So scared please tell me your experiences

[theillustratedmummy]

Hi all,
.I suffer migraines on and off. Nor too regularly thank goodness. I normally lose some vision and some processing ability but nothing too serious apart from the pain.

Anyway today I felt one coming on. Unfortunately I was on a mini holiday with my dc. I was due to drive home this eve. I was ok when I set off but part way through the journey I lost the ability to follow directions and recognise where I was going. I obviously pulled over when safe but I could not recognise anything around me even though I had travelled that way before. I rested but had two little dc in the car. I just wanted to get home. Even when I eventually set back off when I felt better and got to local places I couldn't find my way home and drove round for over an hour trying to find my way home. I usually know these areas and I'm normally fine with directions.
I got there but was in tears. My poor dc were terrified. I have never been so scared.

Its definitely not anything more sinister as I have had tests etc its just the severe migraines and they seem to be getting worse.

I'm yet to find any treatment that works without worse side effects. Does anyone have experience of this or suggestions of treatment to try.

Just venting and trying to calm down.

I've no experience of this ( although suffer from headaches a lot)but it sounds absolutely awful! How frightening for you all.
I read you have had tests but I've never heard of someone losing their memory with a migraine and at least, yo that extent. I think I would get checked out again x

That sounds scary OP, Hope you're OK.
Can you tell us what treatments have you tried?

How scary OP. I'm glad you're home and hopefully relaxing now. I suffer with aura migranes. Its very frightening. I lose the ability to find the words I want and that coupled with a vision loss is awful. What meds do you take?. I wonder if its time to tweak them?.

This sounds really scary, and quite extreme for migraines. I get confused with them, and can't read/spell sometimes, but nothing compared with what you experienced. If I were in your shoes I'd definitely want further testing, or even just to speak to a doctor who can explain/put your mind at rest?

God that sounds awful, I know you said about directions, but could Google maps have helped ... you can set it on your phone as like a day nav x

I remember getting in a taxi to go home as I had a migraine. I had no idea the address- I’d lived there 20 years. Thankfully they’re not that bad that often and it does pass.

When you say tests.

What tests?

Only that sounds very much like you could have had a focal seizure or similar and the confusion afterwards was the post ictal stage.

I'd be calling the GP first thing tomorrow.

But you may find they also suggest you declare to dvla - but in all honesty it doesn't sound like you should be driving.

All of this. Please stop driving but good luck to you.

What treatments have you actually tried? There are a LOT.

I've tried almost every pill there is, Botox injections (43 across head, neck and shoulders - not the beauty version) and burned through several triptan varieties.

I'm on anti-CGRP injections which have absolutely changed my life. I've gone from 26+ days a month of attacks to 2/3 days. I haven't had a hemiplegic attack in a year. Unfortunately I still get some vestibular migraines, but I also now have anti-sickness patches and nasal spray triptans which means I can actually get it under control instead of cyclical vomiting for days.

You need to be REALLY careful with the attacks you're having - the GP could recommend you don't drive for a period which would be enforced by DVLA and result in being unable to drive without a Dr's say so. Getting the attacks under control will be a major part of avoiding this.

Confusion with an attack is super-common, so you need to have a plan on what you'll do if this happens again, especially at the wheel of a car with young children in the back.....

I don't have kids, but I keep triptans and sickness patches in the glovebox of the car because I've also been struck down at the wheel of the car and pulled over to take my meds and slept for an hour on a grass verge.

Op are you anywhere near perimenopause? I've had migraine all my life and towards menopause I had exactly this - drove down a very familiar road and forgot where it ended etc. Anyway, HRT has been amazing and I've not had any similar episodes.

I suffer severe migraines, the only medication that worked for me is Topirimate, but I had to fight for 2 years to get my GP to prescribe it, despite a consultant recommendation as it can causes birth defects. However I believe the guidelines have since changed so it should be less of a fight. Worth trying if you've not already.

Thanks all.

I wasn't un safe as I could still drive normally but just felt lost.

Iv tried amitriptaline, setraline? both made me wiped out and migraleave did nothing.

I'm ringing gp first thing.

I'm in my 30s so not sure about peri.

I'm feeling better now thanks.

