Hi
@Anjaty91 , I hope you are doing well! This is actually my first post, I am just inspired by your similar situation as mine. I myself am going through the exact same thing you are going through currently. Briefly about my own condition – I've had Pulsatile Tinnitus since March 2019, went through several doctors including my GP, 2 ENTs, physical therapy, and a few others till I was able to get recommended to the right team of doctors. I as well deal with intense pressure when I bend over, move quickly, or even just getting out of bed. The pressure rebounds in intensity and the pulsing gets extremely loud and causes me to get disoriented. I also deal with that heart rate going up fast and beats quickly like you described. Currently I am working with a team of Neuroradiologists that specialize in Pulsatile Tinnitus to help diagnose my condition.
What I learned from dealing with different doctors – and better yet, reading what people have gone through on here is that most doctors dismiss the condition, don't understand how to diagnose it, or don't know how to read there own MRI's/MRA's. After visiting my second ENT (who actually was very knowledgeable) he had me get a CTA with/without contrast done. After the radiologist read it, it came back negative. Working with my current neuroradiologists, they were able to use it (along with an MRA) to help diagnose that I have a right sigmoid sinus diverticulum. I'm still in the process of awaiting to have an angiogram and lumbar puncture.
My best advice for you – since you've had so many different tests done without any sort conclusion (tired of spending $$$) is to clearly find a Neuroradiologist. I know it sounds repetitive to continuously find a new doctor – but you need to find a doctor that can refer you to a "neuroradiologist". This may mean going to see another ENT (someone with a background in ear conditions or neurology) to get a referral OR seeing a neurologist that can refer you to a good neuroradiologist. You may even want to ask the doctors you are working with now to see if they know or can refer you to a neuroradiologist.
A lot of the time's the best neuroradiologists work at University hospitals. Neuroradiologist are truly the only doctor's that can diagnose what's going on and are the best at reading MRI's. Remember the condition itself isn't the pulsatile tinnitus – it's what's causing it. You should not just dismiss it or give up this fight in figuring it out, there are so many different causes that can lead to it. (University hospitals as well are normally covered by Blue Cross if you have that.)
What you should do: You need to figure out all the symptoms you are experiencing and write them down.
Here are some questions that you should ask yourself:
- What exacerbates the pulsatile level – what causes the noise to go up
- What improves it – what causes the noise to go down or disappear
- What happens if you bend your neck in different ways, such as if you turn your neck to the side or bend it forward/backwards? Does the noise level go up or down? If it does go up when you turn your head sideways, try turning it (causing the noise to go up) then moving your head in a downward motion – does it cause it to go down? If so this could be because your closing your jugular vein.
- Are there any areas on your head, neck, or face that change the noise level? Such as for myself, I can press on the entire top left side of my head and it causes the noise to go up, however pressing above my right ear causes it to disappear. I also can push on my neck to make the noise level go away. Try pressing directly below your ear on your neck area firmly to see if it turns the sound off. This could definitely mean it's something in the vein.
- If you clinch your jaw, does it make the sound go up or down?
- If you hold your breath, does it cause the sound to go away? (Valsalva maneuver)
- If you open your jaw, or lunge your lower jaw forward, does it cause the sound to go up or down?
- How does exercising affect it?
- How does stress, or sleep/lack of sleep affect it?
- Do you have constant headaches?
- Has your eyesight become blurrier, darkened, narrowed, or do you see stars/spots/bright flashes? Have you had an influx of eye floaters? A lot of this could of course mean IIH (idiopathic intracranial hypertension)
- When it comes to the exasperation of pressure in your head – what movements cause it to happen? Such as bending forward (like you said) – but how about moving quickly, getting up from a seated or lying position. Does it cause any disorientation or dizziness?
- Is it worse while lying down or standing up?
- Do you get dizzy, confusion, memory issues?
- Have you tried to listen to it on a stethoscope or record it? I actually went and bought one from CVS to make sure the pulsating was to my heartbeat. I then tried it on areas of my front and back of my neck/head to see if I could hear it – to which I could. My ENT could not hear it, but my Neuroradiologist could.
- What exactly does it sound like? Is it high pitched? If it's high pitched, it may lean closer to an arterial cause.
- What other issues did you have around the time you got it? Back issues? Neck issues? Stress?
Just because you are hearing it on the right or left side, does not technically mean the issue is on the that side, it just may be the more dominate venous system. And of course if the noise goes away, that may mean its getting worse.
Tests: There are several tests that you can have, but most definitely a CTA of the temporal bone with contrast (which it sounds like you did) and an MRA of the brain with/without contrast. These should realistically be done on a T3 Tesla machine as opposed to a T1.5 or a T2 for a much clearer image. A lot of times poor MRI tests can lead to issues going undiagnosed. My T3 Test cost without insurance over 10k$ but with insurance it was only around 800$.
There are so many different things it could be, that is why you need to get checked out by the right doctor – someone who is willing to work with you. It could be a diverticulum, venous stenosis, arterial fistula, dehiscence of the sigmoid plate, the list goes on and these can be EASILY missed by someone who doesn't know what to look for.
Can we please just have a doctor that stops asserting its eustachian tube dysfunction!!
A lot of doctors consider what we are experiencing as "rare" and dismiss it or state that we need to cope with it or learn to live with it. Just because it is "rare" doesn't mean it can't happen to any of us, and we that suffer from this deserve an explanation – one that answers our questions. I have also seen doctors dismiss things because of age, saying your too young to have that – well I'm 34 and dealing with this so it can happen to anyone. I really do hope you and others will benefit from this advice and seek the right help. Don't give up your fight, you'll figure this out. I wish you luck! If I can get mine solved, I will most definitely write it in the forum. Let me know if you have any other questions – I of course am not a doctor but I can try to push you in the right direction.
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