Can We Really Habituate to Pulsatile Tinnitus?

[Lost life]

Can I really habituate to pulsatile tinnitus or is it just a bunch of BS to make us have some kind of hope?

If you have habituated to pulsatile tinnitus, can you please tell what it feels like?

 

[billy43]

Yes you can habituate to pulsatile tinnitus. I have pulsatile tinnitus. Over 4 years now. Crazy hissing noise 24 /7 in sync with my pulse. First year was absolute hell. Things got better and better over time. Once or twice a day it may distract me but over all I'm doing great and thank God for that. Things will get better for you and there's always a chance it goes away. Good luck with things.

 

[Karen]

I have partially habituated to pulsatile tinnitus. I've had it for over 7 years now, and it did take awhile, but things can improve. I have both a high-pitched hissing tinnitus and pulsatile tinnitus 24/7 (right ear only). I've learned how to live with it as best I can. What works best for me is distraction (keeping busy and keeping my mind occupied), watching my diet, and exercise. Also, keeping my blood pressure as low as possible, and remaining calm.

At night, it is harder, but I've learned to live with it. I try to stay up until I'm really sleepy, then read or meditate right before bedtime. Getting a good night's sleep really helps, too.

My tinnitus and pulsatile tinnitus are usually the quietest in the morning, so I try to get my most productive work done then. Also, in the evening after eating dinner, it usually seems calmer.

 

[DirM]

Yes, you can adjust. I have had pulsatile tinnitus for almost 18 months, caused by TMJ disorder, and I have used braces and therapy to reduce it from VERY LOUD (7/10) to 2/10, so it has been easier lately.

Now my pulsatile tinnitus is in sync with my heart beat, so when it was VERY LOUD I decided to think of it as a heart monitor - like in a hospital - and if you are in a hospital you WANT that beep-beep to keep going because if it goes, you go (my pulsatile tinnitus is very high pitch so sounds exactly the same, so if you have the whoosh it won't sound the same, but you can use the same concept).

I took comfort in this monitoring my heart beat, thinking as I wet to sleep that I could tell my heart was still going strong. After a few months I stopped noticing it.

 

[Kratos]

Is pulsatile tinnitus also generated in the brain like normal tinnitus?

I have read some cases of pulsatile tinnitus can be cured with surgery, freeing the auditory nerve from the source of the pulsatile tinnitus.

 

[Halsy]

Is pulsatile tinnitus also generated in the brain like normal tinnitus?

I have read some cases of pulsatile tinnitus can be cured with surgery, freeing the auditory nerve from the source of the pulsatile tinnitus.

Yes, because pulsatile tinnitus is caused by neurological damage, it has nothing to do with your ears or the auditory canal. It can be caused by a lot of different things which makes it hard to pin down. MCS - microvascular compression syndrome - (which they suspect I have) is when a vein shifts inside your brain - and it happens - and comes into contact with one of the auditory nerves - usually #8. So it picks up the blood pumping through said vein and presto that's pulsatile tinnitus. It can also be cause by a fistula - blood clot, a collapsed transverse sinus, white matter, broken veins and capilaries, trigeminal nerve damage, vascular loop compression - a vein that gets twisted. And there's still more but those are the main causes.

Most times these things resolves themselves in about 6-18 months. And other times it's as a simple as getting an alcohol injection to break up a blood clot, or complicated as major surgery to move the vein off the auditory nerve. So cross your fingers and hope it resolves itself.

The most important thing in the meantime is diet, exercise, and stress management. In short, eat right, exercise and mind the stress. Keeping your blood pressure and stress down makes a world of difference. If you drink and smoke, quit. Immediately. Cut out the junk food or keep it as minimal as possible. Try to eliminate sugar and salt as much as possible too. Never forget the body is ALWAYS trying to heal itself, so the more you help it along the better it can do that. Look at getting yourself on an anti-inflammation diet. Going for physio - osteopathy and acupuncture specifically - can help immensely too. Do yoga, soak in a hot tub, long hot showers, all help.

