Tinnitus - Throbbing - Cerebral AVM

[thatsound]

Hi all, Im new here so hello to everyone.

Thought I'd check if members here experience Tinnitus as I do.

My Tinnitus started approx 2-3 years ago, I went to GP with throbbing pulsating heads and temples with occasional tinnitus(all mainly at night).

Ended seeing neurologist who did blood tests and MRI and found incidental AVM in cerrabellum. But neither the neurologist nor the neurosurgeon would associate my symptoms with the AVM. I had radiation theraphy (gamma knife) to treat the AVM in Sep 2020(this treatment can take upt o 5 years to work fully) so Im waiting for the AVM to disappear. ANyway I still have all of my symptoms but now I have constant tinnitus which is mostly high pitch constant during the day and night, I do hear pulsating heart beat in head at night only occasionally. The tinnitus does occasionally turn to loud hissing, or whooshing but not that often. So spent last two years looking for cause of all my symtoms including tinnitus without any success - had multiple MRI, MRA, angiograms but nothing. Very frustrating and I am coming around to idea I may never find the cause.

One neurosurgeon referred to my tinnitus as pulsatile tinnitus as I had reported I have throbbing in head when lying down but now the ringing is pretty constant not pulsating. The only pulsating is the heart beat in my head and throbbing temples when lying down.

Sorry a bit rambling but I would extremely interested to hear anyone with similar symptoms and story as me.

Thank you

Neil

[rabbits65]

Welcome to this lovely helpful site.. I don’t have exactly the same symptoms as you but I can understand and sympathise as I too have some pretty odd things going on with my tinnitus that I have, Never fully understood. I had a few head scans two years ago that didn’t reveal anything sinister. I think the key thing here is learning to accept all these peculiar weird and wonderful sounds as there is little any of us can do, I am ok and learning to accept, I get some head pressure in the evenings and have to lay my head down, tinnitus is the most difficult subject to understand, most of us are in the same boat.

Good luck to you. …

[thatsound in reply to rabbits65]

Thanks Rabbits, yeah I think you're right regarding tinnitus, need to accept it, in fact the noise is not the issue for me, I think I can live with that,its my other symptoms, head pressure, headaches, dizziness, odd tingling sensations over head and face. My neurologist puts it sal down to vestibular migraine, which I suppose is likely. He put me on beta-blockers Propranolol whic dcreased the head pressure at night but still have it. I go see him tomorrow as I just had MRV scan done on neck and head looking for stenosis. Thanks again for your reply, its good to talk

[ETHEL103 in reply to thatsound]

HI I'm trying to get help with a high tinnitus spike and constant stuffy head feeling.I can hear some pulsating tinnitus too during the night.Its difficult even getting a gp on board but will try again tomorrow at 8am.Feel for you

[thatsound in reply to ETHEL103]

Hi there, thanks for comments. It appears to be pot luck on what kind of medical response we get regarding this, sad. Just means we have to do the leg work ourselves.

[ETHEL103 in reply to thatsound]

So true.

[Fridays_Child_62]

I think you're in the same boat as most of us in not being able to identify the cause of your tinnitus and related symptoms. The fact that some of these symptoms arise when lying down suggests to me that the horizontal position has something to do with it - perhaps it is related to blood flow. I sometimes get tension around the ears on the sides of my head but find that lying down actually eases this - also, for some reason, I get this tension less when wearing hearing aids. I do, however, sometimes get what might be pulsatile tinnitus when lying on my side, directly on the ear - it is a periodic slushing sound linked to my heartbeat. I've experienced this since I was little though. It is frustrating that we don't know why all these things happen to us but I don't think the ENT specialists have that much insight either, unless there is an obvious cause.

[thatsound in reply to Fridays_Child_62]

Interesting to hear your details. My recent scan was an MRV which I will find out results later today. I was keen to know whether my jugular vein in neck was narrowing or had stenosis from the boney Styloid Process which is a cause apparently which prevent blood from draining away from the head and brain, the main symptoms from this is tinnitus, headache, blurred vision and dizziness. As you say symptoms for me do appear to correspond to blood flow but difficult to get medics to investigate sometimes.

[Fridays_Child_62 in reply to thatsound]

I know what you mean about the medics. When I last attended a (private) ENT consultation, I expressed the opinion that blood flow might be responsible for some of my issues. The consultant told me there is no way of investigating the tiny blood vessels that go to the ears. But I pointed out that since I have similar issues with both ears, there might be a common cause in terms of blood reaching my head - it could possibly originate in the heart (as I have poor-ish circulation and also a heart condition). There was no follow-up to that though.

[thatsound in reply to Fridays_Child_62]

Have you been checked out for IIH (idiopathic Intra-cranial Hypertension) or often called Pseudotumor Cerebri. Your tinnitus does sound like pulsatile tinnitus which apparently according to NHS should be investigated. Other Pseudotumor Cerebri Symptoms

Pseudotumor cerebri can also cause a ringing in the ears called pulsatile tinnitus, characterized by a rhythmic rushing sound in the ears that matches the person’s heartbeat.

[Fridays_Child_62 in reply to thatsound]

No, I haven't - I had never heard of IIH. I mentioned the pulsatile tinnitus as it sometimes occurs when lying down, but it has never really bothered me (touch wood) and can be stopped by slightly shifting position. My main issues are conventional tinnitus and symptoms related to the muscles in the ears (which may be triggered by the nervous system). I also saw an NHS consultant who ordered an MRI scan to check for an acoustic neuroma tumor and directed me to the Tinnitus Clinic but dismissed my non-tinnitus symptoms as rare - in other words, he didn't have a clue.

[AussieHeart]

I have experienced throbbing-like haemorrhaging sensation when my tinnitus/hypercussis first reared its head two years ago. It took a year to lessen off. Neurologist found 5mm perivascular space in the brain and a 5mm penial cyst. He sent me to a cardiologist because I’d experienced a seizure like episode with palpitations and they discovered an arrhythmia so are they linked? Will never know as each specialist works in a silo and doesn’t communicate. It sounds like you got your answer and are being well treated to which I wish you all the best and thank you for sharing as everyone’s story helps another in their struggle with diagnosis, treatment and understanding of this hideous condition. For me I think my throbbing is linked to migraines without pain just throbbing! Sometimes Panadol alone settles it.

[thatsound in reply to AussieHeart]

Thanks for your reply. Did you receive treatment for the perivascular space in the brain and a 5mm penial cyst from neurologist? My AVM which was found incidentally on scan is not connected to my symptoms according to surgeons and neurologist which is why I continue to search for reasons for them. It may be that my original migraine diagnosis will be what I have to live with.

[AussieHeart in reply to thatsound]

I asked the neurologist for a cause or anything we should do about this finding and his response was: “We’ll answer that on autopsy!” All specialists from neurologist, gastroenterologist, cardiologist, cardiac electrophysiologist to audiologist and sadly I also see an oncologist cannot explain this symptom. Like you very frustrating. If it’s our tinnitus the audiologist’s reply is to ignore it (very difficult as so debilitating), if it’s heart then hopefully my recent ablation will improve it. If it’s gut related I’m working on constipation/dehydration with more water but as I said Panadol has helped things. Oncology says I’m clear and I say they are all clueless. LOL! I guess autopsy is the answer but I’m not quite ready for that