New to Pulsatile Tinnitus

[Laura89]

Hi everyone, my name is Laura, and my journey started Feb 14, 2014.

It came out of nowhere, or so it seemed. Don't know if its all related but this is how it went down, on Feb 10, I thought I had a bad bladder infection, went to the Dr asap because I am not new to bladder infections and the pain can be horrible, in fact I have had many in the past 2 years, I don't always go to the dr, I went this time. She game me antibiotics, Microbid to be precise. On the fourth day I started hearing my own heartbeat in my right ear. Stopped the antibiotic. The heartbeat also seemed to become worse if i bent down, moved my head to much and basically anything that puts pressure to the head.

At first drs told me it was an ear infection, I waited, didn't go away. On Feb 19, I went to the ER because i was woken up by the loud heartbeat/blood flow pulse. I was/am very scared. Drs didn't know what was going on, they took a CT scan with dye of my head and neck, the only relevant thing that came up was that on my right side mastoid I has more air cells, but other than that, no tumours or anything of the like. They referred me to a ENT, before that they sent me for various tests with an audiologists who confirm I had no fluid in my ear and that my hearing was good.

I was happy I was not loosing my hearing but very sad/anxious/depressed of the uncertainty. Finally I saw the ENT on March 5, he had no explanation, he told me that perhaps my carotid artery ran very close to my ear but that I was going to have to deal with it.

I couldn't believe it...

I ran to my GP told her I needed more testing done. I wanted a referral to a vascular specialist or a neurologist but she won't do that. Instead she sent me for an MRI, but said she won't do anymore if it comes back clear. An specialist might know what tests are better..?

I had the MRI last wednesday, before becoming very ill with fever for no reason, I had fever for 4 days, and those days were hell because my blood was pumping very hard and I thought my ear was going to go deaf. I feel like the fever was somewhat related to my bladder issues, I did not take antibiotics, I am very scared of taking anything!

I am waiting for the MRI results... Today tho, I realized that if I breathe deeply like all the time the heartbeat sound is a bit quiet, I have been breathing this way ALL day today and I have been able to cope. Its been pretty bad the past 5 weeks, anxiety, depression... it all started when I was eating very healthy, exercising and doing great in school, about a month before all happened I had gotten back from an amazing trip to south america so... no stress, no anxiety... I don't get it.

I thought maybe the antibiotic? who knows, also who knows why I am able to control it with my breathing.

My heart goes to all of you going thru this bullshit, its fucking hard, it has taken all I got to be able to be calm. For like a week I slept in my bathtub because the bathroom's fan helped masking the noise a bit.

Anyone from Calgary, Canada? or the nearby area?
Anyone with pulsatile tinnitus?

I send everyone good vibes, hugs and please don't hesitate to contact me.

PS. Acupuncture helps a lot, deep breathing, keeping a log of symptoms, things I ate, stuff I did that day. My acupuncturist is confident I will get better and he is helping cope with this situation.

 

[Karen]

Hi, @Laura89,

I'm so sorry you're having to deal with the pulsatile tinnitus in addition to the bladder infections, etc. I will send you a private message to discuss.

Best wishes,
Karen

 

[Anon123456]

Hi Laura - sorry to hear you are also going through this do you know which antibiotic you were on? Some drugs are ototoxic, though if you aren't suffering any hearing loss, I suspect it didn't damage your hearing ha. I am going through a similar process right now with doctors not taking my concerns seriously, and it was onset just like yours!

 

[KaraB]

I too have been suffering with this and having a hard time getting my family doctor to take me serious.
I too had a BAD bladder infection.... 2 days after giving birth, I started having pulsatile tinnitus and was started on MACROBID for my infection.....Then 4 more prescriptions before they finally have me Cipro and the bladder infection went away.... but the tinnitus did not.
I went to my dc office three times in one week, was put on anxiety medication and then beggggged for a consult to an ENT, which he finally did, but my appointment isnt until May 20th. I have been listening to this pulsation since NOV. It didn't bother me for a while, and then got really bad again the last 3 weeks. I also have post-pardum depression.
Like you, I am very scared.... I have a new baby at home, and hear it VERY loudly when I bend over to play with him, and at night it is horrendous.
I can hear it worse when moving my neck a certain way too....
ugh, so stressful.
Have you had any improvment or luck??
The breathing thing sometimes helps me too.... I think sometimes when I get anxious my heartrate goes UP, so the Pulsatile Tinnitus seems worse and louder..... then if I calm myself with breathing, my heart slows down, and then the tinnitus slows.
Sometimes, I find myself obsessing about the noise, or LISTENING for the noise when I don't hear it for a while, to see if it is still there... and then I hear it again and can't get rid of it. Its a terrible cycle.


