Migraine? and temporary paralasis

[jb1964]

Hi,

 

Sorry to post on here but a little desperate and wondered if anyone has ever had anything like this before that could help or ease my mind.

 

My daughter (ASD - 14yrs) has in the past had a similar thing - some sort of pain (stomach, head or sick feeling) and then a period of when she makes noises - becomes incoherent and as if she sees something she's afraid of - her eyes are open and looking over to the one side but she cannot seem to speak or hear you. Afterwards she remembers very little, usually has a very bad headache/migraine and then sleeps for hours (sometimes her head can hurt for a couple of days).

 

Yesterday at lunch time she had some sort of collapse? She comes home from school at 1.15 to my parents for lunch - she had a bad tummy and went upstairs to eat a sandwich (which she does each day in the quiet) - at 1.45 she started making noises - my mum went to her in the bathroom and she was having one of these strange things - making noises - not talking - seeming scared etc - when all of a sudden she screamed brought her right leg up so she was standing on one leg - and both her right arm and leg almost doubled up on itself - very rigid and the right side of her face collapsed - my parents thought she was having some sort of stroke. My dad carried her to the bedroom and her face went very purple her lips went blue and he thought she wasn't breathing - he gave her some breaths and said she then he could see she was breathing a funny raspy noise and seemed totally asleep and floppy her face and body back to normal.

 

They called the ambulance - who arrived just before we did - and she seemed to regain some sort of confused state - her eyes were closed but she was rolling around on the bed making noises (moaning/groaning and pulling her knees up or holding her head) - this lasted for about 15mins - when she eventually opened her eyes but still didn't speak just stared at the paramedics and then intermittedly closed her eyes - and continued to roll around the bed making noises.

 

We were then taken to hospital where she started to come round in between sleeping and obviously got upset - her head was hurting and she couldn't seem to understand anything for a long while - she was very very cold and her finger and toe-nails were a blue black for about 2 or 3 hours.

 

We eventually saw a Paed. registrar who done lots of physical tests to see if her muscles were all ok, looked into her eyes etc - all our daughter wanted to do was sleep and she couldn't remember anything about what happened other than she thought she screamed because she couldn't breathe and thought she was going to die.

 

After about six hours (by this time she was totally conversant except for drowsy and wanting to sleep) we were told they couldn't explain really what had happened as they hadn't actually seen it - but they thought that she may have had a severe migraine as apparently they can on rare occasions cause temporary paralaysis. They didn't think it was a fit because she hadn't had any sort of jerking - although I don't know when she sees this thing she's afraid of whether that could be described as jerking - it's jumpy agitated kind of movements but not a body jerk - more a head and upper body movement.

 

We were then sent home - on the letter we've brought home for the gp it says ?todd's paralysis post migraine...... I've looked it up on the internet but seem to get little info that says what happens or why etc.

 

Wondered if anyone has heard of any of this - obviously we're scared this is going to happen again and have just been sent home really with a watch her and monitor anything similar again making notes of whether there's a jerk or how her breathing is (fast/slow).

 

Many thanks for listening....

 

Take care,

Jb

[di30]

Hi Jb

 

So sorry to hear of these awful events . <'> <'>

 

I, myself suffer with terrible migraine headaches and they can be very disabling, my older son follows me.

 

Sounds like your daughter had a very bad time of it.

I have not heard of the other you said though, I will try to look this up and get back to you on this, and of course your all bound to be on edge about this now, hopefully this is a one off.

 

You have all been through a very traumatic time of it and worry, and I really feel for you - I am this will not happen again, fingers crossed to you and your family.

Sorry not to be that much help on this, but if I come across any info on this I will forward it on to you okay.

 

All the very best.

Luv Di xxx

[Clare63]

JB,

 

What an awful thing poor you and poor your daughter.

I have heard of this before, very recently in fact, the lady I care for who has SMA, called an ambulance the other night because during a migraine she feel numb on her left side, she had had a stroke before and this felt simular, following tests she was told the same thing paralysis post migraine, she said it was a very scary expereince. The para meds said its qquite common, though as a migraine suffer myself I've never heard of this before.

 

I hope things are all Ok with you guys now.

 

Clare x x x

[Tally]

Hi jb, I'm sorry this is happening, it must be really scary for your daughter and you too.

 

You can get epileptic fits with just the stiffening and not the jerking. The turning blue, memory loss, headache (both the before and after headaches) and drowsiness are all fairly common after a fit. She's obviously not fully losing consciousness as she has memory of screaming, but certainly she is losing some consciousness.

