Optical Symptoms - Migraines

[rafletcher]

I'd never had a migraine of amy sort until I was 62, about 3 years ago. Then I had around 1 optical migraine lasting maybe 10-15 minutes, no headache at all, once a year.  And then last week, I had 3 in 2 days, 2 in one evening, one the folowing morning. And then nothing.  I did google causes, which ranged from high blood pressure to bending down.  <shrugs>

[MikeFromLFE]

I've posted somewhere on YACF about my recent experience of optical migraine.
I've not had anything for years, then all of a sudden two episodes.
I /think/ they might be connected to low level stress. Not enough for me to be 'stressed', but as a warning to chill.
We're all wired differently

[Salvatore]

Last week:

- Early hours of Wednesday. Normal Scintillating scotoma, over in 20-30 minutes, or when I fell back asleep.

- Breakfast time Wednesday. Normal Scintillating scotoma 20-30 minutes but left me with a slight headache . Not normally enough for me to reach for the medicine cabinet but as I was about to walk to the station and spend a few hours on a train I took a couple of paracetemol.

- Thursday mid morning, out for a walk with nuncio (up Mynydd Drummau, if you're interested). I was able to give him a running commentary. No headache, but for the first time as far as I can remember, there was also a tiny black spot just to the right of whatever I was looking at, as if a fly was buzzing along a few yards ahead of me. 20-30 minutes as per. The black spot reappeared for a short time some time in the afternoon, but without the scintillations.

Nothing since.

[Nuncio]

Thursday mid morning, out for a walk with nuncio (up Mynydd Drummau, if you're interested). I was able to give him a running commentary.

A one-sided scintillating conversation.

[barakta]

I've had a day and a half of difficulty spelling, typing and anything proprioception related (crashing into walls, tripping on things, falling into walls). I also couldn't read lines of text reliably and was mixing up lines all over the place (helpful when I was trying to help Kim proofread/sanity check BHPC hardware/software documentation).

Upon waking up this morning I had horrid even for me vertigo. I mentioned to friends in an online charity meeting at 10am that my brain is mash and I thought I had a headacheless-migraine.

I took a hefty dose of ibuprofen at 11am as I was all sinusy...

I have had an hour off work at 1pm (unusual to properly break cos term is hectic AF) to eat a proper lunch, soup and cheese on toast.

The face/head pain has just kicked in at 13:45ish.

Fuckety.

So it was clearly pre-drome but I have nothing I can medicate this much predome with given zolmitripan (only thing that does work) doesn't work on non-light triggered migraines and gives me horrendous nausea and vertigo.

Half tempted to bail from work to see if sleeping this off helps.

Also need to kick the hospital PALS again. 2.5 years waiting for migraine clinic appointment, I was chasing, PALS didn't respond to email (Oh Hai AIS and Equality Act you fucks) so I started flashing fangs.

The stupid hospital then admitted:
1) they had not recorded my AIS deafness needs (they run my audiology since 2011!) but promise it is done now
2) they THEN phoned me with a phone (not done then)
3) they sent me a fucking phone appointment with migraine clinic
4) then cancelled the clinic appointment but letters were confusing/messed up.

Replacement f2f appointment is 2 months later. Not fucking acceptable. Need to tell them to sort that or I'm going to LBA them cos the only way to make hospitals do access is sue them.

IF this neurologist tells me "be less stressed" I may well set fire to them.

[HTFB]

You're not going to do anything useful if you can't read / speak coherently. And there's nothing to do but wait till it goes away.

This is a go home pass.

Go home.

It's what I do. Largely because when I don't, even if I could plough on with the task in hand, there's a high risk of someone coming to me with an urgent ad-hoc or a request for information and it's embarrassing just to burble random words at people. (In this way YACF differs from real life.)

At least with a headache you can diagnose yourself. Fritzing brain without headache can be hard to spot in time to be useful.

[barakta]

I bailed from work after sending a chaser to the hospital. Work easily owe me the time at the moment so...

See how today goes as I have student appointments and shit to catch up with. My job involves lots of working memory and executive function so if I am too unwell I'll make dangerous data protection errors so I will be careful.

[barakta]

Migraine clinic appointment tomorrow, the one I've waited nearly 3 years to see (after being fucked about by the other one for 4 years).

Kim has printed my notes and last CrapMigraineClinic letter for them.

My expectations are extremely low, less disappointment that way.

[barakta]

Appointment went better than expected:

I saw the consultant migraine neurologist himself. He was happy to read my 4 pages of med history and notes - easier than me remembering it all cos too much. It cut the questions down a bit.

Doc says I definitely have migraine (I was told I didn't as a teen and haven't had doctor confirmation since, only 'suspicion' and a nurse-led clinic which was clearly limited). We agree lighting is (and even pre worsening in 2015, was always) my biggest trigger. Nothing treats my attacks or chronic symptoms effectively.

