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On this boat diary


#1

First acute balance issues: post-partum, a few years ago
Number & duration of acute phase(s): was dizzy for two-three months then it went away
Any suspicious physical event/trauma leading up to dizziness: wisdom tooth removal
Start of chronic phase: July 2018
Age at chronic onset: early thirties
Started medication: Dec 2018
Stopped medication: -
Number & type of consultants seen to date: ENT, physio, neurologist
Diagnoses received (one I’m “running with” first): vestibular neuritis, migraine associated vertigo
Medications used successfully for MAV: trying propranolol and nortriptyline
Failed medications for MAV:
Non-pharmalogical treatment tried which helped: trying migraine diet and magnesium
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: caffeine possibly.
Any hearing loss in either ear: none
Persistent or intermittent tinnitus and character: none
Other chronic conditions I’m suffering from: none
Medication I’m taking for other conditions: none
Any personal history of migraines: sick headaches offset by stress, few times a year
Any family history of migraines: yes
Any history of ear problems: no
How did friends, family, and doctors react to your symptoms?: friends and family supportive. Marriage broke down 6 months into illness. Also have a close family member with long-term dizziness, who I’ve found incredibly supportive

Thought I might start a diary too. I’ve been reading the other ones and it’s been giving me hope things can improve. I hope I can give back to the community one day through a recovery story. This is the darkest time of my life and hope is what keeps me going.

So for me the story starts a few years ago, post-partum. Had dizziness for 2-3 months, which gradually faded away. ENT thinks I had vestibular neuritis then.

Then had several completely, 100% clear years, but did put my body through a lot of stress from various things.

Then about 6 months ago, I had a tooth out, and two days later, dizziness was there — it felt exactly the same as the first time round, only my brain was different, in a kind of deep fog.

Two weeks in, I travelled abroad to stay with family. Symptoms cleared, which felt like a complete miracle. I was 100% for a week or so. I truly thought I’d seen the last of the dizzies, and probably overdid things. After hoovering the whole house one day, I felt the dizziness and unsteadiness creep back in. I’ve been rocking and swaying ever since.

I tried to carry on living life and fulfill all my obligations but got steadily worse with headaches setting in.
Had my ears tested. All fine there. Diagnosis, probable MAV. Have started taking propranolol 80 mg, now for five weeks. Still very dizzy. Am also having to prepare for becoming single mum as marriage has now broken up.

So this is where I’m at… it’s a bit doom and gloom but I truly have hope that I’ll be posting here and have positive things to tell you, and that new members one day will see how far I’ve come, and myself of course :slight_smile:

Oh and meant to say am eating soul crushing migraine diet now too and have cut out all caffeine but one cup of bitter decaf coffee in the morning.


#2

you will be fine, I send you my sorority so you can go through break up and single motherhood the best way possible. I want to read your diary as you get better.


#3

So… Christmas past, still on 80mg propranolol, but due a medication review soon.
And seeing Dr S next week… will keep you all updated. Feeling daunted about travelling down to London but it’s for the good cause.
Symptom wise, still rocking / unsteady pretty much 24/7, headaches a bit less than over Christmas.


#4

Saw Dr S for initial assessment this week. He confirms I have MAV and has started me on nortriptyline. I’m carrying on with the propranolol as well on the same dosage (80 mg).
For the first time in 6 months I’m feeling I’m on the path towards recovery and getting my old life back. He did say it wasn’t going to be a quick fix, that I should be prepared for it to take time, which I am. At this point I’m happy to take any improvement at any recovery speed :slight_smile:


#5

That’s a great step forward for you Lucy, delighted you got diagnosis and new med to add in. Best of luck with next steps :blush::four_leaf_clover:


#6

glad to hear about this, and you are certainly being seeing by a good doctor that is willing to trial medicines and stay with you through the process. Hope all the other things are settling in. Sending you hugs


#7

Wonderful news Lucy! :sparkling_heart:


#8

So I’ve started on nortriptyline 10 mg.
so far, no side effects, which is good news:-)
I’m clinging on to the hope that the nortriptyline will make a difference. I am feeling so dizzy and queasy, and what with losing my life partner on my side through separation, and having no family nearby to help me with my son, I’m pretty much at rock bottom. I need to stay strong for my son and to give myself a chance to get through this and feel better one day. So here’s to yet another MAV day got through and survived.


#9

Well done Lucy, that’s all positive about the meds.
I have a lovely picture and quote beside my bed and on a day that pushes me to the edge I always turn to it… Its an old Chinese saying…

“to get through the hardest journey, we need only take one step at a time, but we must keep on stepping”.

You’ll get through it all Lucy, your strong, just keep on stepping xx


#10

Thank you :orange_heart:


#11

I’ve been on 10 mg Nort for 3 weeks now and about to move up to 20 mg. So far no side effects and no changes. I’m so scared that it won’t do anything, and that I’ll stay as dizzy and unwell.
I’m hopeful as well though… really need to hope that something will give me at least some of my life back. When I’m as dizzy as I am tonight, it feels like it’ll never go away again, but I just can’t accept that this is my life now.
This is the week I officially become a single mum, my partner is moving out. I’m standing at the beginning of a long journey of building up the self-confidence and skills I need to parent and live alone with MAV.
Will report back about higher dose and single motherhood with MAV beginnings.


#12

Lucy, sometimes we need to make room for better things to occupy the space we create by letting go of something (someone) we love.
You are so strong and you will prevail!
We are all here to hold you up and cheer you on!


#13

You are a star i think!!! Dont give up you will get better
Jo x


#14

Lucy, this has been a huge week for you and you’ve done it, you are still standing and still hopeful. Don’t give up on meds just yet, I found it usually takes a higher dose to take effect so keep going, you will get there and as someone else said, we’re all here rooting for you xx


#15

Beautiful words @Naejohn! Nearly got teary then! Stupid hormones! I agree! Lucy has our full support :kissing_heart:


#16

stay strong! reach out if you need to vent or encouragement.