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Misunderstood Neurological Condition - Carers UK Forum

Misunderstood Neurological Condition

For issues related to specific conditions and disabilities.
I havent really posted on here what my husband is suffering from and there is a very good reason.
The min I tell people (other than family and friends) I can see the eyes rolling and its generally followed by....oh yes I have those and blah blah blah.

Hubby has a very rare and dibilitting form of Migraine called Basilar Artery Migraine, not only is it rare but he has an acute form.

He sufferes about 4 days out of every week and some attacks like the one at present can last for weeks at a time ( 4 weeks was the longest)

His typical 'bad' days consist of being unable to lift his head out of bed, go to the toilet, speak or understand whats happening around him. He has complex hallucinations and significant memory loss. He will sleep for 24 hours straight and I wake him for meds, food and toileting. If I dont wake him, it wont happen! He will also fall out of bed as he will in his coonfused state try to get up.
If an attack happens it can be without warning, he has been trying to work but the last attack happened at work and he went missing, was found by work collegues wandering at the back of the building with no comprehension of what he was doing or where he was, he collapsed shortly after and was rushed to hospital where they kept him for a week. He is now terrified of leaving the house alone in case this happens again.

On an average day he is slow to comprehend whats happening around him, his cognitive processing is slowed down, co-ordination poor and he cannot tolerate noise, groups of people talking or too much light. If he goes out for a walk he sleeps for about an hour afterwards and this can sometimes trigger an attack.

On a rare good day he appears completely normal!

He is under a consultant at the Walton Centre for Neurology who says that basically they have no real understanding of the condition, why it happens, how long he will suffer. They dont understand why the 5 medications he is on daily are not removing or at least mitigating it. They basically record and monitor.
He has had CT scans, MRI scans, Lumbar punctures, blood tests, neuro psycology tests. They even brought in a guy from Denmark to check him out and still no plan for the future.

To put this into contect prior to this my husband has never had a day off sick, cycled 8 miles a day and ate well, doesnt smoke or drink. He was disgustingly healthy and 36 years old when it first happened.
He worked flexible hours and did all the school runs with our three girls, did the cooking and the cleaning and the washing.
Our little family used to go camping, hiking, listening to rock music and playing games together.

Its such a massive change for us all.

I hate the way his condition is so misunderstood and the second I say migraine people assume its just a bad headache with nausea or you can sleep it off in a couple of hours. The classification of Migraine is much wider than that.
My spelling is awful this morning!!
Hi Beanie,
it sounds a horrible condition, as you'll see in the topic's below on this forum, we also attend The Walton Centre. I have posted a newspaper article (link). My wife has severe epilepsy and she had Deep Brain Stimulation (DBS). I hope one day your husband will get some answers, look out for Brain Hospital - Saving Lives Thursday 6th Feb channel 5 @ 10pm as it all about The Walton Centre, we're in the 2nd episode.
Oh I will have a look for that one Image
Hi beanie - I get regular migraine and have actually had a couple of Basilar Artery attacks. It was really horrible and I ended up in A&E because they thought I had had a bleed in the brain Image
Fortunately I dont get them often - it must be dreadful to have so many, so severe, migraines.
Crocus that what they thought the hubby had too, they were so convinced he had a hemmorage they did the lumbar puncture and before the results was talking about the action plan, then it came back clear.

Think they are completely perplexed with the severity, even they can't quite understand how it can be so severe for so long.
Hi Beanie,
Sounds truly debilatating and difficult to deal with, especially since Hubs used to be so fit and well.
We too get frustrated by the misunderstanding from some people, Hubs has multiple physical probs, but also Epilepsy and Depression - it's amazing how many people don't understand how these conditions affect everyday life.

Thanks for sharing, take care and best wishes xx
Hi Beanie,
Your husband's condition sounds enormously challenging for both him and everyone else in the family. People seem to be able to understand the problems caused by a physical problem so much easier than one with the central nervous system, which affects everything, not just a limb.
Beanie I'm sorry to read this, coping with disability/health problems is so difficult but other people's reactions can make it even harder! Someone saying "yeah, I get that" when they quite obviously get nothing like it is tough to deal with. I do hope they are able to find some way of managing the condition for him soon, it must be terrible to live with and I hope some of the 'migraine' sufferers you speak to read up on it a bit so that they can understand that what he's experiencing is very different to the thing that most of us experience. xx
HI Beanie

Sorry im coming so late to this thread but felt i had to responsd to you

How is your husband now?

Im also a chronic migrainer, my caree is my partner who has a sleep disorder but i myself have an acute form of hemiplegic migraine (looks like stroke or meningitis)