Hemiplegic Migraine

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Re: Hemiplegic Migraine

Post by Sheena Hulston on Sat Jun 18, 2011 4:39 am

Just read that !!! Does it make sense ? Your Pills work then bounce
Sorry on dopey day X
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Re: Hemiplegic Migraine

Post by onandoffagain on Sat Jun 18, 2011 4:41 am

lol, maybe we should all take a course in creative writing and then we could write beautiful colourful descriptions of all the weird things we feel. It is such a relief to have people on the forum that you can describe these insane symptoms to, and they say 'oh, yeah, I have that!'
Perhaps I will phone JK Rowling and ask her to write 'the definitive descriptive guide to hemiplegic migraine symptoms' It could be a best seller! x

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Re: Hemiplegic Migraine

Post by Sheena Hulston on Sat Jun 18, 2011 4:44 am

Good idea girl but who is going to describe them all to her? This site does cheer me up been on a right downer today!
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Re: Hemiplegic Migraine

Post by onandoffagain on Sat Jun 18, 2011 4:51 am

that's a good point,hmmmm right what we need is an author who has HM. And a publisher with a sense of humour. clown

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Re: Hemiplegic Migraine

Post by Tee on Sat Jun 18, 2011 5:28 am

Oh hunny you are not the odd one out at all - the majority of my really bad days are aura days - aura can be horrendous - have you had a look at the aura list - I bet you have loads of them?

I love the idea of a book about HM Smile Alice in wonderland does not do it justice lol
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HM and disability

Post by TWORTHIN on Tue Jul 26, 2011 12:49 pm

Hi folks,

I am looking at being off work for at least 3-6 months as I recover from a hm on June 15th, but wondered if I may, how many people have been successful in getting okayed for disability benefits? It looks like the short term disability will be possible to pay mortgage etc. for the first 6 months, but it is a different story for getting permanent and/or long-term disability. I don't know how long I will be off work, but everyone is saying that this culd take time. Most people do not believe me when I say that a) this was all because of a "complicated migraine" - what the doctors called it and b) that I have trouble with following converdations (esp. if I can't see their face) or if more than one person is talking, problem solving, completing and planning multistep tasks and reading comprehension (all invisible problems), as well as the physical and obvious problems of arm and leg weakness. I know that I am in no shape to return to teaching at the moment, but who knows how long this will take! Scream

Thanks,
Tracy

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Effects of meds?

Post by TWORTHIN on Thu Jul 28, 2011 12:26 am

Good morning folks. I had my follow up with neuros yesterday and they are thinking some of my slowness in recovery may be because of meds that I am on - specifically lyrica and verapumil which may be delaying my cognitive recovery. They are going to cut the levels of both back and see how things go for the next two weeks. Has anyone else had similar side effects? I am hopeful that this might mean a faster recovery, although I am still looking a tmonths down the track before I may be returning to work (not until Nov at the earliest). Still, it feels good to latch onto some hope that things will improve.

Tracy Smile

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Re: Hemiplegic Migraine

Post by whitzendJane on Thu Jul 28, 2011 5:06 am

Yes I had similar problems on many types of drug..particularly with cognitive problems..I still have these issues but to a much lesser degree.
SO your migs can and do cause similar problems cognitive wise but it is a tricky balancing act with the medication and how you react to it too...sometimes it's hard working out which is causing which problem and that's is from both the neurologist's angle and your own.
It will take time to decide what's a happy medium treatment and symptom wise. Don't try and hurry things too much caasue anxiety will just make it more problematic...slowly slowly is the way forward.
Take care and best wishes
Jane
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Re: Hemiplegic Migraine

