Sleep study results back

[nyxie63]

I'm so stinkin' frustrated!!!!

Been having what I call 'wake-n-shakes' since April. I'll wake up in the middle of the night and (usually) my right hand will be having huge tremors. Sometimes I'll wake up and then the tremors will start. Occasionally, it'll also involve my jaw. It'll start trembling and then the hand thing will start. I've even had one full-body episode of this. I'm perfectly aware of what's happening when it's happening. The cycle is wake up, hand (or whatever body part) goes wubba-wubba-wubba, then I fall back to sleep again right away. Sometimes it only hits once, other times this will hit 3-4+ times a night.

This is the whole reason I got the sleep study in the first place! Did the sleep study back on Sept 11-12th. Takes a whole 6 weeks to get the results back. Oy.

Heard back from the neuro (finally!) this week. Everything came back fine on the polysomnogram. No mention of the multiple wake-n-shakes that happened during the study.

Asked the neuro about the wake-n-shakes. He said they were probably sleep paroxysms and sometimes very difficult to detect. No further info, even when prodded. Thanks doc. *grumblemutter*

The MSLT came back with a dx of 'moderate excessive daytime somnulance (EDS - not the flexy one)'. Fell asleep during all 4 nap periods in under 7 minutes and reached stage 2 sleep in all but one of them. From what I understand, that's not normal. The neuro rx'd Provigil to help with the EDS.

The good news is no sign of apnea or narcolepsy.

So anyway, according to the neuro, I'm supposed to take the Provigil, see if that helps eliminate the wake-n-shakes, and if it doesn't he'll refer me to a sleep specialist.

Dunno how in a pill that's supposed to keep me awake is going to help me sleep or deal with the tremors. But who knows? If the wake-n-shakes are really what I think they are, this pill ain't gonna help.

From what reading I've done on the subject (and there isn't much out there specifically on 'sleep paroxysms') it could either be some form of parasomnia (which doesn't explain why I'm awake and aware of what's going on) or something funky's going on in my frontal lobe (which could explain why nothing's being detected). Loves me a good run-on sentence. ;D

Additional note: When I had the EEG done earlier this year, during the hyperventilation part my jaw started to have minor tremors. The interesting part is nothing showed on the EEG during that time either, which sort of has me pointing towards frontal lobe funkiness.

Need to get my sticky little hands on a copy of that sleep study!

So, even after the sleep study and all those weeks of waiting, it doesn't look like I'm any closer to an answer. Feh!

[LymeEnigma]

I'm so sorry to hear that. I wish you were able to find something out through the study. My faith in medicine flew out the window a long time ago, due to my own string of useless tests....

[enochroot]

I did a sleep study too , for "disturbed sleep" which I still have.
The results took a while (just like you say) got not much back
but mild /moderate apnea - been using a CPAP for a while now,
not that it helps that I can tell. I had those shakes just like you for
a while!!!

The neuro I went to was useless - refused to do the brain
chemistry panel I wanted. He was way more interested in
my ruptured cervical than what I was PAYING him to try to solve
- that being disturbed sleep

what sleep meds have you tried?

I currently take Lunesta and 5 HTP

[nyxie63]

LE, faith, no; hope, yes. That little spark just won't die out, dagnabbit! Keeps me fighting for answers, it does! Got windmills? ;D

Enoch, interesting about the shakes. Did they go away once you started on the CPAP or did they just sort of fade away?

I've only tried Trazodone for sleep (at half the dose rx'd by the doc). I don't like taking the Trazodone and only use it when absolutely necessary. Call me strange, but I like being able to wake up in case of an emergency. The Trazodone makes me dead to the world; a bomb going off wouldn't wake me up.

Without it, I fall asleep just fine. Problem is, I'll either wake up with the wake-n-shakes or will go through periods (months at a time) of terminal insomnia where I'll wake up at some obscene hour and not be able to get to sleep.

I'm seeing a new neuro in January. Hoping she'll have at least half a clue.

[enochroot]

Nyxie

Oooops! My bad
Not Trazadone - tried that and it was awful for me.
Tramadol - (for pain) I have been on so many meds
over the past year I easily get them confused!

The shakes were at their worst back in July, and seemed
to fade away by later august. I can only attribute that to
the treatments overall but who knows?

I am getting the glutathione injections 2X a week since
mid September, taking whey protein once a day, taking
omega 3s
alpha lipoic acid *
coenzyme Q10 *
multivitamin
Ester C
ginko biloba *
vinpocitine *
Acetyl L Carnitine *
taurine
Choline and inositol *
lutein
(all with * are supposed to help with neuro issues)

Taking the Lunesta and 5HTP specifically for sleep
every night, still wake up at least a couple of times
a night.

[cobweb2]

I've being me to respond to you nyxie because i had a similar experience where I thought the readings of a an EEG were going to be off the charts because of what I was experiencing during the test-and the read came back normal! Say What ??

