Tinnitus

[Jenkine]

Hello does anyone have any experience of tinnitus, i have been suffering about 2 years now with a swooshing and pulsating noise in my ear. any help or experiences would be great. I have had APS 9 years. THANK YOU

[Lure2]

Hi,

I have tinnitus since 12 years when I had a small-stroke or TIA. I have a leftsided Otolit-damage after that. I had Vertigo and a lot of curious symptoms incl eye-problems also.

After I was properly anticoagulated with Warfarin 4 years ago the neurological symptoms have disappeared but the tinnitus is still there all the time. It does not bother me much anyway.

There is always 2 things important with this illness.

1.) Find an APS-doctor who knows APS and knows what to look for re symptoms and treatment. APS never goes away but it is treatable when the blood is properly thinned.

2. Have an anticoagulation-drug that is kept in a steady level and high enough thin the blood to avoid clots etc etc....

So now I wonder are you properly anticoagulated and what does your Specialist say about your tinnitus?

Best wishes and a Merry Christmas

Kerstin in Stockholm

[Hughes-Comrade]

Yes mine is bad. Looking back my ears were ringing in high school; about 40+ years ago. They seem to be much louder withing the last two years. One issue is like a vibration or the sound of high voltage going through wires, or a tuning fork. This noise has a short 1-3 seconds long .The other noise is a constant high pitched scream/ring. It's Really Bad.

Going to see ENT on Monday. Pretty sure nothing can be done.

~ Best Wishes ~

[GinaD]

Sympathies. I too have tinnitus. My Mom, who genuinely thought she knew more then my doctors, used her status as doctor's wife too acquire an endless supply of antibiodics which she gave me constantly. The tinnitus started around 1960 and that siren has been ringing ever since. I've learned to ignore it.

When I had a seizure (pain- induced) in a doctor's office back in 1989, as I slowly returned to consciousness one of my first day thoughts was " the ringing is gone. Wow! Silence!" But as consciousness returned so did the tinnitus. Oh well. I had a second or two of silence.

I suppose I don't mind the ringing because I grew up with it. For me it's just the way things have always been.

But in defense of my Mom, she had TB and had cured on antibiodics in 1947. She was determined I would not catch it. And so far-- nope, though now that I have an autoimmune diagnosis and am in charge of my own affairs, no more daily antibiodics either.

[ledlegs]

Yes I have had tinnitus for 2 and a half years now since I had sudden hearing loss in my left ear. I have learned to live with it now and don't really notice it most of the time.

[Lure2]

I forgot to tell you that I think Tinnitus has to do with our APS and very tiny bloodvessels. I have had a lot of microembolies in my ears. Tinnitus is better after anticoagulation with Warfarin but I still have it but I do not listen to it.

Kerstin

[london-lass]

I I had tinnitus and got referred to audiology. I had an unusual graph for my hearing test. Dr said the aps had affected the blood flow to the small hairs inside my ears and that my ears were working too hard. Hearing aids sorted it for me. It returns when I forget to wear them!

Happy. Christmasall. Have a blessed time and keep as well as you can

[Lure2 in reply to london-lass]

Good for you! I have hearing-aids since 1 month but they do not help as to the Tinnitus. Anyway I am so used to it but I like my hearing-aids very much as you must not concentrate so much to hear what people say. That is very tiering for the brain I guess.

Merry Christmas and happy New 2016

Kerstin

[london-lass in reply to Lure2]

Hi Kerstin

It took a couple of months to click in.

Happy Christmas!

[sbncmo]

Hi Jenkin

I have had tinnitus for about 35-40 years. As a child I had many, many ear infections, ruptured my ear drums twice & have major scar tissue in my ears now, causing considerable hearing loss. The tinnitus has become much worse as the years pass. My ENT and another ENT who specializes in ears both recommended hearing aids. They said it helps about 50% of those who wear them for tinnitus. They also explained that tinnitus occurs from the brain trying to amplify sound waves so our ears will hear at the proper volume. Unfortunately, there isn't much that can be done from my understanding.

