me and my hemiplegic migrains

Id love to be able to give you some dates and a run down of what has gone on in some sort of order but im not very good at remembering things!
I know my first real attack was at work one night where I collapsed. I then continued to have loss of conciousness, left side weakness etc for several weeks. No cause was ever found. Then I had another attack and went to my GP, I also had constant patches of severely painful skin, like it was on fire but with no visible signs. My GP told me he was sure it was multiple sclerosis. I spent a few weeks getting used to this and getting use to a life where I couldn't walk far, stand for long or do anything useful with my left arm, I had speech problems and tiredness like ive never know.
I went to adenbrooks to get the official diagnosis and had an MRI scan which showed it wasn't MS. The neurologist told me it was hemiplegic migraine and i thought he was having a laugh! How could a migraine cause me to feel so ill for so long, stop my speech and give me such weakness?? well the more i looked into it, the more it fitted with so many problems I had had for years. I had several attacks as a teenager which presented just like meningitis but with no actual virus present. I was forever collapsing or just being tired and weak for no reason.
Anyway, I was put on amiltryptiline 80 mg daily which seemed to quickly mend the nerve damage and stopped the painful skin patches. This worked really well for about a year. Since 2009 thought the attacks have become more frequent and severe. I seem to have a major attack where i collapse and loose a lot of my motor skills in my left side, I get spasms and look like im rocking when i think im standing still. When the motor symptoms disappear i get sever mental health issues ( papnoid delusions, suicidal thoughts etc ) these have been attributed to the migraine as I recover back to full mental well being 2 days later ( not your normal paranoid delusional schizophrenic) This is my most disturbing symptom as I have no control over myself. My husband has the details of the crisis mental health team as I become so ill so quickly.
I then have 'mini' migrains for several weeks which give temporary motor loss in my left side, blind spots, loss of colour vision and any number of weird symptoms. I call them my hangover migraines as they seem to just linger.
The thing I find hardest, is that I am an adaptable person, I can take problems and just adjust to them. But I get adjusted to being unable to walk without a crutch, to have to sit on a stall while cooking and going to bed at 8 oclock at night where i am so exhausted, and then it all goes away and im back to full function. I think i would find it easier to have a permanent disability, i know that sounds silly but i never know form one day to the next whether i will be able to walk, talk and stand, or be perfectly ok!
Needless to say my work are not supportive and are looking for any excuse to fire me. I phone the DVLA as my work said they were concerned about me driving but the DVLA said they weren't interested and HM wasn't reportable (thank goodness) Has anyone had to loose their license?
On my last attack the headache itself didn't come until 10 days after the weakness and other weird stuff. In fact the headpain is my least troublesome symptom. Unless I have a cluster headache which is the single most painful thing i have ever experienced ( I have given birth twice)
Anyway sorry for the long intro.............

Hi

Welcome to the forum and sorry you are and have had such a difficult time. We are all here to support each other and help you through the maze of migraines best we can.


My neuro advised that as long as I didn't drive whilst suffering a migraine, visual problems etc then I was OK..I cannot drive at night as my night vision is poor..probably like many of us our driving becomes less due to many factors such as fatigue, visual problems etc
I get sudden bouts of depression and paranoid thoughts during painful mig episodes and I suspect we are not the only ones.

As for the cluster headache question there is a very good organisation called OUCH online who could advise. The thing with cluster headaches (CH) is they tend in the main to be like clockwork, so much that sufferers can time their attacks (although this can vary it does tend to start this way). Many sufferers are woken from sleep (many attacks happen at night). Attacks tend to come on very suddenly too. Also most sufferers have temporary horner's syndrome (constriction of one pupil and a droopy eyelid), on the effected side. They also tend to be shorter lasting (eg less than 4 hours).

Here's a link if you need more help..it's important to have the correct diagnosis as the treatment for this type of primary headache disorder is slightly different..oxygen can be used to ease symptoms along with imigran injections and verapamil to name a few.

Have a look and see what you think:

http://www.ouchuk.org/html/clusters.asp?

Don't worry about the long intro it a complex problem but you are not alone.

Kind regards
Jane
x

Thank you Jane, I have never really looked into the cluster headaches, as even thought they are very painful they are easier to manage. They always start at 5 or 6 in the morning, hurt more when im laying down and ease of within an hour or two. I can cope better with pain than i can with all the 'weird' stuff! x

The rocking you mention can indicate CH as the sufferer finds it really hard to keep still..migrainuers tend to want to stay still (generally speaking but it can vary).