Have you had any luck finding out whats going on with you??? Id' love an update

 

[Karen]

Hi, Kara,

I'm so sorry you're having this problem, too. I've heard of other women whose pulsating started shortly after giving birth. There are a lot of changes that your body goes through around that time, both hormonal and circulatory. It could have had something to do with the increased blood flow that occurs during pregnancy, followed by the changes after giving birth.

At any rate, the pulsating is very scary and hard to deal with. I have pulsatile tinnitus, too, that occurred after I took a blood pressure drug for the first time. Pulsatile tinnitus often is vascular in nature; that's why doctors often order tests such as CT scans, MRI's, and carotid Dopplers, to check for any obstructions/changes in the head and neck areas.

It is possible that, since yours started right after giving birth, that it might eventually go away on its own. But it's good that you're going to see an ENT in May; maybe he will be able to give you some answers. Have you ever heard of idiopathic intracranial hypertension (IIH)? For some people, many of them women, their pulsatile tinnitus is caused by this ailment. Here is a link to some information about it:
http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension
You could ask your doctor to check to see if this may be a possible cause of your pulsating.

In the meantime, please try not to worry or become anxious about your PT. Remaining calm will help your PT to settle down, too. The best thing to do is try to get enough sleep, distract yourself wherever possible (a new baby is distraction enough!), and find ways to calm your anxiety. I've found that taking magnesium helps me, and takes away a lot of the shaky, vibrating feelings that go along with the pulsating.

I wish you well, and hope you'll update us after your doctor appointment.

Karen

 

[Laura89]

Hey Kara, I think you are also a member of the whooshers Facebook page!

Well, Macrobid was the only antibiotic I took for the infection. For the past 2 years I have been dealing with bladder infections. They wanted to put me on cipro, they actually gave the prescription, but I did not take it. They also wanted to give me prescription sleeping pills but again I did not take them. I will not take any drugs unless is life/death situation or unless the reason of my PT is found and is guaranteed that will help me with it.

I hate how they referred you to an ENT when Pulsatile Tinnitus is often not related to ear issues. I have no hearing loss, or at least is not significant...I haven't noticed in the past 7 weeks any changes in my hearing. I also got 2 hearing tests both came back fine. ENT thinks my carotid artery is abnormally close to my ear. BULLSHIT.

The results of the MRI were not very good, my GP said: I wanna refer you to a Neuro because some parts of your brain are not normal for your young age. (25). She also doesn't think the MRI findings are related to the PT. But I mean, what does she know, she told me I had an ear infection when all this started.

So I am waiting for the neuro to call me for an appt. Apparently the ENT also referred me to another ENT for a second opinion, but also waiting for them to call me, if you are not dying it takes a bit for them to see you, at least here in Canada.

I can totally understand how you feel Kara, when this first started I was VERY VERY anxious, I could not eat, I could not sleep, I slept in my bathtub because the fan noise of the bathroom helped me a little bit. And then I started wearing one earphone in that ear with youtube nature sounds, wave sounds. Mostly I sleep in my bed now next to my partner lol, and some days when the PT is not as bad I don't mask it. But I do wake up during the night.

Last friday the noise was gone all night! say what! I was very happy, but then came back. yesterday the noise was gone for 2 hours even when I lay down on my stomach! (usually the noise is the worst when laying down). You gotta be positive, you gotta get yourself back up after a bad day, after a crying session, after an anxiety attack. Its hard. At first I avoided bending down, moving too much etc. But I can't let that stop me from doing stuff.

I do take Melatonin and Passionflower extract to sleep, I drink decaf chai tea at night. I see my acupuncturist 2 a week, (he is also a friend so is not very expensive for me). I avoid stimulants, alcohol, coffee, marijuana (oh how I miss a lil joint for my mountain hikes or bike rides :/).

Hang in there, and if the ENT doesn't help much don't be bummed out about it. I actually think you should be seeing a vascular specialist or a neuro, or something like that. If the neuro doesn't solve this for me I won't stress about it. At the moment I am trying to learn to live with this, accept it as part of me in a way, because for the past 7 weeks ir has robbed me of joy and I am very tired of that. Fuck that! Life is much more than a noise in my ear.

 

[Laura89]

Hey @alifalijohn

I believe we talked via private message?

My symptoms are actually worse, I only took the antibiotic for 4 days, so I don't know if that was the cause. I also have vascular tinnitus which is completely different from tinnitus and the treatments are very different too, so its very important to distinguish between the two, as PT can be potentially dangerous. But yeah basically I have a lot of head pressure and a whooshing sound in my hear that I can stop or change volume if I press my neck.

