Does anyone else suffer from Aura Migraines?

[Twoweekcruise]

Sorry, this isn’t an AIBU, I’ve put this here for traffic as I am so scared of these auras. I’ll get it moved if needed.
Does anyone else get aura migraines?
I first experienced them 16 years ago age 32, when pregnant for the first time then again 2 years later during my second pregnancy. I had very few after that, during my late 30’s.
I am now 48 and for the last 8 years or so I have been getting more and they seem to becoming more frequent.
My trigger must be hormonal because I get them during my period, usually the 2nd or 3rd day. My mum also got them and my younger sister also occasionally sufferers.
I absolutely HATE them. Even after 16 years they still scare the hell out of me and trigger panic attacks.
They start off like I suddenly can’t see properly, if I look at someone I can only see some of their features or on a clock face numbers will be missing, it then turns to a definite blind spot which then becomes a small curled up zig zag which slowly unfurls until I then have a huge psychedelic zig zag right across my vision. I have no choice then but to sit or lay and cover my eyes for about 20-30 mins until it passes. Sometimes a headache will follow but often there is nothing other than a weird spaced out/washed out feeling which can last a day or two.
I have mentioned it to my GP several times but they don’t seem particularly interested. I have had two this week and have booked to have my eyes tested.
Can anyone relate to this? Do you take any meds for them? Is there anything which can be taken to prevent auras starting? I drive for a job and am in constant fear I will get one whilst driving down the motorway.

I take trip to something at night too to slow the frequency. Keep checking in with gp. The not they see you the not they can do to help and will know what they have done and therefore what they can do

I post this on every thread about migraines but hopefully it might help someone.

The National Migraine Centre are amazing. You can self refer. Appointments are online at the moment so you don't need to be able to get to London. They are a charity and don't receive NHS funding so they ask for a donation of £240 for an in depth consultation and £160 for follow up appointments but the fee is waived if you can't afford it. Most private healthcare policies will cover the cost.

www.nationalmigrainecentre.org.uk/becoming-a-patient/

I used to get common migraines when I was in my 20s but they started to go away as I got older. I had my first occular migraine in my early 40s exactly as you described yours. The first one was very scary. Ater I realised what it was and had had a full check up by my opticians I stopped feeling worried. Now if I get one I just sit down somewhere quiet and enjoy the 'kaleidoscope'. After 15 mins it will go away. Sometimes I get the washed out feeling for a couple of days after. I'm just greatful I don't get common migraines anymore. Dark sunglasses help with prevention as bright light seems to be a trigger.

Exactly what I get, if I take painkillers as soon as they start then my headache is not usually too bad

What you're describing is ocular migraines OP. Migraine with aura is actually a separate condition.

Have you tried beta blockers, tricyclics or aspirin?

More adding a bookmark than offering solutions, I am afraid…

I have them when I am stressed and had plenty during the last trimester of pregnancy.

I often wondered if they were related to high blood pressure as that is common in my family and I had them mostly in the last months of pregnancy when my blood pressure was higher than normal. Now I have them very sporadically, they are annoying because I can’t drive but other than waiting for them to pass I can’t do anything about them.

They are rarely painful and last usually no more than an hour or two. So I just relax and wait until they pass.

… as you, I cannot have oral contraceptives (or any kind of hormone based medications/birth control) as I would live with a migraine day in day out for 2-3 weeks of the month.

I used to get these as a teenager - hormones in part I'm sure but I mostly stopped them by cutting down on cheese & red wine, eating regularly and not going into stuffy places. I also found that I could sometimes stop them by fixing my gaze into the place in my vision where the disturbance was, really making my eye muscles work. No idea what this did! Otherwise just paracetamol as soon as the visual disturbances started.

Yes I get them - I see zig zag lines. The first time I got one, it was in the middle of the night when I woke up. I thought my bedroom was crumbling around me.

I get them, triggered by exercise. For me it can be a blood sugar think because eating tends to see them off. I've started keeping a bag of fruit pastilles in my car just in case

I've been getting them for years, sometimes it's zigzag or flashing lights, sometimes my right side vision is duplicated where my left vision is(if I'm looking at a newspaper I see the right hand page duplucated) which is really weird

I get ocular migraines - it’s like someone has covered half my eye on each side with a bit of ‘tales of the unexpected’ flickering thrown in. I sometimes get a smell in my nose ( it’s the smell of isoflurane anaesthetic gas ).
It usually starts with me unable to read - letters and words are missing.
The first time it happened was when we were on the first lockdown - I calmly did an amsler test and the penny dropped… I wasn’t having a stroke or a detached retina!!!

