High Pitched Pulsatile Tinnitus — Visited a Neurologist — Here Is What He Said

[melbournejeremy]

Hi Guys,

Finally after months in the queue I had my Neurologist appointment. He sort of reviewed the MRI quickly and did a few basic neurological tests like touch my nose, lift my left, listen to a tuning fork and he viewed my retina.

Overall he was not sure and recommended an MRV for completeness of images. He also gave me a prescription for Topamax @25mg per day. I haven't filled it yet. He questioned me about headaches and sort of thought perhaps the tinnitus/pulsatile tinnitus was connected via that cross-talk in the DCN and that perhaps headaches and the tinnitus were connected. Or possible IIH (idiopathic intracranial hypertension).

Overall not an enlightening experience as I am sure many have had. No real answers. Just hit and miss. Try this. Try that.

Once again proving that no one has any idea and it's just a process of elimination and guess work...

Thx.

 

[Laurie1961]

At least he made an effort and at least your concerns were taken seriously and not written off as an auditory delusion.
While it might feel like hit or miss and is guess work, it is an educated guess work it sounds like to me. I think if it were me, I'd fill and give the prescription a try. After a decade of this hell I have looked into a lot of things-- to me the ingredients in the drug he prescribed- the magnisum, the iron oxide and the titanium oxide - make a good deal of sense.

 

[nuno1976]

What is the purpose of Topamax?
It's not prescribed for IIH - Idiopathic Intracranial Hypertension?

 

[Greg Sacramento]

He questioned me about headaches and sort of thought perhaps the tinnitus/pulsatile tinnitus was connected via that cross-talk in the DCN and that perhaps headaches and the tinnitus were connected. Or possible IIH (idiopathic intracranial hypertension).

Possible, but what else could this break down to: Circulation - vascular in nature. Possible vertebrobasilar insufficiency.

There's 60 possibilities for pulsatile T in which many are rare.

Slowly bend head down to each side and see if pulsatile sounds slow, but don't move head forward.
Try some free and easy treatments
****** Try using pillows under legs while sleeping. Have lower legs above heart level. Real important. Give it a try.
**Drink more water.
**Keep jaw relaxed.
**Get sleep.
**small pillow under neck while sleeping.
** posture focus.


Next steps:
Have iron and magnesium levels checked levels.
Blood work for infection including a thyroid panel.
EKG - Blood pressure check and saturated oxygen - the little finger clip. Treadmill test.
MRA ultrasound for persistent stapedial artery, veterbaral artery, carotid artery and cervical canal stenosis.
Thin flexible mouth guard if needed. Dental check.
Salvia gland and facial nerve consideration - this can include 120 oral reasons.
Ear wax check and middle ear myoclonus.
Neck muscle consideration - SCM muscles.
Control situation reactive hypertension.

 

[Halsy]

Jer, have you seen a neurotologist yet? You need to see one, buddy. Neck Xray done yet? That HAS to be done. I saw eight doctors and tests out the ass until I finally met the right guy who found the problem within 2 minutes of meeting me. Sucks but you have to keep plugging away at it until it stops or you get lucky with the right doc. If his initial assessment is that it isn't any of the common conditions that cause PT than he's more than likely right. So move onto stage 2 which is the neurotologist. And a neurosurgeon - if the neck Xrays warrant it. Like Greg said there's all kinds of ways to this bloody condition so unless you're really lucky you shouldn't expect one doctor to find the problem right out of the gate. It's a process. A shitty one, but one that you have to go through unless you're a billionaire.

 

[Vin]

Jer, have you seen a neurotologist yet? You need to see one, buddy. Neck Xray done yet? That HAS to be done. I saw eight doctors and tests out the ass until I finally met the right guy who found the problem within 2 minutes of meeting me. Sucks but you have to keep plugging away at it until it stops or you get lucky with the right doc. If his initial assessment is that it isn't any of the common conditions that cause PT than he's more than likely right. So move onto stage 2 which is the neurotologist. And a neurosurgeon - if the neck Xrays warrant it. Like Greg said there's all kinds of ways to this bloody condition so unless you're really lucky you shouldn't expect one doctor to find the problem right out of the gate. It's a process. A shitty one, but one that you have to go through unless you're a billionaire.

What was the problem he found within 2 minutes of meeting you? Did he successfully resolve the issue? Thanks.

 

[melbournejeremy]

Hello, the neurologist could not understand how I could change the noise left to right by pushing my jaw left and right and making it quieter with jaw clenching. All he could think was possible IIH but could not explain how that would relate to the jaw movements and the high pitched pulsing/tinnitus.

I think neurologist mostly deal with IIH/migraines most days and to him tinnitus is associated with migraines and IIH.

I haven't pursued it beyond that in terms of specialists.

No resolution/reduction/increase. Same for the last 15 months or so.

The only way I get any respite from it is with benzos and really who wants to chew down benzos all day right...

 

[linearb]

The only way I get any respite from it is with benzos and really who wants to chew down benzos all day right...

It's definitely suboptimal, but any port in a storm. I resisted benzos for years for this (because of prior history and knowing how terrible it is to withdraw), then used them infrequently. Lately I am using them on a more regular basis (daily clonazepam) again and I am dreading what will happen if they stop working or I need to go off them for other reasons, but... until one of those things happens, fuck it, carpe diem.

I should point out that tinnitus is just the biggest bullet point on a myriad of reasons I am functioning better on Klonopin than off it, and also that I have a history of long-term benzo prescriptions that predates the tinnitus and goes back to when I was a teenager -- so it's quite possible my brain just sort of developed to "need" them.

Basically, if you can find a way to avoid benzos and still have a decent quality of life, that's vastly preferable, but if you can't.... well.... there's worse things than taking a pill, that's for sure. Especially one that makes you feel good!

I tried various other drugs (never topamax, but I did try Cymbalta which is pretty similar); none of them helped, and many of them caused problems which at least, in the short term, seemed pretty severe and obnoxious. None of that with benzos, I just sleep a little too much and am, of course, nicely dependent on them by this point after ~3 months of daily use. No decrease in efficiency noted, and in that same timeframe I've gone from someone who was drinking too much on a regular basis, to someone who barely drinks at all.