I am currently investigating and being very pro active about getting more tests done etc. I hope you feel better soon, I know it's tough but it does get better coping wise. hugs

 

[alifalijohn]

Hey @alifalijohn

I believe we talked via private message?

My symptoms are actually worse, I only took the antibiotic for 4 days, so I don't know if that was the cause. I also have vascular tinnitus which is completely different from tinnitus and the treatments are very different too, so its very important to distinguish between the two, as PT can be potentially dangerous. But yeah basically I have a lot of head pressure and a whooshing sound in my hear that I can stop or change volume if I press my neck.

I am currently investigating and being very pro active about getting more tests done etc. I hope you feel better soon, I know it's tough but it does get better coping wise. hugs

Thank you for replying..All the best to you, going tfor my Mri tomorrow, scared1, do you get dizzy and wobbly, I may have ask you this question. I am not sure what cause my T ..firsr tought it was the Microbid, now I am not sure..keep in touch

Huggs to you!

 

[alifalijohn]

Hey @alifalijohn

I believe we talked via private message?

My symptoms are actually worse, I only took the antibiotic for 4 days, so I don't know if that was the cause. I also have vascular tinnitus which is completely different from tinnitus and the treatments are very different too, so its very important to distinguish between the two, as PT can be potentially dangerous. But yeah basically I have a lot of head pressure and a whooshing sound in my hear that I can stop or change volume if I press my neck.

I am currently investigating and being very pro active about getting more tests done etc. I hope you feel better soon, I know it's tough but it does get better coping wise. hugs

I did have a lot head pressure, plus wobbly feelings , like I am tipsy or just got off the boat, I figured this mst bb cause by the microbid, right now , I am not sure keep in touch Huggs

 

[shalu186]

hi all,

My pulsatile tinnitus started in my right ear when i was pregnant. The doctor said it ill go away after my delivery.. but it did not go.

now it is two years am suffering. my tinnitus is constant. If my press my neck it stops.

I had MRI brain scan without contrast, it came back normal. My doctor was not able to find a cause. IS this a serious problem?

I have a daughter just completed one year.. I do not want to die leaving her alone

If anyone knows about my symptoms please reply as soon as possible.

Thanks...
Lavanya

 

[Karen]

Hi, Shalu186, and welcome!

I have pulsatile tinnitus, too, in my right ear only. This is a mysterious condition, with many possible causes, and it's a good idea to get checked out by a doctor, as you have done. Did your doctor suggest any sort of additional tests, or refer you to a specialist? There are other tests that you can get to make sure there is nothing wrong. I've had an MRI and an MRA with contrast, as well as a CT scan, and a Doppler of my carotid arteries. So far, nothing has been found. Other tests include eye exams, CT scan with contrast dye, and in some cases (if warranted) an angiogram. If you are not satisfied with your current doctor's findings, you might try going to a specialist, such as a neurologist, to get checked out.

I've heard of pulsatile tinnitus starting during pregnancy and not ending after the birth of your child. For some women, I understand that it does go away on its own. But if it doesn't, it might be worthwhile to have additional testing, or at least to go to another doctor.

One condition that causes PT is IIH (benign intracranial hypertension), which has to do with additional fluid around the brain. You might want to Google this condition to see if any of the symptoms match yours, then go to a doctor to be checked.

Also, you might want to check out Whooshers.com, which is a website dedicated to pulsatile tinnitus. There, you'll find information about what to say to doctors, and read stories of other people with this condition. You can also join a Whooshers.com Facebook group for other people, like us, who have this condition.

Good luck, and please keep us posted on how you are doing. I understand what you're going through right now!

 

[shalu186]

Thanks Karen...

Will go to another doctor and let you know.......

Regards,
Lavanya

 

[Lous22]

Did any of you figure out the cause of your pt???? Mine also started after I gave birth and I have yet to find an answer. I hear the sound when my head is in certain positions.

 

[Gabrielle1987]

It seems like my started shortly after a tooth extraction actually I got 5 removed at one time then it whent away during my pregnancy 2016 and came back two months after having her! Help! Ct is clear.

 

[Karen]

@Gabrielle1987,

It might have to do with hormonal changes from pregnancy, and then the birth of your child. Another possibility is that you are still retaining fluid in your body. You could ask your doctor about IIH (benign intracranial hypertension).

I wish you well, and hope you find the cause of your PT. But if not, it is possible to live with this condition. It takes time to adjust and acclimate to it, but it can be done.

Best wishes,
Karen

 

[Gabrielle1987]

Lord knows i hope its that simple lol its making me crazy it makes me have panic attacks