New to forum - your thoughts on my condition?

by catlee Fri Apr 11, 2014 1:45 pm

Hi everyone, great to have found this website and for me to discover that I'm not alone.

I have been suffering from what I can only describe as strange symptoms for almost 9 years now. I have seen 6 neurologists and two of them suggested migraine as a reason for my symptoms.

It started with me waking up one morning and feeling off balance and 'dizzy' - not rotational dizziness, more a semi-drunk feeling. I've had this every day for 9 years, and also have the following:

*feeling as though my left leg is not 'attached' to my body, it just feels a bit odd when I walk (very difficult to describe)
*feels like body slants to the left and the sensation that it 'drops' at times.

I had my first child in 2012, and a couple of months afterwards, my 'dizziness' symptoms increased dramatically and I also developed the following symptoms:

* a very scary feeling that the whole of my left side was not 'attached' to my body i.e. if I put my left arm out to shut the car door, it's like it wasn't there. It was so weird and lasted roughly 3 months.

* speech disturbances - it's a feeling as though my tongue isn't moving properly and my speech is slowed. However others can't observe it. It happened once, then didn't happen for 6 months, and now it happens every couple of months or so. I thought I could see a pattern with my speech issue and the beginning of my menstrual period, but I'm not so sure anymore.

I can only remember ever having one really bad headache in my life, which makes me question the migraine diagnosis.

My mother suffers migraine and on one occasion her left side paralysed for a number of minutes. They thought she had a stroke - but then put it down to migraine.

I was wondering if anyone has similar symptoms to mine and if so, what, if any, treatments have worked.

Thank you

by **Sarah** Fri Apr 11, 2014 11:01 pm

Hi and welcome to the forum. We're pretty quiet here these days, unfortunately. Sad

Have you looked into hemiplegic migraine at all? Is that what the neurologists diagnosed you with?

I'm certainly no expert on hemiplegic migraine, so wouldn't want to advise on that (it's not what I suffer with). But the drunk feeling, and slurring of speech is familiar to me, as a sufferer of migraine with aura.

Have you looked into low dose aspirin at all? It's just that my mum, who suffered from a mini stroke this time last year, was prescribed it, and since then her migraines have really improved as a result too.

by **pīwakawaka** Sun Apr 13, 2014 11:44 pm

Hi catlee. I don't know if the symptoms you describe are or are not migraine related, but it wouldn't surprise me if they were. As you may notice in these forums, the symptoms are many and varied.

I've never felt a specific part of my body being separate, but I have experienced the feeling of me and my body not being connected. A bit like being an observer inside someone's body, but without any direct control of it. To other people it looks very much like a stroke, as evidenced by the number of times I've been rushed to hospital.

One of my most irritating (and painful) symptoms is forgetting that I have a right side. It's painful because I tend to walk into things like the right side of a door opening or other object on my right. Slamming into a solid object with my right shoulder or right foot is a painful reminder that a migraine is in progress. And yes, sometimes the migraine headaches are quite mild or even absent.

I don't know what textbooks the medical profession use, but I'm sure the descriptions of the various types of migraines are rather restrictive in the range of symptoms. I've had the diagnosis of "atypical migraines" because my symptoms don't match any textbook diagnosis.

All I can suggest is to keep a careful record of all your symptoms in as much detail as possible, and provide them to your doctor or neurologist next time you see them. Often it's a case of being persistent to get them to take you seriously. Best of luck Smile

by catlee Mon Apr 14, 2014 12:50 pm

Thanks Sarah and Piwakawaka for your responses.

I haven't been diagnosed with hemiplegic migraine, but it's something that my mum and I are going to look into. Apparently there is genetic testing that can see whether you are predisposed to hemiplegic migraine and based on the findings, treatments that can be tailored to help minimise the symptoms.

One neurologist did say to me that migraine can cause the most bizarre symptoms, as we all know.

If I do go ahead with the genetic testing I'll give you an update.

Thanks again

by Laura Wed Apr 30, 2014 2:50 am

Catlee - check out this list of symptoms. The list is quite broad. https://migrainetalk.forumotion.co.uk/t250-types-of-aura

Also, you might consider getting an opinion from a migraine or headache specialist, even though you don't get the headaches. People are known to have migraine without the headache. I don't know where you live, but there are lists of these specialists in the US. http://www.migraineresearchfoundation.org/diplomates.html
http://www.ucns.org/globals/axon/assets/10300.pdf

by catlee Wed Apr 30, 2014 12:46 pm

Thanks Laura. I'm in Sydney, Australia so will see if I can find a specialist here.

by **pīwakawaka** Sun May 11, 2014 10:36 am

I hope you have better luck in Australia than I've had here in NZ. I haven't been able to find any migraine specialist at all. Neurologists of any sort seem to be rather thin in the ground here. I've been removed from waiting lists to see one, simply because the local health district lost every one of their neurologists. There are supposed to be a minimum of three, but they had none for over six months!. They currently have two.

by sjcole Mon Aug 11, 2014 6:02 pm

Hi everyone,
My name is sarah, I'm 34 years old.
In may this year I was told I had a stroke pretty awful as I kept thinking I'm far to young for this to happen. I lost the use of my right arm and right eye.
After many tests it was discovered last week that in fact this is not a stroke it's hemiplegic migraines. I have never suffered with headaches previously so can't really understand why now !.
I'm finding things really hard, my husband had to take 2 months off work unpaid leaving us with a lot of bills to catch up on. He's now back at work but I'm finding things really hard at home with little ones on my own. The tendents in my arm have been damaged from holding it in a position of support for a long time. I also still don't have the vision fully back in my eye, it feels like I have a camera over it trying to zoom in and out ! I feel constantly tired, in pain, and generally fed up.
The nurologist diagnosed my condition and discharged me from her care all at the same time. I'm now wondering what I'm suppose to do . I have my medication to take but that's not doing much really . I'm looking for advice on how people are managing at home with children, and how long this should really last. My husband feels all of this is making me depressed and he doesn't know what to do either.
Is there anything I can do to help myself ?
Thanks sarah

by catlee Mon Sep 08, 2014 12:35 pm

Hi Sarah

Sorry to hear about your situation. I know that some people can suffer constantly with migraine symptoms and I read that the founder of this site suffered for a long time with no breaks in between.

Can you get a referral to a new (more sympathetic) neurologist who will be able to monitor your progress and offer alternatives if your current medication is not providing adequate relief?

Hope you get the relief you need.

Thanks
Catherine