The sounds I hear are buzzing, high pitched whining, clicking, the sound of cicadas & tree frogs. I also have a lot of vibration in my head & ears. Sometimes I can turn my head a certain way, perhaps laying my head against my shoulder, and the sounds will greatly diminish for a minute or two. Quite often the noise is so loud that I can't hear people talking, even when they are using a microphone - very, very frustrating. Since my insurance doesn't pay for hearing aids & I can't afford it myself, I'm left hearing noise & don't know if a hearing aid would help or not.

I don't know if tinnitus is common with APS - I do not have APS, but my husband does & he has mentioned tinnitus only a couple of times.

I hope you can get some relief. Best wishes to you!

sbncmo

[Lure2 in reply to sbncmo]

Tinnitus is a symptom of APS.

I am very sorry that you can not get the hearing-aids that they recommended and which would help you with 50 % .

Kerstin in Stockholm

[sbncmo in reply to Lure2]

Thanks Kerstin. I guess my husband hasn't said much about his tinnitus because it isn't that bad for him. If that's the case for him, I'm thankful because he has a difficult time with his other APS symptoms.

[Jenkine]

Thank you all for your reply's it seems it is more common than I thought..

I am due to see Prof Hughes in the new year but he is not so well so seeing prof D Cruz, so if I get any positives il let you know...merry Christmas everyone hope 2016 is a god one for you all.

[Billie-Jo79]

Yes! I have had this problem for about a year. I was referred to an ent who did an mri and found a problem in my brain. A large vascular loop curled round the vestibular cochlear nerves protruding into the bit of my brain it shouldn't be. I literally just found out before Christmas and I am being referred to a neuro surgeon. It was the symptoms of this (falling over, forgetting stuff etc) which made my docs test me for everything.

I have been treated for fibromyalgia for 6 years but I always knew it was something more. I just got back 2 positive lupus anti coagulant blood tests which is why I ended up here. So its all up in the air at the minute. I have awful hip pain and kinda just waiting for some action.

[Lure2 in reply to Billie-Jo79]

Hi Billie-Jo,

I have also APS and Lupus Anticoagulant and I, like a lot of other members here, have found that the Neurologists do not "get" what APS is about - too thick blood!!

What you need is a Specialist of APS who understands what to look for. I also had neurological problems after my first TIA or mini-stroke. I had a leftsided Otolit-damage and saw a Specialist at the Balance-clinic here in Stockholm. He told me I had had Micro-embolies in the ear/brain.

When I got properly and stable anticoagulated all the neurological issues disappeared but not the Tinnitus (not much anyway)

So do not let them do anything before you talk to someone who knows APS very well! We need to be anticoagulated when we have this illness.

Best wishes from Kerstin in Stockholm

[Billie-Jo79 in reply to Lure2]

Thanks very much Kerstin! My memory is so poor at the moment I completely forgot about joining up to this site and posting these comments! Do forgive me for taking so long to thank you for your very informative reply!

I'm in the UK, so it's sort of a"get what you are given" doctor wise...(unless you can afford to pay to go private) I will certainly be a lot more tentative before letting any surgeons near my brain! Thankyou so much!

Would a rheumatologist be the right specialist to see? I'm already under one of those for the 'Fibromyalgia'

Thanks again and sorry for my late reply.x

[Lure2 in reply to Billie-Jo79]

You do not have to apologize, glad if I can be of any help. We are all different of course but the neurological symptoms are very often the same.

Sometimes APS is diagnosed as Fibromyalgia or even MS by Doctors that do not understand our illness. I had Micro-embolies

and they are not usually seen on a Scan of today. They are so tiny. I had a lot of them.

A Rheumatologist or a Hematologist are the two types of Doctors that most often are specialized in APS.

Please see a Specialist and tell us how it goes for you also.

Kerstin