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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

So scared please tell me your experiences

53 replies

theillustratedmummy · 02/08/2022 20:41

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.

OP posts:
Mytortoiseisbetter · 02/08/2022 22:17

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

how do you know you were driving normally?

please don’t drive

IthinkIsawahairbrushbackthere · 02/08/2022 22:18

I was prescribed Tegretol (carbamazepine) for neuralgia and it completely eliminated my migraines. I was on it off and on for about 6 years. As I neared the menopause the migraines tailed off to every other month or so and I was able to cope with rest and OTC tablets.

I have had migraines since I was a child. I would have severe headaches, pins and needles in my head, numbness around my mouth and vomiting. Since going through the menopause they have all but vanished. The last one I had was just over a year ago and I lost my memory. I wound up in A&E. I was there for 6 hours but I honestly thought I had been there for half an hour. It was the strangest experience. I can remember exactly what I wearing and I remember talking to a young mum with a little girl and going to McDonalds on the way home but there is a period of 48 hours or so that I only know about because DH and DD have told me about them.

Yummyhobnobsandtea · 02/08/2022 22:26

I had suffered from hemiplegic migraine like this since my early 20s.
sometimes when my vision has returned I get that I feel very groggy and forgetful. Can’t remember simple words etc and that can be pretty scary. So it could possibly be something similar for you.
I have tried several medications, beta blockers etc and the only thing that has seemed to help the severity is Amitriptyline.
I hope they get easier for you x

Bentley123 · 02/08/2022 22:28

I get them rarely but when I do- I get the fuzzy blurred vision in one eye (first sign), odd/slight confused feeling, sometimes a numb hand/arm or one side of face, then a blinding pounding headache. I wouldn’t be able to drive. Normally always hormonal I think mixed with dehydration/stress. They first came on in my teens (hormones). Had one of my worst on combined pill in 20s (came off) and the most recent ones after my two babies when hormones changed/sleep deprivation. I think rehydration/sugar helps me and a solpadeine (paracetamol and codeine). I don’t know how people cope with having them regularly . Hope you’re ok.

APurpleSquirrel · 02/08/2022 22:34

Have you had an MRI?

OneFrenchEgg · 02/08/2022 22:35

@Eeksteek good luck - I hope it helps. I haven't had a migraine since, which is amazing after all these years. I'm on body identical HRT with progesterone.

Screamingtern · 02/08/2022 22:39

@theillustratedmummy

I really feel for you. My migraines (started at 14) were very severe and debilitating from my early 30’s. Typically the attacks lasted 3 days plus and failed to respond to any available treatments. Day 1 would be the visual aura and nausea, Day 2 a very spaced out feeling and then extreme head pain, Day 3 a massive headache and digestive stasis. Day 4 & 5 I would be hung over and spaced out.

i spent several years being treated at the London Migraine Clinic and saw a number of Consultants. One said to me that if I understood the brain changes that occur during Migraine, I would not risk driving at all. All fine in theory but when you start an attack on the M25, miles from the next service station, what can you do.

In the end the only way I could maintain a career and live a normal life was to really understand my triggers and also recognise my aura, so that I knew an attack was imminent. I did this through assiduous diarying over the space of 18 months. Every single day diarying of what I ate, did, etc. etc.

I discovered that my attacks were definitely hormonal and linked to my menstrual cycle. However they were exacerbated by dappled sunlight particularly strobing when I drove, excess heat, high sugar consumption, alcohol, oranges, stress and altered sleep patterns. A Saturday morning lie in was disastrous.

I also came to recognise that chocolate was not a trigger but chocolate cravings meant an attack was already on the way, as did dizziness, slight shimmering in my vision, feeling spaced out and heightened anxiety.

The only drug that has ever worked for me are Pink Migraleve, taken the second I recognised an aura. They can delay, but not stop an attack. My Consultant tells me he has no idea why they work when nothing else will, but they do.

My attacks diminished at the Menopause although I do still have at least one a month.

Bluesparkled · 02/08/2022 22:40

As lots of PP have said maybe best not to drive til you’ve had advice from your dr. I am sure it is as you suspect, a migraine, but some focal aware seizures can cause jamais vu. It’s an extremely disconcerting experience.

Screamingtern · 02/08/2022 22:40

Sorry pressed send too soon.

I do hope you can get to the bottom of your triggers and find some way to control your attacks

Tellmewhyaintnothinbutaheartbreak · 02/08/2022 22:41

I suffer from focal migraines (migraines with aura) and my vision goes and so does the feeling in my hands and face. I’d liken it to almost like a stroke.

i can imagine you were terrified OP. If you don’t suffer from migraines it can be hard to imagine what they’re really like and how debilitating they are

pliset · 02/08/2022 22:42

If you are not fit to drive you should have stopped.

Tellmewhyaintnothinbutaheartbreak · 02/08/2022 22:45

@Bentley123 i could have written that!

although I wasn’t allowed the combined pill. I was on my way out the door with my first prescription for the pill when the doctor called me back after seeing the migraines on my medical notes and swapped to the mini pill.

i also took terrible attacks after my kids and the worst ones were in my teens. They’re definitely hormonal. I am dreading the menopause. I carry aspirin with me as it seems to stave off the worst of it

pinkstripeycat · 02/08/2022 22:47

My migraine symptoms are the same as yours OP.
I have 3 monthly NHS botox injections as a preventative. It’s injected in to my scalp, back of neck and shoulders) as I have chronic migraine (more than 15 a month).
I also take zolmitriptan 5mg aswell as 2 low dose co-codamol and 2 codeine when I get a migraine.

