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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by zeugma on November 8, 2003, at 16:23:29
For many years, I've been prone to a strange sleep disturbance that I'm not sure I know how to explain. Starting at the age of 23, while falling asleep late at night, I would get a painful rushing sensation in my head, often accompanied by by noises like that of a plane taking off, and terrible headache. I would struggle to wake up and would have to go through a series of false awakenings that were rather terrifying to experience. Invariably, they would occur immediately after going to sleep. When I would finally fight my way awake only a few minutes would have elapsed on the clock since falling asleep.
Later these disturbances would occur preceded by a dream, in which I would recognize something as 'wrong'- I would perceive that I was actually dreaming, and for some reason this would fill me with terror. I would feel that I had to wake up or be trapped in the dream and possibly die. Again, a series of false awakenings- in which dream imagery would give way to blackness- would take place, and after each false awakening I would realize something was 'wrong' and try to wake myself up. Rushing sounds, and tearing headache would accompany these events. Finally I'd wake up, often gasping for breath, and again only a few moments would have elapsed on the clock.
As my depression and other disorders worsened as I entered my thirties, these episodes seemed to become more frequent and severe. Sometimes I would have series of these dreamlike events through the night, completely blocking any sleep. Once, I remember dreaming that I was having an epileptic seizure, and as I was convulsing on the floor of my apartment, I distinctly remember telling myself that when I woke up, I would dial 91 and tell them that I needed an ambulance. I described this dream to my neuropsychologist, and she called it a 'lucid dream' since I was fully aware that I was dreaming: and she was amazed at the frequency with which I had them (sometimes I'd get them every night for a week). I asked her if they could be epileptic, as they felt like electrical shocks passing through my brain (and causing a lot of pain). She told me that epileptics don't usually experience pain when their seizures take place. But they certainly FEEL epileptic to me.
Anyway, to the reason I'm posting this now. Since I restarted psychotropic meds (first nortriptyline, then buspirone, and most recently Strattera) I've exp[erienced a steady decline in both the number and intensity of episodes. This may partly be related that until I restarted meds, my sleep patterns were terribly chatic and the episodes would usually occur late at night after a bout of insomnia. Now this week I started a demanding new job, and I've had to get up earlier than 5 am some mornings in order to get to work on time. So I've been getting a lot less sleep than usual, and that always seemed to be a trigger for attacks. But I also just started clonazepam 0.25 mg bid yesterday, and last night I had the first attack in several months. And the attack was different- where previous attacks were 'dreamlike', in that they would usually begin by my noticing something odd in my environment that led me to suspect I was dreaming, and that would trigger a struggle to awaken, causing a series of false awakenings and electrical sensations in my brain- this had no dream content, in fact it felt 'hallucinatory.' I saw flashes of light (and heard the same kind of sounds that characterized the 'struggle' phase of the event) and the flashes had patterns, not at all like the random electrical jolts I used to experience. Plus it felt if anything MORE intense than what I used to get. Again, this occured immediately after going to sleep.
I was disturbed and naturally suspected the Klonopin, but I didn't want to jump to conclusions. After all, a known trigger for these things is lack of sleep, and that's been the case this week. I didn't feel too ill after waking up, and soon after I was able to fall asleep without sequelae.
Today I worked at my old job, and my boss commented on how calm I was considering I'd started a sterssful new job this week. I thought, "THe Klonopin's working." Anxiety has been terribly debilitating in my life and impeded my professional advancement, my social life, everything. And it has been completely resistant to every other form of treatment- SSRI's, TCA's, Buspar. Strattera hasn't helped my anxiety either. I felt a sense of well being today which I haven't felt at least since the age of five (when I was forced to go to school- school phobia struck hard and early, and never relented, combining with severe ADHD and later depression to leave my life in chaos).
So today I worked till 1, came home feeling quite relaxed decided to take a nap at 4. I had the 'hallucinatory' experience again. It5's protracted and painful- except the headache goes away after waking up. Am I right to be concerned about this? I am aware that 'hypnagogic' hallucinations are common, and nothing to worry about. Is that all these are? It really feels while it's happening that my brain is firing convulsively, and I become terrified that I'll damage it if I let it continue- hence the struggle to awake. KLonopin is an anticonvulsant, so what bearing could that have? Even though I have a sense of well being that I've hardly ever experienced, I am not going to want to go through these events on a daily basis. Does anyone have any insight? Or is this 'normal' and harmless?
Posted by zeugma on November 8, 2003, at 17:03:23
In reply to strange sleep disturbances, and Klon startup, posted by zeugma on November 8, 2003, at 16:23:29
I just typed in 'clonazepam and hallucinations' on Google, and this was listed as a 'rare' s/e, and warned 'stop taking and see physician NOW." The dream/hypnagogic experience felt more hallucinatory than usual but does it count as an actual hallucination? Does one actually have halluciantions at the border of sleep? Please, can someone with medical knowledge advise?
Posted by utopizen on November 8, 2003, at 18:46:38
In reply to important, posted by zeugma on November 8, 2003, at 17:03:23
> I just typed in 'clonazepam and hallucinations' on Google, and this was listed as a 'rare' s/e, and warned 'stop taking and see physician NOW." The dream/hypnagogic experience felt more hallucinatory than usual but does it count as an actual hallucination? Does one actually have halluciantions at the border of sleep? Please, can someone with medical knowledge advise?