Post by onandoffagain on Fri Sep 16, 2011 5:34 am

Well its been a while since I was on here, but I have moved forward, I have resigned from my job as im sure this was a major trigger for my HM's I have started my own training company so I can manage my hours as needed. Doc did suggest to me yesterday that I claim DLA as a lot of her 'far less effected' patients do! Trouble is there are days when im running around fine, and I have visions of being on some saints and scroungers programme being filmed walkin up the downs with the dog!
My biggest fear at the moment is collapsing when out with the kids, I am having increasingly to be rescued from car parks all over the place!
My biggest sadness at the moment is that we were trying for another baby to join our family for 18 months before my attacks re started and following a miscarriage. Now we have had to decide to leave our family as it is as I am more of a burden than a mother! Also dr has said if we do try again I will have to stop medications. I have to be sensible and use my head it would be completely unfair on my kids and the baby, but my heart aches for another baby.
Any way, im off for a long lie down in a dark room.xx

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Re: Hemiplegic Migraine

Post by Tee on Fri Sep 16, 2011 10:41 am

Oh poppet Hug That is a very big thing to deal with - it causes such heart ache - but you have a great family and one day they will have children and you will get to hold them and love them too Smile But if you need some support on this, I do have contacts who you can talk to, if you need to?

Great news on the training company Smile That is a major step forward - starting your own business with this is just amazing. And as you say you will have more control on what you can do and when. A much better work life balance.

I know how you feel about the DLA - I have not claimed it even though the docs said I should - but others have and I am sure they will be able to give better advice than me on that.

One thing you might want to consider is a medic bracelet - just in case you do ever collaspe - which I hope never happens - but it would give the people around you a head up on what is going on.

Hope the dark room helped today xx


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Re: Hemiplegic Migraine

Post by Sheena Hulston on Fri Sep 16, 2011 11:18 pm

Oh Hunny
Know what you mean about longing for another baby... went through a few losses myself and took a long time to get over them, not sure I still am actually! Just love the ones you have as Im sure no meds and the pain may be to great to bear another one. Sad
I know the feeling about being watched on the good days! Hehe! Its like you almost feel guilty for feeling good!! I stroll off for a 2hr walk with my dogs and always wonder if a goody two shoes is on the phone reporting me!! hey hoe who cares!!
Great news about the new job just wish i could get one! Been looking for ages and had a few interviews, but get so wound up about them I seem to end up having a size 10 on the day and being unable to string words together and sound like a moron and end up having to explain my HM to them ...... so hence no job!!!
But at least things are looking good for you x x x
Sheena
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Re: Hemiplegic Migraine

Post by Juliem on Sun Apr 22, 2012 1:41 am

Hi Everyone, I was diagnosed with HM 9 months ago after the initial diagnosis of a stroke or MS. Ten months later I am still suffering paraylsis, loss of energy as if my alternator was broke and speech problems (sounding foreign most of the time and experiencing racism) Also the occasional headache. Nothing seems to be working, my GPs and neurologists are not interested and after taking part in a documentary wich will be out in summer 2012 on sky 1 i feel very let down and alone. However on the positive note I do have rare periods of normality but they seem to be getter fewer and fewer.
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Re: Hemiplegic Migraine

Post by Dr Pav Khaira on Sun Apr 22, 2012 7:55 pm

That sounds like something quite extreme you're going through! Hope you can find something that works
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Re: Hemiplegic Migraine

Post by Juliem on Wed Apr 25, 2012 3:42 am

I have just gor back from a visit to my Neurologist feeling very low. He has referred me to Cognitive Behavioural Therapy and prescribed a different anti-depressant. Commented on my weight and asked about my mood.
How does he think I feel after this condition has ruined my life as I knew it. I cannot work or drive and I have to live day by day to see how I am feeling.
I am at my wits end and the light at the end of the tunnel is getting further away from returning to normality.
I have tried the medications that have been mentioned on here, physiotherapy, rest and excercise. I have kept a diary (food and day to day) but cannot find what me trigger is. Has anyone got any suggestions please.
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Re: Hemiplegic Migraine

Post by Tee on Wed Apr 25, 2012 7:35 am

Oh poppet I am sorry - you seemed to have got a little better last year........... have you still working? I find that chemicals are a big trigger for me?

Was the TV show the Medical one with the twin doctors?

