New to the Forum - my story

[shellyshoos]

I have joined this forum, although have never been in a forum before, after reading Tracey's article in the Daily Mail. I do not know whether I have HM but thought if I told you my story someone may be able to help me.
I have always suffered from migraine since a teenager with visual disturbances, numbness down my right side, slurred speech and a headache, although never extruiating. Three years ago I woke to find I could not walk or talk proberly. We presumed I was having a migraine attack. After 24 hours it did not change and my husband took me to the doctors. He agreed and said to come back when the migraine had gone and we would look at preventative treatment. After 5 days, I still could not walk, talk clearly etc and so my doctor told me to go straight to hospital with a suspected stroke.

After a week in hospital without any real treatment, except for ruling out stroke, and monitoring me I was sent home. By this time I could walk for about 5 mins before everything seized up again. Since then I have been to various neurologists and have been tested for MS, with lumbar puncture and various other tests. This has been ruled out and I have been told I have a nerve problem or migraines. At the moment I have about 5 days in between attacks. When the attacks come on, I cannot walk, or walk with a limp, unable to pick up my feet proberly, slurred speech, sometimes unable to use my hands, memory problems, extreme fatigue and spend about 2 days a week in bed unable to get up. With three young children, this causes some problems at home. I am not on any medication apart from aspirin as my doctor is worried that this may turn into a stroke eventually. I work when I can. My employers are very understanding and work one or two days a week when I feel well.

I do see a physio which does sometimes help and have been having the Bowen technique.

I wondered whether anyone on the forum also has the same problems? When people see me walking with a stick they ask me what is wrong with me. I am unable to answer them, apart from saying this is just me!

Any advice or help would be greatly appreciated.

[Juliem]

Hi Shellyshoos,
I have been diagnosed as having Hemeplegic migraines and have very similar symptoms to yourself. My speech is very slow/ slurred (sounds like im either drunk or have had a stroke and also walk with a stick. I have times inbetwen where I return to "normal" but generally my speech and unbalanced walking is with me more often than not. I also get very tired so am limited with what I can do. My story is the business owner who cannot walk or talk properly. I am still having trials with medication but for me to find out a diagnosis what a great leap forward. I was also told it may be a stroke and M.S. stay positive Julie m

[Tee]

Firstly welcome

I am sorry to read that you are suffering with this and not getting the help you need..... do not give up... it took me a few years and 3 neurologist to get the correct diagnosis.

What you describe, could be HM and certainly should be something you should get checked out - there are a number of different types of migraine - you do not say where you are - but you should consider getting a referral to a 'headache' neurologist - HM can present without a headache, but these are the doctors you need to speak to. If you let us know where you are - maybe someone can recommend someone....?

However, here is a list of NHS hospital with headache departments:

https://migrainetalk.forumotion.co.uk/t95-neurological-departments-in-nhs-hospitals

and this is a list of other headache clinics:

https://migrainetalk.forumotion.co.uk/t96-migraine-clinics-in-the-uk

Keeping a migraine diary would be useful too - its a bit daunting at first - but becomes easier as time goes on - here are some examples

https://migrainetalk.forumotion.co.uk/t223-migraine-diaries

Most just record their pain level - but with HM I think its important to record the aura side of things - you could either do it via a tick list or a debilitation score - ie If I just have the visual aura I can cope, but once the weakness and numbness hits I go up a level and once the speak goes again up a level and when the brain goes - I am out of it lol - again its takes time - but it can give you a good record to look back on and it can give clues to trigger and how effective meds are. The doctors also like to see these.

Once you have seen the neurologist and got the diagnosis you can work out a management plan..... I am now a strong believer that this is not a quick thing - and also involves many changes - popping a pill and making it go away - whilst can happen is rare....... life changes need to happen too.

This first step to this is trying to identify your triggers, (everyone is different) and then try to avoid them - the old theory that food is the only trigger is long gone - have a look at this list - it may spark a few possibilities

https://migrainetalk.forumotion.co.uk/t330-types-of-triggers

The other thing you may find of interest - is this. You already mention a lot of aura symptoms - but you maybe surprised at how many there can be..

https://migrainetalk.forumotion.co.uk/t250-types-of-aura

Sorry if I have overloaded you with info - take your time - and please do come back with any questions - even if they seem silly - we will no doubt have been there too

Hugs

Tee

[shellyshoos]

Thank you Tee and Julie M for replying. To know that other people have experienced similiar things is a good feeling and has made me a bit tearful! I live near Cambridge and I am seeing my doctor tomorrow so I am going to ask for a referral to Addenbrookes. Fingers crossed.

[Tee]

Brilliant - let hope this is the first step to getting your live back Do let us know how you get on...

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