I am a 20 year old girl who has been suffering from Pulsatile tinnitus for over 5 years on the left side of my head/ear. The tinnitus tends to get worse when laying down and at night time and tends to get more quite when my neck under my left ear is pressed.
I have had a MRI and CT scan done about 3 years ago, nothing was found.
I also am anaemic with iron deficiency. My anaemia is irregular which means the tinnitus is not a cause of anaemia.
Every GP and Doctor i have spoken to tells me that its their first time of hearing about my condition, i came here looking for help and maybe someone else suffering from the same condition.
Thanks for reading, hope to hear from all of you soon!
Written by
Fatiguegirl
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I’m sorry to hear about your tinnitus . I personally know nothing about it I’m afraid . When I first read your post , I wondered why you would come to the Pernicious Anaemia forum . You write that you are sometimes anaemic . I assume that you mean anaemia due to iron deficiency? Pernicious Anaemia is a result of Vitamin B12 deficiency , due to an autoimmune condition . But there are other reasons for VitaminB12 deficiency . Tinnitus seems to be a fairly common symptom . But I’ve not heard the expression “Pulsatile Tinnitus ” before. Have you had your blood tested for B12 ? Anyhow , I suggest that you try taking a vitamin b12 tablet in the first instance , along with a modest folic acid tablet of say 400 mcg ( obtainable at Amazon ) These two B vitamins work together . If you are B 12 deficient for dietary reasons— for instance being vegan or a strict vegetarian , this may help you . ( B 12 only found in animal products ) If you are B12 deficient because you have Pernicious Anaemia , only b12 injections would help . I can confidently recommend B12 supplementation because it is a vitamin that you cannot overdose on . Even if this is not the reason for your tinnitus , you do yourself no harm .
Unfortunately , doctors in general are not knowledgeable about B12 deficiency ( hence the formation of the Pernicious Anaemia Society. ) We try to help and support eachother . I hope that you get rid of your tinnitus . I also hope that someone will come along and have a better response than mine , Very best wishes ,
By irregular anaemia I meant that I had it 4 years ago, then I was diagnosed again, not anaemic, had a blood test done 3 months ago, turned out I became anaemic again...
I don't think I have had my b12 levels tested before, I do eat plenty of red meat I think. I will order and give the supplements a go and see if they help or not?
The doctor was meant to see me at the hospital this month to see what might be causing my anaemia but it got cancelled because of the current situation with Covid-19.
Thank you for your advise and I do hope all of us will get well soon. Stay safe.
Yes I did see the EMT recently and he told me that my hearing was perfectly fine, he suggested that I should get a head and neck scan done where they can look into my nerves, I don't think its going to be any time soon because of the current situation.
Sorry I haven't tried Deniers and vertigo.. To be honest I don't know what they are.
Meniers (usually with deafness in one ear and tinintus) and virtigo give dizzy spells. Yes another MRI might be helpful. I had one of that area and it was deemed normal. Si could be nerves . Or in my case a vestibular disturbance.
Interesting you say B12 has reduced your tinnitus. My tinnitus doesn’t seem to get any better and I had my three monthly B12 shot last Thursday. As I’m writing this, my tinnitus is so loud it’s a really loud hiss today and feels like it’s the whole head rather than one ear or one side. I also get the sound of a car engine running too, I often get up to look out of the window to see where the car is but NO car it’s as annoying as the loud hissing I get.
Though I live in London which can mask the tinnitus slightly, I also have an isolated place in the east Midlands which is sooooo quiet and still no neighbours or traffic, five miles from a shop which is where i’ve been throughout this virus situation, yet that silence is disturbed by the noises in my head of varying levels of my tinnitus. I’ve never had any head scans though.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
Please be aware that many UK forum members have had their NHS B12 treatment affected during pandemic. There are recent threads about this on the forum.
I have just read your detailed reply about B12, I should call my GP and ask her if I have been tested on my B12 levels, if not I should suggest do have it checked.
Hopefully that will help with my Pulsatile tinnitus.
Many forum members find that their GP's knowledge of B12 deficiency is limited so be well prepared before you talk to GP.
I suggest you get hold of your recent blood test results. Some forum members get told everything is normal/no action needed then find that there are abnormal or borderline results in their blood tests when they view them or get copies.
If you are in UK, you should be able to access at least a summary of your test results and medical records online. Details will be on your GP surgery's website.
I have this problem and still haven't worked out the cause. Went down the same route as you. Have you thought about TMJ syndrome? I am currently exploring this option as I exhausted many of the others. There are lots of self tests online.
I'm afraid you're going to have to be self reliant on this - apart from the good advice given above. The NHS find tinnitus impossible to deal with - partly because it has such a wide array of causes - from those mentioned above through to microbial infection and silent reflux from the stomach. You can easily see how you could spend a lifetime being referred from one specialist to another and then give up totally exhausted and demoralised! Unfortunately this happens a lot. So my advice - take control do your own research and be your own advocate. Sorry not to be more positive....
well I guess I just have to endure going from specialist to another, I just believe that is has got to have a cause which I will have to find. Hopefully nothing too bad.
My GP's are understanding and have read through research papers I showed them, they are trying to help me but the waiting lists in the west midlands for a hospital appointment or simple scan are just so long.
Hi I have both pernicious anaemia and tinnitus and find when my b12 injection is due the tinnitus gets worse. I had quite severe neurological symptoms before I was diagnosed which improved when I started the b12 injections. The tinnitus started at that time but unfortunately that has continued. It would definitely be worth you asking your gp about this and specifically asking about your b12 and folate levels.
Hello, I suffered terribly with this and asked my gp about it loads and she had no idea! However now that I am self-injecting every other day it has all but occasionally gone!
Hi, I have similar symptoms, pulsing in my right ear, got worse when I lie down and when feeling sleepy and tired. I got used to it over the years. took it as a sign that my haemoglobin is low. I have iron- deficient anemia.
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