Hi all, just wondering if anyone suffers with tinnitus as part of SCA? My Dad had hearing problems and tinnitus all his life and when he started to lose his balance we all just assumed it was because of his ears. I also have tinnitus and so does my son, my Dad’s mother had it too but Dad was the only person to have SCA in the family. All his blood tests came back inconclusive for SCA so there is nothing to test me on, I just have to have regular MRI scans to see if my cerebellum has shrunk any (a recent one came back normal)
I have recently been diagnosed with SCA6 which is on the 19th Chromosone. It has taken nearly 3 years to get a diagnosis but after a simple blood test at genetics in Guys and hey presto. I suffer with terrible Tinitus and I also get clicks and like a light sabre sound sometimes. I find it easier to ignore if there is a little light background noise like the radio as trying not to think about it makes mine worse. As I am typing I am fully aware of it because I am thinking about it.Have you had any genetic testing at all. Mine was very quick and the results were even faster? Good luck xx
Definitely tinnitus here. In fact, it was the tinnitus along with balance problems that caused me to be misdiagnosed as having Menier’s disease.
I have always thought that my Dads hearing and tinnitus problems were a major factor in the onsett of his balance problems but his neurologist wasnt so sure. I am under the same Dr as I try to find out if me or my children will be affected by SCA. He did seem a bit concerened when my ankle reflex and Babinski test was not right and says all he can do is monitor me so Im still non the wiser. I fell a few weeks ago when I had a dizzy spell, I think Im just convincing myself that I already have it as the Dr’s dont seem too worried.
Ask to see a genetesist to put your mind at rest. I fall all of the time but have managed to do it with style most of the time. Other times not so good and I do have the scars to prove it
Developed tinnitus after diagnosis of ataxia. Can’t help but think they’re related.
Hi Beverley hope you are well. I asked the neurologist if I could be referred to a genetesist and he said that as my Dads tests were inconclusive there would be nothing to test me on. Can you advise me what to do next? Thanks.x
Well I have the same symptoms as my Mum however she has not been tested. Just keep on at them or ask for a second opinion. Good luck x
Thanks Beverley, will do and thanks to everyone for your help. Another problem Ive always had like my Dad is an extremely weak bladder and my son who has tinnitus is worse, he has to take two lots of medication for his else he has absolutely no control of it.
have you been tested for gluten ataxia? Weak reflexes and Babinski sign are part of that and I think weak bladder is too. Ask your neurologist. I've got tinnitus with my GA or actually G sensitivity
Worth checking out.
Gail Shallcross said:
I have always thought that my Dads hearing and tinnitus problems were a major factor in the onsett of his balance problems but his neurologist wasnt so sure. I am under the same Dr as I try to find out if me or my children will be affected by SCA. He did seem a bit concerened when my ankle reflex and Babinski test was not right and says all he can do is monitor me so Im still non the wiser. I fell a few weeks ago when I had a dizzy spell, I think Im just convincing myself that I already have it as the Dr’s dont seem too worried.
Mum chill ya beans 
but definitely go with the advise above and ask to get checked for gluten ataxia if they are the symptoms at least it’s a step in some direction instead of not knowing where to go. Love ya loads squishes !! x
I have had tinnitus as a symptom at the same time my vertigo and dizzyness set in. I think it's part of the hearing loss that goes with this. I had a vestibular test early on and again last month. They told me the hearing loss and vertigo are likely part of SCA. This time the pressure in my inner left ear was off and this is how they measure Minere's disease so they've sent me to an ear, nose and throat surgeon to see if he can help with the inner ear stuff. My mom had this but no testing done in her day. My docs don't have any conclusive tests, but the neuro-opthamologist is pretty convinced I have SCA, and another neurologist agrees. I have normal MRI's, and none of the blood work showed any abnormality. I've had this for 13 years and it's progressing slowly. Had genetic tests to see which SCA I have but nothing shows up yet. Trouble is when your dad was tested they only had a few if any genes identified. They are constantly discovering new genes. I would want to have the tests if I were you. And I would like to have any new tests since the last tests but they are so expensive that I'm not sure I can have them with Medicare. My last ones were in 2007. Don't know if any new genes have been discovered since then but suspect so.
Hi, I have it and it is driving me mad. One Dr said to get a hearing aid ( I only have min hearing in one ear and none in the other ear) it would drown out the noise .A few times I have had this really loud wind noise and it feels like my head is going to explode. I don't if it is Tinnitus that is causing it or not but it scares me. I can't get to see the Nuero for 12 months .My GP said it might be caused from pain. But I wasn't in pain the last 2 times it's happened.
The tinnitus I constantly have is like when you have had earphones on really loud or been to a concert. My right is worse than my left and I can only use a telephone with my left. Sometimes it feels as though pressure is building and my ear is going to explode and the ringing noise gets really loud for about 30 seconds. Its at this time that I have a dizzy spell and can knock me off balance, a bit of a pain when walking out and about. Think its time I had a really good chat with the neurologist and see if he can investigate further. Thank you all for your help.xx
Hi all, I have Tinnitus and I wondered whether any of you also have this sort of tearing sound, it sounds like your brains being ripped apart, It only happens when I'm really overtired, wakes me up and is really scary. I haven't told anyone about this because it thought Dr's would think I was mental but as most of you also have the other wierd and wonderful symptoms I have, I thought I'd trust you with it. xx
Hi , and no you are not mental. lol. Mine is like there is a gale force wind in my head. That probably sounds mental but who cares. lol Seriously, it must be awful for you .Many years ago I had real loud "head bangs" just as I was starting to go to sleep.Then one night it went that hard it was very painful and that was the last time it happened. So we all have funny things going on in our heads. Please tell your Dr or Neuro whats happing to you. They will not think you are mental and they might be able to help.
Zhez said:
Hi all, I have Tinnitus and I wondered whether any of you also have this sort of tearing sound, it sounds like your brains being ripped apart, It only happens when I'm really overtired, wakes me up and is really scary. I haven't told anyone about this because it thought Dr's would think I was mental but as most of you also have the other wierd and wonderful symptoms I have, I thought I'd trust you with it. xx