POSITIVE POST 85% recovered

I wanted to wait untill I posted this but I hardly visit these groups anymore because I am out living my life but it’s important to come back and give positive stories to those who are in the thick of this horrible disease.

I have had vestibular migraines probably as young as 10 I would get episodes of it lasting months or years on and off from the age of 14 BUT years of normality inbetween and nothing as bad as what I experienced a few years ago or nothing that warranted a trip to a doctor.

Then 4 years ago I woke up and my world changed I experienced 24/7
Rocky boat
Pressure in my head
Tingling all over
Headaches ( not always though )
Neck ache
Feeling spaced out ( like I’m here but not )
Visual snow
Auras daily
Shaky vision

I’m sure there’s more but this is what I remember .

I visited over 10 doctors some great some the worst , tried over 10 medications with lots of side effects.

Recovery was not days or week for me more months years , this dosent mean yours will be we are all different . I was a shell of my former self, I was bed bound for 6 months to a year , and it took a good 2-3 years before i was living with so many set backs and relapses. I was suicidal , depressed BUT these groups , therapy and good friends ( lost a few too ) got me through.

I eventually took venflaxine 150mg which helped a lot altho even before this I had got to about 60% through time, I have recently added in Botox which has also helped.

I would say I’m 85% back to myself the reason I say 85% is because I still have mild pressure in my head and feel spacey mildly and then it gets worse in shops ect BUT honestly I am so GREATFUL because I never thought id even get here and I am also so sure I will get back to being 100%.

One thing I’ve learnt and accepted is I will always have a migraine brain and that’s ok, people live with a lot worse. I have triggers and that’s ok I live a little more mindful but it’s no biggie because I am LIVING again.

Search my name in these groups and you will see just how bad I was. I hope this post give you all hope , WE CAN RECOVER from this my neuro always said NO ONE is stuck forever but yes it can go on a while and it’s not a quick fix for a lot of us but there is light at the end of the tunnel.

Thank you for everyone here who helped me , sent me a message I have kept my promise of always reaching out to anyone who messages me and spreading awareness of this condition.

Stay well everyone :blush::heart::heart::heart:


Welcome back @Amylouise and thanks for updating us with such a positive experience! All the best with your continuing improvement! :dove:


Thank you for coming back to update the group. Now go live your life and I hope it’s a long time before you come back here, and then only to give the rest of us hope.

I’m so happy for you. I’ve never been as bad as you were.

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Thank you @Amylouise for the positive vibes, wish you all the best.


Great news, been wondering how you were holding up!

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Great thanks Amy it’s great to know there are some good news stories with this debilitating condition. The videos you posted are where I first found out about VM and helped a lot in the early dark days…

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Such excellent news. I’ve read a lot about your story the last 6 months. Love that you’re doing well

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Amy!!! I was just thinking about you this week and wondering how things were going for you! So absolutely thrilled to hear that you have had good results and are doing well and sound happy and, crucially, have made some sort of peace with your condition.

Did you end up moving to the US as you planned? I haven’t been keeping up with your posts!

Amazingly my symptoms have improved too—I had plateaued at a kind of ugh medium level for 18-24 months, but this spring things improved noticeably and I’m now able to exercise regularly again and look forward to slowly doing more life activities. It’s a slow re-entry but it feels AMAZING after functioning at like 30-40% for a couple of years.

So happy to hear this great news! I remember when we were both struggling so much and so confused and at a loss about what path to take, what meds to try, and how would we ever manage. It is proof that treatment and patience work (although it’s obviously not always a straight line). Hope your summer is great and as enjoyable as possible with minimal symptoms! xoxoxo Lorissa

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Great story.

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Haven’t been on here In months but have read the lovely messages thanks all so much :slight_smile: I’m
Actually now trying taper off venlfaxine as I am having regular Botox and want a baby this year so I will keep you all posted . I do hope everyone is well x