Author Topic: Optical Symptoms - Migraines  (Read 18130 times)

Re: Optical Symptoms - Migraines
« Reply #150 on: November 08, 2019, 08:45:28 am »
Similar to the Atkins diet? Didn't dr Atkins die obese and with a heart attack? Doesn't keto diet fly in the face of decades of medical nutritional advice? Do the boffins now advise this diet for some people now?

I've got a few things I live with that diet change could help.  IBS (AKA the gp hasn't a clue and wants to move on to the next patient) and migraines. Really I need help but things being as they are I'm not going to get any so the keto might be interesting to me.

Up front I don't like diets. Eat healthily and exercise, do that and I always believe you shouldn't need a diet. Plus the low carb diets scream quackery to me. Wherever I've missed out carbs I have no energy.

At the weekends sheer laziness often means breakfast is 3 or 4 scrambled eggs. I find without at least 2 slices of buttered toast as well I'm shaking with low energy before lunch. I struggle to see how you can get enough energy from fat if you're active.

Re: Optical Symptoms - Migraines
« Reply #151 on: November 08, 2019, 08:46:34 am »
Super early days, but I started on a keto diet last Sunday...I had migraine Monday and since then, nada.  Had a couple of warning signs, but ignored them and they turned out to be nothing.
While weightloss was the primary reason, I was also keen to try it because there's some suggestion that it can help with chronic migraines and so far so good?.
I'm just reading a New Scientist article about keto helping with migraines (24 aug, prior to recycling).
74% of people had less than half the normal number of migraine affected days while on a keto diet, it says.
About double the best alternative drugs, though short term so far.

Is that what prompted your choice?
If my migraines had been reduced to just a half, I would still be non-functional. Walking with a stick, not able to drive. Frequency was 5-10 times a day with multiple side effects.

The 'best drug', once we'd found the one (and dosage) that worked, reduced the incidence to a few times a month, and reduced the 'power' of the migraine.

Migraine is a term covering multiple neurological conditions and articles like that in the New Scientist draw no distinction between the types of condition. Doesn't help people really.
<i>Marmite slave</i>

Re: Optical Symptoms - Migraines
« Reply #152 on: November 08, 2019, 04:05:56 pm »
Didn't dr Atkins die obese and with a heart attack?
Tripped over a paving slab and bashed his head, iirc
No walking helmet worn  ;).

Re: Optical Symptoms - Migraines
« Reply #153 on: November 08, 2019, 11:33:05 pm »
Yes he died after falling but there was mistakenly leaked medical records that said he had heart problems and arterial issues.  The records had a weight that puts him in three clinically obese status. The Atkins lobby defend him with as much vigour as those opposing him. His good name is worth $100 million apparently so good reason to defend that. However when the most vigorous opponents come from vegetarian lobby. Not exactly trustworthy neither imho.

Anyway, all irrelevant to me. I think I've not got the temperament to do a diet. I eat what I need to eat and nothing more. It's why I've always been within ideal BMI limits and with a waistline that is 32 to 34" . For someone my size that's good.  I've got energy for what I need energy for.

IBS is just a tag for digestive tract issues that have no obvious cause. In my case I've never found out what causes it other than pork (bacon,  sausages and salamis are ok). Every time I think I've worked out something else i then go through a period when it stops affecting me. FODMAP  is something I might get around to doing. I'd prefer to do it through medical guidance. One gp gave me the recommendation to try increasing fibre intake then if that didn't work she'd consider sending me to a nutritionist.  It didn't work and made me a lot worse. Or something made it worse that coincided with taking soluble fibre products.

Right now it's better. I only have a bloating every other week. Most nights after dinner I'm windy. A whole evening of it. It's not bloating me though so no discomfort other than knowing you're as polluting as a cow on a diet of baked beans! I'm no longer embarrassed by it when among family though.

Sorry for the crudeness.

As to low carb diets,  whether they work for you or not they're a commitment. You have to do it right to get such things to work. Does anyone actually do it strictly all the time? It's probably a very restrictive diet.

Re: Optical Symptoms - Migraines
« Reply #154 on: November 08, 2019, 11:40:28 pm »
Isn't this better served in the 2 other keto threads?

Salvatore

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Re: Optical Symptoms - Migraines
« Reply #155 on: February 14, 2020, 06:29:30 am »
And I'm currently experiencing migraine aura, probably the first time in more than a decade. A bit like this
[image snipped]

It feels wrong to refer to it as migraine, because I don't get any headache or nausea, and it doesn't last more than 30 minutes or so. For me it's just a minor inconvenience, compared to what others suffer. But migraine is what the neurologist called it, and who am I to argue?

And in the time it's taken to compose this post, it's almost gone.

And I'm currently experiencing the first since that one. So just over a year ago.
And again today, this time for the first time ever with a headache.
And today. Nothing for a year and now 3 in 4 days. The novelty is beginning to wear off.

