Hello, I have suffered from Migraines with aura for 11 years now. I mainly get the visual disturbances. But two weeks ago after my usual funny eyes my left side went very weak. I ended up in a&e where I was diagnosed with a hemiplegic.
I’ve been resting up at home since then. My question is how long can loss of sensation last? My left hand - although much improved still has some loss of feeling in the palm area. Im scared there can be permanent damage? Im also petrified of this happening again. How do people deal with the worry?
Thanks in advance! ☺️
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Coco1381
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I have had a number of hemiplegic episodes , they mainly happened during periods of cluster headaches for me .I suffer from various types of migraine with and without aura and Hemicrania Continua . I regularly suffer with numbness , tremors and slurred speech.
For me , the Hemiplegic episodes were also more common before I was diagnosed with Vitamin B12 deficiency Anaemia last year. Since starting my injections of B 12 I've only had one episode and it took about a week to get full sensation back in my right hand and cheek.
It can take anything from a few weeks to a few months to get back to normal with no lasting damage.
Have they given you any blood tests to rule out causes like vitamin or mineral deficiencies , kidney function and electrolytes and double checked your neurological symptoms with an EEG or any nerve conductivity tests. You can ask about these tests just to give yourself peace of mind .
Have they given you any prophylactic treatment for the hemiplegic episodes?
Have they suggested any physio to help?
Like all migraines stress or anxiety can bring on an attack or make your recovery slower so try not to worry .
Try some isometric finger and hand exercises, you can find videos of these on YouTube, and touch therapy which is basically just stroking your hands , fingers and wrists to stimulate the nerve responses .
Breathing exercises with eyes closed in a comfy chair also help improve nerve function in the whole body as well as reducing migraine pain and attacks. A couple of minutes 3/4 times a day can be really beneficial.
If things don't improve or you are still worried it would be worth seeing the GP and asking to be referred to a Neurologist. Or , if you are still under a Neurologists care , contact their Secretary via email and tell them about the situation and ask for a phone or face to face appointment to discuss it ( you can get the email from an old letter or contact the Department for it) .
Take care and stay positive , yes it may happen again but it might not and you did exactly the right thing by getting checked out to A and E when it happened so you know to do this again to rule out other issues and get some support. You coped once so you know you are strong enough to cope again , you will be ok, Bee
thank you so much for all this information! I hadn’t thought about the B12 deficiency. I take magnesium but will add a b12 supplement I think. They did take my bloods - apart from low iron (I’m chronically anaemic) they were good.
I need to stop stressing! I’m stressing about stressing 😆
So much advice here - I’m taking it all onboard - very thankful xx
Chronic anaemia that isn't fixed with iron supplements is often caused by very low or deficient B 12 or Folates because you need enough active versions of those nutrients in your body to metabolise the iron.I'd definitely suggest you get blood tests done for your B 12 and Folates and Vitamin D if you have not had these in the last three months. If they are very low or borderline it could just be too low for you , or you could be having trouble converting the B 12 in your body into an active form . In which case , it's good to ask for a second B 12 blood test to test Active B 12 , the standard or Serum B 12 test you need to have first tells you the total amount of B 12 in your system.
Sometimes the Total can be normal but the active B 12 level is deficient proving you have a problem converting B 12. With this you need to be put on three monthly injections after you have had a few weeks of three injections a week.
If your low or borderline you won't be given injections so the Holland and Barrett Vitamin B 12 containing Methylcobalamine ( there are two types so you need to check the ingredients) is a good oral version.
Folates usual require oral supplements but it is better to go for the most active form of that. They do prescribe these.
Take your B 12 after a meal that doesn't have vitamin C in it for better absorption.
It's good to take Iron and Folates with Vitamin C after a meal to maximise absorption, at breakfast is a good time. Vitamin D supplements need to be taken after your fattiest meal of the day usually the evening as well as your Magnesium so that it helps reduce numbness or any restless muscles that might prevent you sleeping. Taking a daily combined vitamin and mineral supplement ( without iron ) and Omega 3 after dinner is also good for prevention and maintenance.
If it's just an iron issue your type of iron supplement may not be right for you as you could have difficulty converting iron into its active form.
I take Solgar Active Iron , a week of one tablet then two tablets a day until I get my level in normal range.
It's iron in simple form and causes less stomach side effects and constipation. Unfortunately, ferrous products aren't always reliable , and they don't store as well in the system but you can't get Iron Bisglycinate on the NHS despite it being easier to take unless it's by infusion and that's only available for hospital patients on dialysis or in cancer care. My GP checked and was surprised that there isn't a oral supplement version of it available for patients with recurrent anaemia or digestive issues whom can't tolerate or absorb ferrous Iron.
Hope things get back to normal soon , and I'm sure it will , it's just understandably a bit scary the first time you experience migraine like this, take care , Bee
The heads-up podcasts are also very informative and include interviews with migraine sufferers. there is at least one focusing on hemiplegic migraine.
interesting to read Blearyeyed 's comments on B12 as migraine like headaches are a symptom of B12 deficiency. Mine certainly improved after my diagnosis - though wouldn't claim to have had hemiplegic episodes though my co-ordination is all over the place during migraines and I do experience more weakness as well.
