Severe dizziness in teenager after accident

Smilerme

Hi everyone, any advice here would be so much appreciated.

My daughter had a fall from a horse in late 2014 and suffered a bad Grade 3 concussion and whiplash. Long story short, she's had 7 MRIs, sleep deprivation EEGs, ECGs, blood tests, vertigo tests etc. She's under a pediatric neurologist & has been seen by a neurosurgeon. They say her full recover will "just" take time.

The most life affecting symptom she's left with is extreme dizziness. When I say extreme, I mean extreme. She just crawled on her hands & knees out of the room as she was feeling so bad. Sounds dramatic & put on but it's not as it means she misses out on things she really wants to do. She does it when no one is around or watching. It's not put on.

She's had ongoing physio & we've found acupuncture really helps. But having seen her just now crawl from the room 20 months after the accident, I'm at a loss as to what to do. This is not the life a teenager should have.

Any ideas or advice would be most appreciated.

Thanks

Polo_Mint

Smilerme wrote: »

Hi everyone, any advice here would be so much appreciated.

My daughter had a fall from a horse in late 2014 and suffered a bad Grade 3 concussion and whiplash. Long story short, she's had 7 MRIs, sleep deprivation EEGs, ECGs, blood tests, vertigo tests etc. She's under a pediatric neurologist & has been seen by a neurosurgeon. They say her full recover will "just" take time.

The most life affecting symptom she's left with is extreme dizziness. When I say extreme, I mean extreme. She just crawled on her hands & knees out of the room as she was feeling so bad. Sounds dramatic & put on but it's not as it means she misses out on things she really wants to do. She does it when no one is around or watching. It's not put on.

She's had ongoing physio & we've found acupuncture really helps. But having seen her just now crawl from the room 20 months after the accident, I'm at a loss as to what to do. This is not the life a teenager should have.

Any ideas or advice would be most appreciated.

Thanks

Did she get her ears checked?

intheclouds

Have you sought a second opinion with a different consultant?

How does she manage in school or in public? Does she crawl then?

Smilerme

Thanks for replies.

Yes, she's had her ears checked. Been to an ENT consultant too.

The severe dizziness is not there all the time. It happens when she's over tired or if something else is affecting her (eg she has a bit of a sore throat today) so that is no doubt exacerbating it.

In school she's just finished TY so it was a fairly easy period. If she was miserable she'd try & go to school then if it got really bad she would ring to come home. She had been doing fabulously (ie 6 weeks with no dizziness) & I thought time had finally done the trick. But then she went on a school trip a couple of weeks ago that involved 5 nights in a tent with very little sleep while the days were full of exhaustive physical activity. She had to abstain from a couple of activities (one of which she loves) as she was getting more & more dizzy as the week went on. Worse it was stressful as the teacher in charge may have thought she was putting it on (after all you can't see dizziness) so pushed her hard to partake.

So she came home exhausted & so dizzy she was holding onto me going to the kitchen to eat. She's had 6 acupuncture sessions in the last 10 days and they help but it doesn't go away for good and I'm really beginning to despair

Smilerme

Both the consultant pediatric neurologist and consultant pediatric neurosurgeon say time. The consultant ENT agreed. So with 3 consultants saying that it's a matter of time, I didn't think another consultant was likely to say anything different

intheclouds

Right, so it is improving but still present if she doesnt mind herself or is ill otherwise?

I think then that she needs to be really minding herself (no trips in tents with little sleep) and learning how better to manage flare ups (and maybe investigating ways to do this).

Id reckon that as its a stressful thing to be happening its one of those stressful things that feeds on itself, so it comes, causes stress, stress makes it worse etc.... And there might be thing that can be done to help that like meditation and swimming (or some kind of regular exercise that one can "lose" oneself in).

A brain injury can take a very long time to recover from. Its not even 2 years yet. Just in my own experience my mother had a stroke and the brain was continuing to heal even 5 years later.