I just ride it out.. it’s happened a few times since

I know how you feel OP. Mine only started 2 years ago having never had headaches or migraines. I still now don’t get a headache just the aura like you do, but I know for me that bright sunlight normally is the trigger, particularly early morning sun in autumn/winter.

I've been getting aura migraines for about 17+ years now. The aura goes away after about 20 mins and at that point I usually start vomiting. I get about 2 a month , they sometimes skip a month. The only thing I can do is sleep it off usually which isn't possible most of the time . One of my eyes is weaker than the other and my optician mentioned its causing strain on one eye thus causing the migraines. Glasses haven't helped though for me .

Yes get them pretty much exactly as you describe! My mum too

I’ve never quite pinpointed the exact triggers, but I believe it’s mostly blood sugar, dehydration, lack of sleep and stress. Or more exactly like the day after these things. Which is what PP have said. Hormonal too presumably cos I lasted about 2 days on the regular pill and had constant migraines. The Progesterone only pill was fine though.

The aura is really annoying, but I do find that if I take 2 paracetamol and 2 ibruprofen as soon as it starts that the actual migraine pain isn’t bad at all. I read that caffeine helps too so I usually chug a black coffee or a Coke. I do live in fear that I’m driving or giving a presentation or something, but thankfully so far it’s never been too much of an issue for me and I can usually tell when it’s coming on

Occasionally I presumably get the aura at night while I’m asleep and wake up with a migraine. Omg that is an awful headache that is quite debilitating. So I consider the aura an irritating warning. If I don’t get the meds quick enough then the migraine pain is worse, so now I make sure I always have some in my bag to head it off asap.

I definitely feel a bit like I’m hungover for the next day.

I have them.

They aren't as frequent since I had a hysterectomy and use HRT but it took a long time to sort it. Tablet HRT made them worse and my GP just said stop the HRT but I needed it as I was 38 and struggling with the menopause symptoms. I saw a menopause specialist nurse who was so helpful and put me on patches rather than tablets and apart from occasional obesi do ok. The fluctuations I had with a normal cycle meant I was having them every month. To treat the migraine itself I use sumatriptan.

Yes I get pip for them as I can’t work due to it

YANBU. I have these and call them “painless migraines”. I dread having one when I’m driving but at home, I just lie down and wait for it to pass

I also have them. I was put onto propanalol which didn't help much. I have a daith piercing and they have actually lessened- whether it's a placebo I don't know, but I'll take it for now!

I get exactly the same. Sumatriptan works wonders, but can't be taken with SSRIs. With driving, I always think you get some warning before your vision is really impeded, you'd have time to pull over and wait it out.

Had them since early 20s. Two weeks ago I ended up in hospital because it was so bad...that was day 8 and I honestly couldnt take anymore. Tried all sorts of meds. Nothing worked. Saw a lovely dr at hospital who said I need to ask for a referral to a neurologist via my gp ( my gp will never refer me). I found that if I get the vision disturbance I have about 20 mins to take a pain killer otherwise I'm screwed and nothing works. The aftermath is awful too.. it washes me out for days. People who dont get them really dont understand how debilitating they are

Mine have changed as I’ve got older they used to be the same, aura, pins and needles, severe headache. Then gone on a few hours

Now they are aura, severe numbness loss of sensation, aura goes, total mental confusion (can’t speak or think ) aura returns , sometimes paralysis down one side , severe headache and vomiting. After a few hours if it does go it then comes back it’s absolutely debilitating

Just to add in my experience the GPs are usually pretty rubbish about knowing what to do they just flat out refuse to give hormone treatment if there is a risk of stroke or migraine. Seeing a gynaecologist (where I started out post hysterectomy at the women's hospital) is usually a better source of support and information as they have studied the data more in-depth and can adjust for individual cases.

Another case being the gynaecologist prescribing 150 strength patches for HRT when the max recommended was 100 due to breast cancer risk. My GP flatly refused until the consultant explain that being 38 I would generally be having more oestrogen in my system than the 150 patch and my risk of breast cancer was no greater than anyone else of my age.

I don't blame the GPs as they haven't the time or expertise to assimilate the the data of trials etc but I would ask your GP to refer you on to someone with more expertise because they're debilitating and can affect your wider life as pp say.

I get them. Not usually a headache too, but sometimes a minor headache. I do feel weird the rest of the day though and sometimes the following day too.
I also find them frightening as they happen so suddenly and I don’t know what triggers them . I am post meno but on HRT. Possible link to lowering progesterone time of my HRT cycle.

@rooarsome

I also have them. I was put onto propanalol which didn't help much. I have a daith piercing and they have actually lessened- whether it's a placebo I don't know, but I'll take it for now!

Friend has just had this piercing in the hope it will help.