And yes, you can habituate to just about anything. The more you do the above mentioned stuff the better off you'll be. The first six weeks or so of my pulsatile tinnitus was so bad I was literally suicidal and didn't know if I'd make it. 4 months on and it's still irritating but I can deal with it just fine. For me I usually have 3 or 4 good days and then one where it's a but of a PITA. And that's usually because I slip up and eat some junk food or neglect exercise or I'm stressed about something else. When I'm on point with diet, exercise, and stress management a lot of the times it's so mild it's like it's not even there. It can and will get better but only if you put in the work. Good luck!

 

[Lost life]

I have had every test there is and they found nothing. @Halsy, so if they think MCS, what did they say they wanted to do about it?

 

[Halsy]

I have had every test there is and they found nothing. @Halsy, so if they think MCS, what did they say they wanted to do about it?

The question is did you see the right people? When mine started I immediately started doing medical research. If you're reasonably intelligent, dedicated, and capable of critical thinking there's nothing a doctor knows that you can't learn yourself. Going to see a neurologist or ENT isn't enough - especially for pulsatile tinnitus. It's damnably hard to pin down even for specialists, and unless you're seeing someone who knows what to look for the odds are nothing is going to reveal itself. You may understand how a car engine works in principle but it's an entirely different matter once you get under the hood and are trying to isolate a specific problem. It's entirely akin to you doing it versus a qualified mechanic who knows what he's doing. When you start reading a lot of med papers the one thing you glean from the case studies cited is that shit gets missed constantly, more often than not, point in fact. People can have this problem for years simply because something gets overlooked. If you haven't seen a pulsatile tinnitus specialist - and it's a neurologist who specializes in pulsatile tinnitus specifically - than you haven't been properly assessed and won't be until you do. If you're in the US you have a lot of options. Off the top of my head they have pulsatile tinnitus specialists out in Ithaca NY at Cornell University. I'm I'm sure there are plenty more all over. Just search and ask around on the forums.

Don't forget pulsatile tinnitus is NOT tinnitus per se. The symptoms are similar but the cause is vastly different. Acoustic based tinnitus is due to auditory damage as it affects the DCN. Pulsatile tinnitus is a neurological problem with an underlying neurological root - all the stuff I mentioned above. It can be treated and resolved medically, whereas acoustic based tinnitus cannot, only managed - so far.

For MCS specifically it's generally major surgery. They go in and depending on the breaks either move the vein off the nerve or they interpose a layer of muscle between the vein and nerve. Like all surgery it can be lethal but I haven't read about any such cases and virtually all surgeries seem to be either successful or resolve it entirely or enough for people to go on with their lives normally.

Remember, the vast majority or tinnitus or pulsatile tinnitus cases resolve themselves in a 6-18 month period however. Some of the people you're meeting here who have had it long term are the unlucky ones for whom that hasn't happened. They're - medically speaking - in a very tiny minority. So, annoying as it is, try not to stress about it as the odds are in your favor. Meanwhile seek other qualified medical opinions from a pulsatile tinnitus specialist.

 

[Grete]

I feel like I've gotten used to my regular tinnitus in 1.5 months. The sound of it has gotten much quieter and I pretty much don't hear it most of the time. I can't say the same about pulsatile tinnitus. I feel like it is as loud as in the beginning and I have not gotten used to it. It annoys me most of the time, when I am not in a noisy environment. Is it possible to tune it out?

 

[Samy]

Hello @Grete! How are you? Do you still have the pulsatile tinnitus?

 

[Grete]

Hi, Samy! I'm not doing good. Pulsatile tinnitus is still present all the time. I got MRI and ultrasound tests, but they did not show anything abnormal. I guess I just have to live with this torture until the end of my life =(

 

[Wrfortiscue]

Hi, Samy! I'm not doing good. Pulsatile tinnitus is still present all the time. I got MRI and ultrasound tests, but they did not show anything abnormal. I guess I just have to live with this torture until the end of my life =(

You'll eventually get used to it unless it constantly changes behavior.

