is this all related to hemiplegic migraine

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is this all related to hemiplegic migraine

Post by brainbox on Mon Jun 18, 2012 12:41 pm

any advice or experiences to offer

hemiplegic migraine is now is day 12 and getting worse, no pain in head distinctly but no balance, no power in left arm or leg (it just hangs there and drags) no energy and to top if all off, no muscle tone to hold my, how can i put nicely, 1s and 2s in

constant aura, mood swings, no appetite and loss of vision at times (scary), spasms in eyes and hearing, taste, speech and smell affected also numbness over skin (turned shower on at 10 the other day and didnt realise it for about 30 seconds) etc

has anyone else expeienced this or similar, ive got appt with gp on monday so hoping will get some answers but not really holding big hope as gp doenst know anything really about hemiplegic migraine

not on medication for this at the minute, had to wean off topamax due to side effects im back to see neurologist in end of july

really stuggling with this


also if you have hemiplegic migraine how long does paralysis last for you on averahe?
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Re: is this all related to hemiplegic migraine

Post by Tee on Tue Jun 19, 2012 7:41 am

Oh poppet - it sounds like a big one.......This all sounds like HM BUT if its new to YOU - you need to have it checked out..you know HM and stroke are linked and if these symptoms are all new you really need this checking out sooner than later... Monday sounds a long way off to me - can you get to see your GP sooner?? I would try to push for an appointment tomorrow......

Also do you have email contact with your consultant? If so it may be worth dropping him a line to explain what you are experiencing - they may bring your appointment forward.

But everything you mention I have had during the bigger HMs - my biggest HM as you know was 6 yrs ago and the numbness and fog took years to get over......... If I am honest I am never out of the symptoms even now - only the levels change...

Do you have someone with you?






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Re: is this all related to hemiplegic migraine

Post by brainbox on Tue Jun 19, 2012 10:58 pm

thanks Tee
saw gp yesterday, she wasnt bothered much as said she has seen me worse, she was rushed and flustered the one i saw so she just gave me medication for the urinary incointience and rushed me out, she doesnt know much about HM but feeling relaly bad and woozy on it with new medications

so the gp ignored the bigger problem and went for a smaller one

nope to email contact with consultant, i got appt for end of july and as its holiday season its hard to get someone, the nearest hospital to me hasnt got a resident neurologist so i try to get to the one where he is but its very hit and miss

im living aloen and without any reliable back up support system so its tricky but im battling on cos i have to

trying to keep chin up but things falling apart around me


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Re: is this all related to hemiplegic migraine

Post by Tee on Wed Jun 20, 2012 4:28 am

Oh sweetie - I am sorry - PM the name of your neuro and I will get you the email address.... most are good at emails if things are bad.....

Do you have an option of seeing another GP?... but to be honest if things get worse I think should consider A&E.... if it is just HM there is little they can do -but from what you are describing I feel it needs checking out...

Do try to rest as much as you can - do you have anyone you can call who can come and help you for a little while?

xxx

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Re: is this all related to hemiplegic migraine

Post by Dr Pav Khaira on Wed Jun 20, 2012 7:52 am

Ah, I'm sorry to hear you're having such bad trouble!

It's worse when you have not enough support

Hope you get the help you want soon. Rant to us anytime!
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Re: is this all related to hemiplegic migraine

Post by brainbox on Wed Jun 20, 2012 11:45 am

thanks Tee and Pav

im still feeling as i was and help is onway, friend arrives at weekend to stay for a few days and she will kick up a stink in the drs if they arent doiing much so she is very vocal whereas im not

im relaxing as best i can beween sofa and bed but i dont know where time goes, i use the computer as my lifeline had to give up on tv many months ago it aggravated things for me

trying to take one day at at time
some of the time its hour by hour

Update it's 10am I've had a shower and scalded myself as skin numbness has been present for awhile now but I forgot about it temporary and without looking turned shower up full whack, the siege of getting in and out of the shower took from just before 8 till now, it's not supposed to be like this .... Mad


Last edited by brainbox on Wed Jun 20, 2012 8:11 pm; edited 1 time in total (Reason for editing : Update on what's going on)
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Re: is this all related to hemiplegic migraine

