Has anyone had tinnitus as a symptom of Hughes?

[siveinvan]

[Stannington-lad]

HI, I get ringing in the ears from time to time.

Whether it is Tinnitus, I don't know. Never had it confirmed.

[Storky]

On HSF I believe I have read this is quite common. Perhaps have a route round on there. I certainly get it from time to time.

[Izzchick]

Hi Stannington-lad,

I had mild hearing problems a few years ago, was investigated and was told it was likely Tinnitus. This was several years before i'd even heard of Hughes Syndrome!

I now only experience it when i'm very fatigued or feeling unwell, and usually most noticable at night, and thankfully isn't severe.

It's never been formally linked in me to Hughes Syndrome by any of my doctors, but as HughesPatient said, many patients do seem to have Tinnitus and i'm sure i've read about a link somewhere else.

Hope this helps!

[Gadgets]

How do

Yes I have tinitus, I just "try" to ignor it.

I did get a pair of sound masking devices, look like tiny hearing aids but I had to have them turned up so loud to block the tinitus that I could hardly hear anything! Defeated the object so I gave up.

Good luck

Gadgets

[sr56]

I have it all the time ,i try to ignore its always there , just the intensity changes sometimes i hear a high pitch which thoughs me off!! and somrtimes it goes along with my pluse urgh hate when that happens

[SueLovett]

Me too, sometimes it drives me crazy other times I try to ignore it but it is there most of the time.

It did disappear when I had a huge overdose of Heparin! Not advised though bit drastic!

[siveinvan]

thanks all. i was diagnosed with hughes in 97 but the tinnitus started full blast a year ago. acupuncture is actually helping keep in down, but i am sure i read an article by dr. hughes that said tinnitus is a symptom for many....maybe not! have a happy (quiet!) holiday, all!

[siveinvan]

aha. found it. telegraph.co.uk/health/4400...

[Hidden]

Yes, tinnitus is becoming more recognised. Here is the latest copy which I've written for our proposed new website - hope it helps...

Balance problems are among the most common symptoms of Hughes syndrome but hearing impairment is often still under-recognised.

In a small empirical survey carried out by the Hughes Syndrome Foundation in 2007, it was surprising to find that 67% of patients had experienced problems with their hearing.

It is being increasingly acknowledged that various middle ear symptoms, including tinnitus (a ringing in the ears) can occur as a result of Hughes Syndrome, although the exact cause is yet unknown.

Sudden hearing loss can also occur because the blood supply to the nerves in the ear is reduced, as it is thought that the antiphospholipid antibodies can cause micro clots in these small vessels.

Hearing loss occurs in other autoimmune diseases such as lupus or Sjogrens, but even with these conditions patients will usually also have antiphospholipid antibodies.

[penmaker]

My answer would have to be yes I have tinnitus; but I also have some hearing loss, with a 15% greater loss in my right ear. The greater loss is attributed to strokes, there are no physical issues. The rest of the loss and the tinnitus ...take your pick: years of drag racing, firing ranges, rock concerts , or maybe a combination of everything including APS.

Whatever causes it, even after many years it will still bug me, especially in a quiet environment.

[SharontheSheep]

Hi there

I suffer with tinnitus, a whisle, badly tuned radio, gushing pulse and auditory hallucinations (brass band and classical music - could be whole lot worse, lol)

I have periods of not being able to tell where sound has come from - much hillarity when you are convinced there is water dripping in the cupboard under the stairs and it is actually raining and you are so paranoid your long suffering husband has to empty entire cupboard before you will relax (at 3am) There is a medical term for it (no hubbydearest it is not arsuspainus)

Most of my APS probs seem to be in my head - quite literally affecting my eyes, ears and brain and I met an amazing eye doc last month who asked me lots about how it affected my hearing as he told me that people who we affected in their vision almost always have hearing probs too.

The only time it went was when I was on Clexane! I guess I just accept it.

Good luck

Sharon x

[siveinvan]

oh sharon, that sucks. you have such a sense of humor about it but i know your pain. i love for the day this can be resolved; would love to hear *nothing*!

aps has not wreaked havoc as much as been annoying. the tinnitus is worse than the fatigue, muscle and joint pain, etc. SIGH. there's a lot of people out there with tinnitus; hopefully someone will come up with something; in the meantime, many are making a lot of money coming up with fake-o cures.

courage, sharon and thanks for sharing. xx

[blondie26j]

I have worked for an ENT(ear nose and throat) physicians office for 7 years - tinnitus is not related to Hughs/APS --- it is related to hearing loss, you should see an ENT if your hearing loss seems to be in one ear and not both....

[Lhrlovesmar]

Yes, I am living with tinnitus. I never realized that it could be from my APS! I will mention this to my ear doctor on my next visit.

LHR