So I think patience, minding herself, meditation, and also searching for way to manage flare ups, with the back up of a second opinion if there is no more improvement as more time passes.

Smilerme

Thanks in theclouds, I think that's good advice & I think you are right about the stress.

I get so worried about her that sometimes I don't think straight - I have had yoga / mediation suggested before and I think I need to follow that up now. At least she's now on holidays so we'll have more time to follow it up.

intheclouds

Theres loads of nice de-stressing techniques, its really about finding what works for someone.

Youtube has some breathing/meditation videos and there are apps as well (my dentist actually told me the name of some - Mindify was one i remember).

I also firmly believe that the body can get into a bad pattern after an injury (any kind of injury) and then that becomes the thing that lingers and flares up, not the original injury itself. Its like the body starts using it as a response to stress. So its important to try and break that pattern by learning to recognise triggers, and learning to manage flare ups.

Im sure it will all come good in time alright, best of luck with it.

*eadaoin

Hey there, I'm sorry your daughter is having so much trouble. As someone who's had a lot of balance issues myself, I really sympathise and have a few suggestions!

I would advise talking to Douglas Duffy of the Balance Centre in Dublin's city center. Even if you are not based in Dublin, he may be able to advise of someone closer to you that could help. He does Vestibular Rehabilitation Therapy, which is a form of physio that deals with balance and dizziness issues. I know that he would have some information about this kind of issue after a concussion, and may even have advice on treatments or doctors who could help further. He can also do some balance testing and help her to unravel symptoms and triggers, which can be really hard when you're suffering with something as odd as dizziness which all of us experience differently!

Secondly it might be worth getting her eyes tested, a full on eye test that will make sure that there are no misalignments in her vision, not just a test for regular short or far sight problems. You would probably need to go to a proper eye doctor (I can't remember the word!) rather than somewhere like Specsavers. I don't know if an accident can cause a misalignment, but misalignments can cause cause dizziness and a simple pair of glasses can help refocus the light in her eyes to the right spot.

I know that all of the above sounds a bit mad, but these are genuine medical steps for following when it comes to vertigo and balance problems! They are not known well by most of us because balance issues don't come up as much in our regular lives.

You are doing the right thing by having her see a neurologist and ENT, they are all important steps in diagnosing balance issues too. If none of them have sent her for balance testing, to make sure that there is no damage done to her balance system, then I would push for that. They can do different types of tests that will encourage dizziness and test how well her balance system is working.

If she does have damage to her balance system then it's kind of normal that she would get dizzy when she is tired or sick. Basically when your balance system is damaged you brain does a good job of compensating, but sometimes like when you're tired or unwell your brain falters a bit and you can find yourself dizzy again for a while. The Vestibular Rehabilitation Therapy I mentioned above is designed to help you learn to cope with this, and will teach exercises to help your brain compensate faster.

Given that her symptoms are also triggered by things like lack of sleep and physical activity, it might also be worth researching a type of migraine called vestibular migraine or migraine associated vertigo (MAV). This kind of migraine often doesn't come with the awful headache that most of us associate with migraine, but instead can show up in the form of balance problems and vertigo, often lasting for weeks, months or years if it is chronic. There is a great website called mvertigo.org that has lots of advice on this, and there is now a FB group based on that site called Migraine Associated Vertigo (dizziness) - it's worth joining as they have loads of files you can download with research and advice from doctors who treat this form of migraine. In particular there is a doctor in the UK called Alan Silver who is a specialist on MAV, there are lots of his writings and presentations available for free online if you search around. A neurologist would need to diagnose and treat this, I was diagnosed by a neuro in St Vincent's Hospital in Dublin.

I hope you guys find some more answers soon, balance issues can be so awful to deal with and can badly affect your quality of life. There is definitely more help out there, but often regular doctors are not so great with dizziness as it's an unusual topic. Vestibular.org is an American website you might find helpful, they have loads of advice on different problems and can be a great resource.