 

[Steph1710]

Hi, Samy! I'm not doing good. Pulsatile tinnitus is still present all the time. I got MRI and ultrasound tests, but they did not show anything abnormal. I guess I just have to live with this torture until the end of my life =(

An MRI won't show much, if anything at all. What you need for a diagnosis is a angiogram with contrast dye, and for the results to be read by a neuroradiologist. That is the only way really. I'm now on the waiting list for one out of two operations to stop my pulsatile tinnitus. Also, it will be an ENT who can help, but they have to specialise in pulsatile tinnitus - otherwise there is no point in seeing one.

Most of the time it is vascular in origin. So, it's the blood circulation around the brain.

The operations don't tend to be complicated - my first operation doesn't even require an overnight stay in hospital.

Though it seems like I'm one of the lucky ones to be getting it sorted, it has taken me over three and a half years of fighting, writing complains, being told there is "nothing wrong", and seeing a million different people to get a proper diagnosis. You can get it sorted, it just depends on how much time and energy you can put into it. Basically, I wouldn't take no for an answer - but that's just who I am.

 

[Steph1710]

You'll eventually get used to it unless it constantly changes behavior.

I dunno man, "normal" tinnitus and pulsatile tinnitus are very different from each other. My pulsatile tinnitus makes my whole head pulse. It's as much of a feeling as it is a sound... if ya get me?

 

[Wrfortiscue]

I dunno man, "normal" tinnitus and pulsatile tinnitus are very different from each other. My pulsatile tinnitus makes my whole head pulse. It's as much of a feeling as it is a sound... if ya get me?

Yeah I have it every morning and night lol. Bzzz bzzz bzzz, it's an electrical pulsating buzz.

 

[Steph1710]

Yeah I have it every morning and night lol. Bzzz bzzz bzzz, it's an electrical pulsating buzz.

That's not pulsatile tinnitus - that's tiny ants eating away at your brain... duh!

 

[Steph1710]

@Wrfortiscue, we've really gotta stop hijacking threads lol.

 

[ZFire]

You'll eventually get used to it unless it constantly changes behavior.

Agreed. As long as it's constant and not ever changing, it's much easier to get acclimated to it IMO. A tinnitus that constantly changes is challenging to get used to.

 

[Wrfortiscue]

Agreed. As long as it's constant and not ever changing, it's much easier to get acclimated to it IMO. A tinnitus that constantly changes is challenging to get used to.

Yup, my old straight tone tinnitus was a joke lol. Got used to it in weeks and it was fairly loud in the beginning.

We got to push on through and believe we will habituate. Hopefully these new treatments can give us a safety net to look forward to.

 

[Wrfortiscue]

That's not pulsatile tinnitus - that's tiny ants eating away at your brain... duh!

Damn is that why I spend hours staring at nothing drooling? Lol.

BTW, getting used to something is not the same as habituating. I just don't panic, but that doesn't mean it DOESN'T suck.

 

[Steph1710]

Damn is that why I spend hours staring at nothing drooling? Lol.

And you wonder why the wife won't come near you.

BTW, getting used to something is not the same as habituating. I just don't panic, but that doesn't mean it DOESN'T suck.

100% agreed! I'm accustomed to my illnesses, but I'm not habituated to them. You summed it up perfectly.

 

[Sam Marksmen]

You can!

 

[Steph1710]

major surgery to move the vein off the auditory nerve.

Brilliant post! I agree with most of it except the major surgery bit which I've quoted above.

I am on the waiting list for the surgery to move the vein off the auditory nerve. The surgery is pretty simple and doesn't take very long to do. It's a day-in-day-out operation - no overnight stay necessary. My surgeon said it's a pretty routine operation.

In fact, out of all the surgical interventions, that one is probably the simplest. I am also having a stent put in to open up the narrowed transverse sinus - now that is the complicated one. Not looking forward to it!

 

[Psych]

I really appreciate this thread! It got me through a very bad time when I was experiencing pulsatile tinnitus while staying at someone's home, on a comfy cot. I think the fact that the cot and pillow were kind of thin contributed to being able to hear my heartbeat. I found out that if I used my body pillow for a head pillow, the pulsatile tinnitus went away! So, when I got back home, I bought another body pillow, and now, even though I do hear a more faint pulsatile tinnitus sound sometimes, I am better equipped to deal with it, in part because of the advice, support, and encouragement I got from you all.

Thanks so much, and I hope to be an encouragement to others!