New Guy - Strong Vertigo attack question

[angelo_p]

Hi .. new guy here. Got recently diagnosed with Acoustic Neuroma - 7mm in my left ear. This was about 2 months ago. It's bad news but not as bad as my wife and I imagined - which was that I had cancer (my mom died from brain cancer) so I'm looking at the bright side of this.
Anyway, main issue I had for now and something I was hoping people here can help (or give ideas to discuss with my doctor) is my strong incapacitating vertigo.

Just to give an idea, when I have it, the room spins and all I can do is lie in bed - I can't even open my eyes to watch tv or use my phone. When I sit from lying down I throw up immediately. So all I do is lie down and wait.
Normally it lasts at least 8 hours - it used to happen at night or just after dinner which my doctor associated with me having balancing adjustment when night comes.
However it's been changing recently, it's starting as soon as I wake up and the recent one last week actually started somewhere in the middle of the night when I went to pee (I'd say maybe 2-3 am) and lasted until 10-11pm.

So there I was, from sunrise when my daughter gently tapped me to say goodbye (to school) and my wife whispering goodbye (to work), I couldn't even open my eyes to look at them and say goodbye, all through the day, had a few sleeping moments then realised by daughter came home from school and I still had vertigo.
Sunset came, my wife came home - they both had dinner and STILL I was lying in bed until about 10-11pm. No food and drinks the whole day as I can't even sit up to drink/eat as I will throw up.

Haven't gone back to the doctor yet but I wanted to ask here for any ideas so that I can discuss it with my doctor. Have you experienced any of these ? Is it due to the AN or my diet or something else ?

My suspicions as the triggers are :
1. Diet
2. Lack of sleep
3. Too much exercise / vestibular adaptation (I do the head side-to-side thing)

Problem is that recently all 3 are combining at the exact moment when I have the vertigo attacks - had guests we entertained so slept late; also ate some salty foods and just started doing vestibular adaptation exercises (saw a Physio for this).

This is on and off regularly - maybe with 3-4 days of good days in between the vertigo attacks.

Is this actually normal for AN ? Again, I initially thought I had Meniere's and I know this vertigo-attacks is pretty normal for 'MD' but not sure of Acoustic Neuroma.

[golfguy49]

Angelo - thank you for your post.  I have had some balance issues with my AN, but nothing as severe as what you have described.  My AN doctor indicated the placement of the AN is critical in determining in how severe symptoms are for people and whether they will get better or worse, even with possible vestibular exercises.  My balance issues get really bad when I exert myself - any sort of exercise, weight lifting, strenuous house chores (how convenient!), or essentially anything that makes me break a sweat.  You are a level above me - that fact you have serious balance issues that incapacitate you is not something I have experienced, but my doctor did say the #1 factor in deciding whether to have surgery (at our ages) or not is not the size of the AN, but it is impact on your daily life.  Because it may never get better without surgery.  Some of us have seen moderate improvement with our ANs based on what I have read on this board, in my case by largely avoiding strenuous activity, but ultimately I know I am not likely to permanently return to anything near my life prior to the AN discovery without going through the surgery and the recovery process.

[rupert]

The AN is growing on the sheath around the balance nerve.  As the AN continues to damage the nerve,  the signal going through the nerve gets cut off.  The problem is that some signal still gets through and this sends very confusing signals to your brain.  Hence , severe vertigo.  Once the nerve gets damaged enough there will be very little to no signal going through and the vertigo subsides as your balance system compensates.  This happens over a period of time.  During surgery the nerve is usually cut completely to remove the tumor from it.  No more mixed signals but, your balance system needs time to adjust to that.   The time it takes to compensate varies with each person.   Some people who have had AN's for long periods of time have little to no compensation time as the nerve has already been damaged for so long that the balance system has already adjusted.  In the short term I would talk to your doctor about some medications that can help control the symptoms.  They may not completely eliminate them but, you shouldn't have to suffer for long periods of vertigo.

[LakeErie]

I experienced episodes of vertigo before diagnosis, only one really severe one that literally incapacitated me in which I couldn't walk without spinning to the floor and intermittent nausea. Other spells were more minor, but still disconcerting.

Eventually ( over a period of months ) the episodes stopped. On diagnosis of AN much later, it was easy to understand what they were.
I have read of med's that are used to mitigate the vertigo like meclazine and valium, there may be others.

My guess is your vertigo will stop with time. Good luck.

