Author Topic: Optical Symptoms - Migraines  (Read 23095 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: December 01, 2020, 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).

Re: Optical Symptoms - Migraines
« Reply #182 on: February 02, 2021, 02:54:13 pm »
Dam, after a significant period without one of these, I currently have a scintillating arc running anticlockwise from 2 o'clock to 5 o'clock in my left eye. No other symptoms except that I was struggling with blind spots when viewing my laptop screen.

Might by an interesting drive home from work later.

Wowbagger

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Re: Optical Symptoms - Migraines
« Reply #183 on: February 02, 2021, 04:20:53 pm »
My sister is currently in hospital after a migraine, which may or may not be incidental to her condition.

She's coming up to 74 and has had migraines all her life. She and I have been the only regular sufferers from our siblings, 6 of us in all. Mine used to be really bad: visual disturbance, headache, vomiting, sleep, then a gradual recovery over 2 or 3 days. Hers were generally worse than mine, involving disorientation and slurred speech. Both of us have experienced a lessening of symptoms over a long period.

Last week she had a bad one. It started in the early evening, and she went to bed. A couple of hours later her partner checked on her and she was completely incoherent. This worried him, he dialled 111 and the person he spoke to decided she was sufficiently bad to warrant an ambulance. They took her into hospital (Addenbrookes) and conducted tests: they thought she may have had a stroke or a bleed on the brain. The tests, which included a lumbar puncture, showed no stroke or brain bleed, so they sent her home. That was on Thursday.

On Friday they phoned her and said "Come straight back into hospital!" It seems that the lumbar puncture had detected a herpes infection in her spinal fluid and the doctors were worried by the risk of meningitis. Apparently it wasn't the usual chicken pox/shingles version of the herpes virus but I know no more than that. She is now in for a fortnight where she is being treated twice daily with intravenous anti-virals. She has had an MRI scan and that has detected "broken blood vessels" in her brain, but she was no more specific than that. She's pretty bored as she feels fine but can't go anywhere because the hospital has been divided into Covid and non-Covid areas. Her ward is on the ground floor, which is a bit of a pain because if you are in a tower block just looking out the window is very entertaining, especially if you can watch over a fine city like Cambridge, or watch the traffic jams building up on the M11/A14.

Her case has proved sufficiently interesting that she has had some research types coming to see her.

I had a natter with her yesterday and she seemed to cheer up after a call from her baby brother.

Edit: apparently the broken blood vessels could be down to high blood pressure, high cholesterol or old age. She told me she's never been diagnosed with high BP, had never had a cholesterol test and didn't feel old. We agreed that it was weird, being the same age as old people.
Eating's a serious business. Don't bollocks around wagging your tail.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #184 on: February 02, 2021, 08:08:22 pm »
I'm sorry to hear of migraine experiences upthread!

I've started gabapentin for pain management and it's giving me migraines on dose change for about 2 days. I'm doing tiny doses and tiny changes over several days per dose to see if we can avoid pissing off my special snowflake brain on side effects which I get from EVERYthing pain management related. It is like topiramate lite for those days tho, especially long work days staring at Stupid Fucking Windows 10 which is too fucking bright, has bad fonts and windows without a proper edge so I can't see stuff properly.

Re: Optical Symptoms - Migraines
« Reply #185 on: February 02, 2021, 08:36:02 pm »
I am very fortunate that I get visual symptoms only with a mild follow on headache. It is hard to concentrate during the event but seems to be mild and short lived.

hellymedic

  • Just do it!
Re: Optical Symptoms - Migraines
« Reply #186 on: February 02, 2021, 09:44:46 pm »
I'm like mathew, with even less headache.
I've had nothing for ages, touch wood!

Wowbagger

  • Dez's butler
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Re: Optical Symptoms - Migraines
« Reply #187 on: February 06, 2021, 06:37:42 pm »
Just had a natter with my sister, who still feels perfectly OK and was pretty cheerful. She's over a week into her anti-viral treatment now so hopes the next lumbar puncture will show that the infection has gone.

She has been suffering from PNS, which stands for Patronising Nurse Syndrome. It seems that when you get past a certain age (and I don't know what that is, but I have a strong suspicion that it's younger for women than it is for men) that some medical staff have a bedside manner in which they treat you like an imbecile. In this case, the Patronising Nurse came to see her, knelt beside the chair she was sitting in and held her hand and told her that she had some really bad news. My sister's heart sank as she thought they had found something terminal. But the "really bad news" this nurse was imparting was that my sister had to stay in hospital for a fortnight for the treatment and another round of tests.

My nephew's wife, also a nurse, used to treat Phyllis in exactly the same way. Phyllis was very polite and never told her to fuck right off with her patronising attitude, but she really didn't like it. And she was about 25 years older than my sister is now.

In my book, on a scale of 1 to 10 of "really bad news", having to stay in hospital for a fortnight when you don't actually feel ill is probably somewhere between 1 and 2.
Eating's a serious business. Don't bollocks around wagging your tail.

Salvatore

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Re: Optical Symptoms - Migraines
« Reply #188 on: February 09, 2021, 10:14:42 pm »
If 2021 is like 2020 2019 and 2018 I can expect a 'scintillating arc' (© matthew) or two in the next few days.
Quote
et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #189 on: February 09, 2021, 11:39:51 pm »
Gabapentin is on the migraine inducing naughty step with celecoxib, paracetamol, topiramate and zonisamide. I was off sick yesterday which if it wasn't "a disability sickness" could have caused me issues with newjob as I'm still on probation. Boss was very pleased I'd explicitly stated "is a disability wot I disclosed" on my self cert cos he can apparently tell HR to nob off if they get annoyed. Cos apparently normal humans aren't allowed to get sick for 6 months when starting a new job.