I meet the tickbox requirements for CGRP monoclonal antibody treatments (which is what I was told I'd probably need in 2017).

As I've been "floating around" (aka doc is admitting my referral got lost somewhere in the system and I've been waiting since 2017) so he'll expedite that referral - probably ~8 weeks. CGRPs apparently don't have many side effects and officially 50% chance of 50% improvement, but anecdotally seeing 70-80% improvement (don't know if that was people or frequency).

Bonus points to the Doctor, he hadn't just heard of Emeritus Professor Arnold Wilkins and his work on precision tinted lenses and intuitive colourimetry, he knows Wilkins personally. I had given my spiel of "I know the science is very *handwave* but lenses are the only useful thing I have" cos many docs don't even know of it or think it's like the other less evidence based coloured lenses stuff.

It feels like this clinic/doc is trying to slay through a HUGE backlog as quickly and effectively as possible. I happen to know my ENTIRE old clinic was transferred to this one in 2021ish cos the old clinic closed down and I see students with 5/10/15 year histories and letters about migraine stuck with no effective treatment. The old clinic had a huge backlog of people 'awaiting' CGRPs but not able to get them cos that Trust couldn't organise themselves to sort it (I won't accept referrals to that trust at all now).

[hellymedic]

PROGRESS!

So pleased you’ve not wasted your time today!

Good Luck!

[andrewc]

Sounds promising. I hope they sort the new treatment out for you asap and that it gives you the relief you need.

[mrcharly-YHT]

Fascinating.

I wonder if they work for all types of migraine.

[barakta]

I don't know, the criteria for access include 3-4 other treatment protocols failing and at least 15 days a month on average of migraine symptoms (I think I hit this largely cos I have fairly constant low level migrainosity). I am aware from previous discussions at my last clinic that symptoms of migraine are a spectrum, what they called the "fortification spectrum" so the scintillating scotoma are a fairly far-in symptom and not every migraine progresses that far for everyone (certainly the case for me, if I'm seeing aura of any kind that's a significant migraine for me, caused by longer exposure to triggers).

The doc explained to me that when someone has a migraine, if you took a blood sample from the jugular vein, there would be a high level of the CGRP molecule in it which is what seems to correlate/cause symptoms. This treatment aims to block the effect of the molecule in the body ?brain and therefore stop/reduce the symptoms. And possible cos migraines seem to be cumulative in trigger/escalation, if you can break the cycle, the brain becomes less hypersensitive.

[Flite]

So pleased you have managed to see a consultant who listened to you, and will hopefully provide effective treatment

[barakta]

The consultant I saw did this video with the Migraine Trust in 2021.

I wish I'd been with it enough to look him up and find this before my appointment as I could have said I'd seen his video and given better notes. On the other hand, I didn't come across as trying to game anything, just my usual info overload ...

Interesting outline of treatment options, dos/don'ts, the new CGRPs and botox stuff.

[Jakob]

Fascinating.

I wonder if they work for all types of migraine.

They did initially for me, but stopped doing anything after about 4-5 months? Wonder how much of it was placebo effects.

Mine is now mostly controlled by a low carb diet.

[matthew]

And mine are back up in frequency, I've had two or three in the last week so I should probably start a diary. Fortunately they are not painful, they are just distracting with a feeling of brain fog, and then I am dog tired.

[barakta]

Sorry to hear your migraines are worsening again Matthew.

I saw the migraine nurse yesterday for a not-phone appointment. I had to issue a legal threat to get the hospital to sort the initial (2nd time) phone appointment out in a timely manner.

Nurse was very nice but seemed to want my migraine history again which I'd not prepared for so didn't have my notes to hand and she didn't seem to have the notes I gave the doc in Feb. Oh well, we managed. Even though for irony's something, I had a migraine at the time so was not feeling my best.

I'm getting Ajovy aka Fremanezumab within 4 weeks which is when the drug provider will send it to me.

I only had to argue about twice not to provide a phone number for the drug provider to contact me about delivery and refuse to give Kim's number as a backup. This was after we'd had a whole discussion about why/how I got sent phone appointments in the first place  .

Only now do they tell me they want a headache diary, having never told me this before now. I'd started trying to record stuff after my last appointment but I'm really not very good at it.

[Jakob]

Did they give you form for the diary? If not, I'll see if I can find my old one.

[Kim]

Did they give you form for the diary? If not, I'll see if I can find my old one.

Ah that's the thing I haven't got round to scanning.  **fires up scanner**

Barakta will of course use a spreadsheet...

[barakta]

Their sheet is crap, tiny fonts, no space to write: assumes migraine/headache = pain and painkillers neither which usually apply to me. Will do my own and note pain/painkillers on the occasion they're relevant.

Currently on day 9 of a cluster of migraines every day or every other day, or if lucky like yesterday, wake up with 1, get a 2nd later in the day