[angelo_p]

Thanks for the replies - hopefully my body will adjust. My doctor did say the same thing (that as my balance nervers get damaged it will lessen) - he even mentioned having 2 patients he did surgery on - one with a big one and another with a small tumor .. the one with the smaller tumor had vertigo issues.

The only confusion I have (and this is probably something I can't really describe properly to my doctor) - some of the replies did mention my balance, my doctor also mentioned it and actually got me a balance test (which came out and said it's out but not too much) .... other than when the attacks happen, I have no issue - every weekend morning and a fews days during weeknights as advised by my physio - I exercise to make my body adjust - ... I jog, do lunges uphill, jog up and down stairs, jog on the beach .. watching tv I do the karate kid one leg pose (haven't tried kicking yet    ) ... I can do all these things without issue except for some slight woozines that last a few secs on some movements .. but then suddenly - as I mentioned, when I wake up, when I'm walking, during meetings at work - I suddenly start feeling dizzy that progresses to incapacitating vertigo (one time I was perfectly fine in a meeting, someone scrolled up a page too quickly - BAM - dizzines and had to Uber my way home while actually throwing up in the car - good thing the Uber driver was cool and had plastic bags and tissues) ...

 Hmmmmmm - the best way to describe is that there's a build-up to it (at least I have a warning - no use though when I'm at work) ... the build-up starts with my tinnitus getting loud and my ears feeling blocked, my upper jaw/cheeks area starts getting hard - my balance is still OK at this point ... after maybe a couple of hours is when my balance starts getting out of whack (like being tipsy but not drunk) - when this happens and it doesn't disappear even with a walk outside - I try to get home as 1-2 hours later the severe vertigo usually happens. The only place I saw these same symptoms are in the Meniere's Disease forums but my doctor said I had none (2 different ENT specialist actually).

The worst is the one that started when I woke up to pee as I couldn't find a reason for it - can't be tired, can't be sleepy, can't be due to food as I was feeling great the night before. Just woke up, went to pee - felt dizzy then bam ... in bed the whole day.

I do have Stemetil to sort of mitigate it but doesn't seem to help (though I might need to up the dosage as the doctor prescribed a single 5mg tablet only every 6 hours when my vertigo happens) - then again I sometimes throw up right after having it 

Ok - quick question then - have you guys/gals experienced the same intermittent vertigo -> then perfectly ok -> then vertigo ? Maybe not severe as mine - I'm just curious about what people say when they mention vertigo ? Is it the same as mine like seemingly ok one day then having vertigo bouts then it disappears for a few days and so on.

[rupert]

I had a severe vertigo attack about 10 years before I was diagnosed with an AN.  It went away but,  then returned about 1 year later.   After that there were no more severe attacks but I felt somewhat nauseous from time to time.  I thought it was allergies.  Who knew?  After my GK treatment I had these nauseous feelings for about 2 weeks a month.  They became less frequent and now over the years and I might feel a bit nauseous once a year for a few days.   That's my experience anyway.  I'm 9 years out from GK and of course about 19 years from that first severe attack.

[angelo_p]

Thanks .. just had another strong vertigo attack a couple of days ago - the bad news is that I had to throw up and go to bed early.

The good news is that it seems to be lessening in severity (I used to need my wife just to stand- the next few ones I could stand on my own to go to the toilet as long as I hold on to the walls, this last one - I can walk in a very drunk sort of way but needed no support except for occasionally holding the wall)  and the intervals are becoming longer (6 days now instead of 2 per attack). Hopefully it's my body adjusting ... anyway I will be exploring in-ear steroids with my doctor and gentamicin (to destroy the balance system). I was able to work the next day with my latest attack.

He did say to hold on for a couple of months and see - if it still continues with the same severity we can go ahead with one depending on which one I prefer - most likely will try in-ear steroids as he had gentamicin has a tiny change of making me deaf and to me seems more of a drastic measure.

