I've just been diagnosed with migrain... - National Migraine...

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I've just been diagnosed with migraine. My symptoms were like a stroke

P13jne profile image
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My left side of my mouth, cheek and half my tongue goes numb. I slur my words when speaking. I've just been put on 40mg propranolol. Can't get a higher dose as suffer with low bp and pulse. Has anyone else got these symptoms as I think it's weird.

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P13jne profile image
P13jne
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MaryF profile image
MaryF

Hi there, you need to urgently go and see your GP regarding Hughes Syndrome, (Antiphopholipid Syndrome), unfortunately frequently dismissed by neurologists: There is some knowledge of this in Scotland: You need to be referred to one of these: hughes-syndrome.org/self-he...

Also known as 'sticky blood'.. and often migraines which do not respond to pain relief.

You need to go along and have the clinical analysis and also blood tests, even if it is just to rule it out!

telegraph.co.uk/health/4400...

Mary F x

MaryF profile image
MaryF in reply to MaryF

ps patients with this disorder often have thryoid problems, (causing low blood pressure and low body temperature, and often Sjogrens also!

Mary F x

P13jne profile image
P13jne

MaryF

Thanks for replying. I had MRI scan, bloods taken, ECG and neck scan in hospital. All results were good. Would the bloods taken not have included the tests u mention? I'm waiting on another appt with neurosurgeon about medication as this isn't helping and the doc can't put the dose higher.

MaryF profile image
MaryF in reply to P13jne

Hi there, these are the blood tests: hughes-syndrome.org/about-h...

Best of luck, and please contact me if you need any more info. Mary F x

Juliapester3 profile image
Juliapester3

Hi, I had the exact same symptoms as you with my first migraine 24 years ago. I was taking the combined pill (with estrogen) which is what caused the severity of symptoms. Have you thought about the hormonal connection?

MaryF profile image
MaryF in reply to Juliapester3

Hughes Syndrome, often shows up first other than migraines with a dire reaction to the contraceptive pill! I had this. Mary F x

Juliapester3 profile image
Juliapester3

I am just offering an opinion, I donot have Hughes syndrome but still had the severe symptoms described above so it is possible to have them simply as part of a migraine attack.

MaryF profile image
MaryF in reply to Juliapester3

Yes, a good point, it is possible, I have a friend that has this, and does not have Hughes but instead has hemiplegic migraines, but they still did get tested for Hughes Syndrome. Mary F x

Juliapester3 profile image
Juliapester3

That's interesting, I,ve just read about hepiplegic migraine, I have these symptoms sometimes but didn't realise it could be a different type if migraine.

1stgls profile image
1stgls

this is my normal migraine symptoms-- my gp diagnosed it as "just" * migraine but propanolol had no impact on the symptoms (even the highest dose)--- my husband laughs (in a kind way) when I try to talk-- I also cannot understand what people say! so I do not answer the phone or go anywhere where I need to communicate.

*I have to say my gp is a migraine sufferer and is certainly NOT as offhand about migraine as I have made it sound

granniem profile image
granniem

I had exactly the same symptoms as you just before Christmas. I was taken to hospital as my doctor suspected a stroke. I was disorientated and couldn't speak properly. The day before I had visual disturbance, flashing lights, floaters, blind spots etc. the blood tests showed no stroke and the CT scan and carotid artery scans were also normal.

Since then I have had several migraines, all with aura but no facial symptoms. My doctor has just prescribed Imigain50 and an anti sickness pill. These seem to be keeping the worse symptoms under control. I've never suffered from any kind of headaches during my life but now, at the age of 65. It's strange! I do hope that you find positive relief from your symptom.

Hi there. Welcome to the crappy world of migraine. Obviously I'm not a doc, so go get whatever checks you need, but as a slight "reassurance" these symptoms are NOT unusual in migraines. The first time this happened to me I was terrified, and thought I'd had a stroke, but now it happens in roughly half to two thirds of my migraines. It is really annoying and still a little bit scary. #runsofftolookupHughesSyndrome

teadrinker profile image
teadrinker

My first migraine was similar to this. I haven't had anything as bad since, although I do say the wrong words sometimes during an attack. I have heard of others sufferring in the same way as you.

It sounds like you've had all the right tests to rule out stroke, and it will be good to see a neurologist to get appropriate investigations and treatment.

As someone who works with stroke patients, I would advise anyone who has loss of speech, facial droop / numbness or numbness / weakness in the arm to dial 999 immediately, even if you've been diagnosed with migraine. It's far better to get it checked out as an emergency rather than put it down to migraine and miss getting the right treatment in the event that it is a stroke.

Ronald1 profile image
Ronald1

I too suffer with low bp and often wonder if this is linked to migraine. I also experience slurred speech during onset, never experienced weakness in my face though. Maybe this is linked to your migraine but if you are at all unsure then I would seek a second opinion. Hope you manage to get satisfactory diagnosis.

elliott profile image
elliott

Hi I have Hemaplegic migraine , Sunct , and chronic daily migraine the reson I telling you this its so confusing as all 3 can give you the dropping of the eye , the mouth Confusion . My H/ M my hole left side goes and I sometimes have seizure with it . The is on of the worsed things to diagnose and live with . Yet keep your sence of humour and this will help a lot , well helped me and my family .

