Migraine with aura

[suemarieee]

Is anyone else terrified of migraine aura? its happened to me 4 times in last 15 years and it makes me feel anxious and panicky whenever I think about it. my last one was in March last year and I've ended up going to a&e twice. I start off with a blind spot in my vision which gets bigger and then silvery zigzags making up a crescent moon shape which gets bigger. then I totally lose my vision on left side this goes on for about 20mins. the my vision comes back and I have speech problems and then my left hand goes numb then my mouth. I've been told its def a migraine but it terrifies me so much. I dont get a headache afterwards. I'm always scared of it happening, esp if I'm out on my own with my children. Does anyone else get this and know how to not panic when ot happens? x

[BlueIris]

Last year I was getting these anywhere from once a fortnight to twice a day. I'd love to say they stopped scaring me, but I managed to get them to go away for now.

What I can promise you is that they're totally, utterly harmless.

[suemarieee]

Oh wow that's terrible you were getting them that often. how can you function? how did you stop them? I know they're harmless but so frightening at the time. I thought I was having a stroke one time ☹

[BlueIris]

I was lucky, I quit drinking coffee and I haven't had one in about 4 months.

I functioned because I didn't have any other option. I worked front desk library service while I was half blind and terrified - I think the worst occasion was when I had two in three hours.

[suemarieee]

Oh my gosh, dont know how you carried on working. I had 2 back to back ones once, that's when I went to a&e. was very frightening. do you get the headache after? it always worried me that I didn't get a headache but apparently it's quite common. so glad you found your trigger. it's weird mine are so infrequent (but thank goodness). no idea what triggered them

[Carys]

Bluriris and I have talked about these together, the optical migraine (or whatever the current term is lol- ocular migraine or retinal migraine being used). I used to get classic migraine through my teenage years and 20s. In my 30s they changed to being these ones that affect my vision only exactly as you describe, and I thought they were just classic migraine that weren't progressing to the nausea and headache, but apparently they are a different entity. In my 30s they were really really infrequent and I'd have years between them. They have become more regular now I'm in perimenopause, and they are every few months. They freak me out every single time, they still take me by surprise and worry me hugely. I worry that it will happen whilst I'm out and about, driving, working, that I will have recurrent in one day (that has happened twice) and then I am on edge that this time it will be full-blown vomiting and awful headache. Luckily, fingers crossed to this point they have just been optical effects and apart from feeling a bit tired afterwards that all that happens. I am nervous for days afterwards, checking my vision, convinced its going again and generally anxious. I 'think' I managed to work out that mine are a combination of cyclical (ha if I can call my periods cyclical ina ny shape or form) hormone changes (can't do much about that), combined with not drinking enough water, tiredness and a sudden lighting change like a spotlight. When these occur at the same time, voila. For anyone interested in the condition, here is a link below....



https://www.nhs.uk/conditions/retinal-migraine/


I generally put dark glasses on, shut the curtains and sit quietly with my eyes closed for the 20 mins or so that it lasts. That isn't always possible however, and on those occasions where is wasn't possible I have had the recurrence of symptoms later that day. I try and reassure myself as much as I can that it will last 20 minutes and THAT IS ALL, and that its a benign condition, but I sure appreciate you find it frightening. I had it happen only two weeks ago, so its still strongly in my mind and when it next happens I guess I'll also freak. lol Not much help was I LOL !!

[BlueIris]

I do sometimes get the headache after - what would usually happen was that I'd get four or five auras, and then the headache would kick in.

I still get migraine headaches, but it's only the aura that frightens me. Carys is right; where possible, it's best to lie down and wait them out, but I've functioned through them many, many times before.

[Scass]

About 20 years ago I had these regularly in winter for 3 years. They were always due to glare - so bright office lights or going from dark into brightly lit spaces. If I took myself away from the situation then they would clear after 15/20 mins and I’d be ok. If I tried to power through then often I’d get one in my other eye too & then the dull headache.

Try to keep a diary of what triggers them.
Turn the brightness of your phone/screen/tv down.
If you wear glasses, consider getting reactor lights.


Also keep notes of what makes them worse/better. Eventually you’ll have all the “tools” to deal with them & they will become much less scary. X


Sent from my iPhone using Tapatalk

[suemarieee]

wow thanks guys, its very reassuring to hear from others who have similar even tho I'm sorry that you have to endure the horror that they are. Carys you sound so similar to me. I get really anxious afterwards too. I seem to get a lot of dots in my eyes generally and I always panic they are the start of a migraine. I also often think my hands are going numb when they're not! I think mine are hormonal. I had one when my first baby was 4 months old and then the 2 together 3 days later. then 3 years later when my 2nd child was 4 months old I had the next one. I think I must have gone thru some hormonal change at 4 months postpartum, I thought at the time it may have been to do with breastfeeding and cut right down on both occasions afterwards and then didn't get anymore. the other one I got was when I was 21, no idea what caused that. I'm 36 now. Also when I was a teenager o had several classic ones where I got just the visual disturbances and a headache after. but these ones where I cant speak properly and hand goes numb terrify me. the one I had after my 1st baby that was 2 auras one after another was terrifying. The speech thing was so bad and in the hospital they asked me all these questions like the year and to name pictures like a cactus etc and I just didn't know. it was so so scary. I honestly think its given me some sort of post traumatic stress disorder! I was rushed to hospital in an ambulance by the gp with "suspected CVA". just the thought of ot makes me panic ☹

---------- Post added at 22:23 ---------- Previous post was at 22:22 ----------

Just out of interest do you guys get a lot of vertigo too? I've heard it can be linked to migraine. I get it terribly. no headaches or anything tho.

[BlueIris]

I certainly get spells of vertigo, yes.