[LakeErie]

Yes, Angelo, my vertigo episodes were intermittent. Primary problem was dizziness and a stagger when I walked. They eventually stopped completely. It may have been a couple years of vertigo in total

[Ellen K]

Hi Angelo - I'm so sorry about your vertigo. I am W&W, and was diagnosed 8 years ago. My AN is only 3mm, but as others have mentioned, the placement seems to influence what kind of symptoms one has. For me, I had no hearing loss, no ear fullness, but frequent and severe vertigo attacks. I did vestibular therapy, which helped some and which you might want to try, but it took me quite a while for my brain to make sense of the garbled balance information. I do think there are things you can do to stave off an attack. 1. stay hydrated, always. 2. Get the best sleep you can. If you are having sleep problems, see a sleep specialist. 3. vestibular therapy. 4. Daily walking, especially on uneven track like a nature trail. 5. Massage. I actually get a weekly massage from someone who specializes in calming down the nervous system. Don't go to just anyone - they should really know how to treat chronic conditions. In my opinion, recurrent vertigo causes us to do micro compensations in our neck and other muscles that can make everything worse, and the massage seems to help stretch everything out and calm it down. Good luck. You have my full, deep, and complete sympathy!

[bobbie]

Hi
I am new here. Diagnosed with a 3mm AN 5 years ago. No change in size luckily. I only experienced vertigo when turning my head during sleep and then would awaken spinning. Lately it has changed and I am experiencing severe bouts while just standing or sitting. Comes out of nowhere. Terrible tinitus. Dont know what to do or why it changed. Maybe age?

[gbkim86]

Hi
I am new here. Diagnosed with a 3mm AN 5 years ago. No change in size luckily. I only experienced vertigo when turning my head during sleep and then would awaken spinning. Lately it has changed and I am experiencing severe bouts while just standing or sitting. Comes out of nowhere. Terrible tinitus. Dont know what to do or why it changed. Maybe age?

Hi,

My understanding is, symptoms are independent of tumor size. It sounds odd, but that's what it is. Some people having large tumors don't have any symptom until it grows to 4 cm, but some people with very small tumors can have hearing loss or other severe symptoms. Even if your tumor stayed at the same size, it doesn't guarantee that your symptoms will also stay unchanged. It can be changed as long as the tumor is there and interfere with nerves.

GB

[ANSydney]

My suspicion is that tumor size is not the determining factor for symptoms but rate of change of tumor size. In the early life of a tumor, growth and rate of growth are at a maximum. After a few years, grown appears to plateau ( https://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf ) This cessation of growth (in most cases) gives the body time to adapt - central compensation for balance and things moving along for brainstem compression. It does not appear that hearing is in this category as it is decline with time. There is one way to accelerate hearing loss and that is surgery or radiosurgery. Hearing preservation is not consistent with active treatment. This is my opinion.

[Crazycat]

Could be an inner ear infection.

I had the same thing long before my AN in 1983. Woke up one day and the room was spinning. It stayed like that for over a week, gradually easing up. I went to a doctor who told me it was "viral vestibulitis" (inner ear infection) and gave me a
hit of Antivert, more commonly known as "Meclazine". I can't remember if it worked. What I do remember is that the night before my affliction I had gone out to see a loud band at a local club. The loud noise could have set it off. I also recall a strange visual effect I had been experiencing for several weeks before the vertigo. When I'd wake-up, my vision would roll very slowly, from bottom to top, like an out-of-phase horizontal control on an old T.V.. As I went about my day, the rolling would gradually go away. So I knew something wasn't right. But I think it was the loud music that really set it off.

It is interesting that during the period I was getting sick from the AN, I was a working musician, playing 4, 5, and even 6 nights a week, driving all over, virtually deaf in one ear, lightheaded, plagued with double vision, crippling fatigue and malaise. I couldn't call in sick; neither did I have any health insurance. I kept pushing myself until I literally couldn't put one foot in front of the other and I was in pretty good shape at the time, jogging 5 miles a day on trails through the woods.

I had been pulled over marked lanes and suspicion of DWI four times. One time, and for the first time ever, I actually fell asleep behind the wheel ....and survived by the grace of God. I snapped to broadsiding a snow bank against the guardrail on the opposite side of the road. Luckily, no one was coming the other way.

Inner ear infections are not to be taken lightly; I know a girl who lost her hearing in one ear from an inner ear infection.

[MissMolly]

Hi There,
I have much stronger vertigo with this tumor (in 2009 I had it removed surgically but it grew back). I have been using a scopolamine patch.  You'll need a prescription to get it.  People usually get these when they are getting ready to go on a cruise.  The patch definintely reduces symptoms so I can function. 

[notaclone13]

Thanks for sharing this MissMolly. I have been using Dramamine to ward off vertigo. It’s good to know that scopolamine is also helpful. Meclizine helps some people, but it does nothing for me.