Pulsatile Tinnitus for Almost a Year

[Lunar Firefly]

I came across this website months ago but thought maybe this tinnitus would fade off before it became an issue but -- well, clearly it hasn't. I'm really glad this is here.. I think I'd have gone nuts if there weren't others to talk to about this.

To give a background of the mess I've been dealing with trying to figure this out, I first started to hear a low whoosh-pulse in my left ear and thought maybe I had water in my ear so I tried to treat that. Waited a bit, and without any improvement (after about a month) finally went to the doctor because it seemed rather odd. The doctor immediately told me to stop all activities, and not do anything that might raise my blood pressure or increase intracranial pressure. Well that put an end to looking for work, exercising, and everything I was actively doing to improve my life.

It all sorta went downhill from there. I found out later why he had me stop. He was concerned about aneurysms. They did the MRI which came back fine (it took 3 weeks to get in for one, and another week to get the results), then the Specialist was like 'Oh you're just clenching your jaw.' and sent me on my way. So several months later, beginning of January, I was at my computer and laughing.. just laughing.. Nothing strenuous and I got hit with vertigo. Mind you the tinnitus had worsened at this point. It had been moving into my right ear initially as well, but by this point it was becoming more frequent in the right ear.

I waited for a bit to make sure I was okay, then went to bed. When I woke the next morning I couldn't walk. I had to get my roommate to drive me to the ER because something wasn't right. They tested me for a stroke, and waited to look at the MRI that was done, gave me a couple different medications for the vertigo and sent me on my way.

I went back to the specialist, and he denied ever giving his original diagnosis. He wanted to send me to a neurologist, but I insisted that he get an MRA done because it was initially denied by the insurance company, and I explained that when I got upset or stressed, the tinnitus worsened. It moved into both ears, and got really loud. So he ordered it. After some complications (and a third MRI/MRA) we got the results back and everything looked normal.

Now he's saying he thinks it's something called Idiopathic Intracranial Hypertension. Apparently a rare condition that actually matches a lot of my symptoms. But from what I understand, the only way to test for it, is a lumbar puncture and I'm really, really not okay with this.

So I've been kind of sitting on my hands with it. But honestly the tinnitus is still getting worse. And now with my shoulder injury flaring up, and affecting my neck, I have noticed an increase in the volume of the pulsing. It's driving me insane. I barely slept last night.

There are other symptoms that have come up since this started, but they've been dismissed by the doctors and specialist. The specialist almost dismissed the vertigo but I was pretty insistent that he consider it as a factor.

Sorry for the long rambling. There's a lot that's happened surrounding this and all of it has been frustrating.

 

[Karen]

Hi,@Lunar Firefly,

I just read your post, and can certainly understand how you feel. I have pulsatile tinnitus, too, but I haven't yet found the cause of mine, after a lot of doctors and tests. Mine was apparently caused by a blood pressure drug, and has not gotten any worse, so I have been living with it.

Idiopathic Intracranial Hypertension is a fairly common cause of pulsatile tinnitus, from what I've read. There are many factors that could cause it, but it's because of fluid that accumulates in the head. Have you recently had weight gain or weight loss, or have you had a baby? Sometimes it could be due to changes like that, and I've even heard that some people's PT improves when they lose weight.

What you could consider doing is going to another doctor for a second opinion. Then, if that doctor also believes it's IIH, you could more seriously consider the lumbar puncture.

I'm sorry you've experienced a bout of vertigo. I experienced that, too, (more than once) when my PT first started, and I also had a mild form of dizziness that just wouldn't go away. Now, almost 6 years later, the dizziness and vertigo are gone, although I still have both tinnitus and pulsatile tinnitus in my right ear only.

I wish you well, and will be interested in hearing what you decide to do. Take care, and please know that there are others here, like me, who will understand your condition.

Very best wishes,
Karen

 

[Lunar Firefly]

Hello Karen,

Thank you for replying. I actually was losing weight when it started. I was doing really well, too. You mentioned the blood pressure medicine and I recall reading that IIH can be caused by medication. I'm on a few different prescriptions with some added stuff due to my shoulder.

Today the pulsing has been intense in my left ear, and there's a low ringing constantly, and a wind-like undertone. Like what you hear when you hold a seashell to your ear. I've been hearing crackling, too. Have you ever heard that before? It's so odd. It's like there's air or something in my ear, but I never heard it until a couple months or so, after being diagnosed with the pulsatile tinnitus.

I'm going to set up an appointment with my primary physician. She wasn't the one who diagnosed it or referred me to the specialist, and see what she thinks or suggests. Honestly the longer this goes on, the more I wonder if it is IIH. What makes me think it fits the most is the fact when I get stressed, the pulsing gets VERY loud, moves into my right ear as well, and my head becomes hot like there's warmth radiating from inside my scalp mostly on the back and top back. Then in a lot of cases, I really don't feel all that good and need to go somewhere to sit down and relax.

Has sugar ever made the symptoms worse for you?

I keep hearing that people have had this for years and the idea is kind of scary. How do you deal with it for so long? The constant pulsing, or ringing or whatever sounds you may hear.. How do you ignore that? I am having so much difficulty tuning it out.

Thank you for all your advice and understanding. Take care.

 

[Baxette]

Hi Lunar Firefly-
Your story sounds a lot like mine but I've had PT for a little more than two months.

My PCP referred me to a neuro for evaluation of peripheral neuropathy in my lower legs. The drug he put me on caused my brain to liquefy so I weaned off and refused any other meds. I too had recently lost weight and stopped eating obviously sources of sugar. The neuro thought giving up sugar would reduce inflammation and reduce neuropathy which it did not.

Then the PT started. My PCP referred me to an ENT who ordered an MRI of the brain and Dopplers. They were negative. She said she was baffled.

