Hemiplegic migraine help!

[Forgothowtospell]

Hi I am looking for some advice please.
Is there anyone else who suffers from hemiplegic migraines who could help? 6 weeks ago I had a migraine for 1 day (or so iv been told), iv never really had migraines so just thought it was a bad headache. 5 weeks ago, 3 days after the migraine, I had tingling and numbness in my left arm and leg then the next day I woke with pain in my arm and leg resulting in me unable to carry out simple tasks. Since the migraine I have had a ct scan to rule out stroke and everything came back all clear, but nearly 6weeks since the migraine I am still in constant pain in my left shoulder arm and leg. I have been back and forth to the doctor and they are persistent that it is migraine related. I am not so convinced as I have never been one to have headaches in the past and don't suffer from them at the moment (at the start of my new medication I had a few headaches but that was also the most common side effect of the medication) and I don't believe nearly 6 weeks later still in chronic pain, just wondered what other people's experiences were and if it does cause this symptoms for so long. Thanks for reading.

[853690525d]

I don't have experience of this ongoing pain
Could you pay for an appointment with a neurologist who specialises in migraine? If you Google migraine charities, they may well have a recommendation. I would take this seriously.

[Forgothowtospell]

@853690525d thank for the reply. I have thought about this, but live really rural so would have to travel quite a distance for a specialist. Just getting so frustrated with the doctors telling me to phone back in 4 weeks everytime they talk to me. I'm in so much pain and can't do simple things, like walk any distance without being in pain.

[Orangesandlemons82]

The migraine society in London do consultations over the phone and via zoom. They are a charity so you pay what you can afford. They formulate a plan which is sent to your GP who prescribes the treatment. They are amazing, they really helped me. Would really recommend getting in touch with them.

[Orangesandlemons82]

Sorry it's actually called The National Migraine centre

[Forgothowtospell]

@Orangesandlemons82 that sounds great, I will go and Google them now, thanks.

[SimonJT]

I have these, thankfully I haven’t had one in a long time.

Mine effect the left side of my body, for a few weeks I will have mild pins and needles in my left hand/arm and it is slightly numb but I have full use of it/my hand. This is usually followed my a fullblown migraine 6-8 weeks later. When I have a migraine I lose the ability to speak (but I think I’m speaking normally), my left side becomes very weak and numb (including my tongue), I have a very high heart rate (eg 180bpm), blank spaces in my vision and a splitting headache.

My after effects vary, it takes weeks for my speech to full recover and I am very stumbly with my speech for quite a while. My tingling/numbess can still be there 3/4 weeks later. I don’t get body pain after my migraines but I do get very bad and very painful muscle cramps.

Even if your pain is migraine related they should have provided adequate pain relief.

[Forgothowtospell]

@SimonJT that sounds awful, poor you 😢. That's what is making me uncertain that hemiplegic migraines is what I have, as my 'migraine' happened first, and it definitely wasn't not anything like you have described. It definitely was worse than a normal sore head but only lasted around 6-8 hours. I was then totally fine until 3 days later, when the tingling and pain started. I just don't think they are connected in the slighted. The medication I have been given is pregabalin 100mg twice a day, which doesn't take the egde off at all.

[wineandsunshine]

I was diagnosed with these after lots of tests in 2018. My successful medication was amitriptylene at a higher dose - the neurologist said they don't start working until you hit 50mg.

Once they did - it was a miracle. After a year of constant pain!

I do think it's trial and error sometimes with medication - good luck op, these headaches are awful x

[MyTearsAreOnFire]

I have these. Well one neurologist thinks I do & prescribed Propranolol and the other neurologist doesn’t agree and wants me to go on amitriptylene.

Their bickering is driving me crackers. Phone appointments is making it much worse!

My symptoms are fuzzy head, cognitive impairment, numbness down one side, weakness on one side, double vision, intermittent falling over & no headache!

The aches from the weakness last for days! I had to give up my software developer job because of the cognitive impairment

The reason why I have two neurologists is because my GP is also a consultant neurologist! Which is useful - but he hinders all investigative work done by my actual consultant. (His colleague)

One mentioned it could be epilepsy & myasthenia gravis.

[Needmoremummyjuice]

I have had these in the past and ended up under neurology because of it (also came out of nowhere!) Propranolol works well for me and I couldn’t tolerate Amitriptyline. Pregablin is a fairly hardcore controlled medication so if you are getting little or no relief from this it def needs reviewed as it can also be very addictive. After a bad migraine I can feel tingling, tiredness and generally like I have a hangover for anything from 1-5 days but never into weeks IME. On a good combo of preventers I haven’t had a bad migraine for years fortunately. Have you just had a CT of your head or an MRI too? Often for neurological issues an MRI is needed for more in-depth images. In the mean times there have been some good results in trials looking at daily magnesium and riboflavin (vitamin b2) supplementation in migraine prevention (the papers are available on the net and I was recommended these by a neurologist). Hope you get sorted it sounds like you are having a rough time

[NotanotherboxofFrogs]

Another HMer here, yes that sounds like my 3rd attack of this, I was weak left sided for a couple of months and then it wiped both sides, leaving me unable to move at all from the neck down, lucky for me my local neurologist is a headache specialist and we threw all sorts at it, it was very stubborn and it was nearly 12 weeks to break it and then physio, ot and speech therapy to get me going again.

currently candsertan is helping me for my high bp and also hm, muscle relaxant, managing my pain levels as far as possible and lots more besides

Reducing my stress levels, rehabilitation to get me moving again, intake of water, regular meals, dietary intervention as needed, treating my sleep apoenea, treating some of my other condition, pain management, speech therapy, occupational therapy and physiotherapy, muscle relaxant, quality sleep, counselling to help me unload my stresses, sunglasses, mouth guard, support braces, heat and ice packs, trying to identify my triggers, medical alert jewellery as it tends to scare people who call an ambulance and even when I can't speak I am trying to communicate it's not a stroke and flash cards for when I can't speak at all.

A+e staff mostly recognise me now and ask is this "the usual" (which means Joe public has panicked and called an ambulance who bring me to hospital) and so they let me go home to recover in leaving my own time as nothing hospital can do to speed up my recovery.

Mine tends to hit hard and fast, so I can be walking talking and in less than 90 seconds to 5 mins, I am slumped over/ on the ground, going numb, struggling to speak but I think I'm still sounding ok, face falls on one side, bp is thru the roof, apart from that really long one above, it averages out at 7-10 days. I've lost memory, continence, swallowing ability, balance, movement, vision at times.

My left side is a lot weaker than my right but 10 years later (this month) I am still working my way thru it, I have about 20+ days each month affected by it.

My advice in short is try anything offered to see if it might help you, some things made it worse, I've stopped various meds needed for other condition, I've added things back, took supplements, and will try every avenue open to me.

[Ispywithmycynicaleye]

I had a CT scan in 2010 for a suspected stroke (severe headache for a week then one night had full paralysis on my left side). Was given the all clear then later told it was a hemaplegic migraine.

I just received MRI results for something unrelated and it showed I DID have a stroke back in 2010.