Hotpinkangel19 · 02/08/2022 22:49

Have you had a CT scan since? I'd be concerned about TIA.

theillustratedmummy · 02/08/2022 22:51

Just to clarify I did stop for a considerable length of time. I did have to get home eventually though as I what dc in the car. One of which is disabled. I was still conducting my driving safely im 100% sure of that because I was consciously making sure I was.

Its pretty hard not to drive as I work for an emergency services and we are v v short staffed but obviously if unsafe i wouldn't and I won't be again if I think a migraine is starting. I drive as part of my job.

Anyway, thanks for all the replies its really Interesting to hear from others and her tips. I'm sorry for all those who suffer its absolutely awful.

I have had an mri and bloods etc

OP posts:
Whatever00 · 02/08/2022 22:54

theillustratedmummy · 02/08/2022 21:45

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.

Have you considered botox?

User000111 · 02/08/2022 22:57

I have a few family members who suffer with confusion when they get a migraine. And also things like struggling to find the right words ect x

WaveyHair · 02/08/2022 22:58

100% believe you when you say you can drive safely, I can to. I just need to sat nav to help me get home from the supermarket, including the car park. It is one of the few times I actually follow it religiously.

Migraines are horrible. Found little that helps except magnesium supplements and several dispersible aspirin (in something fizzy) along with an anti nausea tablet. Migraleve does nothing for me either.

Also found that decent sunglasses help when driving as well...

TokyoTen · 02/08/2022 22:59

Cefaly (see Migraine Trust website) and taking magnesium has massively helped me. Good luck!

BarnacleNora · 02/08/2022 23:03

Hi OP I've noticed that on your list of things you've tried you haven't mentioned triptans and I would really recommend discussing these as something else to throw at your migraines with your GP because honestly introducing those has been life changing for me. If I take one early enough (used to be sumatriptan, now in Rizatriptan, not sure why the GP changed them but the Rizatriptan is dissolvable on tongue so easier to take at least) then it stops the migraine and nearly all associated symptoms in its tracks. I might still feel slightly dazed or tired but nowhere near the levels of confusion and spaced out and I used to get (along with the excruciating pain and vision changes)

I also, after an extremely long wait, finally got to see a consultant who agreed to put me on Topiramate which is a preventative which has also helped enormously with the frequency. I now seem to get a 'run' of migraine onsets for maybe three days every few months or so. Possibly hormonal but as I have an IUD it's difficult to track. I also suspect the weather may play a part. Whatever it is, they're infrequent and can be managed by the triptans. I can't remember the last time I had a day written off by a migraine and never thought I would be able to say that.

Also just to say, I know that it works for some people and that's great, but for a lot of people Migraleve is actually the worst thing to take as it contains codeine. Codeine can very often be a massive trigger to making the migraine worse or producing another type of headache on top of the migraine. I wouldn't go near it for mine. Just another thing to consider when you're working out what might be working and what might be hindering.

Good luck OP, they're absolutely miserable things, I really hope you can get some relief soon

MissAtomicBomb1 · 02/08/2022 23:12

I'm sorry you are suffering OP. Aura migraines are the pits.

No useful advice. I haven't found any medication that works for mine as they are purely aura without any pain. I can pretty much predict the days of the month I will have them as they are completely hormonal. I've made friends and family aware so that they know I'm having an attack and not drunk/having a stroke!

Also, please no more posts telling the Op she shouldn't be driving, she may have had a TIA etc. It's not helpful. The OP had already stated that she's has the relevant investigations and is confident it is aura.
People who suffer from aura migraines will tell you that although the symptoms sometimes seem bizarre and mimic other neurological disorders they are quite 'normal' within the range of aura symptoms.

Thinkingblonde · 02/08/2022 23:46

Best to see your GP op, it must have been scary for you. The first time I had a focal migraine was when driving , I had to pull,over and wait until it passed,
I suffered from migraines for years, started at 14, hormonal.
I didn’t have focal migraines until I was about 28.
Mine were always preceded by me yawning a lot, I’d yawn uncontrollably, yet I wasn’t tired. The headache would alway be on the left side, my scalp hurt, it was as if my hair hurt, lips and face tingled, the left,side of my body felt weak, then followed three days of unrelenting pain and vomiting.
Aged 28 when the focal ones kicked in, a loss of central vision, unable to see a persons face fully or read a line of text, zig zag of flashing lights across my eye, didn’t always get the headache with the focal but felt spaced out and slow, as if moving in slow motion. The odd numbness down my body would still be there during an attack
Beta blockers prescribed for high blood pressure seemed to cure me, within a month or two of being on them the headaches stopped. Been on them since then. I rarely suffer from them now, get the aura, still with yawning and flashing lights, however if I get a headache, it’s mild and no vomiting.

dottypencilcase · 03/08/2022 00:05

Are you on the pill? I recently had to come off mine because of migraines with auras. They are deeply disturbing as can hit at anytime and feel like you've been bashed in the head. Sympathies.

FairyBatman · 03/08/2022 07:34

You really need to push your GP to send you for a referral to a. Neurologist or headache clinic, there were loads of treatments that you can try, but you need a specialist really.

GetOffTheRoof · 03/08/2022 09:10

theillustratedmummy · 02/08/2022 21:45

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.

No, you were not safely driving. Not even a little bit safe. Objectively, you know this. Especially if you're in one of the emergency services. Someone who is confused and unable to find their way home should NOT be at the wheel of a car.

Sertraline isn't a migraine treatment. I couldnt get on with amitryptiline either - too sedating.

There are literally dozens of treatments available to you still. You need go back to your GP URGENTLY and ask for a new treatment.

Also, migraleve is a waste of time and money - you need a triptan.

Here's the NICE guidelines on what they should be talking you through: cks.nice.org.uk/topics/migraine/management/adults/#:~:text=NICE%20guidance%20on%20the%20acute,one%20drug%20%5BNICE%2C%202012%20(