Angelface profile image
Angelface

sounds just like, hemiplegic migraine. I suffer with this and it is awful. I feel you should go back to the gp if you cannot tolerate any more pain killers. There are some pretty impressive solutions out there these days.

Good luck

Angela

Cubby2013 profile image
Cubby2013

I have had ALL those symptoms. I began when I was 14, and still have an occasional one. Early on, Ataxia, aphasia, vomiting, diareaha , you name it I have had it. I have taken every prescription under the sun. I am still not convinced that I am not having a stroke, as the symptons are nearly the same. They are scarry. BUT they will not kill you. Try to go with the flow, and keep trying until you get the right medicine. p

madmaria46 profile image
madmaria46

I have hemiplegic migraine and it is so scary the first time i got one i was riding my bike from schoo at 12 years old and i thought i was going to die. i had the floaters to start then pinsand needles down my right side then i couldnt feel that side at all. i had to abandon my bike in the road and i dont even know how i got home, i coudlnt speak everything i wanted to say wouldnt come out then i started to go dizzy and vomit and blacked out passed out. These are very dibilitating and serious migraines and some can end in a coma, you need to get checked out properly and list every single sympton no matter what it is then you have a better chance of being diagnosed correctly, rule out any other disorders and receive effective medication. The worst part with these horrible migraine is that you never know until you get that first floater or zig zag in your eye that you are going to get one and it is at that point you need to take your medication if you manage to do that at that stage you have a very good chance of it not fully developing to the point where the headache starts and the vomiting. you need to get that meds in early as possible during the attack, Hope this helps and i empathise with everyone who suffers with any kind of migraine they are awful and very misunderstood by the general population who have never had one. kind regards madmaria

myboyharry1 profile image
myboyharry1

Hi there, I have been a migraine sufferer since I was 15.

I had my first Hemiplegic Migraine in June last year I can honestly say I havn't been the same since. I didn't recognise it as at all as it wasn't accopamied by any of the 'usual' symptoms. Such as; tingly fingers (often days before), followed by the zig zags etc.

This was the most frightening episode I've ever experienced. The left side of my face went numb followed by my arm as 'it' worked its way down my body. I couldn't form my words properly and I thought this was the end - I am sorry if that sounds dramatic but I even said goodbye to my lovely 16 year old son.

I was about to call the ambulance when I started getting all the 'usual' symptoms which for me started with the 'lights'. I can honestly say the relief was overwelming because 'normal' migraines I can just about cope with.

I mentioned earlier that I havn't been the same since the June migraine and is still the case. I still get migraines but they I have teaken a different turn - the 'warning signs' I mean. For days before I feel tired, elated, washed out, dizzy - tipping over almost, tingly fingers, tight head, blurred vision and many others things. I did go to the doctors and he told me I'd had a Hemiplegic migraine which he wasn't at all surprised about given my history. Now I know these types are rare but not completley uncommon. The more I seek the more information I find. But I still feel alone and vunerable - almost as if I'm just sitting around waiting for another on - however, stress and worry could be a factor too - and I wouldn't be surprised in my case.

I wrote this to everyone on here just to give a bit of comfort, if all the symptoms do get out of hand then I'll check with my doctor again - but in reality these are something I've had to learn to live with - and yes in deed they do very much get me down. Its been life chaging.

Take very good care everybody C x

Hi all, Well im new to all this. Im Steve im 45 and 6 weeks ago i was fine, never had head pains, then BANG my life decided to change. From fit and well on the Monday morning, to loosing the feeling in my left arm and face with very bad head pains, dizzyness, and sick feeling. WOW what head pains !!!

The next Morning i felt fine but within 30 mins i had two stabbing pains under my left arm pit, and then my left arm and face went numb. My thoughts were hard to process and to put into words, i was very confused, and very dizzy, but no head pains.

I have got "Long QT syndrome", so i thought my heart was playing game's lets get to A&E fast. When i got to A&E my speach was bad and i was shown a seat, then i was shown room, then i was shown a bed, all in 10mins, yes i was admitted.

I was admitted to the stroke unit for four days as it was not known if i had had a stroke or a migraine, i was told its 50/50. I had a CT Scan, chest Xrays, throat scan, and a M.I.R. scan which concluded that it was a Hemiplegic Migraine that i had been hit with.

I found it had to understand how i could have a migraine and no headache. I was given some literature to read on Hemiplegic Migraine's and discharged. I did ask if i could be seen by a neurologist, but i was told that i would have to be refered by my own GP for this, and sent on my way with my symptoms with me.

My Symptoms, all L/H/S i have numb face, numb arm, pins needles in hand, dizzyness, but no head pains

Well its now my 6th week i have been on Topiramate 25mg for 3 weeks.

Week 1, was three pills a day no change

Week 2, was four pills a day, hand,arm,face,bit better, but i now get constant head pains, but new is i now have a very sharp temper, very volatile.

Week 3 back to only three pills a day, all symptoms have come back in arm, face, hand,dizzyness, headpains still there, but sharp temper has gone.

I have finally got my appointment to see my neurologist but thats not until October !!!

The pills Topiramate dont seem to work, im getting fed up with the Doctors not knowing what to do, and im at a stand still which has drawn me to the internet and found this site. To fine you people which have also been down not a good path :-)

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