It is possible to have more than one type of migraine and also more than one type of headache disorder and this can confuse the issue.

I can recommend OUCH as they helped me a lot in my early days ..my disorder has a lot of cross over symptoms like Horners Syndrome etc and I tend to get more agitated than still.

Sadly no one size fits all with headache disorders and we don't all fit in a neat little box with our syptoms..(if only). Obviously I am not a doctor and the other guys who have HM will be around to advise you on the many and varied symptoms they share. Sometimes you only realise you haven't mentioned some of them when another suffer asks a specific question about them.

We also have a thread from another person who's son has Aspergers and migraine which you may find interesting. Migraines have a genetic link..eg both my parents have them..therefore I got the mig genes off both of them (YEAH!).

Found the thread I mentioned above (takes a while but I get there eventually)

https://migrainetalk.forumotion.co.uk/t191-hello-from-mum-of-boy-with-acute-confusional-migraine

Hope I have helped rather than confused further?

Jane
x

Hi I have HM as well but constant migraines daily I had my license taken off me when my local nhs thought I was having strokes and the moment I said I had sever memory loss it was taken. Now Dr S wont give it back until my Aura (right side weakness) is sorted out.
It drives me crazy as I love driving but here goes the best bit I love my kids and other peoples kids more and would never live with myself if I could not hit the brake fast enough because Aura came on!!
I am just that sort of person x

I absolutely agree Sheena about the driving, I am confident at the moment that I have enough warning before an attack and get someone to collect me from wherever I may have ended up! It would be devastating to lose my license but nothing close to the devastation of hurting someone else.

The rocking i think i didn't describe very well. Its more of muscle control problem, so if i am sat up straight using my stomach muscles, they don't hold me still so I move, same with my neck, if its not relaxed the muscles don't stay still and it moves back and forward. I find this really embarrassing. (my kids find it funny though which makes me laugh as well) Thank you so much for you help x

My hubby tells me one thing I do now is sound "blunt" sorry if I come across as that, dont mean to!
When I was on one pill (cant remember name) went to hospital in extreme pain and told them I was suicidal and wanted to end it all and would unless they helped and they told me they could refuse to treat me if I got aggressive! The pills said go straight to a&e if you had any suicidal thoughts!!!! HAHA NHS makes me laugh as you can tell ive had a hard time with Drs up till meeting Dr S Hes great.

Hi Onandoff

And welcome to the forum

I am so sorry to read you are having a rough time - HM is a damn hard migraine type to crack. But some people do get a reduction whilst on preventatives. - What meds are you taking now?

I totally understand about the 'weird' stuff - the physical aura gets to me a lot, even more than the actual head pain. Had a rough silent mig today and the left side has gone again

OUCH is a very good idea for the cluster stuff

Sheena - you are not alone with the bluntness - I think when you are in pain, it drains you more than you think - and basically you do not have the patients to answer stupid stuff.

Hi Onandoff,

I also get HM's and can be anything up to 4 a month lasting between 2 to 5 days at a time.
I suffered a stroke in 2008 and has left me with severe left side weakness, and the migraines just make it worse.
I was advised by my consultant not to drive, but have since surrendered my licence, but as you say I am lost without mine but have to make do, my wife doesn't drive either, we use taxes mostly as i find it very hard to use public transport, use my Mobility Scooter to travel around locally.
But as said before we are here to support each other, and we all have one thing in common, Migraines and not just a headache as a lot of people think it is.
I'm interested in what you say about your employer and trying to sack you, as an ex Union Rep for a Managers Union I believe Migraines are covered by the Disability Discrimination Act (DDA) and under employment law you will see this on this link, which is the hse.gov site. If you need anymore advice please ask.

http://www.hse.gov.uk/disability/law.htm

Graham

Hi Graham Im sorry you lost your licence but glad im not the only one!
Funny how its one rule for some and one for others but as I said I wouldnt anyway, I once ended up 50 miles from where I should be with no recollection of getting there I could have done anything I remember talking to my self All the way home(that was just before my first stroke) I have never been so scared in my life!!
But on bright side memory ok now just got to sort out Aura then will get mine back, how about you?

Sheena x