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Once a Year - Live in Fear

Just curious if anyone is in the same boat as me.

I dont get daily or regular/ongoing dizziness and my heart goes out to those of you who do. It must be horrible.

About once (maybe twice) a year I get a wicked vestibular migraine. I start to feel dizzy and then need to go to bed and hold perfectly still for a day or two. Literally cannot move my head even an inch or will spin and upchuck. Sometimes the headache comes, sometimes not. But it is truly awful and terrifying.

I live in absolute fear of these attacks. I’m afraid its going to happen while traveling or away from home. I take Amitriptyline and Emgality as preventatives and Relpax when they hit. They seem to help but dont eliminate them.

I’d love to hear from anyone who gets these in a similar pattern and hope you all are having a dizzy-free day.

Thanks

JB

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JB,

I very much hope it stays once a year. That’s where a lot of us started. You’re already on first line and later drugs. I hope others have comments. I’d say you’re already on the right path.

Welcome!

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I agree with flutters. It sounds like you are on the right track with preventatives and I hope it continues at once a year, or less,for you. Are you also taking any supplements as well? Magnesium, vitamin D, vitamin B2 & B12, ubiquinol, feverfew and a few others are recommended. Also diet and routines and avoidance of the 6 C’s ? Allergy testing was something I did as well and I now know what to avoid.
All the best
Mary

All I can do apart from welcome you is to add to the list of similar sufferers and again hope for your sake maybe they won’t become any more severe. My first experience of vertigo ever hit late one November night watching TV when suddenly the TV set appeared to be climbing the wall vertically. That episode lasted about one minute. It was very BPPV like. A couple of weeks later I had my first vestibular attack which was virtually identical to yours. I have no written record but these attacks quickly established a 48 hour pattern. They would always start upon waking without prior warning it seemed and last 48 hours. I could virtually set a clock by them. They would occur perhaps twice a year. I once went 25 months without. After more than a decade they became longer and increasingly more severe but it was 13 years before they ended up with symptoms 24/7.

Of course I am female so mine I am sure were very hormone driven. Different. I am pleasantly surprised you have been able to assist preventatives as the incidence is still so low. Could be much in your favour. Propranolol is excellent for control of my attacks as it is for classic migraine I found. Might be an idea to keep a diary, tedious as they only occur rarely but with mine I did after many years twig that they always occurred about 48 hours after eating out in a party at a busy restaurant. I suspect but have no proof that I never had one start up by any other trigger during that first decade. I have never yet managed to discover the connection so knowing that hasn’t been any great advantage but trying to find triggers can often help.

This is true. I wish mine had been caught early. Early prevention by following everyone’s advice may very well allow you to go the rest of your life without it becoming chronic. Given it’s once a year and very BPPV like, maybe it is just BPPV.

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Ah if wishes were horses eh. The times I have wished that. Suffice it to say about this time every year I get books of raffle tickets to buy as a ‘friend’ of my doctor’s surgery. To buy them a Christmas Lunch and a few other goodies. The tickets fly quickly into my bin every time.

With luck @JBC’s may stay infrequent though I doubt they are BPPV. After many years misdiagnosed with that myself I eventually learnt that if a vertigo attack lasts longer than about one minute whatever it is it isn’t BPPV.

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I totally feel this fear. I would say I’m living in flight or fight response almost all day right now because the anxiety is so high with chronic symptoms and not knowing when they will get worse. If anyone has tips in this. Please help

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I remember being there.

It was only once I’d got almost the entire set of experiences that I started to relax because they started getting more boring and annoying than scary. The scary part is all in your head, if you’ll forgive me for saying it that way.

Amitriptyline was really good too because it got rid of the nausea and churning stomach.

It’s a mindfulness exercise. Learn to let the experience roll through. Separate yourself as much as possible into the person experiencing the anxiety or the dizzies and the soul watching it happen. It can’t kill you. It can only make you uncomfortable. Don’t give it extra fuel. Let it happen. Let it pass. Medicate if it lasts too long. It’s like when I lived in Florida. If a hurricane was coming, we’d open windows on both sides of the house. Better to let the wind and rain come in and pass through than to present a solid barrier and lose the whole house.

18 posts were split to a new topic: Going Chronic

Guys this is someone else’s intro Topic

Thanks James.

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I was like that about 10 years ago. The epsidoes got worse as time went on for me. Hope it stays away for you. I’m glad you may already have a helpful diagnosis.

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