Migraine or just SS? Next medical steps?

[Frankie Lloyd]

Hello all,

I'm unsure if this group is still active but I was glad to find so many people who share the same experiences as myself - so many people are shocked when you try to tell them what a scintillating scotoma is like! It can feel really lonely when nobody gets it or even understands what you're trying to explain when you tell them 'its not just a headache, im blind!'

Anyway, I started getting migraines with SS at 10 years old. Back then, I'd get the SS aura for 30-60 mins followed by a head-splitting one-sided headache and then severe nausea (which often did end in vomitting). As I've aged, the nausea/vomitting symptom has vanished. Nowadays, the headache isn't even as bad as it used to be (I'm 24 now). My episodes now consist of the SS for 30-60 mins followed by generally feeling weak, very tired and often a little confused and struggling to think. 

I've tried all the classic migraine medicine the UK NHS has to offer. All these medications seem to be tailored towards reducing headache pain, however, which isn't really my biggest issue anymore. 

Can anybody else relate to this experience with migraines fading into just SS episodes? Has anybody had any success with treatments/medications? I've been referred to a migraine clinic and id like to go in knowing my stuff! 

Cheers, 

Frankie

[Paul Franco]

Hi Frankie, 

Yes, it can be a lonely and terrifying experience. I am usually exhausted after an episode.

I had migraines since early childhood but only got SS in the past five years. I am 40 now.

Since getting SS, I don't really get severe migraines anymore.

when I feel a headache coming on, usually a stinging pain above one temple and severe neck pain, I take Celebrex 100mg, which helps a lot, but is not good for continual use and can only be used for five days or so in a row. but it works brilliantly for me.

I agree there need to be meds developed that target SS specifically!

extended periods of going to sleep late during high-stress periods tend to bring the SS on. I also find that going for moderate daily walks helps expend excess stress.

Best of luck, and I hope you get some relief, mate!

cheers,

Paul

[Edith Frost]

This group has been mostly inactive (haha) in different places on the web for about 25 years now! That’s un fricken believable to me. Cheers y’all 🥂 thanks for making it be anything at all.

Edith

--
You received this message because you are subscribed to the Google Groups "Scintillating Scotoma" group.
To unsubscribe from this group and stop receiving emails from it, send an email to scintillating-sc...@googlegroups.com.
To view this discussion on the web visit https://groups.google.com/d/msgid/scintillating-scotoma/efdf23e0-aaf6-438f-9599-5ca49a0d5e6fn%40googlegroups.com.