Anyway- I take provigil- and I'm prepared to take it for the rest of my life if I can. I have been instructed to take it upon first waking up and again late morning- but not after 1pm.

Now that I'm better -it works better. There was a time when I would become overwhelmingly fatigued during the day that provigil or not I would have to lie down and sleep for a bit.

I also take Keppra which is an anticonvulsant- and although I don't think I am having seizures-I want to continue to take that,too because it helps with my thinking ability.(thinking of your wake and shakes because nighttime seizures are harder to control than daytime seizures.-not to say your having seizures-but perhaps any nighttime neuro issues are harder to control).

I don't take the provigil on weekends- I take the naps on weekends. I was reluctant to start the provigil thinking it was like speed- but it is not.

[nyxie63]

Enoch and Cobby, thanks for your replies! I haven't tried the Provigil yet (haven't been able to afford the co-pay until this week).

I've been on a slew of supplements for various things. Decided to relax on those as well during the "cleansing period" I'm going through right now. Haven't seen a difference one way or the other regarding the wake-n-shakes.

Btw, I think I've finally figured out what triggers the wake-n-shakes. Now how to deal with them. Hrm.

I've been keeping (loose) track of my sleeping habits. The wake-n-shakes seem to be caused by sleep deprivation and, apparently, it doesn't take much loss of sleep to cause them.

Yesterday, woke up at 4:30 in the morning. Only an hour or so earlier than usual. No nap all day (tried but kept getting woken up by noises). Last night, right on cue, had a wake-n-shake. It wasn't a big one, although it was a little different than others I've had. Just the right ring finger again, but it lasted a lot longer than usual and came in 3 waves.

Have to admit, this new realization has me almost giggling at the possibilities for self-experimentation. Would definitely explain why it happened during the sleep study - made sure I was good and sleep deprived for that. I'm now especially eager to see whether the Provigil would make the wake-n-shakes better or worse, considering it's supposed to keep me up during the day.

Less sleep = more shakes? Hrm.

And the experiment continues......

[enochroot]

Could it be nervous exhaustion?
I think this is a real possiblity.


I am really thinking about paying for this just to
see what comes back
www.integrativepsychiatry.net/neurotransmitter_tests.html

[nyxie63]

Nervous exhaustion? Really? Hadn't even considered that. Will have to look more into it. Is that related to anxiety? Not any more anxious these days than usual. I've been getting around 7 hours of sleep a night plus naps for the past month or so. It just took that one day of moderate sleep loss to do this.

re: neurotransmitter testing - would your insurance cover this? the cost doesn't look 'too' outrageous for out of pocket. is this something your neuro could do?

[LymeEnigma]

I've found that sleep deprivation can do all sorts of funky things to the nerves. I found a direct correlation to my arm numbness and not getting enough sleep, which these days only occurs when I'm not dealing with my stress appropriately. I know it's not the same thing, but I used to wake with a start, falling into an immediate and unexpected panic, when I had too much unchecked stress in my life ... no shakes, but an overall feeling of coming out of my skin. Strangely, quitting smoking seemed to alleviate that kind of panic significantly, in the long run. Maybe it was just a coincidence, but I really think there was a connection to its frequency, since it only rarely occurs these days ... again, when I'm stressed out, and not addressing it like I should.

The neurotransmitter tests look amazing ... but they also seem a little suspicious, to me. I did a Google search on the subject, and this is the first site I found that was not trying to sell anything: www.raysahelian.com/neurotransmitter.html

Neurotransmitter testing
A neurotransmitter test is available to measure the levels of major neurotransmitters including serotonin, norepinephrine, epinephrine, GABA and dopamine. This testing can be done by urine, blood, or a spinal tap to measure neurotransmitter levels in the spinal fluid. However, only in rare cases is it necessary to do neurotransmitter testing. Even if we know the blood level of these neurotransmitters, and we find a neurotransmitter deficiency, it offers little help in guiding therapy since neurotransmitter levels and neurotransmitter production fluctuates easily from day to day and hour to hour. Neurotransmitter testing is not a reliable way to determine how a person will respond to a particular medicines or supplement for conditions such as depressions, anxiety, ADHD, etc. Neurotransmitter testing could reveal a neurotransmitter imbalance that would be accurate for that particular time period only. Neurotransmitter testing is appropriate in cases of neurotransmitter imbalance or excess such as pheochrmocytoma and other clear cut medical conditions.

Does anyone have any more information on this subject? Even the doctor in the above quote doesn't seem to have a clear thought on it, seemingly flip-flopping his views at the end. One would think that this would be more widely used in psychiatry, if it was sound, to determine definitively if certain meds should be prescribed. If/when I have the time and energy, I'll see if I can find some published articles on it.