Smilerme

Thank you so much intheclouds & Eadaoin.

The physio she attends does Vestibular treatment so they've said it's not that. We also did get her eyes tested & no change to her prescription which is just -1.75 so she only wears glasses for school blackboard & TV. The physio has given her a few "dizzy exercises" and when she's only a little affected they help. However, when she's really bad they don't help much.

The trigger is important and without doubt it's lack of sleep along with stress, which she's very susceptible to. The 2 school trips she's been on in the last 6 months both involved lack of sleep & both set her back a lot. However, I think it's important she goes on them because she's missed out on so much already. Her peers go to discos & parties all the time but she hasn't been to either since the accident. It ends up distancing her from the others & one girl told her she was sick of her being sick. Another said it's not real & that she was just looking for attention. As she tries to hide it as much as possible, and doesn't talk about it or use it as an excuse, then she's clearly not looking for attention.

Then she gets lots of the I had a concussion last week but I'm fine and also the can you not just get on with it comments. She's so used to them they don't even upset her but they drive me mad!!!

I keep thinking she's getting there - and I tell her that so she won't keep thinking she's sick herself - but then another setback occurs. It seems to be never ending. I think I need counselling at this stage!

intheclouds

Smilerme wrote: »

I think I need counselling at this stage!

I would suggest you do all the same de-stressing things I suggested also, a sick family member can be very stressful!!

In fact, maybe you could both do yoga or meditation together which would a nice bonding experience also.

Smilerme

My thoughts too intheclouds.

I've printed out the replies to start looking various suggestions up.

She's a bit better today, thankfully, so fingers crossed!

Thanks again for your time and advice, it's very much appreciated.

*eadaoin

You're right to keep giving it time, and to work on destressing as stress can definitely make things so much worse!

If it continues and isn't improving I would urge you to get in touch with the Balance Center. They focus solely on these types of problems, and can assess exactly what kind of course of VRT that she would need. Normally VRT exercises are tailored to the patient's particular problem and done daily over a course of several months, increasing in intensity as the balance system strengthens. They are not something that's done only when symptoms are bad, at least not until you get to a point where your brain has compensated.

They are also used to cover a wide range of different vestibular problems, so if your current physio has tried some dizzy exercises and said something like 'it's not that', it would worry me that they don't quite know what they're talking about! The balance system is complex, VRT really needs a proper balance assessment first and exercises specifically for the individual problems.

Also, If it turns out that she has MAV the exercises will not help until the migraine itself has been treated and settled.

Lots of stuff to consider! At least you know there is extra help out there if you want to pursue it, if you ever want to reach out further then talk to the Balance Center and possibly a neurologist about MAV.

hearmehearye

Does she keep a diary of sorts? Like mentioning how she's feeling (emotionally and physically ), what she's been eating, how well she's been sleeping, along with anything else that might be harsh on the body, exercise, periods etc. It might help identify what the "triggers" are, although from what's been said already it looks like she needs to take it handy and get loads of restful sleep.

She obviously wouldn't have to share the contents of the diary with you but it may be a management technique for herself.

Stheno

Hi OP,

Just in terms of the timeframe, many years ago I had a horseriding accident where I landed on my head and was out of work for three months with severe long term concussion.

I had problems with strong lighting afterwards which caused me to fill dizzy and nauseous and also suffered from migraines.

In total, it was about two and a half years before I began to feel "normal" again, hopefully that timeframe will help you

YFlyer

She could learn transcendental meditation with you. The deep rest from regular practice will help the healing process.


There is a family rate.

Smilerme

Thanks Hearmehearye, the diary is an excellent idea. I'm going to get her to start one tomorrow.

Stheno your timeline is good for me to hear cause she's in a rugby school where all concussions seem to only last a few days. Thanks!

YFlyer that's another idea to do some research on, thanks.