New and a bit worried

[Suet39]

Hello I am new to group and need some advice.

I have have had migraine with aura since 1989- symptoms are pretty textbook but generally failed to respond to any medication except imigrain but I had severe allergic reaction to this. However last week, had new type of headache for me- with loss of speech. Normal migraines are focused on front of right side with alot of pain in back of right eye and upper jaw. This headache is much futher back in skill. Spent a scary couple of days in hospital but CT scan was clear which is great and now waiting for MRI as double check. But 6 days later still have headache and no speech. I have had some of the usual migraine symptoms now- visual disturbances, nausea etc.

I have also had for over 7 years now muscle spasms which cause my neck to pull over to right side, my right hand to clench and not open. Both feet go into spasm and my eyelids close and will not open.

I have seen numerous neurologist who seem to send me back and forward to each other because they cannot agree- ine says dystonia - but then dystonia specialist says it is not- then back and forward again- always with a 9-12 month wait between appointments. I have been diagnosed with functional neurological disorder- which was then changes to parasoxyaml dystonia back to functional neurological disorder back to unknown subtype dystonia back to we really do not have a clue

Could all these symptoms be migraine related? I get spasms with migraines but also get them when I do not have migraines?? I am very confused.

Is this migraine which has lasted 6 days a 'status migrainous'?

I am not sure what to do next? Work are being a bit strange, they declared me disabled earlier this year because of the impact that my condition has had on my job-i agreed because I was at the point where they were going to take action because of the amount of time I had off sick. They have been supportive and given me extra support since labelled 'disabled'. I am a teacher and obviously with no speech I cannot do my job and I am scared that this might be the final straw as far as my school goes.

I would be grateful to hear from anyone who has had similar symptoms or if you have any ideas that would be great.

[Pippwin]

Dear Sue,

It sounds like you are having an awful time. It's good you will get an mri scan. The combination of intractable symptoms which are unusual and pressure of work can make you feel so miserable and alone. I had a similar phase with my migraine but with different symptoms and had to be off work for over a year...partly because it took so long to get neurology appointment. It felt very frightening actually and i got fed up with people telling me it was all because of stress! Until you have the mri you won't know enough to make plans so try to distract yourself and do some relaxation in the meantime, maybe yoga or mindfulness for calming you in this anxious time. It just helps to take a bit of control in a situation where you feel so out of control!

I hope your speech returns soon. Please let us know how you get on with the mri too. You are not alone.

Sympathy and best wishes

Pippa

[Suet39 in reply to Pippwin]

Thank you for your reply- did they get the bottom of your symptoms when you finally saw a neurologist?

I still have no speech and awful headache as well it has been over 11 days since the start of my headache. MRI is another 2 weeks away and neurology appointment is another 3 weeks away. GP could not make appt to see me and just signed me off for another 2 weeks. He has just put '?migraine' on my sick note. I know what you mean about 'stress' get a bit sick of hearing it. I have recently taken up yoga but cannot make sessions at the moment. I might see if teacher can do a 1-2-1 lesson to see if it will help, that could be more personalised to the limits on my mobility

Thank you for your best wishes

I hope that you have found some relief