Help, misdiagnosis, hemiplegic migraines and spina bifida

Hi,

Where to begin? I am a 54 year old male who was born with severe spina bifida. I was one of the first babies in the UK to have what is now the normal operation to basically save my life.

As a teenager at College I suffered almost daily classic migraines with severe headaches, auras and sensitivity to light. The they basically went away, and I had maybe one a month or even less.

About 6 years ago I started to experience severe night time spasms just as I was about to go to sleep. I began to have serious sleep deprivation. This was diagnosed a epilepsy and I was given Chlornazapam by my local hospital in Manchester. These drugs had little or no effect and my Consultant simply ramped up the dose.

After 2 years plus with no improvement I became so annoyed at the lack of progress I asked for a second opinion. I was referred to the Walton Centre and their Clinical Director took on my case. He asked how soon my MRI I had been diagnosed with epilepsy? I explained I had not had an MRI for this set of symptoms. He expressed some surprise at my being diagnosed without having had an MRI. He arranged for me to have an MRI and said I didn't have epilepsy and he believed my spasms and other symptoms:

- Numbness on my left side
- Partial paralysis
- Inability to speak
- Unable to understand simple questions
- Coordination problems
- Severe auras
- No headaches

were as a result of hemiplegic migraines and may well be linked to my age and level of spina bifida.

I then had over a year of coming off Chlornazepam which was very difficult as its an addictive drug. This meant I was unable to have the correct dose of drugs I needed. I was relatively stable until recently.

As someone who has been disabled all their life I have to say I was surprised at the debilitating and unpredictable nature of these attacks.

I should add I use a wheelchair to get around and a PowerChair in work. These additional symptoms have significantly added to my ability to attend work in line with the Attendance Policy. The problem my Line Managers have had is they find it hard to believe the symptoms can be so severe and when they are over I am to all intents and purposes 'fine'.

I am experiencing an increase in the symptoms and really want to avoid relying on 'more drugs'. I am looking to see if there is a national centre of excellence i can attend which might also be able to at least understand how my spina bifida could be linked to the hemiplegic migraines.

I was thinking about setting up a Blog to discuss this; glad I found this one.

Do you ever have guest authors for the Blog? If so I am interested in writing a post or short series to help others who spent as long as I did trying to get help.

Glad I found this place.

There is no clear defined link between spina bifida and HM. One of the reasons for this is that there are so many different symptoms and influencing factors that it's difficult to directly correlate one to the other.

That said, it can be argued it's just as difficult to disprove!

Sorry to hear you're having such bad problems

As someone who has had migraines for most of my life (they started in my early teen s, I'm now 63), I can understand your frustration. I'm assuming you're in the UK, so at least you have better facilities for the treatment and diagnosis of migraines than we do in NZ. The best diagnosis I have been given is "atypical", which in NZ seems to mean it's neither a classic or common migraine. The symptoms you describe are very similar to what I often get, although I am often unable to recall the event, and have to rely on others to describe what happened.

I guess a problem experienced by most migraineurs is that we all look quite healthy when we're not experiencing a migraine. I know from experience that others (including bosses) have no understanding how disabling a migraine can be, while at other times we are absolutely fine. I think this is an area where more education is definitely required.

Welcome Andrew and I am sorry to read of such a frustration - the symptoms you list do indeed all link to HM - (I also have HM) And totally understand the attacks and the lack of support an understanding from people.......... re your job - here is a link to the HM basics - I have found this helps those who so not understand to at least get some information... (Others have used this for work and it has helped) https://migrainetalk.forumotion.co.uk/t955-hemiplegic-migraine-the-basics?highlight=the+basics

There are some great doctors in the UK now - and a big genetic reserach project is currently underway in London - I am not sure how well you travel - but if you ever get to the end of your tether - there is a fab team at the National Hospital in London who have a massive HM clinic....

As to the blog - I am more than welcome to have guest writer - I have taken a break over the hoildays to spend some time with my kids - but will be writing again in the coming weeks - so if you wish to write something you can PM me and I will post it for you xx