nasty bad neuro help please

[trisha]

I have been trying to get a diagnosis for a very severe sleep problem I have had for years. I am 49 and finally went to a neurologist . Was always told by GP's that it was nerves. I wanted to explain to the sleep specialist/neuro what exactly I do when falling asleep but he gave me a fast touch your nose with your finger exam and didn't really care much what my symptoms were. He said lets get a eeg and then a sleep study and we'll find out. Well I had a very young kid for the tech who said he really wanted to be a cop do the test. It was freezing in the room but he said must keep it cold so I don't sweat and electrodes fall off. In the short time I did sleep he said he has on camera my arousals. He said "maybe you have sleep walking".

Went to neuro for results. He said no sleep apnea and heres some Klonopin and cymbalta. No explaination at all. He then said you have some type of parasomnyn. I said I know I do not sleepwalk so Dr. maybe nocturnal panic attacks. He said no because you have it all night. I had to pull words out of him. I said is it possible that it is nocturnal seizures. he said no because your awake eeg was normal and seizures last much longer . So I walked out to the car and started to cry. I did not take the klonopin because I do not want to take a medication when I don't even know what I'm taking it for. I called him back 2 weeks later because I was getting no sleep. He was nasty on the phone and said I don't know what you have but I told you to take the klonopin. You do not have sleep apnea and I cannot make something up. I thought the whole idea is to at least try to tell me why I'm taking the klonopin.

I fall asleep okay and then within about 20 minutes I jolt up, feel it coming on, grasp all the covers tight so I don't fly out of bed and everything starts tensing in my muscles. Then I let out a big exhale and it's over till another couple of minutes and it starts again. Over and over all night long. I don't know if Im tensing my legs and arms on purpose so I don't end up on the floor or it's involuntary. I also sometimes kick the furniture. I am aware of whats going on. the feeling usually starts in my stomachlike a tension and then it all comes on me.

I looked up nocturnal panic attacks and it mostly said it happens once a night. I have this over and over and over all night long. Should I see another neuro. It seems that the sleep study was only geared to check sleep apnea and he never even considered seizures. Thank you all for any advice.
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[becky808]

I have nocturnal seizures. When I have one I am wiped out for days. I feel like I got hit by a train and cannot remember anything that happened for about a week prior. I have a very hard time waking up after a seizure and cannot understand what's going on around me for several hours. I also need a lot of sleep for days afterwards.

I also had nighttime anxiety after my daughter was born for about 2 years. Like you I would jolt awake almost like I was scared awake. My heart would race and I'd lay awake for hours trying to fall back to sleep. (I have wondered if I have some sort of sleep problem since I had both nocturnal seizures and nighttime anxiety.)

My guess based on your description of your symptoms is nighttime anxiety or panic attacks. You should try the klonopin. If you can get a good night sleep you'll probably feel really good and less likely to have problems the next night.
Do you snore?

I am seeing an expert in nocturnal seizures right now. He is in MN if you're interested in a referral.

Another thing I should probably let you know is many epilepsy medications are used for both symptoms of epilepsy and anxiety, psychotic disorders or bipolar disorder. They kind of work the same way to settle your brain and get things working properly. I'd give the medication a chance if you're willing. The neurologist is probably trying to treat your symptoms with medications that commonly work for those types of symptoms. It sounds like he has a terrible bedside manner though and didn't explain things well at all. You might want to find another Dr that explains things better and makes you feel like he's taking your problem seriously.
  

[trisha]

Thank you Becky for writing and your advice.  My husband gave me a xanax and since I'm not used to taking this I thought it would work.  I was doing the same thing all night.  I took it right when I was going to bed.  Yes, the neuro is incommunicato. I'm not a pesty patient.  I just wanted him to at least give what he thought it was.  Just a little explaination before handing me this med.  I went to all of this with the sleep study only to sit in his office for 2 seconds and for him to say that it does not sound like panic attacks at night because I have it all night.  My sleep study showed 96 arousals in 27 minutes of sleep.  That's about it and also what positions I slept in all night.  Like I said. If I don't awaken I find myself on the floor and then after a few seconds I get back in bed only to find myslef on the floor again.  There are times when I jolt up and feel it coming on.  I grasp the covers tight and feel it rise from my stomach a feeling and everything stiffens. Lasts a minute or two and I let out a big sigh when itj's over.  

[JKJ]

Hi-
You describe something similar to what my son has--Frontal Lobe Epilepsy--he only had his seizures in his sleep--and they NEVER showed up on an EEG.  He had a sleep study and they filmed them, he had several overnight EEG studies where they have his multiple seizures during the night on film;but a perfectly normal EEG.  His neuro doc said this is rare; but it does occur.  You need to find a new neuro doc.  

My son is now seizure-free thanks to finally finding the right med to control his seizures.  At one point he was having 15-20 seizures a night.

Take good care,

[JKJ]

Hi-
You describe something similar to what my son has--Frontal Lobe Epilepsy--he only had his seizures in his sleep--and they NEVER showed up on an EEG.  He had a sleep study and they filmed them, he had several overnight EEG studies where they have his multiple seizures during the night on film;but a perfectly normal EEG.  His neuro doc said this is rare; but it does occur.  You need to find a new neuro doc.  

My son is now seizure-free thanks to finally finding the right med to control his seizures.  At one point he was having 15-20 seizures a night.

Take good care,

[JKJ]

Hi-
You describe something similar to what my son has--Frontal Lobe Epilepsy--he only had his seizures in his sleep--and they NEVER showed up on an EEG.  He had a sleep study and they filmed them, he had several overnight EEG studies where they have his multiple seizures during the night on film;but a perfectly normal EEG.  His neuro doc said this is rare; but it does occur.  You need to find a new neuro doc.  

My son is now seizure-free thanks to finally finding the right med to control his seizures.  At one point he was having 15-20 seizures a night.

Take good care,

[JKJ]

Hi-
You describe something similar to what my son has--Frontal Lobe Epilepsy--he only had his seizures in his sleep--and they NEVER showed up on an EEG.  He had a sleep study and they filmed them, he had several overnight EEG studies where they have his multiple seizures during the night on film;but a perfectly normal EEG.  His neuro doc said this is rare; but it does occur.  You need to find a new neuro doc.  

My son is now seizure-free thanks to finally finding the right med to control his seizures.  At one point he was having 15-20 seizures a night.

Take good care,

[JKJ]

If someone knows how to get rid of my multiple posts....please do!  My computer had the hiccups!!!!
Thanks!!