Feeling Stuck in a Loop Seeking Answers for Pulsatile Tinnitus and Neck Swelling — Can't Find Help from the NHS

[Amanda1966]

Hi,

I've had pulsatile tinnitus in both ears since August 2023. It happens mainly when I'm lying on either side, and sometimes when I'm just looking down. I've seen two GPs, and both said it wasn't unusual to hear your pulse. One of them consulted ENT for advice, and they said it was more likely to be vascular in origin since it's bilateral.

In January this year, I noticed an intermittent swelling in my neck. The second GP said it was my internal jugular vein. Because of this new symptom, she referred me to ENT. They didn't give me an in-person appointment but sent me for an ultrasound of my neck. The scan didn't examine my blood vessels at all, but it showed nothing else abnormal, so ENT decided they didn't need to see me.

I went back to the GP and eventually got an appointment with a vascular surgeon a couple of weeks ago. He sat across the room from me and said I was overthinking things. He didn't think my symptoms warranted any investigation and suggested that the bulging jugular was probably just a Valsalva response. When I asked about the pulsatile tinnitus, he said he didn't know anything about tinnitus and that I should see an ENT specialist for that.

I feel like I'm going round in circles and slightly losing my mind. It seems I'll need to go private to get any kind of investigation that might explain what's going on. I'm writing here to ask who you were referred to initially — ENT, neurology, or vascular surgery? I've no idea where to start if I go private.

 

[net net]

Hi Amanda. Going around the same circles. Pulsatile started 2023. After few ear infections, headaches pressure one sided. Referal slow. Finally got sen had Ct scan. No tumour but mastoid fluid behind both ears. Got hearing aid. Few months ago i had grommet inserted. But had lots fluid drained out. Hearing much better. But tinnitus has spiked. No help. Spoke to Gp as its severe. So had another CT scan as more headaches and unbearable. Awaiting results. My whole head inside feels like a broken down fridge sound. So ive got tinnitus app to create sound to be like what i hear. Because of lack of support ive tried or still trying. Night time worse. Trying masking, habituation. Learning more about what the does to either make it worse or less. It trys to fix the noise but infact makes it worse. So im not paying attention to it i ignore it and let my brain think its not important. But Amanda dont give up. Listen to as many people suffer and go on blogs that specialise in Tinnitus. As its hidden and no one understands unless you have it. Not like its visible to others. Distraction works for so long. But i have so more Empathy for others than i did when tinnitus was mentioned. Hope you get the help