Maurice H

In June 2022 my Pulsatile Tinnitus started. I didn't know that it was called Pulsatile Tinnitus at the time, I thought it was regular tinnitus, and after researching my symptoms I learned that since my tinnitus is pulse-synchronized I have Pulsatile Tinnitus.

This is in both ears, though the right ear is louder (and more pronounced) with the wooshing noises. This Pulsatile tinnitus is 24/7 with no breaks. It is debilitating and has caused extreme anxiety and panic attacks on a daily basis (I already suffer from Anxiety and depression so this Pulsatile Tinnitus is taking me to my breaking point) because of how loud and intense the whoosing noises are which never stops as long as my heart is beating.

I also have vertigo/extreme dizziness and occasional nausea, especially after eating anything salty or with caffeine. My neck is always very sore like I have arthritis in my neck, I have daily persistent headaches that started in February of this year. The Pulsatile Tinnitus started in June just two months ago but it completely turned my life upside down.

I can't work, I can't exercise/ cardio or weight lifting because the vertigo is so bad all the time that my equilibrium is all screwed up which prevents me from continuing my diet and fitness plan that I was working so hard for in the past 8 months. In January of this year I decided to change my diet to lose 20-25 pounds to get back to my 165 lb self, and started weight lifting and cardio considering until June when this Pulsatile Tinnitus started. Now I can't even exercise with this Vertigo because my balance is all screwed up because of this Pulsatile Tinnitus.

Sodium in foods, and caffeine make this much worse, as the intensity of the wooshing noises skyrockets (I guess because of the blood pressure in the ears?) So I can't have caffeine or any foods with sodium which is nearly impossible because almost all foods has some degree of sodium. I have eat bland meals with no taste because even a tiny bit of sodium or salt causes a 5-alarm Pulsatile Tinnitus field of crickets fire in my ears!

In the past 2 months I have been to the ER 7 times for this, and every time the ER doctor sends me home with no resolution- only to say that the ER doesn't handle tinnitus. They say that the ER is not equipped for this. I said that this is not regular tinnitus, this is Pulsatile, it's a huge difference, but the ER doctors and nurses have no clue what 'Pulsatile' tinnitus is and when I explain to them that I hear loud whooshing noises that match my pulse rate they have no clue what I'm talking about and on my discharge papers they write under "Chief complaint: Tinnitus in both ears". That drives me insane because what I have is NOT regular tinnitus. But they don't get it.

After the 7th time in the ER last Sunday the ER doctor said that I have to see my primary care doctor for this, and if they can't help to see a specialist, and if they can't help to see a sub-specialist, and if they can't help then go to a regional hospital like Stanford or UCSF in San Francisco.

I was seen by my primary care doctor, Urgent Care many times, an audiologist, an ENT doctor, a Neurologist, and only the ENT doctor is working with me. I had an MRI (brain and neck), a CT scan and CTA in the ER (all normal), and an Ultrasound Carotid Bilateral.
My ENT doctor said that based on my Ultrasound Carotid Bilateral I have a "high riding jugular bulb" on the RIGHT and LEFT side of my neck causing "turbulent blood flow" in my jugular vein which my ears pick up the wooshing sounds of that turbulent blood flow.
But the ENT doctor said that even this condition is beyond his scope and that I need a more highly specialized doctor to further evaluate this.

My Neurologist said that that they don't manage tinnitus- I had to tell him that this is not regular tinnitus, this is Pulsatile Tinnitus, a vascular issue which is definitely Neurological. So my Neurologist has no clue how to deal with Pulsatile Tinnitus and after studying my MRI he couldn't find anything wrong.

Meanwhile I am going thru absolute hell every day trying to get my primary doctor and specialists on the same page to properly diagnose and treat the underlying condition causing this, and they have no clue what to do.

I had to see mental health because the anxiety and torture of this condition - and the stress of not getting the right help - is driving me so mad that my mental health is in rapid decline, and I am having to take Xanax 3 times a day which helps slightly by limiting the perception of the loud wooshing noises. The Xanax calms my nerves down but when the Xanax wears off after like 3-4 hours, my anxiety is back - so this is why I have to keep taking Xanax until the doctors treat the underlying condition with the 'jugular bulb'. I will ask my doctor for some delayed released Benzo that lasts longer than a few hours so I don't have to constantly take anti Anxiety meds throughout the day. Also my body is building a tolerance to Xanax and this is how addiction starts. I hate taking addictive meds but I have no choice as Xanax is the only thing that calms me down when the whooshing noises gets so intense.

Sometimes the torture of this Pulsatile Tinnitus condition is so bad that I have contemplated suicide recently to make this stop. It is that severe. I can't bare this torture for much longer. Pulsatile Tinnitus is the worst enemy of people who already suffer from depression/anxiety like me!

After researching Pulsatile Tinnitus I found that UCSF has a dedicated Pulsatile Tinnitus clinic in San Francisco with world class physicians who specialize in Pulsatile Tinnitus. I live near San Francisco, about 30 miles East. However, I need to first get my physicians referral which has to be approved by my health plan because UCSF is a 3rd party outside the network. If approved by my insurance and if the referral goes thru I need to send UCSF all my imaging studies (MRI, CT scans, Ultrasound) on a CD and then wait for 2-3 weeks for them to call to schedule an initial appointment with their Pulsatile Tinnitus specialists.

I hope they accept my case because I can't hang on much longer.