very nasty neuro please help me - Epilepsy Message Board

chis · 12-02-2008, 04:15 PM

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.

danabarb · 12-02-2008, 10:32 PM

Were you treated by a doctor who specializes in sleep apnea and by another dr. who specializes in seizures? If not, I would recommend it. I have both sleep apnea and seizures, so speak from experience.

From reading your letter, I don't feel your dr. gave a hoot about you. Try looking for a GOOD neuro and also a dr. who specializes in sleep apnea. After any testing has been done, let them get together with you and explain everything and if you don't understand something, tell them so and have them put it into words you can comprehend.

You can be awakened with a startle with sleep apnea.

Hope this is of some help.

Art_930 · 12-03-2008, 07:17 AM

I feel really bad for you - both that you have such restless nights and that you ran into a lousy neuro.

Are you anywhere near a Sleep Center? I would guess that they would be more geared to making your test comfortable so that you actually recreate what happens to you at home.

chis · 12-03-2008, 02:36 PM

Thank you for writing and your advice. On the report I read after I insisted on a copy and read it at home. It said 12 leg movements and 96 arousals in 26 minlutes of sleep. I am not a pesty person and after going through all this I just wanted to sit longer then 2 minutes in his office and handed meds which I don't even know why I'm taking since he said nothing. I asked if it could be night panic attacks and he said "well they don't usually happen in clusters". So he basically has no clue and got nasty when I asked further questions so I just left with the prescription. I really just wanted to be assured by him by explaining why it wouldn't be nocturnal seizures so I feel confident in his non diagnosis. Like I said, I find myself on the floor night after night. When I jolt up before it happens I can feel the feeling come on me from my stomach. I then wither on the bed trying to stop it. My legs get stiff and sometimes I do end up on the floor anyway. then I let out a big sigh and it's over. But 10 minutes later I'm awoken again doing the same thing. I am making an appointment with a new neuro and maybe can at least talk to him a little . Even 5 minutes talking to the doctor would help. I am so afraid to go to sleep at night. I lost my job last year and I don't know how I would ever go into work again even if I could find another job.

valeriedl · 12-03-2008, 06:54 PM

I wouldn't go back to that neuro. If there is another one in your area I would defently go to them.

I had the same problem with my neuro, and unfourtanly I only have one in my area. I then found out that she was a physician's asst. I actually only saw the neuro twice a year. Her and I didn't get along at all, when I was having sezs that were worse than the ones that I usually have she accused me of not taking my meds.

I told the real neuro (who is a very nice man by the way) that I would not see her any more. He had no problem with that, every time I have an appt I see him and if I need to come in at another time he will fit me into his schedule.