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Alex’s personal diary currently 90%

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues:
2004
Number & duration of acute phase(s):
4 large spells
Any suspicious physical event/trauma leading up to dizziness:
None
Start of chronic phase:
2004
Age at chronic onset:
20
Started medication:
2012
Stopped medication:
Still taking
Number & type of consultants seen to date:
6
Diagnoses received (one I’m “running with” first):
MAV
Medications used successfully for MAV:
Failed medications for MAV:
Nort due to insomnia
Non-pharmalogical treatment tried which helped: unsure but recently bought bracelet
Non-pharmalogical treatment tried which didn’t seem to help :
None
Dietary triggers identified:
None
Any hearing loss in either ear:
Yes
Persistent or intermittent tinnitus and character:
intermittent
Other chronic conditions I’m suffering from: none
Medication I’m taking for other conditions: none
Any personal history of migraines:
Yes
Any family history of migraines:
Yes
Any history of ear problems:
No
How did friends, family, and doctors react to your symptoms?:
Not concerned

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)
Wouldn’t want to tempt fate by saying but running 90%
What’s Ongoing: (what symptoms you still get)
Vertigo
My Worse Day Now: (description of the worst day you get now)
Worse day is trampoline floor

Rough History

(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)

  • It all began when …
  • The first thing I did …

Start of Journal

Excuse me if I’ve missed some questions or laid it out wrong.
I’m going to keep it brief because I’ve had MAV since I was 20 and I’m now 35 so too much too mention.
I’ve had large chunks of my life with little symptoms so could live happy and normal. This was using 20mg of Ami a night. My most recent and worst spell was December 2017 it was off the scale I was knocked for 6 with chronic symptoms I spent the whole of 2018 seeing consultants who all looked baffled when asked how I should treat it. I had my diagnosis of MAV in 2012 but this didn’t seem to get me anywhere.
In September 2018 I saw Dr S in Blackheath and he prescribed me Nort I swapped Ami to Nort In straight swap but by December I could no longer sleep so I switched back to Ami. New year 2019 Still no sign of improvement spoke to Dr S and he said stay on Ami and start venlafaxine 37.5. I did this around March 2019. I had slow but steady spells of improvement moving up from around 40% to 80% by summer time I was as stable as I’d been since 2017 so was making the most of it. I still had bad spells lasting anything from a day to a week with a good 2 week interval which was a big change from chronic symptoms not being able to go out without sunglasses on a full day.
I increased dose as advised by Dr S until my symptoms decreased. I now take 2 x 37.5 in morning and 1 x 37.5 at lunch and I’m happy on that for the time being. I’m now around 90% which has give me my life back so I have to pinch myself some days. Was it Venlafaxine (Effexor) that improved me.? Possibly it’s just hard to say but I’d advise anyone who’s hit a brick wall who hasn’t tried it to give it a chance and never give up hope. Another alternative treatment was a bracelet I bought in November which contains different minerals designed to help balance. Sounds like a con but I’d be Lieing if I said my mav hadn’t improved since I wore it so I will be wearing it until it falls off my wrist.
I even managed to pass my motorbike license in the summer which would of been a fantasy couple years back. I still have my bad days but on the whole I’m doing ok at the minute so hope this gives some hope for those of you feeling trapped in hell. Someone on here once reminded me of one of Winston Churchill’s famous quotes “ IF YOUR GOING THROUGH HELL KEEP GOING “
Bracelet link below
https://ionpowerfulbracelets.com/product/men-in-black/

9 Likes

Hey Alex!

I’m sorry to read of your recent MAV struggles! I am so pleased that you feel you’re currently running at 90% however! :slightly_smiling_face:

I put in for my bike test a couple of weeks ago but had to cancel due to dizzy days!! I’m thrilled to hear you’ve managed yours! Thats so cool :raised_hands:

I’ve read about those bracelets before and would be willing to try one! Perhaps you could post a link so we can have a read?

Happy new year Alex! Long may you remain at a good 90%! Wish you well my friend :pray::two_hearts:

3 Likes

Hey, happy new year and thank you :blush:. That sucks about you having to cancel your bike test… but if it wasn’t the right time then best to wait until you’ve stabilised. Think I got lucky with mine as not long after had a bad few days. I booked it up in 4 day intensive course. Have you tried Effexor yet? I’ve always been really sceptical about these bracelet treatments but I had a real good vibe about mine when I tried it on at the motorbike show NEC. I did post a link to the bracelet above does it not show ?
Hope you start to feel better soon feel free to ask me anything, anytime… wishing you well too and happy new year again :partying_face:

Hey!

Yep, it does suck! I bought a helmet and gloves but haven’t yet been able to use them for my CBT! Hopefully it wont be too long before I’m able to rebook :crossed_fingers:

Oh, you did post the link! Haha, sorry! I think im over tired with all the festivities :grimacing:

I haven’t tried effexor no, I did ask my neuro about it and she said she prefers Pizotifen but im sure if I wanted to try she would consider it. I’m pretty lucky to have a competent neuro who is fairly open to new things. I’m currently on 50mg of Amitriptyline and mostly doing good… some days are better than others though. Typical MAV… one extremely positive is that before today I couldn’t remember when I Iast had a headache so thats excellent :pray:

Thank you for your well wishes! :grin:

1 Like

Made your first post a Wiki, so you can keep your Summary up-to-date :slight_smile: Just use the Edit button to update it when you feel necessary.

1 Like