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My Son


#1

Hi
I have just joined this forum and I guess I am joining to try to cope with my sons illness.

My son developed VM when he was just 9 years old. To make a long story short he had constant dizziness and violent headaches for 8 months before we got diagnosed by an audiologist. we were referred to a vestibular rehabilitation therapist, who was amazing and sorted out the dizziness for him. I was so elated and everything seemed to be ok until I noticed that my son was getting more and more tired as the end of year came upon us. He had started wetting the bed at 10. The audiologist had explained that his brain was so exhausted it just stopped waking him up at night. Then one night last July, when he had been massively tired for about 2 months, I heard him crying and really sobbing at 4am. I instantly ran into his room knowing that something worse than bed wetting had happened. He had his hands on his head and kept saying " I can’t stop the voices in my head". For those of you that will read this, if any of you are mothers, I am sure that you will relate to my panic. This went on for 2 further nights before I got my 10 year old back in front of the audiologist. He explained that the left side of my sons brain was talking to the right hand side and it was a result of chronic exhaustion, ie the VM.

How do I control his VM? He is in bed monday-sunday at 8.30pm and his activities are limited, ie he just plays rugby. But if I go outside the structure for any length of time, it comes back with a vengeance. My son had a Spanish trip for a week, just last week. I asked the school if I could go with him, in case anything happened like I have just described and so that I could sleep in his room where he would get undisturbed sleep. I did all of that , he had a great time but was up until 10.30-11pm every night and on many tours during the day, and full of games at night etc non stop activity. He seemed to manage ok, was tired but doing quite well. We came home and 1 day later the dizziness came back again with a vengeance, pressure in the head, sensitivity to light, headaches and whilst I try to get him to school, he is home again within 2-3 hours. I am just so worried as to how he is going to cope with this as he gets older. I know he doesn’t have cancer and it is not life threatening but it is so difficult to watch, he is not a moaner but my heart aches for him. He is just too small. He is only 11. :frowning:


#2

Has your son seen a neurologist? There are many meds that can help with MAV.


#3

Is he referring to Tinnitus ? It is bad at night when everything is quiet.

I am surprised the audiologist did not think it was Tinnitus. Can Anxiety Cause Auditory Hallucinations ?
See a Neuro-Otologist and there are many meds that can help MAV. Since it is not chronic yet as he had fun on his Spanish trip, act fast and you can get it well under control.


#4

Hi, thanks for your response. Yes, it is definitely not Tinnitus. we saw both the audiologist who also sent us to the neruo-otologist to be extra safe and she agreed that his brain was exhausted which caused the left side to talk to the right side. In any case, lots of rest will be the cure. His audiologist begged me not to put him on tablets seeing as he is so young so we are trying to avoid it but my worry is that he will start senior school next term and I hope this doesn’t get worse as he gets older. Do you think it could just go away or will this be a life long condition?
thanks


#5

So sorry to hear about your son, you are a great mum - joining our forum will help you.
i’m in a chronic state so as others advised the fact you are in episodic is a positive because you can try get ahead of it before it ever becomes chronic. i stayed away from meds for 22 months trying not to take them but in the end i’ve stnarted, 8 weeks in and now starting to see improvement in head pain & dizzies etc… i know your son is young but do seek out a paediatric neuro who will have lots of experience on meds with young children. outside of meds, i found accupuncture very good for me in terms of my energy, but i’m with a trust very experienced lady who knows her stuff so perhaps research. i’ve also purchased a migrane hat (on way from US) that’s stored in the fridge so lovely and cool to place on head (like a black hat) which i’m hoping gives relief for when the bad headaches kick in - maybe take a look at some of these things too to build his options for self relief. best of luck with path ahead, just take one day at a time and try not to worry too much about the future - stay strong and keep doing what you are doing. take care


