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Getting somewhere,visual symptoms and a question

So I spoke to a neurologist around two weeks ago who has given a probable diagnosis of VM. I was sooooo nervous for the call because I thought he was going to tell me he didn’t know what was wrong. But it was actually very reassuring :slight_smile: He’s given me a treatment plan and was honest that it could take a while, but reassured me that I would see some normality again. He was so lovely and really sounded like he wanted to help me.

My symptoms are worse than they’ve been before. I’m spinning 24/7 and have been bed bound for a few days. But, I feel much more calm having an idea and reassurance of what’s wrong.

I hadn’t experienced any visual symptoms until very recently and honestly they’ve really scared me. In the last few days, I’ve experienced flashing lights, shaky vision and ‘blobs’ in my eyes (not sure how to describe it- kind of like when you look at a light or the sun for too long and then you get floating black/yellow dots in your vision?).

I have finally plucked up the courage to start amitriptyline! Wish that I didn’t read into it so much to start with but hey ho. I’ve only taken 5mg for 3 nights (I know this is such a baby dose but I had to cut the pill in half for my own reassurance). I’m going to go up to 10mg next week.

I wanted to ask if anyone else had experienced their symptoms getting worse and worse before better and if that is typical of VM? 6 months ago at the start of all this, I was experiencing daily episodes of vertigo and dizziness, but I would always have some point of relief. As the months have gone on and especially in the last month, my symptoms seem to have turned chronic, I have NO relief and I’ve got more and more symptoms as time has gone on. I wondered if anyone else experienced this? My neurologist said this is a big factor in what makes him think it is VM, because migraine changes so much. I have a strong family history of migraine, my mum has been on migraine preventative meds for YEARS and was really really poorly for over a year with migraine. She was never diagnosed with MAV but her symptoms were quite similar to this.

Thank you

I really really appreciate this space and all of you lovely people! <3

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Yes, my symptoms got worse and even chronic when I was first diagnosed. The Amitriptyline helps a lot. Currently, I’m having a bad month, I don’t know what it is, but my meds aren’t helping much. Don’t really have dizziness but the rest of the migraine symptoms like I’m constantly in post drome phase. Feeling out of it, brain fog, I have pressure in my face head and neck. Unbelievable.

Best of luck in your treatment and to getting better!

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Could be stress. We’re all carrying lots of stress.

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Your neuro is right. VM just changes constantly throughout its course. Mine started up with very brief BPPV type vertigo attacks that lasted a few seconds. It took a decade before it became a real nuisance and even longer before it became 24/7. I had extremely severe photophobia for several years but that only developed very late on and, if memory serves, at a different date to the visual affect on the eyes. My experience is symptoms changed increased and just kept on getting very slowly worse pre-medication. Then they carried on changing though not worsening before they started to reduce/settle not all at once but very much individually and that process is still ongoing to a lesser extent to this day.

Btw it helps to remember the drugs will work on the symptoms but if you can stay calm and not get anxious by becoming tense and thinking ‘Whatever is happening now’ at every change - BIg Ask I appreciate - your calm attitude can do as much good as the medication.

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Hi Rachel, you share the same name as my sister except she has another a between the h and e!. So sorry you are suffering, it is such a horrible condition. Can I ask is your vertigo like you have been on a merry-go-round? I have a family history of migraines and get the dots and spots on my eyes too. I feel dizzy most of the time and had an 6 hour rotary vertigo attack a couple of sundays ago. It makes me so stressed out and anxious.I never know when it might happen and get no warning. I take a low dose betablocker but interested to find out how you get on with the amitriptyline, I tried it years ago but I didn’t get on with it.I am prepared to give it another go.xx

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Thank you for your response :slight_smile: Hope I see some improvement with the ami! And I hope you start feeling better soon.

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Very true. I have been a lot more stressed lately! Think I am stuck in a vicious cycle of stress and dizziness.

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Thank you for this! I have been trying to retrain my thoughts recently and I must say it has helped a lot. Although the symptoms are still scary and I wish they’d just go away. But a lot of anxiety has been lifted since being given an answer to what is wrong!

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Hello! Ah that’s cool, I always get asked which way to spell it haha!

Yes - my brain feels like its swinging inside my head as if I just got off a merry go round or I’ve always described it as the teacups at the fair! I also get dropping sensations and as if I’m being pulled side to side. Sometimes it can feel like I’m on a boat in the middle of the sea during a storm too. Mine is 24/7 but varies in severity.

I’m sorry that you’re suffering too, it’s such a horrible thing to go through. I’ve always been anxious but this is something else!!!

I really questioned whether it was migraine, because I’ve never had a headache before!!! But there is a strong family history of migraine in my family. And very recently I’ve started having what I think are migraines! Also looking back I have experienced VM symptoms in the past but never really looked into them much because they always seemed to disappear.

I will keep you updated on how the ami goes :slight_smile: I’ve heard loads of great successes with it so i’m hoping for the best, but I’m also reassured by the fact that there are lots of other meds to try.

All the best with your recovery, it will get better I’m sure of it! :heart: Will let you know if/when I notice any difference with the ami. xx

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Ah bless you. I have had migraines all my life so to it would be unrealistic to think they would go away completely! The rotary vertigo is the worst for me, can’t function at all with it,can’t even talk, I am sorry you get it like that too. Migraines on both sides of my family but I have other conditions too and neck problems so sometimes it is difficult to know what is making it worse. You take care and hope you have success with the ami.I take B2 and magnesium.xx

Yeah I’ve had similar things going on, things that seem borderline hallucinations. I once looked down at the carpet and it was moving like lava, or heatwaves or something. Another time I saw big yellow spiders climbing up the wall, they weren’t realistic, kind of blobs, but I recognized them as spiders. Thankfully I’m not too scared of spiders.

Shaky vision definitely had that. Definitely spiraled downward for a year and then crawled around there for almost another year before starting to get quite a bit better at year three. But I spent the whole first year in a panic mess, knowing that there was something seriously wrong but never stumbling onto a migraine-related disease. If you are getting on Ami now there is a good chance you’ll turn the ship around and stabilize a bit over the coming months and then start getting better.

As for me, no family history of migraine. Another reason probably it took me so long to figure it out!

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Hi
Welcome, sorry to hear of your suffering. Yes my symptoms definitely got really bad, and got worse and worse, I had daily symptoms of vertigo, visual disturbances, I honestly don’t know how I got through it for 2 years but I did. Then I finally saw a neurologist who knew what was wrong. He started me on Amitriptiline and it has been a life saver for me.

Although it took time, I am virtually back to normal now. It took about a year and the dose I needed was 40mg a day. It does take some experimenting finding the right dose, and I always had little relapses when adjusting the dose. It’s worth it though, because for me without the medication I was not getting better.

Best of luck to you xx

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thank you. i’m glad you’re feeling better, I can’t wait to be at that point. I wish i’d started medication sooner. thanks again xx

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