Frequent shaking and waking at night - unable to get diagnosis

[revdlo]

My 35 yo husb. has been plagued off and on by a sleep disorder for 4 years. It had suddenly (with 1 week of taking clonezepam) gotten completely better for a few years, but now is increasingly worse again. He has had 2 sleep studies, both inconclusive, except that he is getting very little deep sleep. He doesn't have apnea, but is a light snorer. A dozen times a night or more he suddenly tenses up all his muscles and vibrates for about 10 seconds at a time (as a weightlifter does under great strain.) The clonezapam seems less and less helpful. 2 neurologists have been unable to help, though one found some abnormality on a sleep deprived EEG. 1 neurologist diagnosed him with stress. (He exercises and keeps his weight down to help.) He is going to a 3rd neurologist for an updated diagnosis since it has been a few years since he has seen one, but it is taking 3 months to get in. A sleep dr recommended he consider the Mayo Clinic, which we are working on.  He will also be having an ambulatory EEG for 48 hrs at home, but the sleep dr thought that was just a shot in the dark. Meanwhile I am getting increasingly worried about him, especially when he woke up with tingling in his left arm.  He seems to sleep considerably better during his 2 sleep studies than he does at home (could the wiring be having a helpful effect if he has some "misfiring" or something going on in his brain?) MRI's 3 years ago were normal. Whatever it is seems unusual, and is taking a toll on him, so I am hoping that the drs here or someone over the internet might recognize this condition and know how to help!

[mel_badour]

A related discussion, Me and my daughter both have woke up from our sleep shaking. was started.

[rangerfan25]

A related discussion, seizure only when woken up was started.

[puma]

Revdlo,

Klonopin is an addictive benzo and if the drug level he is at drops because he forgets to take it or the dosage is too low he could get the shakes. Alcohol withdrawal also can cause the shakes at night if he drinks alot.

Remember that dreaming also causes the body to make jerky movments as well.

Chatahan

[CCF-Neuro-M.D.-JT]

First of all, the sleep study is very important and an inconclusive result is unhelpful. Mayo, CLeveland CLinic or a major academic medical center should be considered where he can get specialized care (as you are doing).  Second, see if you can wake him up during his episode. If you can't then it's worrisome for a seizure which is a whole different ball game. If you can, then it's likely a sleep disorder. THe next step would be to figure out if it's in REM or NONREM sleep. This is done with a technically adequate sleep study. Treatment would be klonopin (you can go up on the dose) or an antidepressant as it can alter the sleep architecture. There is a sleep entity in which patients have repetitive movements either in head or limbs, trunk is also possible, that responds to treatment. Try waking him up and go from there. Finally, go for the third opinion. GOod luck.