Hi, I have had an unchanged acoustic neuroma since 2017.
In the new year I started having vertigo attacks which were lasting anything up to a couple of minutes. This lasted for 7 days and I had to take time off work as I'm a radiography assistant in the hospital. Then 3.5 weeks ago in work I had a massive attack which lasted about 3 days and then it got slightly better, but has left me with permanent vertigo.
I was told by the neurologist today that this is probably caused by my tumor, even though it hasn't grown, it can spark off and where its so close to the balance part in the ear, it can spark off these vertigo attacks. He told me as the last one was so severe, I may not fully recover, or I may well recover its hard to say.
Has anybody else suffered or is suffering the same as this. I must say before Xmas I had Covid and before that I was the fittest I had felt in a long time and I did mention this to him, but he doesn't know.
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lushious
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Hi , l suffer with vertigo due to my acoustic neuroma l have bouts of it lasting from a couple of day to a week l went to a vestibular physio and she gave me exercises which sometimes helps l find it happens when I’m really tired frustrating as it forces you to rest .Take care
Hi ,I have also had attacks of vertigo which also happened before my diagnosis with accoustic neuroma.
They seem to come from nowhere although perhaps related to looking up/ stretching ? Such a horrible feeling and very frightening.
Like you my attacks vary in length but on average last about 3-5 days .I think that they last longer but are not as severe as the first ones I had.
I haven't gone to my doctor yet but I know a couple of friends who have been given medication for vertigo .I don't know if it works if you have an acoustic neuroma.
I am so sorry thst you have been so badly affected.It impacts on the whole of you life. You hardly dare open your eyes in the morning for fear of the room spinning.
I have also being taking ginko bilbao as I read this can help.
They told me as its linked to my neuroma then medication will not work, all I can do is go walking and do physio exercises he is going to send me for, and sit and wait to see if it rights itself, it's just a waiting game and I'm not sure I want to he just left like this.
I did wonder if the medication wouldn't work thats a pity.It's horrible when it can just come out of nowhere ie on holiday or something.
Like you mine hasn'tgrown and is only about 6-7 mm.Presumably it's also affected your hearing and given you tinnitus,just to add to the problems it causes.
Interesting about the walking although that's a challenge when you feel unsteady ,I hadn't heard of the physio exercises so will explore that.
Yes i also have had very bad bouts, like soosal everytime i looked up/stretched up my balance would go and i would fall back with spinning sensation, i found that i couldn't even stand up without having to sit back down straight away because of the effect it had on my head, it made me feel like i couldn't get through my days anymore as it was constant. I had surgery 5 months ago to remove it, a large tumour removed. Still recovering from it. Hope all goes well for you too
I have been having awful vertigo with such a headache dizzy and even my eyes arent focusing well. I was sent for physio because of athritis in my neck . I believe this has brought on my vertigo . I have had this a week so far I hope it soon gets better also my tinitisus is ragging. I hope yours get better soon. It brings you down .
Hi lushious, I had gamma knife treatment on my AN in November, this seems to have left me with worse symptoms of vertigo-like symptoms along with tinnitus and loss of hearing in one ear. I am going for a hearing test and tinnitus assessment on Monday. I hope the use of hearing aids may help with the dizziness.At the end of the month I will be going for vestibular rehab for the dizzies.
I have the vertigo-like feeling constantly, I am unable to work, I also suffer badly with constant headaches which I am told are unrelated to the AN. My concentration is shot!
Hi, were you advised not to wear verifocals if you wear glasses as apparently they don't help, they won't do anything with my AN as is it too small and not causing anything dangerous at the moment, but when you are left unable to work its very frustrating.
I actually wear varifocals, maybe I should change this, no one has suggested this to me, but thanks for that, I will put a pair of ordinary glasses on and try it, good tip. 👌My schwan was only 11mm when I had treatment but I was having symptoms from it i. e. Tinnitus, dizzy, loss of hearing so they gave me gamma knife.
I don't know how it's reacted yet as I should get an MRI scan 6 months after (May, I believe)
My symptoms appear worse now.
My eyes don't focus well either, if I am walking I feel my eyes are bouncing up and down, the buildings or trees bounce!
I have to stop, keep still and look to see what's going on!
I tried a lot of medication prior to gamma for the dizzies but did not work for me.
I am hoping over time, I am told up to 18 months I will get some relief, sorry thing is I may have to stop working, but then I am 65 and coming up to retirement age. Xx
I have that exact same problem with my eyes since the operation! they feel like they are bouncing up and down in my head and often describe that to my husband but it is such a relief to know someone else knows what it is like and that it should get better in time. I've only been 6 months since the op and it gives me hope that in 18 months i should feel different, and back to driving again. Thanks.
It is a relief to talk to people that are suffering the same, the eyes bouncing up and down is how I would describe it mow I suppose. At first it was a vertigo attack but now it's settled down, its just left the eyes bouncing up and down, but very debilitating!
I too had Covid at the end of January and my dizziness went into overdrive and my loss of hearing declined. I actually felt very depressed how my symptoms got worse very quickly. Over the last week I’m feeling better in myself but the symptoms are still the same. I think I have just got used to ‘the new normal’ as rubbish as they are. Im still waiting to speak to my consultant but I think he’ll say the say that Covid is too new to know everything about it. Hang in there Lushious. Sending virtual positive vibes.
3 days after losing my hearing in my right ear, I suddenly became unable to walk in a straight line with concentrating on what I was doing. Mine is slightly different that I don't feel dizzy as such, its feels more like I can't balance properly and head is about to droop - a bit like when you are falling asleep. My AN is 11mm so on watch and wait but they are fitting me with a hearing aid to see if it helps the balance. I have problems now getting up quickly out of a chair, I have to stand up and then wait until my balance feels OK. Shopping is a nightmare because of the looking up and down and side to side. I've been told that I just need to learn to live with it and that if/when it grows and I have treatment, the balance may get worse again until my brain comes to terms with it.
That's where I am now, same symptoms as you, the dizziness was when and during the actual attacks, now its leveled out and I'm left with this permanent balance problem.
Don’t assume it’s linked. I have had vertigo as described, came on very quickly, it was diagnosed at the time as labarynthitis, obviously concerned if it was linked to my neuroma on talking to the consultant his response was with speed it came on and symptoms more likely viral than being linked. To be sure I had my MRI scan brought forward. Viral inner ear infection symptoms can linger for a long long time as mine has.
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