Hemiplegic migraine needing answers :( sick of never getting anywhere and I'm only 24 :( please help X a X

[Hemigirlx1]

Hey guys, I'm new to this but I've been diagnosed with a hemiplegic migraine in January 2017 after what they thought was a stroke my face drooped big style my left arm and leg had no sensation no movement no reflexology nothing! Even all the little tests they did nothing my BP was at its all Time highest and then suddenly dropped when moved to the ward.. but no fluids were given intravenously (baring in mind I work in this hospital so I know the protocol) but nothing was done I was too weak to do anything no neuro obs were done on me as I had suffered a head injury prior and the nurse looking after me was going mad because nothing had been prescribed for me and no body was coming to see me (e.g stroke team) because the ct (thank goodness) was normal.. but because my left side was practically paralysed I was getting weaker and weaker and began choking on my own saliver so he rang the stroke team and said you must come see this girl now.

They came.. lifted my arms up for me.. surly they have to see you try do it for yourself ? Anyway because I'd had no pain relief my head hurt so I said ow my head because he raised my arms above my head.. His words and I quote " none stroke she's for neuro "

I got discharged a week later with a diagnosis of a hemiplegic migraine a walking stick (as I was still suffering with my left hand side) and some form of epileptic tablet called toprimate? (Yet im not epileptic .. apparently it's to help with the pressure in my brain) to be increased up too 100mg before I see neurology on the 21st March.. and yet I still feel like I've got pressure in my head (I say nelly the elephant is sat on it) I'm on 75mg now

I lost my vision 2 weeks ago, and my feet and face have only just started to discolour and go blue and purple but the gp says it's fine ???? How is that fine ???

I keep having attacks (hemiplegic attacks) and the gp says I should only go to him if it happens on the right hand side as that's different .. so I did last week on Wednesday as it started on my right side.. did he do anything ? Not at all.

So now I'm stuck.

Do I do something or wait it out ?

Much love A ❤

By the way the photo is from when it first happened

[malalatete]

Hi there, sorry you have had these start. Life with any kind of migraine is no fun and the rarer types are even more special.

There isn't really much you (or anyone else for that matter) can 'do' for these attacks - apart from -

Rest well and give yourself time and TLC to recover from your attacks. I always used to try and rush getting back to normal but it seems to be a false economy - you just get rebound.

Keep taking the tablets regardless of how bizarre a choice they seem (we migraineurs get given all sorts of stuff on a 'try it and see if it works for you' basis - so be prepared as well as epilepsy meds for blood pressure tablets, anti-depressants, and other meds more usually used for mental health problems).

Make sure your neuro when you see them has a good understanding of headache and if not ask for a referral to a migraine specialist.

Read up on your condition - you will find lots of stuff on the net and that will help you become your own expert. In time you will learn what is 'normal' for you for your attacks and this will reassure you that nothing else more sinister is going on.

Keep alert and question changes. I went from having traditional aura migraines every month for years to getting clusters and non- aura migraines in between about 6 years ago. Most weeks I was suffering with headache. Tried various meds and seemed to have got it to a more acceptable level but doc and I are only just piecing together whether these new headaches are connected with my the problems I have had with my legs these last 6 years - or whether that is something completely different...

Best.

[Hemigirlx1 in reply to malalatete]

Thank you very much sweetie X hope you're okay x

[Frodo]

Head injuries can be dangerous. If you can be seen sooner than March 21 I think that would be better. Can you ask the neuro's secretary to fit you in asap if there's a cancellation?

Your symptoms sound very extreme indeed and I haven't heard of "feet and face have only just started to discolour and go blue and purple" with migraine before - or are you saying this is due to your injury?

Presumably you're not able to work at the moment. I hope there's someone to look after you, and accompany you to appointments, parents maybe, and that you can get plenty of rest.

If you get worse than you are now perhaps you should consider going back to A&E. Maybe you need an MRI scan now as the symptoms are continuing. Unfortunately, once you have a diagnosis of any sort of migraine, most doctors will take your symptoms less seriously. (However, just FYI, a relative of mine had a similar attack to you for the first time ever, and although the first diagnosis was migraine, it turned out, after extensive testing, that he had a heart condition.)

[Hemigirlx1 in reply to Frodo]

I have my partner and grandparents to help me and without them I really would be stuck

I don't understand why my feet and face have started to discolour I thought maybe circulation issues but I've just put it down to being cold all the time and not being able to warm up like right now it's 08.57am and we have the heating full blast and my partner is walking round in a t-shirt and I'm sat here in my pajama bottoms jogging bottoms over the top 2 pair of socks a top a big baggy jumper and a scarf and hat and I'm freezing all this while under our duvet shawl thing we have.. so I have no idea..when I had my vision loss I had my blood test taken and because I was in a place where no one had been specific in telling them which bloods to take everything which turned out that my neutrophil count was rapidly high!! Yet 4 days later at my gp surgery they repeat it and it's normal but they only did the full blood count not what the place at the hospital did ??? I'm stuck I'm just really stuck.

