Hi everyone. Ive been ill for 7 years. Dx with M.E. but my O.T has always said some of my symptoms and the way I relapse doesnt relate to M.E. My first symptom was shaking on right side. The facial muscle spasms so bad i look like a ventrilaquist dummy. Pains everywhere in my body. Sharp shooting like hot glass running through me. Highly fatigued. Then 2 years of that i came home full of pain laid down and i felt this weird rush feeling from top of my head to my toes and felt very very odd. I trier to get up but couldnt walk properly. I left it for 4 days before i went to dr telling myself it was going to sort itself out. When i did go i then got the m.e dx from there. BUT from then on everytime i have "relapsed" i know when i am going to as I see more snd more flashing lights in my vision and i feel loads of energy and then bang i cant keep my eyes open, the pain gets really bad, my muscles tighten and spasm and when i come round i cant walk properly. It happens once or twice per month. Last time was 3 weeks ago and it was a really bad one. So i went to dr and she actually listened to me and im going for an eeg 2mo. What ive realised is thats for epilepsy and upon talking to a friend she said about epilepsy. So thats whats led me here and i would like to ask who have very kindly read my post,... do you guys experience anything like i have just explained? Many thanks Janey
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Hi Janey, welcome to CWE!
I think the kind of pain you describe is less common with epilepsy and more common with ME (myalgic encephalomyelitis, sometimes called chronic fatigue syndrome), but others may chime in with a different opinion. The flashing lights could be a kind of seizure-related aura, but they are also a symptom of migraine.
Your doc may have scheduled the EEG test to rule out epilepsy. However, EEG tests can also be used to evaluate the extent and nature of the brain deregulation that is associated with an ME diagnosis, so that is perhaps a more likely scenario. I recommend that you contact your doctor for an explanation of what she hopes the EEG will determine.
Best,
Nakamova
I think the kind of pain you describe is less common with epilepsy and more common with ME (myalgic encephalomyelitis, sometimes called chronic fatigue syndrome), but others may chime in with a different opinion. The flashing lights could be a kind of seizure-related aura, but they are also a symptom of migraine.
Your doc may have scheduled the EEG test to rule out epilepsy. However, EEG tests can also be used to evaluate the extent and nature of the brain deregulation that is associated with an ME diagnosis, so that is perhaps a more likely scenario. I recommend that you contact your doctor for an explanation of what she hopes the EEG will determine.
Best,
Nakamova
Thank you for your reply. Regarding the flashing lights I see them everyday but they more much more and more brighter just before a relapse. Yes im sure the pain is m.e related. But these relapses as i have alwaye called them are very scary. I hope its not epliepsy...
Freda
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Sorry to hear this happened again but if it's going to happen at least it did so at the right time while you were being monitored - hope that makes sense.
My daughter has recently been diagnosed with epilepsy and to rule out heart problems at one point had to wear a heart monitor for 72 hours and on the third day she actually had her second tonic clonic (grand mal). The consultant said how informative it was with the tracing recorded and could rule out heart problems as during her seizure her heart responded in a normal rhythm.
Hopefully you EEG will tell them a whole lot more about the cause of these episodes now that they have a tracing during one.
My daughter has recently been diagnosed with epilepsy and to rule out heart problems at one point had to wear a heart monitor for 72 hours and on the third day she actually had her second tonic clonic (grand mal). The consultant said how informative it was with the tracing recorded and could rule out heart problems as during her seizure her heart responded in a normal rhythm.
Hopefully you EEG will tell them a whole lot more about the cause of these episodes now that they have a tracing during one.