#6

Hi Nin,
Thank you so much for your lovely note and for your advisc. I got the migraine head wrap a long time ago and is permanently in the fridge. He is currently wearing it as we speak :smile: I might look into acupuncture like you say. One bit of advise I might have for you is this, my son had constant dizziness for 8 months and was diagnosed as a chronic case. Then he was referred to a vestibular rehabilitation therapist, we live in the UK. Not sure where you are based but if the UK let me know and I will give you the ladies details. What she did with my son, is literally reset his brain. it took 3 months every Friday to Harley street. it is a series of eye exercises that forces the brain to allow the ears to work again ( my son has showed up as having an imbalance in both ears), so the over dependence on the eyes, causes the dizziness ( that is how it was explained to me) and then all the dizziness stopped. It was truly remarkable. If his dizziness continues we will start the exercises up again. His audiologist also recommended vitamin b2 riboflavin and magnesium for the tiredness. We take that every day… although he says it doesn’t help much. Sorry that you are in a chronic state, I totally feel for you as it is just awful. My son cannot get on a boat either as it will throw him totally over the edge ( it was a ferry that brought the whole thing on in the first place), is that the same for you? Thanks again, and hope you feel better soon.


#7

Poor little chap!

Hmmmm … this seems like a very unusual thing to say for someone who’s supposed to have VM … sounds like a red flag to me … I would get another opinion if you have any discomfort with the explanation you received.

The auditory disturbance or tinnitus in VM is a ringing, a hissing, a roaring, but not ‘voices’.

We are not equipped on this site to diagnose, let alone diagnose with such an unusual symptom …

Has he had a full workup including MRI?

You say he plays rugby, any head trauma, whiplash? … was he playing rugby before this all came on? any accidents?

I believe this kind of thing doesn’t just ‘happen’.

FYI there are a few folks on here who’ve developed ‘MAV’ after some kind of head trauma.

I would really consider giving him a rest from rough sports for a significant time to give him chance to settle down. If his VM has any physical basis then any additional trauma could stop him getting better.

That’s a rough thing to deal with and really tough for an 11 year old, my heart goes out to both of you.


#8

Thanks for the good wishes. At the onset, I did vrt for a full year and it got me functioning to a decent level but my migraine is very strong and are exhasberated by hormones so hence my move to meds now, I have young kids so need to try get further along in my recovery albeit very slowly. Hope your sons headache eases today and cap helps. Fennel tea very good if he could tolerate it.


#9

Your son does sound like he has some normal MAV symptoms, but I do agree completely with @turnitaround with the whole voices in his head part. Also, since you said it started on a boat that jumped out at me a bit. How long was the ferry ride? Has he had any rocking sensations, especially during the 8 month dizziness phase? There’s something called Mal de debarquement syndrome, and maybe that’s how it started and triggered MAV? I believe it’s less common than MAV so probably not, but for what it’s worth… I’m not sure at all, and I’ve learned the cause doesn’t really matter as there are so many waste basket diagnosis for the same symptoms. Here’s a website that has good information on it, just in case you think it could be relevant.


#10

Hi,
Yes, understand the issues with my sons episode of voices in his head. His mind was racing a mile a minute and his brain completely crashed. That is what the neurologist and the audiologist explained. The audiologist also mentioned and I am only telling you what he told me, is that in his personal study, over UK, USA and Canada of VM sufferer’s only the one’s with a very high IQ suffered from this. As it turns out, my son does have a very high IQ. But again, this only happened once, last year and never happened again. I ensure that he gets enough sleep and now with the situation we are in, I know the signs, and this week he has been shattered so I have pulled him out of school.

With Regard to Mal de Debarquement, if you have this, you get no reprieve it is constant, which is why he doesn’t have it… My son has an imbalance in both ears. It was explained to me that when we took the 3 hour ferry, it was a particularly bad crossing and that when his balance was thrown so much, the brain shut the ears down ( for balance) and brought the whole VM on. However, like anything, does it matter how you got it…? I guess we have to learn to live with it. Thank you.


#11

Absolutely it does, so you know not to do the same thing again! It also can help you come to terms with what’s happened rather than feel it’s some kind of random injustice. I respect that most people with MAV never know and it might be idiopathic for many which must be a very hard pill to swallow.

Have to say though: ‘A ferry crossing’. Really ?? He plays rugby regularly but a ferry crossing got him?! That sounds a very dubious explanation if you ask me. The human body is not that fragile. There must have been some other contribution?

But yes, learning to deal with it and manage it is now the priority.


#12

I’m surprised anybody with a bad case of MAV could still play rugby. It’s obviously not affecting his spatial awareness, 3D vision, etc. Maybe because he is so young. I would imagine rugby could prove dangerous. Concussion and MAV NOT a good cocktail howver I must disagree with you @turnitaround a bit here.

