Author Topic: Optical Symptoms - Migraines  (Read 20763 times)

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #175 on: October 22, 2020, 12:41:48 am »
My migraine clinic is odd, run almost entirely by a nurse practitioner, Julie, whose competence I can't really assess, she's an overworker, hence emails at weekends or when she should be off long term sick! There is a neurologist but no one seems to see her.

Julie thinks much of my balance stuff is migrainous which may be true, who knows - who cares? My logic is that much of my sensory input is completely distorted or whacky, so my poor old brain gets a bit splodey at times.

The problem is with Julie off long term sick, no one is there to DRIVE through hospital processes to get new treatments approved/considered. There's a chance Julie may not return and then 'fuck knows' what will happen.

I've only been waiting for these CGRP meds since May 2017! 3.5 years.

Fortunately dropping one of my other meds seems to have reduced my migraine trigger sensitivity by a huge amount and I've realised it was also bolloxing my balance so I ditched it and am taking amitriptyline for 4-5 weeks for a "brain reboot" of sorts which I've done several times before...

I am torn between waiting for this hospital and talking to my GP about seeing if there's another migraine service in the area that is worth talking to. The current hospital is shit, they flat out refuse to comply with the law on disability accessibility so I have taken them to the Parliamentary and Health Services Ombudsman (PHSO) cos they were so utterly awful and shit.

Re: Optical Symptoms - Migraines
« Reply #176 on: October 22, 2020, 07:21:39 am »
Well, going back on a stricter keto diet has seemingly mostly fixed it again.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #177 on: October 22, 2020, 12:24:00 pm »
I guess that's useful if restrictive!

I didn't stay on keto long enough to tell. In some ways I could go back to that and see over the next several weeks maybe.

Salvatore

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Re: Optical Symptoms - Migraines
« Reply #178 on: November 02, 2020, 12:48:15 pm »
At the other end of the migraine scale, nothing since February then last week a half hour of the usual visual disturbance - no nausea, headache or anything remotely debilitating. It was a neurologist who told me it was form of migraine, and coincidentally I had been reminded of the consultation when the hospital where it took place (the Cambridge Hospital in Aldershot, now closed and derelict) appeared on Who Do You Think You Are? as an example of a WW1 miltary hospital.

Quote
et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

Re: Optical Symptoms - Migraines
« Reply #179 on: November 22, 2020, 07:04:55 pm »
Just a quick reminder to always pay attention to the lights and whether they are "normal."

I very occasionally get optical migraines- usually when tired, stressed, in the wrong part of my cycle and coming down with something.

A month or so ago I had some lights, initially thought it was an optical migraine but didn't develop like usual. So I got meself off to the opticians- I am very shortsighted so at risk of retinal detachment.

It transpired that the symptoms were of a "posterior vitreous detachment" (which has same early symptoms as retinal detachment) and my retina was fine- TBH, I suspected that as after a couple of days the flashing lights in the corner of my vision stopped and a large new floater appeared. I really HATE having a dilated-pupil eye exam though (due to bad memories from childhood). That said, following the PVD, I remain at (even) higher risk for retinal detachment for 3 months or so afterwards.

Being extremely short-sighted, I have a regular optician and they had previously made sure I understood the early symptoms of retinal detachment and the need for a fast response.

BUT- if you didnt know the difference you might wait too long before seeing an optician.The early stage visuals are not massively dissimilar albeit migraine is in both eyes and the PVD appeared in one eye (not always easy to be sure if one or both eyes involved though).   

GC

Re: Optical Symptoms - Migraines
« Reply #180 on: November 25, 2020, 10:11:08 am »
There's a podcast called 'Heads up' about migraines and yesterday they spoke about the 'Boom and Bust' cycle and concept of pacing which I guess is very similar to the Spoons analogy.

I definitely recognised myself in that when I have good days I try and do All The Things to 'make up' for all I missed on the bad days (whether that is work, housework, exercise or whatever). I really do struggle psychologically with just how useless I am on a bad day - even with meds, the postdrome pretty much wipes the rest of the day out for me if not the next day too and I find it infuriating even after all these years.

In other news the clinical trials manager contacted me to say there might be a trial I'm eligible for but it's all stopped because Covid, and to ask him again in January.

Re: Optical Symptoms - Migraines
« Reply #181 on: Yesterday at 07:51:37 am »
Just some more confirmation that it's a combination of carbs and chocolate that will set of my migraines.
5 day road trip, where low carb is near impossible, followed by a 'how much chocolate can I actually tolerate' experiment (answer: not a lot), had them back near daily. Low carb (and no chocolate) has chased them away again.
I have also gained weight again, so as good as time as any to get strict on the keto (again).