Post by brainbox on Wed Jun 27, 2012 5:43 pm

Hi

the effects as described above lifted on thursday night late and i has the postdrome on Friday but glad to feel somewhat "normal", i had a few hours clear headedish on Saturday morning before another HM hit and its been to and froing since the paralysis and no balance with what i describe as vertigo even if not diasngosed with it offically

vomiting again started last night around 10.30pm, friend has been here holding my hair back Embarassed and helpign me when incontirneice happens, 4 times last night Embarassed .. does anyone else have a problem with this when HM hits?

dreading going in car jouney this morning but have to see psycholigist, apparentely i could be converting emotional distress into physical sysmptoms so trying to get that side of it ruled out .. its a process this is affecting me very physically and i get depressed about it ... not the other way around

medical dr on last hosptial admission diagnosed functional weakness ... think Robbo has same diagnosis ... i think it means we dont know but dont want to tell you that

wishing you a migraine free day

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Re: is this all related to hemiplegic migraine

Post by brainbox on Fri Jul 06, 2012 4:07 pm

my migraine is ongoing again, its repeating every few hours where i get some feeling back in arm, face and leg then after a very short time i lose it again

getting used to no balance, mental fogginess, insominia etc

friend helped for a few days but had to go back to her job, bless her heart she took time off for me

my eyes are having oculargyric crisis so started medication for that, its extra painful from there and losing hope with this, really fed up of it, contacted hospital and cant be seen any sooner unless a&e call neuro consult

ive had memory loss quite a few times while friend was staying, makes me wonder how often it happens when im alone - i was told is part of hm , its scary

i found out from gp that consultant also thinks i have MUMS (migraine with unilateral motor symptoms) i dont get how this corrseponds with HM as ive been told i have too, i havent got asking yet whats the difference

whinge over, thanks
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Re: is this all related to hemiplegic migraine

Post by brainbox on Wed Jul 25, 2012 9:36 am

well i saw neurologist today, asked him to clear up diagnois so its a mix of hm, mums and functional weakness but not clear cut any of them

im very weak on left side, neuro not worried about that, starting sumatriptan when a migraine hits which seems to be 98% of the time as i never get out of one fuly before the next, its constant

advised i shouod go for a driving assessment before i want to take to the road again and see how i am when i start driving again

overall neuro didnt seem too bothered, didnt get headache diary as was away on holiday, seemed very blaise as this could be stress related
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Re: is this all related to hemiplegic migraine

Post by Tee on Thu Jul 26, 2012 8:36 am

Hello you - how are you doing today?

They see so many people that at times they can come across as not careing Sad... did he give you a management at all?

What do you mean about the diary?

x

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Re: is this all related to hemiplegic migraine

Post by brainbox on Thu Jul 26, 2012 11:43 am

Hi Tee

the management plan is take sumatripan when pain levels reach over a 7 and see him in 6 months, if the sumatripan makes weakness worse ive to stop it .. thats it in total .... i felt it was all coming down a psychologial line Mad

only i pushed for a treatment of some sort it was going to be leave and see ...

i sent a headache diary (not requested) but did it anyway for past 3 months, secretary filed in it in notes, he only gave it cursory glance tuesday when i refered to it, it was the first he'd seen of it

im bipolar anyway and currently in depression but felt like thats what he putting everything down to ... its frustating

gp wont take any other action unti i see consultant again if sumatripan makes things worse as it might as its heavily contratidicated with my other medication.. when i pointed it out he didnt seem bothered but the next few weeeks will tell if it helps or not

then i hope its not back to drawing board .. with a long wait in between and no prospect of help... asked social services for help as i live alone, this is a temporary condition apparently so NO, its been going on for a full year with little respite but day by day its a big struggle




Last edited by brainbox on Thu Jul 26, 2012 11:44 am; edited 1 time in total (Reason for editing : left out a word so it didnt make sense)
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Re: is this all related to hemiplegic migraine

Post by pīwakawaka on Fri Jul 27, 2012 10:19 am

I guess UK doctors are much like NZ doctors - over worked, and the best ones are over there (meaning they have gone overseas where the pay is better and the stress is less).

I certainly understand your difficulties dealing with the medical profession. My GP refuses to refer me to any specialists as he says it's a waste of time as there is nothing more that can be done. I've even asked if it's possible that some of my symptoms could be psychological and whether it would be worthwhile seeing a psychologist, but again he doesn't think it would do any good. In fact he told me they wouldn't thank him he did refer me.

