Advice Please

[MerlinB]

Hi everyone,

3 Years ago I fell off a loft ladder and had very mild concussion . 3 months later I had a series of blows to the back of my head. I started to develop a heavy feeling at the back of my head/top of neck.

Over the next few months i developed an increasingly sensitive head, any slight knocks to the head or would trigger headaches, pain in neck and fatigue. Also my existing tinnitus flared up really dramatically.

At the same time I undertook a series of exercises for my knees which involved a lot of up and down head movements and I had to abandon these after a couple of days due to feeling very dizzy and tired

I have seen 3 neurologists all have concluded that I have vestibular migraines, I am currently waiting for an MRI and the only plan that I can tell is the MRI and/or meds such as amitriptyline

I have tried vestibular exercises which made my symptoms particularly fatigue much worse

Most of my symptoms have improved but any moderate exercise such as quick walking, slow jogging, causes pain in my neck and fatigue

Any slight jolt to my head caused by our dog pulling on lead or going over speed bump in the car etc causes pain in neck and fatigue .

I am thinking do I have long-term whiplash? although it is perhaps strange that none of the neurologists mentioned this!

I am on the waiting list to see ENT specialist re balance issues , I have started to see an osteopath

I am waiting for a MRI although not sure what this will show or achieve? and I am concerned that this may be very loud and make my very sensitive tinnitus even worse?

My questions are should I have the MRI?

If I have whiplash and take medication would this mask the problem , I am keen to start exercising again and on meds I would feel a lot better and perhaps overconfident? but ultimately I am worried about making any structural problems worse?

Thanks for your time !

[cat3]

It's often trial and error with medication & exercise. The Amitriptyline (usually started on low dosage) takes a while to kick in, so best to see how that feels for a while before vigorous exercise. Maybe stick to the cycling machines 'til you've gauged effects of the meds.

I've have tinnitus for decades but it's never been exacerbated by repeated MRI scans. I don't mind the banging, but one time I was inadvertently flexing leg muscles to the beat of the scanner's rhythmic sounds ; it had to be restarted due to 'interference' !🙄

You can bring your own music on CD or USB but not earphones. You can then listen on the headphones provided, via a scanner system. Do have the scan Merlin ; it'll be fine, and very useful... x

[Leaf100]

Hi MerlinBI had vestibular like symptoms for a long time, and seeing a vestibular therapist made it worse.

You could also ask to be checked for something called down beating nystagmus .

It's a visual thing.

A neuro optometrist or a vestibular therapist I think can check for it or other things.

The way your eyes and brain work may be a bit messed up.

An MRI doesn't hurt, and don't be surprised if it doesn't show anything - ans it can rule things out, so why not.

Also watch for mediations. Sometimes they make things worse.

Amitriptilyne , for example , was a horror for me. I felt a lot better without it. Your mileage may vary.

You can ask for medication to help with the process of the mri. The machine triggered tremors in my case, and I had to go back later and do it while medicated to stop all that. The drugs also made it so I don't remember it at all.

I've been told just keeping your eyes closed and imagining being somewhere else works. You can put something over your eyes I think, it can help.

They can be helpful , for example they can also do another one later and see if anything has changed.

Keep us posted.

Leaf

[MerlinB in reply to Leaf100]

Hi Leaf, thanks very much for your advice, I think I will go to the MRI afterall , its a bit of a no brainer if you excuse the pun! Not heard of downbeating nystagmus I will look it up! Thanks again for your time my friend, ! Merlin!

[Leaf100 in reply to MerlinB]

You're welcomeThere is a machine used to detect this properly - you lay down and a physio moves you certain ways and the machine records your eyes.

Here is an article about it,

vestibularfirst.com/downbea...

Bi is something that can cause it.

Leaf

[Teazymaid]

sorry to hear your head injury problem …(short version 🫤) yes definitely have a MRI and wear ear plugs ( you can get gel like ones from Amazon think they are called deep sleep ) I’m sure that are aloud in the MRI … actually I’m surprised you didn’t have a scan with your initial fall from the ladder …. Please get the MRI .. Sue 😊

[Writeronstack]

Please get the MRI - just like the others say. I wonder why they have waited this long to offer you one, but now that it is here, please go. Yes, the noise is loud. I have used music to 'wave it out' of my mind. Its quite exhilerating to successfully ignore something, because you are actually choosing to listen to something else. I didn't know it was a thing - someone told me. But go, whatever method of blocking out the noise you use. More information is always better than less.

[TreesMTBI]

Hi Merlin B

So sorry to hear about your situation. As Leaf and others have said, go for the MRI to help rule things in or out. I had tinnitus fairly bad when I went for mine and you do have the option to hear (your own) music or whatever, that they pipe through the headset they give you. I’m happy to report that my tinnitus didn’t get worse, although of course we all react differently so I can’t say if you would be affected. But I think it’s an important step in your healing journey, to get the scan. Although mine didn’t show up anything, I’m still in ‘the system’ to get answers, with my neurologist referring me to neuropsychology for possible post concussive syndrome. Of course yours is a different set of symptoms but it’s worth remembering that even though you recall a ‘very mild’ concussion, for the brain it is still an injury not to be underestimated and don’t let anyone minimise it for you.

Good luck in getting the help you need and in the meantime, don’t be too hard on yourself. Getting back to exercise will happen when your body is ready.

Very best wishes for a healthy future.

Tx

[MerlinB]

Thanks everyone for taking the time out to answer my questions and discuss my dilemmas I really appreciate it and feel more positive now!