 

I'm not a doctor, so they may well be right with the condition they have suggested. But if the only reason they are ruling out epilepsy is because there was no jerking movement, it is not a good reason to rule it out.

 

I hope you get some answers soon, and a treatment!

 

T x

[rainbow queen]

not sure if this is usefull

but this year i started getting -what they call thunderclap migraines at the point of you know what[ ]

 

id never had this before and it did feel really really bad like a sort of stroke type thing-i felt i couldnt move and it was all down one side of my head and body.

really scared me-went to drs who then arranged a mri scan of my brain,gave me strong migrane tablets..........i had some of the results back -there was something that showed up in my scan -one of my veins was bigger than the other -or something-and they belived i wa sok -but they wanted to double check with drs in that field at hope hospital....im still waiting results.

 

id deffo go back gps and ask if there is a need for a brain scan or further investigation.........i really wouldnt like to be sat around waiting for it to happen again.

[jb1964]

Many thanks for replies - they are much appreciated.

 

There is quite a lot of migraine sufferers in the family inc. both my mother and myself - but I've never seen or heard of anything like what we experienced - so it does relieve me to hear that it isn't unheard of - although I do feel even more confused over the non-jerking aspect for a fit. My father has since said today that when he first carried her to the room she was making a funny noise and dribbling everywhere - which was probably part of the facial droop thing. We did ask about the blue lips etc - was that in hand with migraines but they really couldn't give any answers.

 

We've talked about it today (she feels ok'ish to be honest not as 'hungover' feeling as she has in the past) and she says she can remember going to the bathroom feeling not well and then making a noise and thinking she couldn't breathe and was going to die - she said she could also remember then looking around at our faces in the bedroom when the paramedic was there and feeling scared because she knew something must of happened but she said she couldn't talk because of the pain.

 

I was so grateful that she was home with nan and gramp - I cannot imagine how things would have gone if it had happened half an hour earlier when she was in school - although it just came out of the blue - she hadn't had a headache or anything that morning so obviously this is going to make her nervous that it's going to happen again as I can't give her any answers as to why it happened or really what it was.

 

We just feel in a bit of limbo over it - it's almost surreal except that we're just so frightened.

 

Thanks again,

Jb

Edited October 20, 2007 by jb1964

[bid]

Hi JB,

 

I work at a residesi special school for children with severe epilepsy. Tally is absolutely right: there are quite a wide range of seizures, and many don't include 'jerking'. It is also very common to have a headache or other symptoms before (and after) a seizure.

 

If it was my DD, I would insist on a referral to a paediatric neurologist to have a proper investigation for epilepsy. I would be particularly concerned about the blue lips, as this is usually a sign of a problem with breathing.

 

Good luck, and I do think it is very important to get this properly investigated as soon as possible, especially as this is not the first episode of this kind.

 

Bid

[Frangipani]

Hi JB <'>

 

Everything you described is an Epileptic Seizure especially what you described afterwards sounds like a Rolandic Benign Tonic Epileptic Seizure.

 

Dont muck around - I would take her straight to hospital A & E she will get emergency observations and an MRI asap.

 

Please take care - I have been through this with my daughter and my partners daughter. This is much more than a migraine. If too anxious to drive please call an ambulance.

 

<'>

 

Frang <'>

[Guest Lya of the Nox]

hey hun <'>

i would try and get her investigated for both the seizures and migraines , but take hormone fluctuations into account

 

i would think she will need mri, and other investigations

 

thinking of you all

xxxx

[Mumble]

Hi JB, <'>

 

I'm sorry I don't know the answer as I have no experience of this, but I do hope you can find out the cause soon so you all feel more settled. The stress of wondering when it might happen again is likely to have a negative impact on her health. I think others have given some good advice and Tally and Bid's info about epilepsy are very interesting and worth considering, if only to properly rule out - I think it was Tally who put the stat in another thread about 80% of ASD individuals having some type of epileptic activity - I have epileptic brain activity that can be seen quite clearly apparently on an EEG, but I don't have any of the 'symptoms' of epilepsy. Someone else mentioned hormonal changes which could impact on all sorts of things, so I think there's quite a lot to investigate.