Which Nero are you seeing? I wonder if you need to see someone new?

x

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Re: Hemiplegic Migraine

Post by Juliem on Wed Apr 25, 2012 7:51 am

Hi Tee my life is a rollercoaster at the moment, I had 3 weeks last year when I was good, now I am lucky to have a day. Yes the twin doctors reffered me to a fantastic physiotherapst but now as mentioned before good days are becoming very rare. I have been put on Mirtazapine (anti-depresant) and referred to a cognitive behavioural therapist ?????!!!!!!!!. My neuro is Dr Memon from Medway Maritime Hospital. He told me today he was not a magician, and what would I like him to do. If he doesn't know what hope have I got. He also said he felt sad that he could not help me. Mmmmm
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Pain instead of Numbness?

Post by Scarlett on Sat May 12, 2012 11:54 am


Hi Tee,

I read your post below while I was looking for the answer to the following question:
"After a hemiplegic migraine, is it possible to have pain on my left side instead of numbness?"

I have pain down the outside of my left arm into the palm of my left hand. I have pain in my left hip running down the outside of my left leg. I have numbness in my left foot. I am still having the daily migraines with photophobia, nausea, confusion, visual changes, weakness in my left hand and left knee, exhaustion, dizziness, tremors, clumsiness, memory issues, difficulty with finding words, easily distracted, and more.

I have only had the pain in my extremities after an HM once or twice before, but never for this long (about 20 days). Should I be worried about this?

Thanks,

Scarlett Question



Tee wrote:Hi there

You are not alone and certainly not mad lol - I get most of those symptoms and TOTALLY understand a headache that does not hurt - It was so nice to read that Smile It is hard sometimes to explain how crap I feel with a migraine when I do not have a headache. But the visual and physical aura symptoms are so debilitating. Like today Sad

To make you feel a little better here are my symptoms:
Head ache that doesn't hurt (although I do get them if I do more and they can become the banging ones, also get ice pick ones)
Swelling in my left cheek
Flashing lights, snow, floaters, vasaline lens eyes
Left sided numbness and weakness in face, arm, hand and leg
Speech problems (loss of words)
Tremor / inner shakes
Alice in Wonderland Syndrome (have a look at that it might explain your eyes feels different sizes)
Getting short tempered

I have these 24/7 it is just the severity that changes and the more I do the worse they get.

I do not get the mental stuff with the normal daily HM migraines, but I did with the 3 big ones, they were like having a full stroke and it took me months to get my thinking back. ie confusion and inability to make any choice. (I once stood for 15 mins looking at the bread in Tesco's as I could not decide which bread we should have - it is bread for god sake and we always have the same one - funny now - but not then - my 5 yrs old came to the rescue!)

Thankfully I do not get suicide thoughts - I am just too damn stubborn for that lol - But saying that I did when on Topamax - so do check the side effects of your meds and make sure someone close to you knows that that crosses your mind once in a while. Its not a nice place to be Sad

Sorry I am in ramble mode - if that does not make sense - sorry - been a rough day.

[b]
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Re: Hemiplegic Migraine

Post by Tee on Sun May 13, 2012 8:50 pm

Hi Scarlett

Sorry to read your still having a very rough time........... As you know HM can range from a slight tingle to complete paralysis.... so severe numbness and pain are quite common... the 'run over' stage can take a while to settle and can be so draining......... if however this is a new symptom for you, you should call your doctors and have it looked at.......... the problem with migraines of any kind is that they can change in pattern over time so one can never be too sure.... so I think if its something which is a big enough change to cause worry - its best to make the call to the docs...

Hugs

Tee x

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Re: Hemiplegic Migraine

Post by Kala on Sun May 13, 2012 11:21 pm

Hi Julie,

I'm sorry to hear that you're having such a rough time and I can totally empathise with your situation. I've recently been told by my consultants that there is nothing more they can offer to me so I need to wait a year or two for new medications to become available.

All I have ever asked of my consultants past and present is that they are honest with me and if they can't help me then for them to admit it. It's totally devasting to be told this but I prefer to know where I stand. I have been encouraged to seek an opinion from another headache specialist and if they are unable to help me then I'll know this is as it is. So what I'm trying to say is respect your consultant's honesty but it doesn't mean that's the end you need to seek the opinion of another headache specialist.