Have a nasty feeling pregabalin will do the same. Migraine nurse is unusually for her not answering emails (last I heard she was having chemo for cancer so :( ).

I have GP appt on Friday with excellent GP. But I can't risk pregabalin causing more sick leave till May. Fucking brain and its special snowflakery.

Re: Optical Symptoms - Migraines
« Reply #190 on: February 10, 2021, 10:14:58 am »
Managed precisely one (1) telephone appointment with a specialist last year in which they said that they could either recommend me for a medical trial for one of the new drugs or try melatonin as a preventive. Clinical trials have apparently been paused due to high covid cases. Really I am not sure why I am being pushed towards clinical trials when NICE have just approved the new drugs for NHS use for my circs anyway.

They wrote to my GP stating that I should be prescribed melatonin. Nothing happened obvs so I got a telephone appointment which requires some tenacity.

GP said he's not allowed to prescribe melatonin off-licence and said I was to tell the specialist that. Asked why I wasn't doing the clinical trials. Pointed out small matter of Covid.

Emailed the headache clinic cc'ing in the most helpful specialist I've ever had (even though he's not the last one I spoke to, he's the one who made the mistake of giving me his email). Got an auto response saying they were very busy due to Covid redeployment and to contact my GP if the matter was urgent. Laughed tears of hysterical laughter.

Eventually the nice helpful specialist emailed me back asking for my phone number so that the hospital pharmacy could arrange delivery of some melatonin but warned this will take a few weeks.

Migraine days teetering dangerously close to chronic in the mean time (15 days a month or more, last 3 months have been 10-13 days).  Looking at the app where I record these things it seems it was similar last year. May always seems to be a good month though.

Re: Optical Symptoms - Migraines
« Reply #191 on: February 10, 2021, 10:51:09 am »
That sounds dire.  It's bad enough trying to get help when you are "well" but trying to do it while suffering from migraine.........!

Can only wish you all the best.

Peter

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #192 on: February 10, 2021, 12:57:13 pm »
That sounds utterly pants to bounce to GP when GP can't do the thing (altho I'd be just as wary of GPs bullshitting as anything else as I've had off licence stuff). It may be GP isn't happy to, but that's not the same as "can't".

And yes, one of the downsides of Covid has been the suspension or possibly wrecking of many clinical trials.

I dunno why everyone is ignoring the NICE approved CGRPs. When I get hold of my lot again I'm going to push very hard on those.

I hope you get some melotonin and it helps at all soonest.

Re: Optical Symptoms - Migraines
« Reply #193 on: February 14, 2021, 10:53:38 pm »
Melatonin is available over the counter here...is that a prescription drug in the UK?
I've used it as a sleep aid...didn't realize it could potentially help with migraines:
https://www.healthline.com/health/migraine/melatonin-and-migraines#Other-Remedies-to-Treat-Migraines

I might cut the tables in half (5mg) and try. The full dose does leave me groggy in the morning, though.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #194 on: February 15, 2021, 12:32:51 am »
Yeah, they're very cautious about melotonin here in the UK. I know people who buy it online for self-treating various things. Doctors seem very reluctant to prescribe it, although I know some autistic children with dysfunctional sleep who've got psych advice to prescribe and GPs will agree and find it helps.

Re: Optical Symptoms - Migraines
« Reply #195 on: February 15, 2021, 07:02:16 am »
Melatonin was prescribed to my teenage stepson, for ME/CFS.

I think that GP is talking out of their arse.
<i>Marmite slave</i>

Re: Optical Symptoms - Migraines
« Reply #196 on: February 15, 2021, 10:05:27 am »
Melatonin is available over the counter here...is that a prescription drug in the UK?
I've used it as a sleep aid...didn't realize it could potentially help with migraines:
https://www.healthline.com/health/migraine/melatonin-and-migraines#Other-Remedies-to-Treat-Migraines

I might cut the tables in half (5mg) and try. The full dose does leave me groggy in the morning, though.

I've been told to try 2mg a night, if I ever actually get any prescribed.

I've ordered it online from the states before, when the dog started to get dog-dementia which first manifested in getting up at night and becoming anxious. A low dose of melatonin gave her more peaceful nights for quite some time.

But I wanted to show that I was being a good patient and getting it through the proper channels  :demon: To be honest I'm not convinced it will do much but you have to show willing to work your way through everything.

Wowbagger

  • Dez's butler
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Re: Optical Symptoms - Migraines
« Reply #197 on: February 15, 2021, 08:07:19 pm »
My sister was discharged form hospital last Thursday but the suggestion was that she still has the herpes infection. It's possible it has been lying dormant for many years.
Eating's a serious business. Don't bollocks around wagging your tail.

Re: Optical Symptoms - Migraines
« Reply #198 on: March 02, 2021, 10:04:23 am »
I received a large parcel from the hospital pharmacy. It contains six months supply of Melatonin, suggesting this is the length of time they'd like me to go away for.

The instructions also say to take 6mg a night and not 2mg as in the letter. I expect the new dose has come from the decent specialist who actually responded to my email and got onto the hospital pharmacy so I'm inclined to believe it.

It gives you really realistic, crazy dreams. It seems to be dragging memories up from my subconscious; I'm dreaming about people I haven't seen in years.