 

Mumble

[cmuir]

Hi

 

I've heard of this. About 8 years ago I was getting lots of severe headaches and visual disturbances (ie partially losing sight, seeing spots, etc). Strange this was that there would be no warning, but these episodes could last for hours. I went to my GP who sought an emergency referral to a neurologist. He was certain that it's migraines (I do still get them). I was prescribed fast acting medication which is injected directly into the blood stream. I was puzzled as to why I wouldn't necessarily have a sore head - what I thought of as a migraine. My consultant advised that these are several types of migraine and talked about temporary paralysis. One of the interesting things that he said was that he's had several patients who've experienced temporary paralysis but thankfully no one has ever came to any harm (I was explaining to him that on several occasions my vision would go when I was driving and it was scaring the living daylights out of me!) - hopefully this may be some sort of comfort. Can imagine that it must have been scary for you all, but hopefully medication (if that was a route you wanted to go down) would alleviate things.

 

Best wishes.

 

Caroline.

[Pippin]

I'm with the others on this one. I'm really disturbed that you were sent home from hospital without any deeper investigations into what happened. This is way more than just a migraine. ...and even if it isn't, it could happen again when no-one is around (sorry if that's scary....I mean it to be). If it were me I'd be banging on the GPs door tomorrow morning and demanding some URGENT action. She REALLY needs some very urgent neurological investigations.

 

Sorry to be scary but they shouldnt have dismissed you so easily.

[Lynden]

I have to say I read this earlier and didn't reply because I thought it sounded exactly like the fits my Mum takes. My Mum had a brain haemorrhage 11 years ago and following that developed epilepsy and it sounds very much like the seizures she takes. She never did the jerking thing. Thankfully hers is well maintained on meds and she hasn't had a fit for about 5 years now.

 

I've had numbness following migraines down my arm and in my face but never what you describe.

 

Lynne x

[jb1964]

Hi,

 

Just wanted to say a very big thank you to everyone who replied to my post. To be honest - I needed a push to do something because I thought the gp wouldn't take me seriously and your posts made my mind up as it could have been something serious.

 

We saw the GP who was absolutely appalled that they had sent her home - and the actual info that was on the system said she'd had a minor head injury!!!! - so they knew nothing about what had happend.

 

On top of what happened my daughter suddenly explained about a fortnight later that she was 'losing time' and felt scared - that it had been happening a couple of times a month for quite a long time but suddenly it was getting worse. She's since been having them a couple of times a week and also in school - she is kind of aware (to some degree) of what is going on around her but can't speak or interact.

 

The GP referred us to the Paed about a fortnight ago - and he's arranged an EEG which has just come through yesterday for 2nd Jan together with a copy letter that he's sent to the gp - saying he thinks she has 'complex partial seizures'??? - and depending on the results of this he may arrange a MRI.

 

Now need to do some internet searches on this............

 

Once again many thanks for making me push this.

Take care,

Jb

[loobylou2]

<'> <'> Just read this JB hope you get some answers fast, it must be so frightening for you all. Take care

[oxgirl]

Hi, jb, glad the gp is taking this seriously and getting your daughter the attention she needs. Hope you get some answers and some solutions soon. <'>

 

~ Mel ~

[krystaltps]

Hi Jb, so sorry to hear about your DDs experiences. I'm glad the GP listened and referred you to a decent paed. As I read your first post the words "Complex partial seizure" came immediately to mind. Unfortunately, most doctors and paediatricians struggle to recognise anything more complex than absences or tonic clonic seizures. R had his first seizures at 16 months old and, for this reason, was not referred for EEG and MRI until he was 5. His seizures are generated from the frontal lobe which means his seizure pattern can change periodically - making it more difficult to dx.

Once R started on the road to dx, I became aware that most doctors have very limited understanding of epilepsy (except for paediatric neurologists), and trawled the internet and library for information myself. A good reliable source of information is the NSE, and they have a fantastic forum (almost as good as this one!):

 

http://www.epilepsyforum.org.uk/

 

A partial seizure is one that involves only part of the brain (usually only on one side) and the individual remains conscious throughout. A complex partial involves impairment of consciousness, but does not involve total loss of consciousness. They can take many forms from simple lip-smacking and momentary absence, to lengthier and more complicated movements, rigidity, jerking and impairment of consciousness that can result in "bizarre" behaviour.

At the moment, R has partials and complex partials, and his do involve jerking, but only the legs. A child I work with at school has complex partials that are very like your DDs - his eyes turn to the right and one side of his body stiffens and goes rigid. When he comes round, he is confused, non-communicative and wants only to sleep. He also has absences. It's important to let them sleep afterwards as it helps the brain "re-boot", a bit like a computer.

