Frightening day yesterday .

[Pollypuss]

I don’t know how many of you have had this experience. I could not articulate my words for nearly ten minutes . Well I thought I must be having a stroke or a brain tumour or going crazy. Rang 111 who rang my local surgery and got through quickly . Well it turned out it was a migraine . The doctor also has migraines and had the same symptoms. I must say the NHS was tops . I had forgotten 11 years ago I had similar symptoms and was looked at by a neurologist in the end. I don’t get migraine that often but those symptoms are terrifying . Pretty washed out today .

[PadThaiNoodles]

My daughter sometimes gets aphasia from migraines. More rarely she gets total loss of vision or absence seizures. Any of the above leave her wrecked for a day or two.

Her neurologist has tried everything in the book, mostly without success. She gets some relief from Botox and Rimegepant. She's just started her 3rd CGRP therapy trial (Aimovig and Ajovy having had little effect). This one has to be done by IV, but at least it's every 3 months instead of injections every month. 🤞

[Pollypuss in reply to PadThaiNoodles]

Oh gosh that sounds horrible . Poor girl I am so sorry . That’s really the extreme . I have aura migraines but this one was really frightening . Especially as I’ve had a bypass - thought it must be a stroke. My mother used to have them when it snowed as it did yesterday .

[AuntyEdna in reply to PadThaiNoodles]

Hi Padthainoodles

Hi have the same migraine symptom's, as your daughter , the one thing that worked well for me was Greater Occipital Nerve blocks

Didn’t total stop them completely but symptoms were diminished for 2 out of 3 months inbetween the jabs.

I wish her well

[PadThaiNoodles in reply to AuntyEdna]

Interesting; they haven't suggested that one yet. (It also sounds a bit similar to the Botox, which is one of the few things that works for her, so definitely might be worth looking in to.) Thanks!

[AuntyEdna in reply to PadThaiNoodles]

I had a course of Botox it didn’t help me but it does help my daughter, I think it depends on the type of migraine and cause of pain. The GON blocks switch off the greater occipital nerve signals from the base of the neck going up into the top of your skull whereas the Botox injections act on the muscles in your face shoulders and neck areas .

Its a tricky subject much underestimated for pain and debilitation.

I wish her well with her journey to get some respite , take care ☺️

[meadfoot]

Goodness, so pleased you got a resolution quickly. Scary time for you. Rest up until you feel fully back to strength, theres no rush. Best wishes.

[Hidden]

Hi, I fully understand how frightening that would have been. I had similar about 3 years ago, and have a history of earlier more mild, occasional migraine with dysphasia, as well as aortic valve replacement surgery (twice) + taking higher dose warfarin. During my severe migraine I experienced aphasia, vomiting, vertigo and feeling I truly was going to die. I think for some time I was semi-conscious. I thought I was having a massive intracerebral bleed...

It was during the height of Covid times so I wasn't 'allowed' to have my husband with me. There was almost zero communication with him while I was unable to speak or think clearly. Unfortunately I shared a hospital room with people with brain injuries and dementia, including incontinence and one had a habit of I was given days of IV antibiotics because of the possibility of encephalitis and multiple scans & pathology. A recent graduate attempted 8 (eight) goes at lumbar puncture (on the ward, with me feeling exposed, cold, in pain and scared of infection), before it was finally done successfully under CT guidance... after the weekend! It was the most traumatic experience of my life.

'Fortunately' one of my scans was done while I was still sympomatic and a very experienced neurologist recognised some changes only explainable by migraine.

Initially I was started on topiramate - after reviewing all my other medications. Unfortunately I did have some side effects... then went on to Ajovy injections, which seemed successful (no side effects and no migraine). Then Australia couldn't get supplies of Ajovy so I was switched to Emgality. This has also prevented migraine with no side effects.

Your experience, like mine, was probably somewhat life-changing. I hope you get preventive treatment that works for you. Regular injections is nothing compared with being terrified for your life. All the best in your journey from here. I'm doing terrifically well now!

Sorry about taking over with my own story. It's one I haven't told often - after all, we remained in isolation due to Covid. Best wishes!

[Pollypuss in reply to Hidden]

Thank you

[Murderfan58]

I have a rare hereditary neurological condition. Which didn't get really bad until I was 29 now 66. I have had 4 seizures but not until 2019 one a month until I saw my neurologist and he put me on a tablet to stop the limb jerks I had for 32 years within 2 weeks no limb jerks or seizures.

When I had the seizures they took my speech the first time I didn't realise I wasn't saying anything . In my mind I was talking it only seeing my daughter crying and she said mom you are saying anything. It was frightening but after a few hours my speech came back happened with each seizure which lasted 8-10 hours.

Before that and still happens now . I can't get the words out or they are jumbled up. In my mind I know what I want to say but what comes out can be something completely different. Plus I can repeat myself in a sentence and not realise I have already said it .

There was a sketch with Ronnie Barker the ministry of mispronouncation. Or in his words he got his worms muddled up. That's me everyday .

It happens when typing I know what I want to write and think that's what is down but when I read it back it's wrong hence it takes me ages to write a simple post .

But that's me people have to take me as I am even with my muddled worms . No one is perfect and I for one am glad about that . We are unique.

[Silvertail]

I used to get migraines with aura, but just once I had one where when I spoke it was rubbish. Certainly a frightening experience. (I didn't seek medical help because I thought it was migraine.)

[Silvermedal]

If this is something you have only had twice, I don't think you need any drastic treatment. Things that may help prevent future attacks are: Keep hydrated, eat regular meals and have a regular sleep routine. I hope you don't get any more attacks.

Note to others: if you get this symptom, it could be a stroke so you should always phone 111 (or get someone else to phone for you.)

[Pollypuss]

Thank you to everyone who replied and the fact you shared your problems. I remember a neighbour who actually went blind during his migraine. Migraines are very obviously not just headaches but some of the symptoms are so diverse and in many cases so much like a stroke that they can be terrifying .i inherited my migraines from my mother which seems common. I’m so sorry you all had to go through this experience

[Tangle234]

I had an aura migraine one day and the next morning felt odd, later losing the power of speech and balance. I couldn’t understand what my husband was saying, sounded like a foreign language.. he took me to hospital where they gave me a CT scan for suspected stroke. They then told me that I was not having a stroke just a severe migraine but found during the scan that I had already had a full silent stroke at some time previously. Because of the stroke I cannot have the migraine medication my doctor wishes to prescribe and I continue to have classic, optiacland aura migraines. Fortunately I have not had another where I couldn’t speak or at times understand. It was one of the most frightening experiences I have had. Difficult to explain to someone who hasn’t suffered, you have my sympathy..

[Pollypuss in reply to Tangle234]

Oh that sounds horrible. I really feel for you.i didn’t have a scan but was given the medication for future migraines so don’t know where that puts me . Hope you never have another scare like that