Noone else has what I have please help

[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.
__________________

[trisha]

The neuro said no sleep apnea. After I got home and read report I called back the next day and asked why he thinks it's not sleep apnea. He said the test did not show it.  He then said "look, I can't make things up that you don't have." I said I understand this but would just like to know what you THINK I might suffer from that is causing these all night arousals . Again he said some type of parasomyn and just take the medication.  I dared ask another question because I could tell he was aggravated by me even asking the one queston. I asked if nocturnal panic attacks could happen this many times a night. He said he has never seen that many arousals with night panic attacks. So I thanked him (for what I don't know) and he said take the klonopin and if I would like he can give me an at home eeg.  You know you're putting your life in the hands of these doctors at your most vulnerable time and it feels horrible to made to feel like you are an annoyance when you questions being thrown meds that could make things worse or not even knowing what you're taking them for in the first place.

[TheCFiles]

Sounds pretty comprehensive.  Maybe you just need a different Neurologist to take the sleep study results to.

29 awakenings per hour sounds like a lot--guess that would be sleep apnea?  I hope he explained at least that much.

Did he tell you to wear a CPAP mask?

[trisha]

My sleep study: Patient slept for 201.5 minutes out of 466 minutes in bed representing a severely reduced sleep efficiency of 43.2%. (It was very cold and I could not get comfortable lying on back to fall asleep) (My problem is not falling asleep at home, it's staying asleep because of the jolts and "espisodes" everytime 15 minutes.)
Sleep architecture showed a severely prlonged sleep latency of 81.5 minutes and a prolonged REM sleep latency of 300 minutes with a total of 11.9% REM sleep being noted.  There was a mildy reduced amount of REM sleep.  Sleep disordered breathing was monitored & revealed 3 apneas/hypopneas for an overall index .9 events per hour of sleep.  The patient spent 99.8% of the evening with saturations greater than 89%.  the patient had 96 arousals for an average of 28.6 arousals per hour of sleep.  EKG monitored showed sinus rhythm.
Periodic leg movements were monitored throughtout the night.  There were 11 leg movements noted for an overall index of 3.3 PLM's per hour of sleep.
Thank you all for your help.

[TheCFiles]

That Doctor sounds awful!

Would definitely get a second diagnosis.  A good Doctor encourages questions, and it's your right as a paying customer.

A proper sleep study would probably be a good idea--try through a local University affiliated Medical Center or School of Medicine.

Or even a Psychiatrist who specialized in sleep disorders, there are research Psychs who do that.

Good luck!  Someone should be able to diagnose you properly and give you a deserved explanation.  Maybe the Klonipin was because he thought you were having anxiety attacks or generalized anxiety, but he should have explained that to you.

[KatEyes]

Ok, so you're saying in the whole study they recorded only 26 minutes of sleep? How many of the 12 leg movements caused arousal? What were the other arousals defined as - spontaneous?

If that 26 minutes is indeed all the sleep time you had during the study, it was not enough to be diagnostic of anything - maybe suggestive of a limb movement problem. It's pretty much standard procedure to order a ferritin level on patients with periodic limb movements. Did your doc mention getting a ferritin level? Did they mention that the test was not diagnostic due to not enough sleep time? What stages of sleep did you reach and what percentages of your sleep time was in those stages? It does not mean you do not have sleep apnea either, it just means you didn't sleep enough to tell whether you do or not. Please verify that  26 minute time if you don't mind. Also, if you were to have Periodic Limb Movement Disorder and Obstructive Sleep Apnea, it can be hard to pick up one or the other if the strongest one is keeping you awake too much to get to see the other.

I'm just a layman, but it just makes sense to me that only another sleep study will answer your questions. A doctor's recommendation of an acceptable med to help you get some sleep that night may be helpful. I don't know the ins and outs of insurance enough to know what happens when a study is unsuccessful, like who pays. Did you only sleep 26 minutes or was only 26 minutes recorded? If a patient does not sleep, that's not the clinic's fault - they still paid their staff and did their job. Seems a repeat would still be a medical necessity and should be covered by insurance. If there was some failure on their part to properly collect data the full night, then they should repeat as a freebie. The graphs that are a part of the sleep study details would answer that question.

Well, one thing you did prove that night - you do have trouble sleeping! Let us know how things progress.

[trisha]

Thank you Kat 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.

[KatEyes]

I can see you are frustrated and with due cause. First thing to do - get a copy of your full sleep study. You have a right to it. Read for yourself what's in it. Since your doctors are not very communicative, you will have to be explicit about your expectations of them.

Example: Show me on my sleep study report the diagnosis for which you have prescribed Klonopin.

Klonopin is sometimes prescribed for Periodic Limb Movement Disorder. If you had any indications of that, it may have been picked up on the study, but you doctor should have said if that was a suspicion. Your description certainly has some familiarities with my own symptoms before I was diagnosed. Kicking especially. My contractions were so extreme my stomach muscles would tighten and I would awaken lurching to sitting upright in the bed while exhaling forcefully. I also have obstructive sleep apnea. That can cause the body to do some contorting in an attempt to breathe.

Again, get your copy of the report. If you did not sleep enough for it to be diagnostic, you may need it repeated. Second time around you'll know how to make it better - warm PJs and socks, etc. If you do need another one, I think I'd consider a different clinic and doctor. I too left a followup appt. in tears before. Patients shouldn't have to be bewildered about their test results. When you do get those results, feel free to drop me a message or post the results here. Hang in there. Once you start compiling your own medical records you'll be able to ask more targeted questions and feel less helpless. You're on your way.