Best wishes,

Michala
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Re: Hemiplegic Migraine

Post by Kala on Sun May 13, 2012 11:34 pm

Hi Scarlet,

Like Tee has said the symptoms of HM can vary so much. However, I agree it may be worth being checked out but there is the possibility you're suffering from allodynia. Allodynia is pain that is caused by no physical stimuli and doesn't respond to pain relief. My experience is that I feel I have a tourniquet tied around the top of my arm and/ or leg and can vary in severity from a dull ache to excruciating. I also can experience allodynia across my shoulder blades, which is of a burning nature. Then I can experience allodynia over an area of my scalp, which is of the more normal nature of allodynia, where the area affected is extremely sensitive to touch, even a gentle breeze in my hair can be excruciatingly painful.

Hope this helps

Michala
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Re: Hemiplegic Migraine

Post by Dr Pav Khaira on Mon May 14, 2012 7:12 am

Tee is absolutely right, anything new and your doctor should take a look!
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Re: Hemiplegic Migraine

Post by Neilg on Fri Aug 16, 2013 11:30 pm

Hi I have only recently been diagnosed with bad migranes after being admitted into hospital with what they thought was a stroke down my left side very scary when I told then of other symptoms severe headaches etc that's when they diagnosed this it's nice to know I am not alone in this and you guys seem really friendly and knowledgeable of the problems thanks..... Neil

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Re: Hemiplegic Migraine

Post by Tracey Dovey on Mon Nov 25, 2013 2:49 am

Hi, I have just found your page and I am SO glad that I have!! 2 years ago I was rushed to hospital and treated for a stroke, then 5 days later told I had migraine, sent home and that was it!! I had 6 weeks of follow up physio for my weakness and it got better in time. The I continued getting mild migraines without the severe symptoms monthly as it is triggered by my hormones but only lasted a few days. I was given Migraleve on prescription by my GP and kind of felt like I should have been grateful that I hadn't had a stroke and that I was making a fuss. My hormones have started becoming more erratic the migraines have become more frequent and more severe with my face going numb again etc. My GP put me on Propanalol and I had gone up to taking 80mg but the Migraines were starting to take over so 11 days ago my GP told me to stop taking Propananlol and has put me on Topiramate, starting with 25mg at night then after a week increasing to 50mg a day then 75mg the following week etc.... I have felt SO ill for the last 10 days now!! I am in SO much pain, my face is totally numb as is my right arm and leg. I can walk slowly but if I walk far my leg starts to really ache. I have trouble hearing and swallowing, the right side of my head feels 'weird' a kind of tingly numbness that is really hard to explain. I get really confused when talking and feel really withdrawn in myself at the moment, I feel so sorry for mu husband and kids as my sense of humour is zero and when they mess around and have a laugh it really aggrevates me although I try to keep quiet I sometimes snap. I went back to my GP on Friday to try to get help with the pain and have been put on Naproxen which is helping but making me tired, she assures me the symptoms are all normal migraine symptoms and will start to get better once the Topimarate gets in my system. No-one in the medical profession have ever mentioned Hemiplegic Migraine to me, it is just what I have discovered whilst looking for answers as to why I lose the use of my right hand side!!

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Re: Hemiplegic Migraine

Post by Tracey Dovey on Mon Nov 25, 2013 3:43 am

Oh and following on from my post above, can anyone else relate to the term 'numb pain' as although it sounds completely contradictory that is how my arm and leg feel xx

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Re: Hemiplegic Migraine

Post by Sarah on Mon Nov 25, 2013 11:17 pm

Hi and welcome. Smile 

I don't have hemiplegic migraine myself, so don't get the same symptoms. But it does sound like maybe you ought to be referred to a headache clinic, or neurologist, depending on what you have locally. You need someone who can at least tell the difference between types of migraine.
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Re: Hemiplegic Migraine

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