Thank you for replying I hope your relative is well xx

[Frustated]

So sorry to hear you were so badly treated, being an 'inside' and knowing what should be done does not help. You can go through PALs and make a complaint, although you may not have the energy.

You are about the same age I was when mine started, they are so debilitating you have my sympathy. Migraines of any sort are terrible, I do know how terrifying they are. I really don't think your feet should be going blue, you need to go see someone, make a list of all that is and has happened and take your partner, see another GP, phone 111. Not all of this adds up.

With regard to the topiramate you are right it is an epilepsy drug but as Frodo said we are sometimes prescribe these. You need to keep a migraine diary (I use a desk diary) recording your symptoms, pain level, mg of meds, pain meds take and anything else (period, nausea, vomiting......) you could keep a food diary too as you may find a link there.

There are various supplements that can be take- magnesium (400 -600mg daily, co enzyme q10-dont know that dose don't take it, Vit B2- 400 mg daily. I also take a daily vitamin supplement as I don't eat well when having a migraine.

Also try contacting Migraine Action (presume you are in the UK), they have a specialist nurse who for the small cost of £15, if a member, will give you two calls giving loads of advice.

Take care hope you are having a better day today

Cathy

[Hemigirlx1 in reply to Frustated]

Thank you so so so much Cathy! ! It was truly disgusting the care I recieved of certain members but then again the care I got from others was unremarkable.. I've got into my gp today and going at 3.45 to discuss my feet and head situation and see what can be done, I'm just fed up that's all I want to be back to the old me shall let you know what he says! Thanks Again hope you're well xxx

[Hemigirlx1 in reply to Hemigirlx1]

I've been and basically been told to stop my medication as he thinks I've got raynards ? Or however it's spelled but I've been on them since I was in hospital and started them on the 13th of January and got to finish the course by 21st of March which is when I see the neurologist?! What do I do?! Is it worth coming off them? I've gone from 25mg to 75mg and almost ready to go to 100mg the last dose or do I risk getting more sick? Or do I risk the neurologist being pissed at the fact I stopped them? Xxx

[Frodo in reply to Hemigirlx1]

Not sure what you should do, but as far as I know, you should not stop the meds abruptly - usually meds like that have to be tapered off gradually to avoid a big reaction. But ask the GP for further advice on this. Presumably it also depends to an extent on whether you feel the med is helping and controlling the symptoms, or making things worse.

As the GP has told you to stop taking it, ask the GP to communicate this to the neuro if you're worried the neuro will think you are non-compliant, or perhaps raise it with the practice manager, that you have had conflicting advice and are not sure what to do.

I've just looked and apparently Reynauds can result from taking migraine medication, although the NHS website doesn't mention Topiramate specifically as one of the meds.

I think it's also associated with auto immune disease. You might want to check out Hughes Syndrome (aka Antiphospholipid syndrome), which can manifest for some people as severe migraine / stroke or TIA, and other auto immune disorders. Not trying to scare you at all but good to rule things out.

Really hope you get this sorted.

[Hemigirlx1 in reply to Frodo]

Yeah he said to come off them straight away?😨 as he don't want anything else to happen e.g with my heart rate being so high etc it was running at 130 at the surgery today and that was me being calm.. He went through the list of symptoms that the tablet can give you and one of them is Reynauds apparently.. I don't know I just feel like Ive got this far and it's only a couple of weeks away from seeing my neurologist that why should I have to stop them ? Can't I just wrap myself up in a thousand layers to keep myself warm haha!!

Thank you again for your advice it truly means a lot ! I'll take on board what you've said and ill speak to the practice manager at the surgery tomorrow see if anything can be done hope you're well x

[MaryF]

I do suggest you are urgently tested for Hughes Syndrome/APS here are the blood tests, it is an autoimmune condition which makes your blood a bit sticky.

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

MaryF

[Hemigirlx1 in reply to MaryF]

Okay thank you Mary I'm due back at the doctors on Monday so I shall ask for those to be done thank you for you advice xx hope youre well xx

[MaryF in reply to Hemigirlx1]

Often but not always other relatives will have other autoimmune disease including Thyroid, and early heart attacks or strokes etc and miscarriage history. MaryF

[Hemigirlx1 in reply to MaryF]

The only person who has had a heart attack is my nanna but she didn't know she was having one xx

[Julielux66]

Each time it happens call 999 and go to hospital that is the only way I have finally got someone in the Neuro team to help me because you are having Neuro changes your face is dropping it's the priority of a stroke to go to hospital that is what my GP advice was never mess about if your face is changing always call an ambulance better to be safe than sorry I ham now waiting for an MRI scan to see in fact if I have had a mini stroke last year and there will be some scarring left on the brain to indicate this is the case! I take Topiramate and Zomig nasal spray 5mg triptans help and I have just been put on Zindometacin which seems to be working really well no trips to the hospital in the last 2 weeks good luck 😊😊

[Hemigirlx1 in reply to Julielux66]

Thank you sweetie hope you're well now xx

[mysmugcat]

Thinking of you and so sorry. May add more.