A year after I first posted on this site, I am pleased to be able to report that I have made a full recovery. For those interested in my ‘journey’ please see ‘Lindsay’s Diary’ - this will give you my full story.
I have gone from never thinking I would get my old life back to doing everything that I used to. Over the past few weeks I have gone back to playing hockey which was the ultimate goal for me - I have played since I was nine years old and wasn’t ready to give it up!
I am still on my medication but plan to slowly start decreasing it over the coming months. I am in no rush to stop taking it.
When I last posted in February of this year, I was very anxious about relapsing. Lockdown then happened and I decided to get a job working in my local supermarket as my normal work was all cancelled. I spent 12 weeks getting up at 3am to start work at 4am as a personal shopper, walking and lifting in a supermarket for up to 8 hours. I coped with this without relapsing and in fact the activity helped with the last bit of my recovery. I am no longer anxious as I feel pretty sure that if I can cope with the physical stress of that job, then I’m going to be OK.
I have also introduced all the 6Cs back into my diet with no adverse effects (apart from a slightly bigger bottom). I was always fairly certain that diet didn’t affect my condition but it was so hard to know what made me better or worse that I couldn’t be sure. On a recent holiday to France I ate a serious amount of cheese and chocolate as well as drinking copious amounts of wine. Apart from being mildly hungover from the wine, I was otherwise fine - much to my delight!
I became chronically ill after suffering from a virus - I believe that the virus injured my vestibular nerve which then caused my brain and CNS to have a meltdown. This was diagnosed as Vestibular Migraine. Rest and drugs helped stabilise my brain so I was then able to follow a program of Vestibular Rehab under the guidance of a therapist. Getting back to an active life has completed the rehabilitation of my balance system and my brain is now operating in its normal state. My condition was never episodic and although I had bad days and better days my recovery was slow but consistent. If you are reading this and have had problems after an illness or injury of some sort then I think you can be very optimistic about making a good recovery - it won’t be quick and it’s hard work but you will get there.
It seems to me that Vestibular Migraine or MAV is a ‘catch-all’ diagnosis for when doctors don’t have a better explanation for a certain set of symptoms. If you read through the posts on this forum then you will quickly realise that while we have many symptoms in common, there are many different manifestations of this condition on this site. My best advice is to try and find the posts that have the most in common with how your condition behaves as this will give you the most relevant information to absorb. Stay positive and prioritise your recovery above everything (where possible). I read and watched everything I could about Vestibular Migraine and its treatment which really helped me feel as if I had some control. The knowledge I acquired also helped me my steer my GPs who were pretty clueless.
If you are feeling as desperate as I was when I was at my worst then know that you are not alone - you may be suffering but you will get better and you can make a good recovery - this too shall pass. Please do let me know if there is anything I can do to help you…
Best wishes to everyone.
I’m so glad you’re doing well! I was close to 100% and just suffered an illness and all my symptoms are back. It’s so discouraging. Do you have any advice?
Well done Lindsay. So good to have another post in this Category after what seems to be a pretty long time! And thanks for taking the time to document your case in a Diary. Good luck with titration and enjoy freedom!!
Congrats Lindsay ! Long may it continue !
For others who are curious what the meds you are taking. Below is a cut and paste from your wiki post.
I started Ami 20mg in Jan ’19, Verapamil 120mg in Mar ’19 and Venlafaxine 75mg in July ’19. I have no plans to reduce my medication anytime soon.
Ah The Canal Boat Lady. So very happy for you. Just goes to show it is possible to gain total control.
A prompt diagnosis and treatment and an ability to be able to tolerate several preventatives also helps greatly. Lovely post full of useful advice. All the Best. Helen. Thx so much for coming back to finish your story. That will be so much help to future comers.
good combo!! you need a doctor that is willing to mix some of these meds together!
or find multiple docs and you mix them Effexor, Ami and verapamil are standard fare for VM. No exotic cocktail like Dr.S brews up sometimes.
It certainly would seem so. A good combo on this occasion. I must admit to being surprised at a UK Doctor permitting such innovation. Unless it was on a specialist consultant’s specific instructions of course. Generally they are conservative in the extreme.
I guess we can put this success story down to a successful combo. Unfortunately many don’t get such opportunities.
Some interesting comments here. Just shows the variations between countries. Effexor isn’t considered standard fare for MAV in England. Far from it. Even the migraine specialist neuro I saw doesn’t rate it for migraine prevention at all. She dismissed it totally. Just out of interest what exotic cocktail were you thinking about? I always thought Dr S didn’t appear too keen on much by the way of combos? I must have missed something here.