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Re: is this all related to hemiplegic migraine

Post by brainbox on Sun Sep 02, 2012 1:14 am

the sumatripan has made things worse and has been stopped by gp who is pushing for neuro appt but i dont hold out any hope shorter than 6 months - so its continues up to nearly daily but not being treated Mad

for my depression which is agrraveted by constant migraines leaving me almost bedbound at times im supposed to attend day centre, referral was made in july and i still havent atteneded initial appt due to migraines affecting my ability to get there

its a vicious circle which drs dont seem to give a monkeys about, if i would just lose weight, walk more, etc then id be ok
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Re: is this all related to hemiplegic migraine

Post by Dr Pav Khaira on Sun Sep 02, 2012 5:07 am

Hope you get your appointment soon!
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Re: is this all related to hemiplegic migraine

Post by Lesley anne on Sun Sep 02, 2012 1:59 pm

I'm afraid some times you need to hassle them. I had to go to A&E a few times plus pester my gp, but I got a neuro appt for two weeks later. Hope you get one soon!!!!

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Re: is this all related to hemiplegic migraine

Post by Tee on Mon Sep 03, 2012 7:48 am

Brainbox - how are you doing now? x

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Re: is this all related to hemiplegic migraine

Post by brainbox on Thu Sep 06, 2012 5:12 am

Hi Tee

having hm attacks worsening a least every other day and no appetite as feels like stomach paralysis itself if you know what i mean, no balance most days and stuggling to manage, stress is high as relationship falling apart so its not helping,

its a constnt migraine and im fighting depression since july and its all getting too much, im not getting out of one attack beofre the next and if i go to a&e the nearest one i can possibiliy get to doesnt have a neurologist at that hospital at alll so can hardly walk recently as its been affecting both legs and one arm as well as drooped face alot so getting there would be major seige as support netwok iffy at the min, partner says im binging these "migraines" on myself so has been trying to convience frineds tht im makingthis up

sorry re typos have to get off laptoop now as going to thow up soon


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Re: is this all related to hemiplegic migraine

Post by Lesley anne on Sun Sep 09, 2012 8:05 am

Hi brainbox, just read ur post, how are u doing now??? Thinking of you, they are awful migraines. I had one that lasted 6weeks, from July. I can empathise!!! I now understand what triggered mine and it was the stress from other people and their carry on. As for ur partner......., if he's hassling you then that isn't helping you. Have a word in his ear...., take care of yourself. I know it isn't easy and I get frightened too. Thinking of you.

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Re: is this all related to hemiplegic migraine

Post by pīwakawaka on Sun Sep 09, 2012 11:07 am

Hi Brainbox. Sometimes partners can be as big a pain as the migraine. I'm beginning to notice a pattern with my wife's behaviour several hours before I become aware that a migraine is on its way. She starts to become cross and irritable with me. I've asked her about this and she says that the tone of my voice changes. my sentences become short and abrupt and I frequently don't respond when she talks to me. I've tried explaining that it's the early stage of a migraine, but her response is that that is no excuse for being rude. No matter how hard I try to explain, she can't see that it's something I do on purpose or that it's something I'm even aware of.

However I am now starting to use her actions to me as an indicator of an oncoming migraine. I'm just hoping that her changes in mood are a response to my oncoming migraine and not a trigger for it.

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Re: is this all related to hemiplegic migraine

Post by Tee on Fri Sep 14, 2012 5:16 am

Oh brain box - I am so sorry to read this......... have you made contact with your nero? Have they offered you DHE to try and stop the attack? Its not for everyone, but can help if you get stuck........ wish I was closer..........

Partners who do not understand are no help at all........ are you on FB - could we post stuff on your wall that he would see?

Tee xx


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Re: is this all related to hemiplegic migraine

Post by Tee on Fri Sep 14, 2012 5:18 am

Brainbox - The other option is to print this out

http://migrainetalk.forumotion.co.uk/t955-hemiplegic-migraine-the-basics?highlight=HM+basics

And ask him to read it xxx

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Re: is this all related to hemiplegic migraine

