Does anyone suffer with Pulsatile Tinnitus?

Hi guys, really low, it's enough with all the usual aches & pains, but my head in particular is really getting me down. Feeling like there's incredible pressure inside, deeply throbbing & I can hear an awful whooshing sound as well as my own heart- beat. Not anxiety. My hearing is fine, it's been checked at ENT. No problems there. I'm on a mind dose of Amitripyline, have been for two yrs (20mg) at night to help with sleep. Could it be a result of taking them? Why the sudden change, they were working for me? Last night was agony, head pain wakes me regularly, then it's a mild painkiller & try to go back to sleep. Frustrating lying in pain, with a Hubby who snores like a train!

Gentle hugs to all, Annette -x-

22 Replies

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  • Hi , I've had ear problems since I had meseals since a teenager, incredibly every time I go to GP they allways say I'm fine. Even when I've had pain and my head is allways bad when I get it so really had this occasionally for 25 years. If you feel like you need a better opinion and you are really suffering . Try look up a NHS doctor in the area specialising with ear problems and ask for a referral . Ears inner ears are complex things all nerves leading to ears from the brain ect,,, can cause a mititude of problems . Conditions illnesses are a obvious cause . If its persisting do try for a referral I have for definite seen in myself a connection to ear pain itchy ears ect,, to flares ,, so I know it's an indication for me that something's not right. For you this may not be the case but don't be fobbed off as I have for a very long time try look into it especially if your exsperiebce mg pain you have all the reasons to push for more help x

  • Hi Jo, seen an ear specialist , no joy there. I have stories of people having an

    AVM of the brain, abnormal blood vessels, which could be the cause of problems.

    Intend seeing my Doc, to see what she thinks of this. -x-

  • Hi there, I have the same symptoms and I am not on any medication (((I'm allergic to most of the meds out there :"O( ))) Doc is sending me to ear/nose and throat Doc's... I listen to the sound of waves crashing (((corny I know))) it takes my mind off it, if it's only for a short while. I download them from you tube. I have great sympathy with you and I can send out a soft warm hug too. Hope it goes away for you soon. x

  • Thanks Andie, I'll try to download some too. Am cold turkeying my meds at the mo to see if there's improvement. I've read that alcohol, caffeine & salt, are all triggers as far as Tinnitus is concerned....so it's popcorn instead of crisps, herbal tea & no more Brandy! Can but try :-)

    Annette the achey. -x-

    Ps. Avoid Tonic water as well.

  • Your welcome Annette, if the pain isn't bad enough hey? Then other bits of us start with there 10 pence worth. Thanks for list of triggers, I (personally) don't smoke/drink alcohol. I don't even drink any sort of fizzy drinks, been on caffeine free coffee/tea for years and still got it... I do use salt though... I think it can be different triggers for different people, worth a try to see if anything does trigger yours more than usual. I feel myself, if it gets to me, gets on my nerves and it makes me loose it (my cool) it is worse, that is my main trigger. I can get really growly and mad with it, I then try and calm myself with the sea noise (having an video of waves crashing is good too) I try then to tell/convince myself I am the boss here ((GIGGLE)) but it places me in a better mood and it seems to quieten the rumble in my ears... I will look for the link and send it through on a post okay...

  • youtube.com/results?search_...

    and

    youtube.com/results?search_...

    Hope one works, take care, soft hugs x

  • Thanks very much Andie -x-

  • Hi Everyone, Sorry I'm a bit late getting a reply in but I thought I'd let you know that I've also been having problems with my head, it came on for no apparent reason one evening I had a hearing test and was told it wasn't that. So I went to my Gp and told her my symptoms as though I had water in my head and when I move my head from side to side it also sounds like Waves Crashing!! I only hear it when its very quiet or when I'm out. My Gp says its nothing to do with my meds as I'm on Amitriptyline for quite a few years now. My Gp gave me a spray called AVAMYS 2 Puffs up my nose every evening and its gone but I did find that when I stopped it the problem returned but my Gp said that I have to continue with it or it will return! What is the problem with Tonic water? Good luck. Aisha x

  • Hi there, I too have tinnitus which I thought was related to an increase in dose of amitriptyline, mostly mine is a high pitched ringing, but I completely understand what you say about hearing your heart beat within the head, I've had that a lot too. I spoke with my GP about it and he told me that stress is the biggest trigger for tinnitus, he suffers from it too so I think he understands it. I can't understand why mine stopped for a while, I was mighty relieved as it had been driving me nuts, but then earlier this week, bang.....it was back. My GP didn't think the increase of amitriptyline was involved, even so I dropped it back to the previous level and guess what........no change...eeuugh ... meds and wrestling them !

    Foggy x

  • Yes, my tinnitus turns to pulsatile tinnitus if I take anything in the Amitriptyline group, including Nortriptyline, but its a high pitched but low volume hum otherwise, the one medicine that really helps it is Diazepam but they don't like prescribing it. I also think stress makes it worse - when my son fell off his bike and I heard by text he had a head injury, my tinnitus was really bad.

