Chronic Migraines with Aura - help? Any suggestions

[Marialiana]

I have been suffering from the above condition now for 2 years to the extreme where I was found unconscious at work, I have attended a&e on a few occasions as my migraines mimic strokes. However I am having a migraine not a stroke and now, I am no longer at work, as I can not work in the casity I was employed as my migraines are so dibilitating. My issue and question is i live in Oxford and am under the Jr I have trialled all meds and non help. I have been psychiatrically assessed and it's all physical, I am now down to try BOTTOX.

My question as my migraines are so severe and effect me terribly physically when they hit I am not able to carry out my role as I was employed, however to be able to get an ill health pension I which my work want me to pursue as they do not want me in the work place they need the neurologist to say it's a permanent condition, to which my neurologist says he cannot. As there it's treatable/mamageable ?? However I have suffered 2years so far and find neither has happened. When I said this to him he shrugged his shoulders??

Saying Parkinson's disease is a permanent condition, we can not say that migraine is??

I need to find a consultant with a different view I think? Who can fight my corner as I have only a few years left before I retire and I don't want to be sacked because of not being able to do my role due to these episodes. Instead I would prefer as work is trying to help me an offer me ill health as they have seen me have these episodes on several occasions,

Any suggestions??

[dina7]

I've been seeing an Osteopath who specialises in headaches and migraines: headpainrelief.co.uk/?page_...

Probably a bit far for you to travel, but may be worth it. He's been brilliant, really explained my migraines - apparently a big part of my problem is that I don't breathe properly, but that won't be the same for everyone.

A friend's daughter who suffers terribly has had help from nationalmigrainecentre.org.uk

the only thing that's worked for her so far and where she felt understood. Botox didn't work for her.

Good luck, I do hope you find something that works, (and do please let us know if you do) migraine is so painful and debilitating.

[CJA2012]

These sound like Grand Mal. Have they looked into this as a possibility? Also ask about forms of epilepsy as that would be considered a 'permanent' health concern.

Hope this helps. Sadly not enough research is being done on migraine and the government doesn't seem to recognise it as a life-long illness even though it is.

The Migraine Trust has an employers advocacy toolkit on their website that you can download and give to your employer - that's what I did and it helped me out a little bit with their awareness.

Migraine is classed as a disability under the Equality Act 2010.

[sentinel]

Hi

I also suffer from hemplgic migraine and migraine with aura. I lose the feeling in my left side as you would in a stroke. When someone suffers from this condition you are also more susspetable to stroke and need to be checked, 100% you haven't had a mini stroke.

There has been articles about people having. Hemipligic migraine constantly for years at a time.

I'm not sure why your neuro won't say it's a permanent condition as yes it's variable, but it doesn't just disappear. I have suffered since I was 15. The have gotten progressive worse as I've got older, I'm now 37. I have managed to carry on working as mine mainly effect my left side, leg arm etc but they can effect both sides of my face and my left vision goes more than my right. I now know my signals so I won't drive at various times when I know it's coming on.

I have managed to successfully claim DLA / PIP which is the government benefit for disabilities as the bad days out way the good and I struggle with burning my self, had to get an automatic as I struggle to drive manual due to loss of feeling, on my bad days I can walk properly as my foot drags, I drop stuff etc. So they are definitely recognised as a disability.

I would get referred to a better neurologist.

I am on my second round of Botox. The Botox works for the pain. However the other symptoms are still present

[Marialiana in reply to sentinel]

Being referred for BOTTOX as last form of treatment, as nothing else has worked. Get 2 sessions free on NHS.

Also saw my GP last week and asked for blood test to rule out Hughes Syndrome -

Back at work 4 hours a day, doing a very basic non computer job, which I can take as many breaks as I want and my work are trying to be flexible (not) BOTTOX is Friday so only 4 days to wait - then fingers crossed I get relief or Not!!

thanks for your comments

[sentinel in reply to Marialiana]

Be prepared. After the botox (which I've just had my second blast) you can feel very unwell for a few weeks. I'm generally OK for a few hours and go to work directly after the injections, then it hits me. It's like flu with terrible nausea and sickness for me. I get extreme fatigue and ache for around 3 weeks and general feel unwell. Have lowered appetite, jaw ache etc. But it's worth it. Make sure your doctors supplies you buccastem anti sickness pills, they help!

Good luck, it effects every one differently so it could be a breeze. Take it easy and hope it works for you x

[Marialiana in reply to sentinel]

Had the Botox, had headaches ever since and one migraine! My forehead aches. One bit of nausea but otherwise no other side effects!! Had 31 injections, not pleasant, but time will tell.

[Marialiana]

Thanks :-///

[Mark--t]

I would suggest finding the trigger of your migraine ie what are you allergic to that's causing it and then cut it out of your diet. I found mine myself after a lot of years to be the chemical in chocolate.hope this helps

[angelb123]

i just don't understand, anyone who dosent have migraine can't know what its like its a nightmare not every one gets cured. its ruins your life. some doctors are heartless.