Pulsatile Tinnitus Forever

[ozbourn]

I have had pulsatile tinnitus for as long as I can remember. I have a vivid memory from when I was at least under 8yrs old where I was struggling to get to sleep due to my tinnitus, and I was imagining a train chugging around my room to the pulsating sound of my tinnitus.

Since I have had it forever, I thought everyone had it. I didn't realise there was a life without tinnitus. It was only a few weeks ago when I was talking to a friend where, for no reason in particular, I just decided to ask if they could hear the blood flow in their head. They said no. I then researched what I was experiencing, and this is pulsatile tinnitus. But I've had it FOREVER! I feel that that distinguishes my case a little bit, since I've seen no one yet on the internet who has had it for as long as they can remember.

I also experience lots of lightheadedness and dizziness, and there is lots of pressure in my head. Sometimes it feels like my head is going to explode. This isn't necessarily a headache, this is just pressure. This may be irrelevant, but I'll add it anyway, but whenever i get into the 'seal' yoga position, I get extremely sharp, immense pain at the back of my head.

I can get pulsatile tinnitus either in one ear, or both ears. It becomes much louder when I am laying down (so at night), when I cry and when I get anxious/nervous (mostly in social situations). I can also feel the blood pumping through my head. It's not just a sound, it's a feeling. If I concentrate, I can feel it whenever I want to although it is not always prevalent. I feel it most strongly in the tips of my fingers, forehead (or head in general) and my thighs.

A lot of this is unnecessary detail, but I decided more is better than less.

I hope you can help.

[bridgeit]

Hi Ozbourn, I've mentioned this a few times in post now so, at the risk of sounding like I'm on a soapbox trying to sell something, I'll be brief.

If the noise is louder when you are laying down your problem might be your internal jugular veins, in particular a constriction that's a) causing venous insufficiency (poor drainage) and b) raising intra-cranial pressure. I'm not a doctor; I speak from experience.

If you haven't already, to investigate this possibility you'll need a cranial MRI venogram (50 min procedure) to be assessed by a neuro-radiologist who knows precisely what they're looking for.

Cranial venous insufficiency can cause pulsatile tinnitus, pressure in the head and can be congenital e.g. extra long styloid process squashing vein. It can also result from injury akin to whiplash, and could have occurred (and been missed) during childhood.

I suggest you discuss this possibility with your GP and push for a referral to a neuro-surgeon who can order the necessary scan and seek interpretation from a neuro-radiologist.

Treatment options will depend entirely upon what, if anything, is found. I suggest you look up "idiopathic intra-cranial hypertension" and "elongated styloid process and tinnitus" online. That will give you an idea of what might be happening to you.

Note: the NHS was completely out of its depth (or funding envelope) about this in my case and I had to go private for the referral, investigation, diagnosis and treatment. I am insured...…………….. it would have been completely unaffordable otherwise.

[ozbourn in reply to bridgeit]

Thank you so so much!!! I'll make sure to do that.

[Orchid_lover]

Hi Ozbourn, I’ve just found your post as I was searching on this forum for posts relating to tinnitus, which I suffer with. Following having a brain, IAM (inner ear) and full spine MRI, I have recently been diagnosed with having a birth defect called a Chiari Malformation type 1. It has many symptoms associated with it and one less common one, but still suffered by most, is tinnitus. I’ve done a lot of research on google, finding lots of websites explaining a lot about Chiari and found that the type of tinnitus is Pulsatile tinnitus. Therefore, I would recommend you to request your GP and/or Audiologist to refer you to have a Brain and IAM MRI to see if you have Chiari. Best of luck and let me know how you get on.