Just had another one, from 5:30 till 6:00. About half way through it was like the coast of southern Norway, with flashing fjords.  I came to this thread to see when my last one was, and there was one a year ago to the day. A year ago it was followed by a couple more, so we'll see what happens.
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et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

Re: Optical Symptoms - Migraines
« Reply #156 on: February 14, 2020, 06:45:51 am »
That’s pretty weird. And interesting. Are you deducing anything?
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Salvatore

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Re: Optical Symptoms - Migraines
« Reply #157 on: February 14, 2020, 09:02:30 am »
Same time of year for the last 3 years, but in my youth I had them at other times of the year - I remember one after playing football when the ground was baked hard, so it couldn't have been winter, and also when on a remote beach in Scotland, probably in August. So at the moment I'd guess it's probably coincidence, but we'll see what happens in a year's time. 
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et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

Salvatore

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Re: Optical Symptoms - Migraines
« Reply #158 on: February 14, 2020, 09:58:33 am »
And now another one.

Is a Valentine's Day Migraine a thing?
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et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

Salvatore

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Re: Optical Symptoms - Migraines
« Reply #159 on: February 15, 2020, 12:49:52 pm »
And now another one.

Is a Valentine's Day Migraine a thing?

And another this morning.
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et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

Genosse Brymbo

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Re: Optical Symptoms - Migraines
« Reply #160 on: February 15, 2020, 03:25:46 pm »
And now another one.

Is a Valentine's Day Migraine a thing?

And another this morning.
If so, then it's the Valentine's gift which just keeps on giving.  Sorry to hear you're suffering, John.
The present is a foreign country: they do things differently here.

barakta

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Re: Optical Symptoms - Migraines
« Reply #161 on: February 15, 2020, 05:38:38 pm »
Changed any lighting in your house or place of work or places you hang out lately?  Under any unusual stress? Change of diet?

I find migraine is very unpredictable and indeed my PragmaticTM migraine nurse says there is limited rhyme or reason for them and they treat it like a black box with "some things cause migraines in some people some of the time sometimes" (drives me nuts, I want to science this stuff).

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Re: Optical Symptoms - Migraines
« Reply #162 on: February 16, 2020, 02:42:35 pm »
Changed any lighting in your house or place of work or places you hang out lately?  Under any unusual stress? Change of diet?

I find migraine is very unpredictable and indeed my PragmaticTM migraine nurse says there is limited rhyme or reason for them and they treat it like a black box with "some things cause migraines in some people some of the time sometimes" (drives me nuts, I want to science this stuff).

Nothing unusual at all. They just happen.

Quote from: Genosse Brymbo link=topic=43629.msg2466463#msg2466463
Sorry to hear you're suffering, John.
Genosse Dave!

I should stress that 'suffering' is overstating it. What I experience is nothing more than a mild annoyance and only lasts 30 mins or so - on a scale of 1 to 10 a solid 1. I never imagined it was anything to do with migraine, but that's what a neurologist said it was, and who am I to argue. As mrcharly wrote:
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Migraine is a term covering multiple neurological conditions

BTW one more yesterday and three so far today (a record).
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et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

Salvatore

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Re: Optical Symptoms - Migraines
« Reply #163 on: February 26, 2020, 04:25:08 pm »
BTW one more yesterday and three so far today (a record).

Nothing for nearly 2 weeks now, so I expect I'll be fine until Valentine's Day 2021.
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et avec John, excellent lecteur de road-book, on s'en est sortis sans erreur

barakta

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Re: Optical Symptoms - Migraines
« Reply #164 on: August 10, 2020, 02:56:22 pm »
I've been having 1-2 migraines a week since lockdown and trying to hear/view video stuff even with professional captioning and or BSL triggers them horribly. I also can't do my job and narrowly avoided losing it entirely (and I'm losing hours and pay).

My Feb clinic appt got bounced to August. NICE has approved a CGRP treatment (Ajovy fremanezumab-vfrm). I emailed my nurse to find out if there was progress or if I should postpone this appt (save me risking travelling etc). I get an out of office dated late March saying she's off sick following surgery with no known return date.

I then get an actual reply from the nurse who is an excellent human and unlike the hospital in general is good at replying to email. She's having chemo, the entire advanced migraine care seems to have stopped in her absence and she doesn't know when she's returning. No decision has been made on hospital giving Ajovy and even if they did agree to use it, it would involve applying to the Trust and CCG for each patient for approval.

I've been under this clinic for 3 years, at my 1st appointment I was told "CGRPs are coming soon, we think they're what you need". Even at best case we're talking 6-9 months for a new appointment and then however long applying to an NHS Trust and CCG for funding takes... So call it at least 12 months.

