Long Time Reader/First Time Poster

[grnigrly18]

Hello,
This is my first time posting here, so please excuse my very long-winded PT experience.

My PT started in Oct. 2015 as a "rushing" sound in my right ear whenever I would bend down or move my head quickly to the right or left. Within a few weeks, it turned into a constant "whooshing" sound, that I would describe as hearing a fetal Doppler in my ear at all times.

I went to an ENT fairly quickly and she diagnosed me with Pulsatile Tinnitus and recommended a CT angiogram of my head and neck. The results were negative. For 1.5 years I lived with the PT 24/7, until May of 2017 when it seemingly went away out of nowhere.

That lasted for 6 months until Oct. 2017 when it came back intermittently. I have experienced what I would describe as head pressure for many years and by this spring I was having a hard time functioning because of it.

An ER doctor thought I may have Pseudotumor Cerebri and I was sent to a neurologist. I had a lumbar puncture done May 2018 and the results were that I had increased intracranial pressure. I was put on Diamox right away and the PT diminished again. I could only tolerate the medication for a month before I had to stop it because of the side effects.

In July 2018 I saw a neuro-ophthalmologist in Seattle who is supposed to be one of the best in the state for Pseudotumor Cerebri. He examined me and looked at all my brain imaging (CT angio, MRI, MRV) and told me I DON'T have Pseudotumor and that my PT is idiopathic (yeah right). I have pretty bad TMJ problems and a hard bump under my right ear toward my spine.

Also, when I was a teenager I would get this odd, rhythmic clicking in my right ear when I watched tv, that was in rhythm with the tv sound. It went away for 10+ years but has come back over the past year. It will also happen when I have a phone up to my left ear.

The sound going in the left ear will cause a clicking in rhythm with the voice in my right ear, very weird.

On top of this and all my other health problems, I just found out I am pregnant. I am absolutely horrified thinking about all the what-ifs. If anyone has any similar experiences, please let me know.

I'm a wreck and I feel so lost and alone.

Thank you!

 

[DebInAustralia]

Hello,
This is my first time posting here, so please excuse my very long-winded PT experience.

My PT started in Oct. 2015 as a "rushing" sound in my right ear whenever I would bend down or move my head quickly to the right or left. Within a few weeks, it turned into a constant "whooshing" sound, that I would describe as hearing a fetal Doppler in my ear at all times. I went to an ENT fairly quickly and she diagnosed me with Pulsatile Tinnitus and recommended a CT angiogram of my head and neck. The results were negative. For 1.5 years I lived with the PT 24/7, until May of 2017 when it seemingly went away out of nowhere. That lasted for 6 months until Oct. 2017 when it came back intermittently. I have experienced what I would describe as head pressure for many years and by this spring I was having a hard time functioning because of it. An ER doctor thought I may have Pseudotumor Cerebri and I was sent to a neurologist. I had a lumbar puncture done May 2018 and the results were that I had increased intracranial pressure. I was put on Diamox right away and the PT diminished again. I could only tolerate the medication for a month before I had to stop it because of the side effects. In July 2018 I saw a neuro-ophthalmologist in Seattle who is supposed to be one of the best in the state for Pseudotumor Cerebri. He examined me and looked at all my brain imaging (CT angio, MRI, MRV) and told me I DON'T have Pseudotumor and that my PT is idiopathic (yeah right). I have pretty bad TMJ problems and a hard bump under my right ear toward my spine. Also, when I was a teenager I would get this odd, rhythmic clicking in my right ear when I watched tv, that was in rhythm with the tv sound. It went away for 10+ years but has come back over the past year. It will also happen when I have a phone up to my left ear. The sound going in the left ear will cause a clicking in rhythm with the voice in my right ear, very weird. On top of this and all my other health problems, I just found out I am pregnant. I am absolutely horrified thinking about all the what-ifs. If anyone has any similar experiences, please let me know. I'm a wreck and I feel so lost and alone.
Thank you!

Hi there,

I am so sorry to hear about all the stress you have been experiencing.

I can relate to your PT. I often hear a whooshing noise when I lean forward, and an intermittent white noise pulsation in my right ear, which I can modulate with jaw movements.

I presume you have been to www.whooshers.com

I see you have had an MRI and MRV. What were the results? My mother had a pituitary macroadenoma. Ive had similar issues with galactorrhea. Maybe consider this?

I used to suffer with chronic headaches. As part of a work up for benign intracranial hypertension, I had the diagnostic LP like you also. It was borderline high. My neuro at the time felt that given I was 'neurologically intact' that he wasnt wanting to proceed with anything more invasive (I wasnt aware of tinnitus at the time)

I too was told that if I had Benign intracranial hypertension, that I would be required to take diuretics. My headaches have dissipated over the years, but I know that head pressure you are describing.

What were the adverse reactions you experienced from the diamox?

The fact that your PT disappeared whilst on the diamox is telling. Are there safer alternatives to this that you can trial?

I know you have seen 'one of the best', but would you consider another opinion?

I also have tmj from chronic cervical facet joint arthropathy and probably dental work.

I found ultrasound therapy helpful to relieve the pain associated with tmj, as well as osteopathic adjustments.

Many here have consulted with dentists offay with tmj dysfunction.

That clicking in your right ear might be tensor tympani tensor syndrome. Try some magnesium. Or tinnitus, that is reactive (part of hyperacusis).

I can understand why you are feeling like a wreck. You have been through a lot.

I listen to anxiety hypnosis tracks and mindfulness meditations ie buddhify and headspace (free apps) as I suffer with anxiety and ocd.

Occasionally, I have cared for women (I am a midwife) who develop tinnitus. For some, the noise has disappeared following birth.

@Karen Maybe you could add your experience to this thread

 

[grnigrly18]

Hi @DebInAustralia

Thank you for responding! My CT angiogram, MRV and multiple MRI's were all normal.
I have hypoplasia of my left transverse sinus, but I've read that's fairly common. Other than that, all the scans have been normal.

I was actually diagnosed with the Pseudotumor Cerebri by a local neuroglogist and she sent me up to the neuro-opthalmologist in Seattle for a 2nd opinion. I am now going to be seen by a neurologist at the University of Washington and can hopefully get a 3rd opinion.

I've actually had TMJ issues for close to 20 years (I'm 30 now). Treatment was too expensive for my parents so it was never addressed when I was younger and now it's pretty severe. My jaw is completely out of alignment and shifted. Not even sure where to start as far as treatment. My dentist recommended a mouth guard at night, so that's about the extent of my "treatment". I almost wonder if my misaligned bite could be causing blood flow problems? I really don't know.

I really do appreciate all your recommendations!

Thanks again!