I can reassure you that you are not alone. My mum is in her 80s and has suffered her whole life. She loses track of who she is, can’t speak, can’t remember her name, often has a blinding headache. Often has to stop driving. Because of her age now, well -meaning people are always telling her to go to the hospital and it must be a TIA or similar. She has been checked many times. It is a migraine. She has always had a bad back and neck and has found that seeing a physio/ chiropractor has frequently brought on an attack, as has neck strain from driving too long or in a bad position. Conversely having a gentle therapy on her neck like acupuncture or Bowen therapy, or just a warm wrap has helped. She just has to make sure she is safe and wait it out when a migraine happens. My mum also has made a card to explain to others what is happening, so they don’t over- react. That said, please get yourself thoroughly checked out, so that you feel assured when it happens again. Best wishes

I don't want to scare you, but that sounds a bit like it could be a seizure. There are many different types. It might be best to not drive until you've seen your GP. TBH, even if it is just a non-typical migraine, a referral to a neurologist might be the best thing. Hope you're feeling better soon.

I suffered migraines in my early 30's.

GP told me you have hormonal changes and that could be the cause.

Maybe something like the mini pill would help or a mirena?

But feeling confused etc and lost really is a serious symptom.

I also suffer aura migraines and they can be really scary. It sounds like you are able to "cope" by knowing when it's coming / stopping etc. For those mentioning other potential causes of the symptoms, it really does sound like migraine to me. They can be very very strange.

My (very good) GP actually told me that, unfortunately, migraine medication all targets the headaches - not the aura. But you can look into triggers (stress, even possibly certain food stuffs) that may make it worse. If you're on hormonal contraception, that can also make it worse sometimes?
Take care and all best!!

Also - don't be too hard on yourself. Sounds to me like you did your absolute best to make the right decision and keep everyone safe. Not the easiest mid migraine!!

I get migraines, usually menstrual ones. I get lost down roads I have driven down for 15 years & I get totally disoriented. I got lost trying to leave a supermarket car park once. My coordination is all over the place, spill & drop everything & head just feels like it will break open & focus is non existent. Also have constant nausea.

My sat nav can usually get me home if I am driving. No cure yet, although magnesium does take the edge off, but curious to see someone found HRT helpful.

I used to get migraines similar to this.

I would lose focus if things and words that were in focus and I could physically see, I couldn't make sense of.

It was a very clear migraine progression for me
-fuzzy line through centre of vision
-feeling nauseous
-inability to focus and words not making sense despite being able to read them
-headache starts
-vomiting begins
-visual/focus issues fix but left with headache and sickness

Luckily I found some of my triggers such as sleep and some foods. Now once the fuzzy line starts, if I take some pain relief I can usually cut it off

Yours obviously sounds more severe and long term in your suffering but just wanted to reassure you that the 'confusion' isn't uncommon with migraines

I have been on prevent meds for years.

the only time I never had any was during my pregnancies

your Meds wouldn’t touch it for me, Botox was useless - eventually after an urgent ct scan I found some meds that do work
I still of alcohol
at the first sign I take beta blockers and a maxi melt and I have to drink full fat coke - nothing else works. But I watch my sleep, hydration, diet and temperature

I meant steer clear of alcohol and try to reduce all stress

I second this. My migraines are nothing like that bad (and I feel for you) but they are much more frequent, longer and worse than they used to be. I’m having a load of other fluffy peri symptoms (nothing diagnostic like flushes) and have just had bloods (which weren’t very conclusive) and am due to have a scan next month. If that’s ok, I’m starting HRT, so I’m so glad it helps. I hope something helps you, too.

A friend has similar. You need to make sure you have location services on your phone on and someone who can access that, plus an alert text to them written and react as soon as you feel odd.

Absolutely identify with this @theillustratedmummy . I also get personality changes before mine which can be a useful way for others to recognise what's going on.
The confusion and inability to recognise and remember things is migraine, it is terrifying.
I know have a triptan injection, anti nausea meds to go under the tongue and a suppository (joy). Getting those administered quickly can stave off the worst and avoid the confusion and memory loss.
Well done for handling it so well.

That must have been terrifying for you. I have had similar experiences with migraines. Give yourself time to really rest now. I am back on amitriptyline as I've had a really bad spell recently. Change in atmospheric pressure and stress are real triggers for me and the only thing that might take the edge off a bit are 3 x 300mg aspirin.