I was recently made aware that there maybe a direct correlation between PMR/ GCA.
If anyone has Pulsatile tinnitus, are you all familiar with
This website was a lifesaver for me in the sense that I was so relieved other ppl also had something similar to me.
Your heart beat can be heard loudly in one or both ears... sometimes felt. The noise is in time to your actual heat beat and when your pulse quickens it slows. There are recordings of whooshing
Might be worth the validation.
Good morning farzana100 . Firstly I am so sorry you having such a dreadful time and I do hope you get the answers you want soon. I have found this forum a godsend over the years.
whooshers.com is an excellent site, full of information though not exactly comforting reading at times. The British Tinnitus Association also has a small amount of inflammation about PT.
I’m lucky in that my PT which started exactly a year ago has stopped as abruptly as it began. I had a lot of investigations which fortunately were all clear. It was certainly very miserable in the months it was present. I’m sad you are having to endure that as well as all your other symptoms and the worry they bring. Hopefully once those get sorted the PT may cease.
All good wishes, Irene x
Yes , I suffer from different types and levels of tinnitus , but did do because of other health conditions , it is just worse at times because of GCA/ PMR issues.
I know this is a great site for sufferers of all different sorts of tinnitus , and also those with no tinnitus but with hearing sensitivity issues related to migraine and neuralgia.
Especially on those times when you can't do what the medics say by just ignoring it to drown it out .
Have you tried listening to different types of music and pressing pressure points by and around the ear to reduce the symptoms yet ?
These can be very helpful as well as deep breathing exercises while lying on the bed with your head and body gently raised to reduce its loudness.
I like to think that my ears want to keep me permenantly entertained by playing their own form of Tinnitus Radio !!😋😂😂😂😂
Hello, yes, I’ve trained those techniques and many others but mainly mind over matter and wearing headphones on when it’s really bad at night, listening to lo-beat music helps me to eventually fall asleep.
The worst thing has been to get doctors to acknowledge PT.
I have yet to find one that will take it seriously, particularly as it may have an involvement in my eye issue; Orbital Apex Syndrome- optic nerve tumour.
The struggle is real !
I hope you get some relief from your ‘beat’ of the night!
Yes it does seem ridiculous that Doctors don't take long term tinnitus issues more seriously in observing the progress of many different types of vascular or cranial conditions , it is such a common feature , and usually changes just before the severity of your other symptoms kick in.
I know there are some Consultants who are really interested in it in relation to inflammatory diseases and started new research up in Liverpool and Manchester , but Doctors who know how to examine it in the general medical profession are few and far between.
Therefore , we have to say , the " beat" goes on
Hi Everybody, and thanks farzana 100 for raising the issue of pulsatilla tinnitus. One of two, (what I call, possible PMR legacy conditions)
I was diagnosed with PMR back in March- April 2016 and was on
10mg of pred for 2 years, I think my journey with PMR, although bad enough, may not have been as severe as some of my fellow sufferers have experieced. I am now, “Thank God” at the moment, symptom free. Please believe me I am not being smug or suggesting I am cured forever. In late 2018, after tapering off the pred very very slowly I asked my GP if I could also stop taking the maintenance dose of lanzoprosil, which I had been prescribed to protect my stomach whilst on the pred. He said that I could.
I almost immediately developed a reflux issue, never having had any problems with acid reflux before, my PMR problem. (Maybe a coincidence) After several attempts at getting off the PPI’s and a couple of endoscopy’s, and cameras up my nose. The diagnosis is now, silent reflux and am now on a maintenance dose of 15mg, which keeps me comfortable.
Now to the Pulsatile tinnitus,. About 9 months ago, whilst sitting quietly in my study, and ruminating on life’s mysteries, I suddenly experienced a rapid pulse in my left ear, my resting pulse at that time was about 52 bpm,
The pulse in my left ear was about 160bpm. It lasted for about 15 mins then passed. Over the period of about 4-5 months this recurred about 20 times. I went to my GP, explained what I had experienced and he sent me for an ear test, which was ok, however the lady who did that test suggested I was experiencing pulsatile tinnitus, and would write to my gp.
To be honest he seemed a little perplexed and didn’t seem to know what to suggest. I have’nt had it for the last couple of months, so I’m hoping it may have run it’s course. Perhaps it’ s all part of the proverbial 2nd law of thermodynamics kicking in, I am getting on a bit now. Anyway God bless you all, and hope get, and stay healthy.
RJ.
Did you try to stop the lansoprazole cold turkey? PPIs are like pred - you have to wean off them and often it also helps to wean using ranitidine. Stopping them suddenly leads to rebound acid production which is worse than before taking them and can turn into a longer term problem.
Good to hear from you!
Hi PMRpro, As I said after tapering off the pred I asked the GP if he thought it was ok for me to just stop the Lanzoprosil and he said sure that would be fine. I wish I had spoken to you and poopadoop (that sounds funny) anyway I’m on 15mg Lanzoprosil and all the consultants and registrars have tried to reassure me that it won’t hurt me. I’m trying very hard to avoid all the trigger factors that cause silent reflux, so I’m confused as to why I still get the symptoms.
Any way how are you. Did I see that you had been poorly with a seizure or something like that. I hope your ok now my friend. It’s good to hear from you too.
Just asystoles lasting up to 7 secs (long time for a brain without a blood supply!!) - one presumably made me faint and I hit my head. At A&E they gave me i.v. diazepam - which I react to and the atrial fibrillation went nuts. At least it meant they got evidence of what I had suspected - I was having long QT phases and they showed on the ECG at last! Easy to fix: pacemaker fitted and everything is fine 
I can confirm that stopping ppi can cause severe acid reflux. I had been on it for over 15yrs because it's 75mg daily aspirin. I was told to stop the aspirin, had coated pred so stopped ppi. Terrible reflux. I did slowly taper doing a Ranitidine and took 6 weeks. I have been left with sinus issues from reflux now I think. They never tell you to taper them!
The doctors are so quick to put us on these meds without explaining how they work, what they do and how to stop them when the time comes. Often the job of coming off these meds seem to come to a different doctor, mostly GPs from what I’m reading.
If we were educated better in the drugs we are put on it would reduce our suffering so much.
Just in a 10mg dose of prednisone is screwing my body up! The sweats in themselves is so bad! I haven’t even been given a firm diagnosis for one particular thing! Life is spiraling out of my control it seems!
The fatigue is something I cannot cope with and lower back pain is disabling at times!
I admire each and every one of you all for finding coping mechanisms and sharing your stories so we can all be benefit and learn also!
Thanks everyone and I wish you all good health most of all!
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