[Mazvol]

Hi Merlin, I think the MRI is a good idea, having had a few on my head I know what they are like, my last time scan was the most pleasant experience of all in one of the latest models which was very quiet. open and had great lighting effects. The first one I had 8 years ago was in a scanner that was 10 years old at the time and by comparison very nosiy. My hospital has 5 MRI scanners including one in a mobile unit which is good and I have tried them all and there is a variety of designs that affect the experience depending on how open or enclosed the model is. If I was you and a little apprehensive about having a scan I would ask which scanner they were going to use and then you can look up reviews on it and be better prepared or even be shown it prior to your appointment, I have never taken up the offer but they do offer a mild sedative to people who are anxious. To have a fear of the unknown is built into us all as a natural survival instinct and sometimes all it takes to feel better about something new is to have a little more understanding is my tip.

[MerlinB in reply to Mazvol]

Thanks Mazvol, sound advice thank you my friend!

[Hidden]

Hi Merlin, I had these issues and recovered from or adapted to them. Vestibular issues are part of a complicated system called the vestibulo-occipital and vestibulo-cervogenical complex. The vestibular system is a system of canals in the inner ear that have crystals called octonia.

Whiplash injuries can displace these crystals and this is what makes you dizzy.

To complicate this whiplash also causes micro damage to the cervical spine that makes your head misaligned. This can make you dizzy and causes cranial hypertension/migraines.

The vestibular system and cervical spine have nerves that link them together so your body can stay balanced guided by the inner ear system.

To further complicate this the vestibular system have nerves linked to your eye muscle control. If you damage your eyes this also messes up your balance.

Your eyes, vestibular system and cervical spine are all linked together and if you damage any part of it the whole system is messed up.

My eyes, vestibular system and cervical spine were damaged.

How did I solve the issue?

I went to a private neuro-optometrist to check my eyes and visual processing (you can't get this on the NHS). I was prescribed tinted lenses that solved the visual processing issues. Then I found exercises on YouTube to help retrain the muscles that controlled my eyes (you can't get this on the NHS).

I saw a cranial osteopathist who assessed my head body alignment and the muscles that extended over my head, face, shoulders and spine. She said she did not have the skills to fix it.

I went to a physio (an ex top flight ruby union physio) she said the same as the osteopath. She did however try some exercises but these had no effect and even made it worse.

I saw a physio consultant on the NHS but he could not find anything wrong at all. (useless)

Next, I went to YouTube and watched and tried a multitude of physio, chiropractic, yoga, qi gong and mindful movement exercises.

The chiropractic, qi gong and mindful movement exercises all worked. None of these are recognized or available on the NHS, they are from the alternative US private sector.

When I started the exercises, I did get worse initially, 14 days or so, then by slowly repeating the exercises every single day for 12 weeks, my vestibular system corrected and my head lined up properly. However if I tried any other exercises after that (you think that 'you are back') my head became misaligned again. In the end I just continued the exercises that worked and they very slowly built up the muscles in my neck, head and face for a further two years.

I've recently had loads of scans of my cervical, thoracic and lumbar spine and the results show that most of the discs are damaged, there is arthritis, scoliosis and nerve impingements. It basically means I can only do certain exercises and if I try others everything gets messed up again.

I have learned to live with it all and changed my life to adapt.

Not sure why they want to prescribe you amitriptyline because it's an antidepressant and won't solve your vestibular problems. A positive attitude and the will to keep going and experiment will be helpful.

Never give up!

[MerlinB]

Wow what a great post Pink Vision! Sounds like you have been through a hell of a lot and have come out the other side! I am very curious about the physio, chiropractic, yoga, qi gong and mindful movement exercises. which ones worked for you?! I know everyone is different but it would be a good place to start! thanks again, Merlin

[Hidden in reply to MerlinB]

None of the physio and yoga exercises worked very well, but by mixing chiropractic exercises, qi gong and mindful movement I got to sense my body and gradually approach the problem areas. If I tried anything with vigor it just made everything worse, so forcing yourself into yoga positions or forcing physio and some chiro exercises are counterproductive. Instead by merging chiro exercises into slow moving qi gong exercises with a mindful approach allowed me to move towards my limits but not overextend and get messed up. Then slowly by repeating the movements over a period of weeks/months my body adjusted, got more flexible and the physical issues began resolving themselves and by continuing my muscles developed to hold my body in the correct shape. I worked out a routine that suited me and still do it today at least twice a week.

To find the exercises that suit you I suggest going to YouTube and searching for chiro, qi gong and mindful movement for brain injury, vestibular and cranial hypertension. Also look at facial exercises and cervical spine exercises. There are tons of examples you just need to try them and work out a routine that suits you.

Don't expect miracles, some improvements happen fast (a couple of weeks) and others take months to years. It's a matter of getting into a routine and doing them. The real battle is with yourself ie can you commit and keep going with a positive mind? Some days are bad, you pull muscles, others good when you notice improved flexibility and many are absolutely boring when it seems nothing is happening, but if you keep going you will notice the change over time and you'll think 'ah! that's how it all works.'

You may also want to look at the Epley maneuver which could fix your vestibular issues with a few movements.

You may also want to check out the 'loveyourbrain' program website/social media etc for incorporating mindful movement into exercise routines.

It's all doable, you just need to make a decision to find a way, commit to it and just keep going.

I turned rehab into my full-time goal in life and did it; so, if I can do it anyone can do it.

Good luck.

[MerlinB in reply to Hidden]

Hi Pink that's an amazing post, so much good stuff! Huge thanks Merlin!