There is more on B12 deficiency on the PAS forum - as diagnosis can be very difficult to obtain. PA isn't a type of anaemia it is an auto-immune disorder of the gut that particularly affects your ability to absorb B12 from the diet leading to deficiency - one potential symptom being a type of anaemia in which red blood cells are larger and rounder than others - but this isn't present in 20% of patients at the time of diagnosis.
HelloYou've had good advice here! Just read the replies.....I've had h.m for over twenty years.....they can vary from mild numbness to dense heavy weakness ...feels stroke like...one can not always tell the difference ...especially if you are having migraine head ache visual auras nausea etc did right thing going to a n e......to make sure its not something else .....
Having diagnosed h.m is good ...but as the others have told you it can last anything from 24 hours or days weeks even months......
I think important to have h.m consultant or neurologist who can talk about preventative medication........that might be of benefit.
Wishing you all the very best ...if in doubt or feels different to what you normally have see g.p or go to a n e ......
It is a hard condition to live with and difficult to treat........having right support.....physio to help regain your strength and back up of specialist make all the difference
I had diagnosed byb12 deficiency interestingly and my neuro recommends magnesium and b2! ....but can't really recommend any other than what I'm trying!! So resonate with vitamin discussion ...
H m very complex and one thing help one not help another ....difference in genes etc
Hopefully with more research and information we'll get more understanding ....wishing you well ........it is scary first time you experience a hemi...........hope you have a break now and things settle........you look after yourself.....
A knowledgeable specialist be your best bet for the future if it keeps happening....
thank you so much! For the advice and encouragement. Reading these replies is making me feel less scared and on my own. I’ll take it all on board. Really appreciate it xx
Thinking of you and wishing you well.ive had h.m for over 25 years. It took 15 years to diagnose and I am not under a specialist. I have really unhelpful neurologist and had years of being diagnosed with m.s then being investigated and being then told they didn't know currently what it is or that infact it was a figment of my imagination. Worse that it was due to stress .....asked to leave as nothing wrong with me......find another Dr......
All seems unbelievable ......did find one neurologist who diagnosed me ...took 15 yearsand was 10 yearsago.........a g.p who finally believed me.....i .did find privately neurologist who finally explained what was happening and suggested magnesium b2 and list of priventatives.
Unfortunately by this time my daughter who was like me a migraine with aura suffer started to suffer from hemiplegic migrainein her middle 20s she was fortunate to be diagnosed by a specialist neurologist in headache.
She has had severe time trying many preventative meds all of which have had bad side effects.she felt down the stairs while having paralysis and chronic daily migraine......which caused nasty head injury .......and brain injury...she is recovering well now a year on....but on going preventative meds trial goes on
.....every one she has to stop because of side effects we all get a little despondent and know the list gets small..
She thinks world of her neurologist but I'd wonder if there was any where she could now go ....post tbi.......she is obviously still having chronic daily h.m fatigue from this is a struggle and the migraine.....she was found to have low b12 and is on it every month .....
I just don't know apart from trying the next preventative which has plenty of side effects ...and it seems post her traumatic brain injury you can become more sensitive to medication and therefore experience greater side effects.....but so far it's been side effects and no improvement.....what I'd like to know is there anyone out there who has not found preventative meds that help .........? I have heard of having to try a drip of either verapamil or is it edh? Not sure....I know we can not give medical advice but I am feeling very sad for myself and my daughter.
Atleast I am not suffering as regularly as my daughter but I have mobility issues years later .......the only good thing post my daughters tbi is she had physio and help with weakness and paralysis affecting her again when it has come.
I am sure there are others out there as old as me who have had similar journey and sadly have children or siblings equally affected.
I suffer from chronic hemiplegic migraine. My left arm and leg are numb most days even if I don’t feel any headache. Also have tremor in one of the fingers on the left arm, get tired very easily. I am northryptiline as prophylaxis which helps to some extent but I have gained a lot of weight on it. I tried so many other drugs but could not tolerate any of them. Also take 1000mg of Magnesium citrate and 400mg of B2 daily. Stress is definitely something which makes all my symptoms worse and also lack of sleep. You should see a headache consultant who can try some prophylaxis drugs
so sorry you have such a tough time. Such a horrible condition to have. Knowing we are not alone does help. Some great advice on here. Thank you so much for your help and I really hope new and better treatments will be available soon xx
Hi Coco1381, I just wanted to reach out and say I hope you're doing okay and also thanks for posting this. I've had symptoms of hemiplegic migraine for as long as I can remember, and worsening over the years but I only just found out the name to describe what I experience. This was after a neck issue (which turned out to be cervical stenosis involving a slipped disc) coincided with the worst and most prolonged flare up of the left sided weakness and tingling I've ever had. I get numb foot, tingling, whirring sensation down all left side of body head to toe, hot prickly feeling in face, headache on left side which also feels like a hangover, and brain fog. Eventually I realised it must be hemiplegic migraine after ruling out spinal cord compression. Went to gp but he said it can't be a migraine since I have the symptoms longer than 2 days. So he clearly hadn't heard of hemiplegic migraine. But he did offer me propranolol just in case. I've tried this for a couple of days but don't want to take it as I am sometimes prone to low BP . Im already taking low dose amitriptyline for nerve pain (as I had a pinched nerve due to the slipped disc). I'm going to see a physio soon who specialises in migraine treatment and I'll keep an eye on this forum for advice. Do you think it is worth trying to get referred to a neurologist to seek a diagnosis, or not? Thanks and wishing you well xxx
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