Scintillating Scotoma. Lovely new addition!

Hi all, just a quickie. As some of you may know by reading some of my previous posts, I am relatively new to all this. Diagnosed with MAV and now seeing Dr.Silver.

My main symptoms are dizziness/rocking etc however I have just had a rather lovely experience of scintillating scotoma!! Have only had this a few times over the years. It is not one of my usual symptoms. Wasn’t very nice! Anyway, my question is does a migraine headache or something like scintillating scotoma always trigger a chronic rocking episode? I am still not sure how it all works. I have been dizzy since January, seeing some improvement on propranalol so this was a bit of a surprise!

Thanks for reading

Kathy x

Well, it’s a few hours since my ‘episode’. Rather disappointed to say I feel more dizzy than I have done lately. What a pity. I expect this is quite normal on the road to recovery? I am hoping it’s not going to stick around for long. In your experience is it possible it may only last a few hours?!!

Kathy x

Hi Kathy,

I had my first migraine including scotoma in 6 years when on a calcium channel blocker last year (sibelium). I think the meds can sometimes produce the opposite response to that intended on occasion

Thanks for responding :slight_smile: The opposite effect?! Wonderful!! I haven’t had any problems so far with propranalol. I have been on it for weeks.I hope this doesn’t mean I need to stop taking it. To be honest I can cope with a bit of the old scotoma if it means being dizzy free. It may be nothing to do with the meds. Who knows?!! Anyway, hope you are doing ok.

Kathy x x

Kathy, I get these visual migraines on occasion. For me they are unrelated to the VM. Mine are triggered by certain light conditions, namely bright grey natural light. Twice they have occurred when I have been washing up and the light has shone on the silver cutlery and dazzled my eyes somehow. I get approx one per year for the last 10 years.

Dr Surenthiran advised me that different parts of the brain are reacting with different types of migraine. So with normal headache migraine it is the blood vessels around the brain that are in play, the visual migraines come from the optic part of the brain and the vestibular migraines are from the brainstem area which controls balance.

So there is a chance the scotoma is not related to the VM or the medication you are taking x

Jem, you are a star. Your post is really helpful, need all the information I can get to deal with this. I am still trying to remain positive. A traditional migraine followed the scotoma so am feeling a little out of sorts this evening. Probably didnt help myself to relax post migraine, instead chose to frighten the living daylights out of myself by watching a horror!!

Remember we were talking the other day about how we felt Dr Silver focused very much on how our head felt and not the dizziness? Well since talking to him about it I have noticed that there hasn’t been a day when I don’t have some sort of fullness/pain/pressure. Generally it is very low level stuff but I have been so caught up with my dizziness that I wasn’t noticing it.

How are you getting on? I hope you are making progress. Did i read somwehere that you were considering being tested for lyme? Apologies if I have you mixed up with someone else!

Thanks again Richy and Jem. Two of the first people I chatted to on here :slight_smile: very grateful X x

Glad to help Kathy. Hopefully you won’t have another scotoma in a long while now!

I have considered Lyme but I am a bit on the fence about whether I should get tested a) because of the cost and b) because there are so many debates about how it is treated, the best way to treat etc. It is all so complex. At the moment I am just following the VM route because nori has helped me. I am due to see Dr Surenthiran but have had to delay it again because I think he is still away. His secretary said he is back next week but I want to be certain he is there before I travel all the way down to Kent.

It’s great the Propranolol seems to be helping you overall x

Kathy,

I am exactly the same regarding the head pressure/mild head pain etc. Since filling in the diary sheets I’ve not had one day where my head feels crystal clear which has surprised me. I never used to monitor these symptoms because the visual vertigo is the most prominent one for me. I guess this is why Dr Silver focuses on the head pressure/pain symptoms because I probably would never have mentioned it otherwise.

Jem, hope you don’t have to wait too long before seeing Dr S. Do you stay overnight?

Kath

Hi Kath

Yes we kind of make a mini-break out of it so we don’t have to travel there and back all in one day. It’s probably better that it isn’t next week because the weather is so cold. Hopefully it will be warmer in May!

Are you on Propranolol now? Did the Lyrica not help in the end? x

Hi Jem,

The pregabalin has made me itchy so I’ve come off it and started the propranolol.

Yes, it will be better to travel when out of snow season. Good idea to break the journey up with a mini break, it must take 4-5 hours each way?

Kath

Yes I have only been once to see him and it took about 4 hours or so. It’s a long way but as I say it’s better to break up the journey and stay over somewhere nice on the way. Apparently some people travel overseas to see him so it’s not that bad I suppose.

Good luck with the Propranolol! x

Just having my second one ever (or is it third?). In any case they are very rare for me. It’s been a super busy day so not entirely surprised by the outcome.

I wonder if there is any way to calm these down or do you have to wait for the wave to pass through your visual cortex?

1 Like

Sorry James. Those make me so nauseous. And afraid. I never have one that doesn’t go ugly and quick and long. Maxalt or another triptan could maybe get it if taken immediately. Otherwise, follow the migraine rescue protocol. Drive down your triggers and increase thresholds in whatever emergency fashion you can. Drink a Gatorade.

2 Likes

ooh no worries, for me I’ve not had a painful one yet, it just gets in the way of working or consuming visual media. It’s so far past after about 30 min, but can’t be sure my eyesight is back 100% lol. Thanks for the suggestions.

1 Like

It’s not the scotoma that bothers me. It’s what comes after. Well, once while driving. That was terrifying.

Just know the scotoma is MAV in the background so get diligent with your MAV hygiene habits for a couple of days.

2 Likes

These are definitely triggered for me very occasionally.

Today I took my laptop to a cafe, planning to do some work after a small meal.

Well it wasn’t uncomfortable but the whole laptop work thing didn’t work out because the cafe had those funky vintage light bulbs and in combination with the natural light triggered a scotoma.

It didn’t really bother me much, I didn’t panic and it didn’t escalate to anything else (as is normal for me). I still enjoyed my meal but it was hard to read the menu at times, and operating a laptop was definitely out for an hour or so.

It does make me wonder if the scotoma is set off by a resonance affect of the flashing light signals across the cortex.

Anyway, very lucky it’s just an inconvenience and a funky light show for me, but I appreciate others may not be so lucky. Sorry for you.

It’s weird how, if the tinnitus is also caused by a similar thing in the trigeminal nerve (does anyone know for sure?) that this isn’t as discontinuous as the scotoma … oh well!

scotoma is an aura symptom normally, as you probably know. if you didnt get any symptoms afterwards, i’d guess silent migraine triggered by the lighting

1 Like

Scintillating Scotoma: I usually call them “auras”. Did you feel nauseous and “off” afterwards? This is usually how I feel after I had one.

1 Like

Sorry to hear that. In my case I’m really lucky. No after effects whatsoever (touch wood). Very strange!

Bear in mind though @Katharina I’m well into a phase of remission. I had all kinds of much worse episodes in the first 3 years though my scotomas specifically have almost always had no major ill effects.

1 Like

yeah that’s textbook silent migraine. close cousin of VM.

1 Like