Hi There
I'm Matt. 46. Been struggling since lockdown with Vestibular Migraine. I've been tested in everything; MRI/CT Scan/caloric testing/impedance study/posturography and everything has come back fairly normal until recently. I have been told that the migraines I have suffered for the last 30 years have had a material impact on my vestibular system and- now I have permanent damage to the vestibular system resulting in 'vestibular dysfunction'.
I have a few months of feeling relatively ok but then without warning
What I really want to know is:
1. Should I keep doing my exercises? My physio told me that I would be ok to stop once the sickness goes away? But it does keep coming back every now and then and I have certainly stopped the exercises once I have felt better.
2. Should I do the exercises when feeling even slightly dizzy?...
3. Has anyone noticed a difference by sticking to a diet (no chocolate/cheese etc) and staying really well hydrated. In the past I have not really taken these seriously because they have not made my symptoms worse when I have been feeling constantly dizzy but I am willing to try anything.
4. I have tried amitriptaline/topirimate/and now propranlol (beta blocker) but none have had any success with reducing the feelings of vertigo.
5. Has anyone got any tips of reducing spinning when lyting down; My number 1 triugger is lack of sleep and currently I am struggling to turn to either side when sleeping which is killing my sleep.
If anyone else is suffering from vestibular migraines please do get in touch.
Take care and thanks for reading this.
Matt
Hi Matt, although I don’t have the same diagnosis as you, a lot of vestibular patients go through similar conditions. As far as your exercises you should definitely continue them as these type of exercises sometimes take a while to feel a difference. However if you feel they aren’t working over the long run that’s definitely a conversation you should have with your doctor or therapist. These exercises are usually made to make your symptoms slightly worse while doing them, but you should feel some relief if you stick to them. Again it’s best to consult your therapist to make sure your getting the most out of your exercises. Diet can play a big part in some vestibular patients, you can check out The Dizzy Cook, she has great tips on vestibular friendly foods. VEDA has lots of resources for all patients such as support groups informative articles and more. Check out the website vestibular.org for much more information. Best wishes on your journey back to health. David….
Hi Matt,
While I don’t have the same diagnosis as you, many patients with vestibular issues experience similar conditions. Regarding your exercises, you should continue doing them because they can sometimes take a long time to feel a difference. However, if you feel like they are not helping over time, that is definitely a topic to discuss with your doctor or therapist. These exercises are often designed to make your symptoms worse while you are doing them, but you should feel some relief if you persevere.
Food can also play an important role for some vestibular patients. You can check out The Dizzy Cook who has a lot of tips on vestibular-friendly foods. VEDA has a lot of helpful resources for patients, including support groups, informative articles, and more. You can visit vestibular.org for more information.
Wishing you all the best on your journey back to health! If possible, you should also try run 3 in your workouts, this can help improve your balance and enhance your recovery.
David
P.S. If you need any more specific information or support, please don't hesitate to ask!
@blackarrow Thanks for your reply..
I'm intrigued about the run 3 game... it made me sick after 1mins of playing.. should I really be playing this?.. how often and for how long? Its the first I have heard; playing a computer game to improve my balance...
Thanks
matt
Hi There
I'm Matt. 46. Been struggling since lockdown with Vestibular Migraine. I've been tested in everything; MRI/CT Scan/caloric testing/impedance study/posturography and everything has come back fairly normal until recently. I have been told that the migraines I have suffered for the last 30 years have had a material impact on my vestibular system and- now I have permanent damage to the vestibular system resulting in 'vestibular dysfunction'.
I have a few months of feeling relatively ok but then without warning
What I really want to know is:
1. Should I keep doing my exercises? My physio told me that I would be ok to stop once the sickness goes away? But it does keep coming back every now and then and I have certainly stopped the exercises once I have felt better.
2. Should I do the exercises when feeling even slightly dizzy?...
3. Has anyone noticed a difference by sticking to a diet (no chocolate/cheese etc) and staying really well hydrated. In the past I have not really taken these seriously because they have not made my symptoms worse when I have been feeling constantly dizzy Survival Race but I am willing to try anything.
4. I have tried amitriptaline/topirimate/and now propranlol (beta blocker) but none have had any success with reducing the feelings of vertigo.
5. Has anyone got any tips of reducing spinning when lyting down; My number 1 triugger is lack of sleep and currently I am struggling to turn to either side when sleeping which is killing my sleep.
If anyone else is suffering from vestibular migraines please do get in touch.
Take care and thanks for reading this.
Matt
You should continue vestibular rehabilitation exercises even if you feel better. Exercises help retrain and strengthen your balance system. Stopping when you feel better can make symptoms more likely to return. Vestibular disorders often benefit from long-term therapy, even if symptoms are intermittent.
