RLS and seizures and bouts of being unable to move

[saegomez]

I need some help understanding what is wrong with me.  I have had this going on for 12 years.  I have RLS that lead to writhing so severe it last for up to 5 hours.  I convulse and will hit myself and spit and yell and go stiff with full body contractions.  It is absolutely horrible.  I have no control over what my body does at these times and have difficulty walking, talking, or moving on purpose.  Many times I cannot talk and last night a new symptom- I was unable to move- at all for periods.  One period lasted for 15 minutes.  Others were shorter or included some of my body- like, just my legs or I could move my head and nothing else.  Many times I could only move my eyes and breath and it scared me.  I felt the RLS through out my body- it is a yucky horrid feeling.  I would concentrate very hard on moving and when I would finally succeed it would end up making me convulse again.  I have often thought the word seizures to describe what happens to me.  I am completely alert and can hear and see just fine.  Yes, know everyone is going to say to go to the doctor-- I have and we have no money left and drugs do bad things to me.  I just want to know if there is another me out there or if someone could send me in the right direction to figure out what is going on.  It happens when I get overly tired the most. Thanks

[saegomez]

I have been researching this since my post.  I actually was diagnosed with Juvinile Myoclonic Epilepsy 11 years ago.  The internet wasn't what is today- that is all I can say.  I was put on meds, but got pregnant and went off of them.  The seizures have gotten worse, but are not life threatening so we have not put me on meds.  I bet you have the same thing.  I was thrown off because the doctor said most get it when they are young- I was 21.  He also said most get this upon waking- I get them at night.  It feels so much like RLS- I thought that was what it must be.  I have both. The RLS always seems to hang around these episodes. I have nearly all the symptoms for this sort of epilepsy and probably have another kind as well since it affects my speech and eyes.  Your family needs to get on board with you- let them know you are in there and how you felt the last time, so they know what to do.  My husband holds me.  Eventually there will be a break where I can say something.  It will pass- if you are like me, on it's own.  The main concern for me is -can I breath and am I blacking out- so far I haven't so I do not go to the hospital.  I would be completely broke if I did.  Can you feel this stuff coming- I can.  It is called an aura. And when it last so long is called acute clusters.  You should research it.  I feel so much better knowing the first doctor had it right all along!

[Lez56th]

I have the same happen to me I think about 3xs maybe more and the drs are telling me its anxiety I know  its more than that. I know an EEG may tell me something. I think maybe a start of some kind of neurological disease or  disordor.My boddy cramps up and my hands curl and get stuck everything goes numb. toung hand and feet almost imposible to walk on and I can drop to the floor like nothing like everything gives out. I am completely out of control of my own body. I know whats going on but can not respond to well. 2 years ago my family called the ambulance all i could say was the word dieing when this happend and I wound up in a mental institution for say that because my family and the hospital said i wanted to die and said I was on drug.And I was the ones the doctors gave me so these thing wouldn't happen to me I am still on them today.So when it happend this past friday I faught as much as I could to not go to the hospital. Mind you I wonder if its the medication sometime but now I bet I have some kind of brain damage or stroke. I hope you don't thing I am crazy but I really needed to share. I am no hypocodriact or anything. And wondering if this makes any sence to anyone.