At the time this started I was in physical therapy for a double level disc herniation in my neck which was causing numbness and tingling in my arms. After a sadistic therapist shamed me into an exercise well beyond my fitness level the PT quadrupled! I was furious at myself for agreeing to even do that exercise !

I also have TMJ but never followed up on it. My jaw clenching causes migraines. I thought about pursuing treatment but is is very expensive and not covered by insurance.

The ENT said to stop Advil. I did no change. She referred me to another Hospital that had tinnitus retraining therapy program. I was being screened for the program and was told my PT needed further evaluation as it was vascular in nature.

The new ENT spotted something in the report of my brain MRI which he thought was IIH. He told be to go back to the neuro who examined me and looked over the report. He pretty much laughed at the ENT's presumptive diagnosis and ruled out IIH after insulting my ortho as well. So I went back to the ENT who referred me for two more CT scans which were negative. He left me a message saying the only test left was an angiogram which I do not want to have.

So now I can enter a long program to retrain my brain. At this point I doubt I will. I can tell you that since I've stopped panicking over the PT I'm getting closer to just accepting my condition. I am tired of chasing the cause. It just intensifies my anxiety which causes my PT to escalate.

I am annoyed I have this condition. I cherish silence and mourned never being able to experience it again. I am nowhere near habituated to this beast. I am just hoping it bothers me less as time passes. Being busy helps. Caffeine and physical exertion ratchets up the noise. I am going to try to just live my life. I am depressed I have PT and that there is basically no cure.

Karen is a port in the storm. I'm an email away if you want to talk.

Alexandra

 

[Karen]

Hi, @Lunar Firefly,

To answer your question about sugar -- no, mine isn't really affected by it. In fact, foods don't seem to affect mine one way or another; my T and PT are both fairly constant.

It is possible that you have IIH, from the symptoms you've described. I'm glad you're going to see your primary care physician, if only to rule out any dangerous conditions (most people's PT isn't dangerous, by the way. It's mostly just annoying).

How have I been living with it for so long? Well, the other bad symptoms, such as the dizziness, vertigo, and constant feeling of pressure, have all gone away now, and I'm left with the tinnitus and pulsatile tinnitus. I've had so many tests and been to so many doctors, that I finally got to the point that I decided I'd try to live with it, at least for now. So, I keep myself busy during the day in order not to focus on it, and I try to follow a healthy diet and exercise routine. Keeping one's health steady and blood pressure on an even keel does seem to help. Also, I take some supplements that help me, including NAC and magnesium chloride.

Please do let us know what your primary care physician has to say, and if he/she orders any additional testing for you.

It is possible to live with this condition, as long as it remains constant and doesn't change too much.

Very best wishes,
Karen

 

[Michelle Eales]

Hi Lunar

Go for the Lumber Puncture, I have just had one and I am whoosh free! As they were draining the fluid as mine was 24, they drained it to 10 and as they were doing this the whooshing stopped! I have my sanity and life back, I am recovering at home as I have the head from hell a bit of sickness and a bruised back, but worth all of this to be able to sleep and hear nothing is a miracle! Be brave and go for it. Michelle.

 

[Karen]

@Michelle Eales

That is great news! I know you must be so happy to be whoosh-free, and I'm sure it is worth any inconvenience that the lumbar puncture might have caused.

So happy for you!!

Karen

 

[Lunar Firefly]

Gosh I am so sorry for the delay in responding to all these. I saw them some weeks ago but things have been extremely hectic here and things with my roommate have become very difficult so I'm trying to get out of a bad situation.
The added stress isn't helping with the pulsitile tinnitus in the slightest.

So I'll go ahead and toss in some updates real quick since I think this may affect a few opinions on things. I'm not sure if this also relates to IIH, but if it's a big indicator, then I'd like to know.

A couple weeks ago over the weekend I noticed I was becoming light sensitive. I was also somewhere over the course of the weekend, where the lights were extremely intense (or so they felt to be?) so I was often shielding my eyes to deal with them, squinting, or hiding my head completely. I'm already light sensitive to a degree but this was pretty unusual.

That Monday I went in for a retinopathy which my primary physician had me get to make sure that if it was IIH, it wasn't potentially hurting my eyes. Everything looked great. No swelling in the optic nerves, no abnormalities in the vessels. Nothing seemed odd at all. The eye doctor checked my peripheral vision as well, though despite the fact I had an eye exam and a new prescription only a year ago, he said I probably needed a new one already which I also thought was unusual since my last one after almost three years, had barely changed.

I don't know if it started that evening, or Tuesday, but I know it began early that week, when I started to notice in my left eye, what I think is a floater which would fluctuate like a star or spiral, and was black in the center of my vision. I thought it odd, and noted it showed up more when I looked at my monitors, or in the bathroom like on the floor or the walls. So I called the doctor to see if I could just go to the eye doctor and see if they could look, or if I needed another referral, and ended up having to wait until this past Thursday to see the doctor again.

By the time I got to see him, I had developed a blind spot not in the absolute center of my vision, but ever so slightly off to the left side of it. I can look directly at something with text, and notice it and it's a white-gray in color.

I have the tinnitus primarily on the left side.

This is scaring me.. The doctor is concerned enough that he's sending me back to the eye doctor, and he asked to make sure the specialist I was originally sent to, had done an MRI to look for any abnormalities in my brain. Masses, aneurysms, etc.. He had done both MRI and MRA and both were completely normal.

We're HOPING it's stress related.. My tinnitus has been extremely bad and there's no telling what else might be affected if the stress is causing it to be this intense.

I'm not sure what's going on but I just want whatever is happening to not get any worse at this point.

Thank you everyone who has replied and congrats on being whoosh free, Michelle!

I hope everyone is well and appreciate all the support and feedback from everyone. Take care.