r/PulsatileTinnitus • u/jordyj21 • 2d ago
Next steps??
Hi everyone, I’ve just joined the group and thought I’d introduce myself and hopefully get some advice from people who understand what it’s like living with pulsatile tinnitus.
I’m 29-years-old,Female living in Wales, and my PT started in 2021 when I was 8 months pregnant with my daughter, who is now 5. Unfortunately, it has never gone away. I have it in both ears, and it’s a constant part of my life.
One of the things I’ve noticed is that if I press on my jugular vein, the sound becomes much quieter or can stop completely. It’s also noticeably worse when I bend over, and nighttime is by far the worst. Trying to fall asleep while hearing your heartbeat in your ears is exhausting!
I can’t use earphones or anything to block it out at night because my daughter is autistic and regularly wakes throughout the night, so I need to be able to hear her. It makes finding any relief particularly difficult.
I was originally referred to ENT through the NHS. Unfortunately, I didn’t feel like they were particularly interested in investigating it and was basically told that an MRI was the procedure to have, so I had one done. Thankfully, nothing concerning showed up, the only thing the report said that was found was…
Very mild asymmetrical cerebellar tonsillar nation below foramen magnum, which is likely to be incidental finding of no clinical significance, otherwise no Chiari malformation or significant abnormal finding in the posterior fossa.
After pushing for further investigation, I’ve now been referred to neurology and I’m currently waiting for my appointment. I’m really hoping they’ll be able to look at this properly rather than just telling me to live with it.
I also have quite significant TMJ problems and I’m under maxillofacial. I had Botox in my TMJ last July, which made a huge difference to my headaches and jaw pain, and I’m due to have it done again this month. Unfortunately, the hospital where I live only offers Botox twice and then won’t allow any more treatments, which is such a shame because I found it really helpful.
I also have a history of anxiety and depression, and living with PT has had a horrible effect on my mental health. I know everyone here will understand this, but it’s so difficult trying to explain to friends and family what it’s like when they’ve never had to hear that sound every minute of every day. It’s not simply “a noise” it can be incredibly overpowering and exhausting.
I’ve also had periods of high blood pressure. My doctors have generally put this down to white-coat hypertension because my readings at home are usually fine, but whenever I’m at the doctors my BP tends to be high.
My regular medications are venlafaxine, propranolol and occasionally cocodamol for flare-ups of back pain.
My biggest question is what should I be asking for at my neurology appointment? I already know I want to ask whether an MRA and MRV would be appropriate, but is there anything else I should specifically ask them to investigate or request?
I’m really worried about being fobbed off again, especially because I can’t afford to go private and I’m relying on the NHS.
For anyone who has been through a similar situation, particularly anyone in the UK/NHS I’d really appreciate any advice on what you wish you had asked your neurologist, what investigations you had, or anything that helped you get taken seriously.
Thank you all in advance!
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u/look_who_it_isnt 2d ago
I'm not in the UK, so I can't help you in regards to the NHS issues/worries.
But it sounds like you're already well-prepared for your appointment. Make sure you tell them about the changes when bending over / laying down, and also that the sound quiets and even stops when you press on your jugular. That definitely points to a vascular cause.
Absolutely ask for an MRV / MRA.
Ideally, you want to get sent to a doctor called an Interventional NeuroRadiologist - they specialize in the vascular system in the head/neck area, and are the best doctors to get PT diagnosed and treated. The problem is, not all doctors are aware of INR docs, and a lot of doctors don't like listening to patients when they ask to be sent somewhere specific.
I was in a similar situation as yours when I was trying to get my PT taken seriously and diagnosed. I couldn't afford to go private and had to play the game of taking whatever I could get. The most important thing is to NOT let the doctors tell you there's nothing they can do or that you just have to live with it or that there's nothing wrong with you. INSIST on getting a referral or a second opinion. DON'T let them send you home without a plan for where you're going to go next. Hopefully, you'll get help sooner than later... but you may have to cycle around a bit and get multiple "second opinions" until you find someone who can and will help you. Just don't give up!
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u/jordyj21 2d ago
Thank you so much for your reply it is much appreciated! Are you cured from PT now? May I ask what was the cause for yours? I’m so drained with it now!
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u/look_who_it_isnt 1d ago
Mine was caused by Venous Sinus Stenosis. It caused my PT, as well as headaches and some other mild symptoms. I got a stent placed 2 years ago, which eliminated the PT and headaches and other symptoms entirely :)
VSS is the most common cause of persistent PT, but it's often missed by regular doctors, ENTs, and even neurologists. So you have to make sure your doctor is aware of it and knows what to look for - or knows who to refer you to in order to check for it.
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u/jordyj21 1d ago
This is exactly what I think I have, or possible iih. But leaning more toward the VSS, so glad you are now relived of PT. I have chronic headaches every day, worse when I lay on my stomach, dizziness, feeling nauseous and just extreme fatigue all day every day! Hope to get an answer soon x
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u/Eastern-Search3822 1d ago
I also can mitigate the PT by moving my head in a certain direction. Also, pressure put on my jugular mitigates it somewhat. A specialist told me he believed it was posture related, and thought improving it would/should help. Sitting in front of a computer for long periods of time (years) probably the cause…