Yes,

If he’s already a MAV background and maybe stressed/tired for some reason perhaps, it pushed DR Surenthiran’s jug to overflow.

One very bright, sunny day last November I travelled, as a passenger, in our own car to visit friends 25 miles away (which is about twice as far as I’d been travelling regularly at that point). Shen I got out of the car at the end of the return journey I could barely stand and I had a breakthrough attack that lasted several days. Travelling can just knock the balance out when you are already vulnerable.


#13

Hi,
We obviously don’t take Ferry’s any more as advised by the medical team, but does it help much knowing that taking a boat ride aggrevates the situation ? not really, my son still has the condition. You are dubious about a ferry. I am not a medical consultant. The consultant my son sees in the Portland hospital is a specialist in this area. It does make perfect sense to me. My sons balance would have been aggrevated even more on a rough Ferry, and he would not have been able to balance himself and due to his imbalance in both ears, the dizziness kicked in. When he plays Rugby he is on his feet and balanced. When he is on a boat or ferry he is rocking and his balance is displaced. However, in any case, it is what it is and I continue to help him manage it…

Are you not affected if you go on a boat or ferry? ( I was told all VM sufferers are massively affected here)


#14

Oh for sure, many sufferers are. I just question its significant as a cause: it was a single ride and presumably didn’t involve any trauma. Maybe it was the first incident that made him aware of his condition. I became aware of mine the first time when watching a projector screen at work. That’s an important distinction.

Anyway, like you say: good to focus now on solutions.


#15

Thanks James, just so I can get to grips with what to expect, are you able to work as normal on a computer etc. are you able to manage the VM and continue to work normally?

I know that already, if you run the amazon stick along the TV and go from movie to movie, that really causes distress and he looks away. He seems to be fine on the computer, so far but that is just playing games…

Thanks again.


#16

I am now … for about 1.5 years I needed meds to be comfortable doing this. I took Amitriptyline. I noticed a huge difference in tolerance for computers and TV screens with just 10mg of Ami, but 20mg allowed me to use them indefinitely - great drug!

Obviously I respect he is young and his brain is still changing so you need to minimise medication, so take the neurologists advice on meds. However, for me it gave me my life back, largely.


#17

Rugby… I know another MAVer who’s here possibly on account to the concussions from rugby.


#18

Gosh, that is really scaring me. Sadly it is the only sport he likes, he has very little interest in any other. He had to give up Rubgy for 6 months when he had continual dizziness and went back to it afterwards. My husband and I have to think very carefully about his options for the future.


#19

Hi,
You will probably regret ever responding to me but thank you and if you wouldn’t mind I have some other questions. Did you ever get vestibular rehabilitation Therapy? That helped massively for my Son and that is when the consultant pleaded with me not to put my son on the meds. The VRT disagreed with the consultant and said that my son had a chronic case and needed them. At the time, he was ashen colour, having spasms to the head and just miserable and I think she felt very sorry for him. But we got through it. I am of course, thinking to the future. When you say you were on med’s for 1.5 years, Im presuming you are off them now. How are you managing to stay off them and remain ok? ( I am presuming you are ok? )

The other question I wanted to ask you is if you think a steady sleep strucuture is necessary? I have found that getting my son to bed mon-sunday for 8.30pm has massively helped. when I wasn’t on top of things (i.e didn’t know how to help him) last year and left him go to sleep overs, and you know what they are like, it had a very bad effect on him. He’s pretty mature for his age and whilst he would love to go on sleep overs he himself says “I don’t want to have the spasms and dizziness, so if you can collect me at 11pm that will be great for me”, so that is what I do. Do you need to have a steady sleep structure too? ( not suggesting 8.30pm by the way :o) ). Thanks again


#20

Yes, when I said a ferry crossing I meant going from the UK to Ireland, it was a particularly bad crossing and he started vomiting and everything. He had the rocking sensation when he got off the ferry and this was constant for 3 weeks. When I took him to the Dr’s, of course he was diagnosed with Labrynthitis. The consultant audiologist said he believed it was the ferry trip that triggered it, and the neurologist said it was not unusual in boys that are growing fast, whether or which, he has it. I have always in the 2 years, been afraid to ask “will it go away”, now that I have joined this site, I see that once you have it, you have it and you must learn to deal and live with it. Therefore, I am very happy I have joined so that I can ask for advice when I need it… thanks again