  • Ps. Sorry meant to mention, I have a friend who has had tinnitus for years and she has to have a fan running in her bedroom every night, just to be able to get to sleep . Foggy x

  • Is this a new symptom... Cos I have just recovered from a 10 day virus and my ears and head felt terrible ....headaches ....pressure in my ears... Felt like the top of my head was under real pressure...

    I was just about to go to my GP when I woke up on the 11 th day feeling just like my normal self

    VG x

  • I know how you feel, I have had tinnitus for 7 years now and it doesn't get any better. I barely sleep as the noise is horrendous. I had a MRI scan to rule out anything untoward, that was fine, I was then told I would have to live with it. I have just had my hearing test and now have very little hearing in my left ear ( which is where I get the tinnitus), so back to hospital to see what I need in the way of hearing aid. I wouldn't wish tinnitus on my worst enemy it does impede on my quality of life. I do know there is a support group in Sheffield, haven't been yet despite living close to Sheffield. Hope your humming is temporary. Good luck

  • hi I started with ear problems and continue with ear probs and dizziness - before fibro diagnosed. I was told it was viral inner ear infections but had it for over 16 months now! so I don't know had mri of brain all clear!

    I don't know the exact links but feel there is ne between my probs x

  • Bit late with this but I've had the same problem for years. Sounds like water rushing and you can hear your heartbeat...I've been to ent and they said I have an artery that is close to the bit in the ear that picks up sound and I can hear the blood rushing through it, often happens when I'm stressed too, sounds like a train in the middle of the night when all is quiet and you want to go to sleep. There is no cure according to ent!

  • Yes, I had pulsatile tinnitus, it is horrible, I found that putting a plug in that ear helped to ease the noise so that I could forget it a bit, but it has gone now and left me with a constant low hum, which I have had for a couple of years and I don't really notice it any more.

  • Thanks everyone for your sympathy, comments & case histories. Taken much on board to see what helps. Another question, if you put your tongue out & onto your top teeth what happens?

    With me the noise is much louder & the pitch goes really high. Really horrible, also when I yawn but to a lesser extent. Anyone else experience this annoyance?

  • I tried the things you said about sticking tongue out and yawning and mine also got louder! I'm new to this health board and haven't read very much yet but am really struggling with pulsatile tinnutus and looking for answers. Just wondered if you ever found out the cause of yours and if it has gotten better.

  • Hi Annette,

    I have just read your post and I had the same symptoms as you.

    I was diagnosed with a (DAVF) Dural Arterial Venous Fistula following a brain MRI.

    The whooshing/heart beat sounds you are experiencing are some of the symptoms of an AVM or DAVF.

    If you are still experiencing these symptoms please follow up with your Doctor and request a Brain MRI with contract media. Additional information/support can be found at avmsurvivors.org

    Regards,

    MackerIRL

  • I have had constant pulsatile tinnitus for a year and pursued the cause with ents, neurologists, a rheumatologist...I had mri, mra, angiogram, ct and ultrasound. Several specialists said they didn't think they could do anything else for me. Then I had an Mrv of the head and they found 30-40% narrowing of the mid right transverse sinus (vein in head). It could be a clot, vein structure from birth, too much brain fluid pressure, not sure yet but I am seeing neurologist next week and will get to the bottom of this. I have never taken amitriptyline. Pulsatile tinnitus is vascular and it is serious, don't stop trying to find a cause. There is a website out Of New York city "whooshers.com" with a lot of information and sounds, mine sounds like "PS" stenosis which I do have! Good luck to all sufferers...

  • I have had constant pulsatile tinnitus for a year and pursued the cause with ents, neurologists, a rheumatologist...I had mri, mra, angiogram, ct and ultrasound. Several specialists said they didn't think they could do anything else for me. Then I had an Mrv of the head and they found 30-40% narrowing of the mid right transverse sinus (vein in head). It could be a clot, vein structure from birth, too much brain fluid pressure, not sure yet but I am seeing neurologist next week and will get to the bottom of this. I have never taken amitriptyline. Pulsatile tinnitus is vascular and it is serious, don't stop trying to find a cause. There is a website out Of New York city "whooshers.com" with a lot of information and sounds, mine sounds like "PS" stenosis which I do have! Good luck to all sufferers...

  • I for one started about 2 yrs ago when I was diagnosed with fibromyalgia I started to hear my heart beat in my left ear so I went to see a Ent but couldn't find anything wrong so I figured it was just stress . So it went away for awhile but now this year it's back again and comes and goes so went back to see my doc he did an ultrasound on my arteries in my neck that was ok went to see my Ent he did a hearing test that was ok sent me for a angiogram that cane back ok. So now I looked up to see if fibromyalgia could be the cause I read where it could be so I don't know anymore can't take the meds they give me cause my body reacts to the side effects

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