be a good place to go for assistance. And for reading scans, it has been suggested that we go to a neurointerventional radiologist, who might be able to see things that others might miss on the scans.

I hope you'll keep us posted on what you find out, if you do decide to go to another doctor for a second opinion.

Best wishes,
Karen

 

[OliviaPT]

I live in Las Vegas, Nevada. I will definitely look into specialists that might be more experts to PT or get second opinions elsewhere. Thank you

 

[Juliebenita]

Hello. I started having pulsatile tinnitus about 8 months ago and have been to many doctors and had many scans taken. If I press on my neck I can make the whooshing go away. Other than that the PT is constant and I am also having headaches. I am a healthy 39 year old female. No one has any answers for me. I would truly appreciate any advice as to what my next steps should be. Thanks!

 

[Fungus]

As well my regular 'hissing' tinnitus in both ears, I have loud PT in my left ear (mainly troubles me at night and after any form of exertion). I have T-tubes for ETD following a virus infection in 2014. CT, MRI head etc all said to be OK and the comment made that it's rather surprising we don't all have PT as the ear mechanisms are VERY close to the carotid arteries entering the brain.

I have always been under the impression that there is some consolidation in my left ear and that all 'is not right on the left!' as I have had purely left sided migraine since childhood.

Yesterday saw a different ENT doc. from usual who told me I had a big Concha bullosa on my left middle turbinate and that this is probably responsible for my persistent sinusitis on the left and probably also my PT......so don't necessarily accept what you are told at first! He wants to operate on it. Doubt it will cure my tinnitus, but explains a lot of other things.

Sorry to 'leap frog' in on this post....but PT....don't let it bother you if all the the tests truly ARE normal....after all it is just your ticker letting you know it is alive and well.

Fungus.

 

[Cindy W]

Oh my goodness I do not wish PT on anyone! I'm 48 and my symptoms began a year ago and just couple months after having ACDF surgery. Thinking it was connected somehow I went back to my orthopedic surgeon and he sent me to an ENT. I was put on steroids to reduce fluid and nothing, refereed to another orthopedic who ordered CT scan of head and neck both look normal, referred to a Neurosurgeon who ordered an angiogram to check all the arteries in my neck and for an aneurysm in my brain. All with negative results which I'm grateful for but still no solution. He then put me on acetazolamide for a month with no relief. After so many test it gets frustrating to say the least and the whooshing just won't stop! After a month off of trying to fight this demon I'm back to the Dr and next is a lumbar puncture to check if there is elevated levels of spinal fluid. As much as I don't want there to be something wrong I do wish they would find something so I can get some relief. For all out there that have any form of tinnitus I feel great empathy for you and wish you the very best.