It was me that drove the drug combo. Mr Bannerjee in Leicester had me on the first two. I started on Ami 20mg but when I titrated to 30mg it made the constant sensation of my heart beating unbearable so I went back down to 20mg and went back to Mr B. I wanted to stay on the 20mg of Ami as I had seen benefit from it so we agreed together to add in the Verapamil. This was a game changer and within days I felt markedly better (it got rid of the heart beating sensation which was amazing). When I had a set back in the summer from starting VRT without proper guidance (it sent my balance totally awry) I went to my GP and asked to be put on Venlafaxine. I had rigorously researched the best medications and didn’t want to lose to benefits I had gained from the Ami and Verapamil. I think it make sense that a combo works - as we all know there is no specific drug for Vestibular migraine and the symptoms are many. Ami works for headaches, Verapamil seemed to do a good job of calming my sensitised CNS and Venlafaxine helped with anxiety and visual-dependence. The VRT I then started was able to do its job. I can’t stress highly enough how important it is to research and own your treatment. I am lucky to have a relatively well-informed GP but I still know more than him. With the exception potentially of Dr S most Neuro-Otologists don’t specialise in MAV - it’s something they treat alongside all the other things they do. Also as I said in my post, I don’t believe that any individual’s experience of MAV is the same as another’s therefore an individual treatment protocol is what will work. Unless you have the resources to pay for a personal doctor I don’t think you’ll get one who’ll look holistically at your condition - most will prescribe a drug and send you on your way hoping that you won’t have to come back. I know that I’m lucky that I had the means to pay for consultants and VRT specialists but for me there was no choice - I would have carried on trying everything I could until I found my way to wellness. Recovery was really hard work and pretty unpleasant at times as I titrated through drugs and worked out how VRT would help me. I never gave up and looked for another solution as soon as I was sure that I given something a good chance to work. Working with people who have post-viral and other long-term chronic illnesses is something the NHS in the UK is very poor at dealing with as ‘Long-Covid’ sufferers are now finding.
Also I don’t think it was just the drugs that has made my story a success. Giving myself the time off work to recover and VRT were critical elements of my recovery. I also did a lot of mindset work and meditation and I found this really important. I think you have to look at all elements of what it takes to get you better. Drugs are one element of a holistic approach that I believe is needed. I would also stress is that what has worked for me won’t work for many others on this forum as I think we have different root causes to the issue. Our symptoms may be similar but the reason why we are suffering will be different - therefore treatment plans need to reflect this.
Go back to what worked for you last time. Use meditation and mindfulness to help with the anxiety - you got better before, you can do it again and I found with every set-back I had, I got better quicker each time. Getting back the basics of your treatment plan and building life back up slowly should help. Good luck!
Yes, totally true. Drugs are only one component. Enjoy being healthy and you again!!
Dr.S uses a pizotifen + Gabapentin combo as his staple…if that fails he adds a lamictal…and sometimes he uses drugs like Clonidine which is used to treat withdrawal…In some cases he has even used Periactin
He’s got a friend of mine on Nortriptyline and Candesarten which is a drug being used more and more in the UK for Migraine prevention. It was on my list to try next if I didn’t get results with the others.
I have only just found this website and your post. It made me cry! Finally someone like me. I got diagnosed only in November after falling ill in August 2020. Vestibular neuritis has left me with a deficit in my right ear and I am having all the symptoms you described except for the sleep thing. It has only been 5 months for me and I cry everyday, feeling like my life is over. I have two young children I’m trying to look after and a part time job in the local supermarket. At the moment my biggest symptom is my eyes. They feel so strange all the time. I think I am experiencing the visual dependence you talked about. I also now think maybe I am trying to do too much when I should be resting more? The audiologist at the hospital said the best thing I could do was live my life as normal but the more I try to do this the worse I feel. I’m sorry for rambling. I just wanted say that your post has given me hope and made me feel a little less crazy, so thank you
Firstly, I’m so sorry that you are going through this. It really is rubbish but you can and will get better.
Have you started any medication?
Also, I’m don’t think you can carry on with normal life (if you are feeling as bad as I was). Before I could start getting better I had to stop as literally everything I did was aggravating my chronically irritated brain. It got worse and worse and eventually the choice was taken away from me as I got so ill I couldn’t get out of bed.
If you can, you need to get to see a Neuro-otologist ASAP. Are you in the UK?