Post by brainbox on Thu Oct 04, 2012 8:25 am

hi all

its taken time but ive enduring many more HM attacks and ive spoken to partner at length, we still together and he was letting off steam but it coming out as if he didnt believe the effects this is having on me also when his health state himself is put into the mix its hard, he is going for tests on monday next as without tryinng in the past 3 weeks he has lost almost 3 stone affraid and cant afford to lose anymore so that kinda explains why he was in such funny moods for a while and is having problems letting his frustrations about my HM near constantly being there it all came across the wrong way

we've kissed and sorted out the communication difficulties as i get it hard to take in and process information when im in a HM attack, ive got a date for an appt with the neuro which is in mid December so unless it gets alot worse suddenly i wont see him till then

HM is affecting everyday and some weeks its decides to take out my other leg but not the arm on that side, im thankful for that as my dominant hand is right and its mostly working normal - i have spent since saturday on sofa as couldnnt drag myself off to bed and thankfully today im down to just being able to use one side of body whereas from saturday it was both legs and one arm

thanks for being there and your support, much appreicated
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Re: is this all related to hemiplegic migraine

Post by brainbox on Tue Oct 09, 2012 2:50 pm

i asked GP would she get in touch with neuro with regard to DHE, im not a candidiate for it due to other medication i am taking and the major chance of complications involved.

the headache for many months hasnt been the worst problem, it was the paralysis but now the headache is getting to be more dominant and more painful, trying not to take painkillers as dont want to risk medication overuse so i use less than a 16 pack of paracetamol every 2 months and once its gone, its gone so i think im well within the limits

its affecting all areas of life as its nearly constant and taking its toil, mentally and physically. has anyone else with HM had problems with continuing weakness in the dominantly affcted limbs

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Re: is this all related to hemiplegic migraine

Post by pīwakawaka on Wed Oct 17, 2012 8:31 am

I've never been diagnosed with anything other than "migraine", but frequently my symptoms match those of HM. I have been normally right handed, but over the last 10 - 15 years I have tended to do may things left-handed. Often during migraine attacks I become exclusively left-handed.

Even when I'm "normal" I often get asked if there is something wrong with my right arm/hand as I'm not using it even for tasks that would be better done with two hands. I'm not usually aware of it until it is brought to my attention.

My left hand is now mostly the stronger of the two. And I now have a rather uneven stride - even at the best of times. I guess I'm lucky in that the changes have been so gradual that I have not really noticed them, although others have.

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Re: is this all related to hemiplegic migraine

Post by brainbox on Sun Nov 25, 2012 2:38 pm

BIG SCREAM - sry need to let it out beore i lose it Sad

partner is still unsuppotire and whre he used to spend time with me when HM bad now he CBA, he sends a txt wishing me well and if i txt bck just keeps txting to say he cant understand due to typos - its 95% over betwen us - no family around to hep

HM wise its almost constant, i have lumps o differnt parts of my head from hitting differnt surfaces, not sure wat at times im eating too much floor for my own good - gp just tells me to bear with it and try not to fall, the appt for december has now been postponed with no new date sent out -

im living alone with lottle back up, an d mostly bedbound and completely houebound now - ive considered ended it and leaving my head to reaseatch as i dont see other opoptns

no helop from social services as this is aapparently a tempapry condiotn, (lmost onstnat for 18 months), gps dont know and nueor not really interstesed, no poit in goint to a&e as they have said before its for accidents ande megencyes this is an ongong problem so not bothersd - freinds are fed up of me aswking for bits of help at dittfernt times as im not able to go out of house so thanks to partner "talks" feinds now thing im deprssed, (ive had deprseion for over 20 yers so its not that) - i cat afford to pay a carer

the affected parts keep chaging some weeks its both legs and myae one arm, other times its one side, i cant get to see gp when both legs are gone and even if could get home visit cant get to doot to let them in - i know im not eating prob as most days cant make food, cant lift ssutffrom overn and nly so mych can do i micto, my large fridge and stick cuplatbdod in in agargae but i cant get to it most of time when hm bad and hve tto relpy on somene to bring min in stuff but when i cant think whats theere and be clear and prescise as to what and where i dont get it, im to wobbly and cant lift stuff out of the boes on the shleves so its a non barainer to go out lmykf

i cant shower / bath anyore its been months Shocked and a sink wash has to do, its cos i dont hae any help when i need it, i had long hair ealier in year its now shoert and spiked as easier to mange - im not living im hearldy existint

im sorry im ranting but im t witsw end - no ope in sight and feeling really caro
- over emtional too due to another aua but sitll having last migraine tattack before a ew one - it dones stop
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