I am seriously considering DPAing my notes out of this useless Trust and asking my GP to refer me to another Migraine clinic (I already ask GP never to refer me into this Trust again cos they suck - I've got an outstanding ombudsman complaint with them too). In fact I'm going to email the GP now and ask their view cos I'm sick of my brain imploding and nothing being done.

hellymedic

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Re: Optical Symptoms - Migraines
« Reply #165 on: August 10, 2020, 04:18:29 pm »
Oh barakta, this really sucks!
I feel really sorry for sick nurse, who must feel guilty for being sick, which is beyond her control.

I really hope you can get somebody to manage you with sense, sympathy and not too much dogma.

I'm amazed you can look at BSL at all; waving arms give me the heebie-jeebies! (I appreciate how privileged I am as a hearie...)

barakta

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Re: Optical Symptoms - Migraines
« Reply #166 on: August 10, 2020, 05:30:47 pm »
I feel sorry for sick nurse too, she shouldn't really be answering emails but she always did answer at weird hours which is a sign of bad workaholic habits and stress of running an entire clinic by herself. I know they managed to get more nurses, but this one does all the coordination, research links and wrangling the funding. I am so cross with the hospital for letting this happen - but suspect if I complained it would land on the wrong person which I do not want. Also this is the shit hospital I have a live case with the PHSO about cos they are terrible at accessibility AND their complaints system and humans are shoddy and shit.

Sadly there doesn't seem to be any other NHS migraine services and the treatment I'm after is super expensive and difficult to get. I suspect GP is going to say "sorry, but nothing else out there".

Lovely nurse is getting admin to postpone my appointment to 2021 and we'll see 'if' she comes back :(.

The trick with BSL is to look at the face, the hands are secondary but yes, even for people with better vision than mine, following BSL all day is tiring and that's well discussed in deaf circles. I quite like BSL for realtime speech and love it for poetry and music cos it's more synchronous than captions but obviously I have to stay focused constantly and I do struggle. Captions can be more lagged and these days I get visual stress from the lines of text so even large fonts can be hard to read.

Re: Optical Symptoms - Migraines
« Reply #167 on: August 11, 2020, 12:13:58 pm »
Sounds not dissimilar to my experience at KCH. Once I emailed the research fellow who'd been treating me only to discover a couple of months later that he'd left and not put an out of office on or forwarded his emails, so my emails had been disappearing into the ether. I wait a very long time for appointments. I'm having more success with the latest research fellow who eventually answers emails and has taken pity on me and has been giving me greater occipital nerve blocks every few months, or at least he was before COVID hit. I was on flunarizine for a while but had to come off it as it was giving me symptoms of anxiety and depression (and it took weeks for that to lift even after stopping it).

I'm under the care of Prof Peter Goadsby's team; he led the team that developed one of the injectables and gave the formula to pharma companies for free to develop. So I've never bothered trying to go elsewhere as I reckon all NHS teams will be similarly pressured and he seems to know what he's talking about.

They've never seemed keen on giving me any of the newest injectable treatments. I came very close last year but then the month I was due to get it I had a spectacularly good month where I only had four migraines, and when they heard that they pulled back. I struggled to hold back the tears when that happened. They seem keen to follow NICE guidelines of them being for chronic sufferers only, and as my worst month was 13 migraine days, I'm 2 days short, officially. I know they see people from all over the country so I probably seem ok in comparison to some of the very worst cases.

Currently hovering around 6-8 migraines a month, definitely linked to my cycle. Fewer than normal probably because I don't have to sit in a noisy office with flouro lighting while COVID wfh is happening. Prof Goadsby has me taking naproxen preemptively for around a week a month to help avoid menstrual migraines, but when your cycle isn't exactly regular this is easier said than done.

barakta

  • Bastard lovechild of Yomiko Readman and Johnny 5
Re: Optical Symptoms - Migraines
« Reply #168 on: August 12, 2020, 01:39:54 pm »
I've only ever seen the specialist nurse, there is apparently a neurologist involved but... I was referred directly by neuro-ophthalmology who are the only ones not scared of my weird eyes (rare eye movement disorder).  I'm a bit sceptical about it all to be honest cos it does seem to be completely "stab around in the dark" mentality.

I have almost constant migrainous sumptoms so I hit chronic and I am lucky they're not acute with pain etc, but they're hard to manage cos I have zero tolerance to bad lighting (most offices), the photophobia is a pain and I've lost jobs over it. I'd like to talk to a neuro about why they think my brain did this cos *shrug* isn't a good enough answer for me.

I'll talk to pain management and see if they can nerve block the shoulders on the grounds I think that's one migraine trigger they could nuke for me along with everything else and I'd do better off the celecoxib meds in general (they could be worsening my migraine) as they're bad for kidneys/heart etc.

There's a lot of scams out there with migraines in the private sector, cos people are so desperate. It seems to be a really poorly understood area of medicine.