Epilepsy is slightly more common in teenagers with ASD, and is usually a result of hormonal changes - which is a good thing in a way, because it means they are more likely to "grow out of it".

Well done you for going to your GP and not just taking the hospital's word for it, and good luck for the EEG (take some baby wipes to help get the glue out of her hair!). Let us all know how she gets on. <'> <'> <'> for you and DD.

[Tally]

I'm so glad you're starting to get to the bottom of this and working toward a clear diagnosis. Glad you have the GP on your side.

[Kathryn]

I don't know anything about this, Jb but it must be very worrying for you. <'>

 

I hope you get to the bottom of what's going on - good that it's now being properly investigated.

 

K x

[Frangipani]

Hi JB,

 

<'> <'> <'>

 

Your in good hands. The EEG shows the electrics of the brain and how severe the seizures are. Getting in touch with te Epilepsy Association is a good move for support and literature on the type of seizure she is having. Signs to look for e.g often they have 'aura's' just before a seizure, that is heightened sensitivity and sense of smell, and overwhelming lethargy.

 

The MRI is crucial this will show what is going on the true cause, so brace yourself, it maybe minor it may not be. Been through this with my daughter and ex's daughter. Keep positive. Whatever the outcome its 2007 and the specialists are exceptional. You are welcome to pm if you need to vent,.

 

Thinking of you, the MRI will give you all the answers.

 

love

Frang x x <'> <'>

[kirstie]

Wow i'm appalled the hospital sent you all home in the first place.

I did think whilst reading your post that it sounded like a complex partial seizure. My own son is under investigation for Cerebral palsy and i think he has had a simple partial focal seizure a few weeks back. I'm taking him to see Ian Jordan just aftre the New Year to rule out any problems with the eyes. Hopefully we will have more investigations at Hospital in the not too distant future (yeah right!!)

Anyway it sounds aas though your daughter needs to be seen very quickly because if this is seizures then she is having a heck of a lot of them right now!

My other son, Lewis who has AS suffers from stomach migraines when under extreme stress and he has stomach pains, goes white and a bit jittery, throws up, falls asleep and is fine upon waking.

Hope all goes well on the 3rd. Keep us posted and hope you all have a fab Christmas.

Kirstie.

[Frangipani]

Hi,

 

Just wanted to say a very big thank you to everyone who replied to my post. To be honest - I needed a push to do something because I thought the gp wouldn't take me seriously and your posts made my mind up as it could have been something serious.

 

We saw the GP who was absolutely appalled that they had sent her home - and the actual info that was on the system said she'd had a minor head injury!!!! - so they knew nothing about what had happend.

 

On top of what happened my daughter suddenly explained about a fortnight later that she was 'losing time' and felt scared - that it had been happening a couple of times a month for quite a long time but suddenly it was getting worse. She's since been having them a couple of times a week and also in school - she is kind of aware (to some degree) of what is going on around her but can't speak or interact.

 

The GP referred us to the Paed about a fortnight ago - and he's arranged an EEG which has just come through yesterday for 2nd Jan together with a copy letter that he's sent to the gp - saying he thinks she has 'complex partial seizures'??? - and depending on the results of this he may arrange a MRI.

 

Now need to do some internet searches on this............

 

Once again many thanks for making me push this.

Take care,

Jb

 

 

Hi JB

 

Was thinking of you <'> how are you and your daughter

 

Fxx <'>

[jb1964]

Hi JB

Was thinking of you <'> how are you and your daughter

Fxx <'>

 

Thanks Fran - hope you are ok - been reading some of your posts and so glad you're still here.

 

As for the EEG results we're still waiting - she had a follow up appt at the hospital on the 14th Jan (the EEG was on the 2nd) but when we got there the report hadn't even been typed up (it's coming from a different hospital) so she said she'd ring as soon as she gets them. She said that they will wait til that comes back before deciding what medication to prescribe - if it shows a specific area involved? then they'll need to do the MRI first - as when it's in a specific area they need to know whether the seizures are being caused by natural triggers or something else? - I have had a little look on the net at stuff but it's so complicated I don't want to go there yet until we get a firm answer on things.

 

Although the appointment was to have the results - on one hand it was good that they hadn't come back because the consultant had time to go over everything with my daughter - explaining as much as she could - and also one thing that was interesting was lack of sleep being a major trigger - although how we get round that is another thing as my daughter has never been able to get to sleep easily.

 

Take care,

Jb