Relieved to find this site

2014-01-26   03:36:04

Hi everyone, I'm Ruth and have suffered with migraine for roughly 20 years.  My granny, mum and aunt also began having migraines at about the same age as I did.  They pretty much 'grew out of them' over the next 20 years or so, though my mum's have recently returned and she is now 63.  We all had visual impairment such as flashing lights in one eye, before the migraine progressed to a full blown pounding headache, this was always on the same side of the head as the affected eye.  None of seemed to suffer from any other symptoms and if we took medication such as migraleve (always prescribed by our gp's), the migraine would gradually pass, though sleeping for a long length of time definitely helped.

My uncle and cousin also have epilepsy.  I am aware of the connection between migraine and epilepsy.  All the family members I have mentioned are from my granny's line of our family.  I have bipolar disorder type 2 also.

Over the last few years, my migraine symptoms have increased in severity; they last much longer, I find I may get nauseous, confusion, sudden memory blanks, bursts of energy, lethargy, clumsiness, a feeling that I'm becoming smaller yet my surroundings seem to get much bigger, feelings as if 'I'm not really there' , co-ordination problems, forgetfulness, pins and needles in 1 side of my head, arm, neck, drooping on the same side of my face, I lose the ability to spell correctly or to even make sense of any words, either read or spoken.  I may get all of the above, in differing orders each time, or some of them and the severity also differs with each attack.

For the past few weeks I've been very under the weather, I had a viral infection and couldn't get rid of extreme lethargy and slept almost non stop, not good as a single mum with young children.  My eldest son still living at home works part time and attends college, so is not at home most of the week.  Our nearest family live over 30 miles away.  I went to my GP a fortnight ago as I woke with severe jaw, ear and throat pain and an unusual pain in my head, all on my right side.  I was diagnosed with the viral infection and told to take pain relief and rest, but to return in 2 weeks time if my symptoms hadn't gone.

Though the symptoms felt they were lessening over the week, I began experiencing various symptoms of what I knew to be aura.  I couldn't seem to shift them and made an appointment to see my GP for the following Monday.  However, the weekend came and past, Monday arrived and I'd felt right as rain, so cancelled my appointment. I had a nice stress-free day and my 6 & 12 year old sons and I had supper at 6pm then they went to friends houses to play a while.  At 7.30pm, my 19 year old son came in from college to find me lying on the settee unable to move, speak or communicate to him in any way,tears were slowly running down my cheeks. About 5 minutes before my son came home, I felt as if I 'wasn't there' , felt extremely hot and began sweating profusely, then shaky and freezing cold, everything on the right hand side of my body felt as if I was having very tight, very painful, regular and quick grabbing kind of spasms.

Myself, my son and the paramedics were thinking stroke was the most likely answer, though there were other possibilities too.  In a nutshell, I was taken immediately to the nearest city hospital, 35 miles away, where I very slowly began to speak the occasional slurred word and slighly move my very heavy, painful, hot right hand side again.

I spent the next 4 days in hospital, had a CT scan which came back clear and had no infection present. I was sent home with the diagnosis of migraine with aura, a prescription for Propranolol (40mg twice a day) and told I need not see a neurologist as they would do the same.  On reading my discharge letter at home, it states the reason I was in hospital was 'right sided weakness and headache' - I had no headache whatsoever and kept telling that to every member of medical staff who saw me.

I have been home for 2 days now and feel exhausted, still weak and heavy down my right hand side, as well as having the occasional quick flash of a line of lights pass my right eye.  I'm planning on seeing my GP asap, as I feel I need more information and support, especially as I am medications for my bipolar which are Venlafaxine and Lamotrogine.  I personally feel I am displaying signs and symptoms of hemiplegic migraine, having now read up on various migraine types, though I'm also concerned that my meds for my bipolar may be causing or exacerbating my migraines.

I came across this site and felt I should become a member, as I like what I see, well done to all concerned.

Thanks for reading!

Regards

Ruth

Hi and welcome, Ruth. We are a very quiet forum these days, unfortunately. There are a few of us that still check in though, and there is also lots of useful information from past posts, as you've found.

Sorry to hear about your recent experiences -sounds awful. I have no experience of hemiplegic migraine myself (thankfully - I get enough of the 'common' sort! ) but, if stroke was ruled out, I can't help but think that it does sound like it fits with your experience. I would definitely try to push for a referral. Mainly because your migraines have obviously changed.

Best of luck with it all, and let us know how you get on. x

Hi Ruth,

I can empathise with your situation. Your symptoms are similar to mine mine. Fortunately I seldom have nausea. I do get a weakness in my right side, and at times forget that it's there (crashing into objects on my right side, using my left hand when my right would be better etc), but it's never been immobilised.

The other symptoms (like confusion, sudden memory blanks, bursts of energy, lethargy, clumsiness, feelings as if 'I'm not really there' , co-ordination problems, forgetfulness, drooping on the right side of my face, loosing the ability to spell correctly or to even make sense of any words, either read or spoken) I'm very familiar with. I don't get pins and needles, but my face can become numb, starting with my upper lip and spreading to cover from my forehead to chin. I have a weird visual aura where small objects seem to shimmer in and out of view. The most scary is symptom is that very occasionally, I loose all sense of identity and enter some kind of fugue state for a few hours.

Like you, I've been rushed to hospital (on numerous occasions) when paramedics believed I was having a stroke. And like you the description on the discharge papers does not bare much relationship to my recollection of the event. I do know I'm often frustrated by my inability to describe what I am experiencing at such times.

I suspect I too have hemiplegic migraine, but so far the best the medical profession can come up with is "atypical migraine".

I know living with a severe form of migraine can be frustrating - I've lived with migraines since my early teens, and am now in my mid sixties. I'm still learning how to manage the migraines even after all this time as various symptoms wax and wane.

I can only repeat what Sarah has recommended and push for a referral to see a specialist. Any time there's a change in the nature of the migraines, it's wise to ensure there is not something else causing the change. At least you're in a country better served with migraine specialists than we are here in NZ.

All the best, and please do keep in touch.