Hi everyone, I've been diagnosed with atypical migraine aura without headache. I have palinopsia, see lights & coloured blobs, snow, glittering & shimmering lines, and less frequently distortion of objects, objects moving etc I never have the more typical migraine scotoma and my visual symptoms just appear, often as a reaction to some kind of trigger, they don't build up or fade away, its on or its off, mainly its on.
I'm being investigated for epilepsy as these visual things are irregular, but I've also had some episodes of blacking out & falling to the floor, epigastric rising, intense confusion, de ja vu and now jerking of my muscles.
Does anyone else get this jerking or twitching? Its like a spasm but always painless, I'll either jerk my arms out or my leg out, sometimes the entire top half of my body will jerk back and forth. Other times my muscle will just spasm for a few seconds, in clusters.
I realise now how complicated migraines are, so I was wondering if any other migraine sufferers get this?
Thanks all!
K x
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kittyIM
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Have you been tested for B12 - medics often assume that B12 can't be involved unless you are anaemic but a lot of what you describe - the jerks etc fits in with B12 deficiency.
The jerks sound a bit like restless legs syndrome.
Unfortunately, if you think B12 might be a factor after reading the list you may have a fight on your hands to get listened too. Amongst other things there isn't a really good test for B12 deficiency and the 'normal' range includes a very large grey range where people are told results are 'normal' but significant numbers of people do actually exhibit and have clinical symptoms.
Supplementing before testing should be avoided as it makes interpreting results more or less impossible.
Unfortunately the symptoms of B12 deficiency also overlap with a number of other conditions ... and to make things worse having one problem doesn't rule out another ... in fact there tends to be a strong correlation that means if you have one then you are more likely to have 2 etc.
Hi there, sounds awful, I have basilar Migraine, and I do get visual disturbances such as flashing or snow, sometimes tunnel vision. I also have stiffness and bad aching in all of my muscles and am so clumsy but also sickness and dizziness. I think you do sound more like the epilepsy spectrum, but it varys so much who knows regards Clumsclot
Hi Clumsyclot, thanks for your help. I've been told there can be cross over between the two conditions.
I dont have a name for the kind of migraine I have, which I want to find out as it makes understanding the condition much easier. I will look into basilar migraine, thank you! Hope you are feeling better!
I get the same ive just been put on new pain killer they are called palexia and starting them tomorrow as I was on tramadol andhad to be lowered over a nember of weeks I shall let you know how I get on in a couple of weeks to see if there is any problems I saw specialist as I was having blackouts and he said could beto do with my magrains
One of my children had this, it turns out like me they had Hughes Syndrome/APS, which is sticky blood, the addition of Aspirin for some people or anticoagulation often removed this plus the migraines, as this illness does not normally respond to painkillers. The blood tests are here, if you want to rule the condition out. hughes-syndrome.org/about-h...
Hi MaryF, thanks for the info. I was put on asprin to treat these symptoms for a few months but got no improvement. A rheumy I was seeing didn't once mention hughes to me, but I also have endometriosis and I think there might be a link between that and hughes?
I will speak to my neuro tomorrow and see if she could investigate Hughes. I've asked other consultants in the past but its been ignored.
Some people have an improvement with Aspirin, others do not they either need a stronger version or anticoaguation. Insist on the tests, and do them at hospital so the samples do not hang around for collection, I run the patient forum for Hughes Syndrome Foundation, please come back to me if the results show anything, as we have a list of recommended specialists in the UK. MaryF
Hi KittyIM, I have spasms and twitching on the right side of my face. My doctor said it was due to a lack of sleep. I don't always have a migraine with the spasms but I do have an aura.
I have suffered with Migraine for 25+yrs now and had one with spasms last night on the way to my flight back from holidays
Mine are manageable but ever changing in terms of the symptoms I have. 3 of the worst ones have been thunderclap migraines which just shut me down and I collapse. Rarely do I get pain in my head with them but a thunderclap will always be accompanied by the unbearable head pain and I end up in A+E on morphine once my husband has managed to convince them that it is the only pain relief/relaxant to stop it.
I am glad to find this site and share experiences, so ask away if anybody wants to know more of this type of migraine...
Please keep asking this question because I have had this problem for 4 years. I am eagerly reading the responses. 😅
For me, the migraines are just recently becoming regular and acute. For years, muscle weakness, spasms, jerking and collapsing have all been happening with an intense headache or abdominal spasm. I don’t have major illness, such as MS, cancer, etc., but I do have minor issues, such as microscopic colitis, hives, neuropathy, etc.
I am heading to the Mayo Clinic because my local Seattle team, which is amazing, cannot connect the myriad of dots that are my symptoms.
Hi kitty. I have also been diagnosed with atypical migraine with aura usually without headache and just today my big toe was stiff as a board for most of the day and sore to walk on. Then it just went back to normal! Migraines are so much more complicated than I ever imagined.
Yes! I have Hemiplegic migraines and I do exactly what you described. It is truly uncomfortable and they tend to be back to back. They leave me with the usual unilateral weakness/paralysis but these added symptoms leave me really more drained. I am also sore and my usual aura confusion is increased
Hi, kittylM. I know this post is old, but it was just what I was looking for...confirmation that what is happening with me happens to others with the same condition. I have migraines since I was 17 yrs old (am now 66), but only in the last four years have they turned into hemiplegic migraines. I have so many other ailments that I wasnt sure what to attribute the jerking spasms to. Mine get so bad I feel like a live "I Love Lucy" episode, and then added to that is the speech problem. For me, it's a matter of extreme stuttering and mental confusion. I get so frustrated looking up information about diseases from medical sources. I understand their significance, but there is a wealth of information in the people who have the disease. So thank you for asking your question and telling your symptoms. I'm new at this disease so I don't have any help to offer, just a prayer that relief finds you.
I have a history of migraines, neuropathic pain, and muscle spasms.
When I have a migraine come on, I have unusual symptoms. I begin getting muscle spasms in my upper back, shoulders, and occipitals. This is very odd , but I get gas and begin to belch. Sometimes, I have drop attacks, syncope, and will have gross motor involuntary jerking lasting for only a short period of time. I had an EEG that showed some unusual brain activity. Does this sound like your usual migraine? I think not.
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