anybody with wg hearing problem help? I have lost hearing in left ear and when i remove my hearing-aid at night i then experience a very

[buddy70]

loud{to my mind} and annoying pulse.This does not occur during the day and if it does is being masked by everyday sounds.Takes ages to get to sleep and if nature calls during the night s ame again when i return to bed. Anybody recognise this or maybe just imagining this.

Thank You John

[buddy70]

Sorry about the last wee part of my question,feeling a wee bit down today Thank you John

[lisa-ranyell Vasculitis UK Volunteer]

Hi John, I am deaf in one ear and sometimes get a whooshing noise which also pulses (if that makes sense). This is usually more noticeable at bedtime and makes it hard to sleep. No idea why this happens but I will ask about it at my next ENT appointment as since I have had a hearing aid I have not had any further checks on my ears or hearing. Sorry you are feeling a bit down at the moment, if I get information that could help you I will pass it on.

All the best

Lisa

[buddy70]

Thanks Lisa.I am deaf in left ear due to wg but had tinnitus in left ear before diagnosis 3 months ago. When i remove my only aid at bedtime the thump thump in my right ear is loud and annoying,i suppose because of my deafness there are no outside noises to mask this noise. Trying to get an appointment with my consultant before my set one in nov.,maybe he has an answer. Have a horrible feeling that 'good' ear hearing is deteriorating and breathing becoming more laboured,but my GP knows little about wg and is a bit reticent to prescribe,believing that he is treading on consultant's territory. perhaps prednisolone

My thanks,Lisa, for you thoughts. John

[hamble99b Volunteer]

hi john, try ringing the hospital and asking to speak to your consultants secretary - not appointment people. the secretary can often get you an earlier app't .

I get the "pulse" sound too, I did know a theory as to why but my head's tired. what med's are you on for your wg?

regards,

sandra.

[buddy70 in reply to hamble99b]

Sandra not on anything at moment,my GP reluctant to prescribe prednisolone as he feels Mr Murray, my consultant may have something else in mind.Rang the hospital yesterday{tuesday} to try and get an earlier appt.,was told to ring again on friday,nothing available at moment.Now realise why sufferers say we are the forgotten condition,myGP had none if little knowledge of wg.Puts my mind at rest to know that the "pulse" is not my imagination. Thank You once again. John

[buffy12]

yes my daughter is having hearing troubles at moment very badly

[buddy70 in reply to buffy12]

Buffy, thanks for your reply.Hope your daughter gets some relief as soon as is possible. Thanks John.

[Louisexx]

Hi I have the exact same thing my mine is constant I just don't notice it when I have my hearing aids in, it is the sound of your heartbeat the reason i no that is when i was in hospital and you have your obs checked i could see on the monitor my heartbeat and it was in time with my ear, i notice i gets louder if i move fast or get up quickly I did ask they had no reason for it said it could be blood pressure but mines fine so can't be that hope u find an answer for it let me no if you do as the people that help me don't have a clue ??

[buddy70 in reply to Louisexx]

Louise,had to go to audiology today as worried about deterioration in my "good" ear.A stoke of luck,lady looked ear left the room and returned with my consultant.who i'm not due to see till nov. Confirmed that i have inflammation in ear and prescribed drops.Took the opportunity to ask him about" pulse" we were talking about. He confirmed that this is another side-effect of wg hearing sufferers and is called Pulsatile Tinnitus.He could not offer any advice other than try to imagine it as a "soother" to help to get to sleep .Probably a better solution would be a bang on the head with a hammer. So louise at least i know what the pulse is now. Cheers John

[buddy70]

Louise,thank you Between Sandra and yourself my mind is a wee bit more at ease.You mentioned the monitor as your confirmation, last night i used a different approach.I took my pulsebeat in my wrist and as you stated was in time with my ear.Thank God for forum members. Thank you John

[Llinos]

Hi I have the same problems too. Sometimes it occurs if my arms or legs are bent when I'm in bed or if my neck is at an angle. Something to do with the pressure of the blood being forced thru the joints is my theory!! I try to relax think of it as being back in the womb with my Mams heartbeat( I know it sounds daft but it works for me!!)

[buddy70]

Thanks Llinos. Have had a few replies to my posts and your experience and others has set my mind at ease. Wasn't sure if it was all in my mind. Tkank you John