>It is always possible that a medication can cause a new problem as a side-effect.
BUT DO NOT STOP TAKING KLONOPIN AS PRESCRIBED UNTIL SPEAKING WITH YOUR DOCTOR. Klonopin requires weaning off of it, ESPECIALLY if you have any potential of seizures to start with. Even if you don't, there is no less risk with it.
DO NOT DISCONTINUE your medication until your doctor instructs you, if he or she decides to. It requires a weaning period, where you slowly come down off of it. Klonopin can cause seizures, and both of my psychiatrists have seen it happen many times, they prescribed it to me knowing this because they know how to properly take me off it.
YOU NEED TO SEE A NEUROLOGIST, one who is board certified in sleep medicine. Ask your physician for a board-certified sleep neurologist. NOT every neurologist who specializes in sleep is board certified, ask this before you see him or her.
YOU MAY BE PRONE TO SEIZURES. You'll likely have a neuro exam, and have a sleep-deprived EEG ordered to determine your likeliness of seizure.
YOU MAY (VERY LIKELY) HAVE CATAPLEXY. Cataplexy is a sudden loss of control in one's muscles, and varies in its extent and frequency. It is VERY closely associated to sleep, since it's a sleeping disorder.
If your doctor determines that you do have narcolepsy, he or she is likely to prescribe you Xyrem (Sodium Oxybate). More info on cataplexy and Xyrem is at
www.Xyrem.com
Hang in there, it's rough, but you need to see a sleep doctor, a neurologist. Your psychiatrist is unlikely to understand sleep medicine enough to diagnose you correctly. Cataplexy is a rare disorder, so it's less understood outside of the sleep field.
Posted by utopizen on November 8, 2003, at 18:52:52
In reply to strange sleep disturbances, and Klon startup, posted by zeugma on November 8, 2003, at 16:23:29
Waking up and gasping for breath is a sign of sleep apnea-- you need an overnight sleep study ordered by a pulmonary specialist to determine this.
First, you need to see a neurologist who is board certified in sleep medicine to give you a neurological evaluation and order a sleep-deprived EEG to rule seizure potential out.
You most likely have narcolepsy, because it's the only disorder that features hypnagogic hallucinations. Xyrem helps people to stop having this. You should not have to deal with this.
Posted by zeugma on November 8, 2003, at 19:19:03
In reply to Likely, it's narcolepsy + sleep apnea, posted by utopizen on November 8, 2003, at 18:52:52
thanks for the information. I don't want to go off Klonopin. It is the only drug (or nondrug- I turned to Klonopin after total failure of CBT) to help with the severe anxiety.
I will call my doctor as soon as possible and tell him about this. I have had sleep problems all my life but the EEG was done before I developed the hypnagogic attacks at 23.
I also found this page http://www.arts.uwaterloo.ca/~acheyne/S_P.html which seems to describe symptoms of sleep paralysis that are similar to what I have experienced, with the exception that severe headache is very rare with Sleep Paralysis. The other symptoms are familiar to me however.
Thanks again. I think I need to call my pdoc now.
Posted by utopizen on November 8, 2003, at 22:17:08
In reply to Re: Likely, it's narcolepsy + sleep apnea, posted by zeugma on November 8, 2003, at 19:19:03
> I will call my doctor as soon as possible and tell him about this. I have had sleep problems all my life but the EEG was done before I developed the hypnagogic attacks at 23.
>Late teens/early 20's is when people typically get Narcolepsy, that's common for the disorder. Sleep-deprived EEGs and neuro evals are an important step because docs need many potential problems ruled out before treating you, and these tests take a few weeks to schedule, then a few weeks to review, then a follow-up appt., then scheduling an appt. with a different kind of doctor (if you have apnea, you need to see a pulmonary specialist to determine it).
Are you tired in the day after sleeping 7-9 hours? I've been tired since puberty, and it's seem to have gotten much worse the past several months. I'm 20.
I have "atypical N," because Narcolepsy typically includes symptoms like hypnagogic hallucinations, sleep paralysis, and in some, cataplexy, among other problems. I just went in to my neuro over a shoulder shrug twitch I get now and then, and ended up with the diagnosis that it's a manifestation of REM behavior, and relates to my sleepiness.
The problem is, this is a very long process. Unlike any other area of medicine, sleep medicine doesn't take into account that the patient's quality of life is a priority. Everything revolves around objectivity, which translates to ruling everything out, which translates to a long road before even receiving treatment-- I've taken 4 separate tests myself, including the EEG.
So get started ASAP. Your psychiatrist should know of a neurologist who is board certified in sleep medicine, and from there your neuro will know where to see a pulmonary specialist (your gasping at night is a telling sign of apnea, and it's not as related to your dreaming as you might believe.
More likely, your lack of ability to breathe at night causes you to have a scary dream, which causes your heart to race, which is done to wake you up to gasp for air.
Many people with narcolepsy have another sleeping disorder, including apnea. I have narcolepsy and apnea myself, and find Xyrem and CPAP to work great. Your symptoms are actually more common for narcolepsy, my lack of such symptoms made it difficult to initially diagnose me-- they have to treat me w/ CPAP first, and didn't want to treat my narcolepsy with Xyrem until they ruled out the possibility that CPAP could resolve all my problems in case all I had was apnea.
Your psychiatrist, unless he or she would prefer some other specialist to do it, is likely going to manage any meds related to your condition after you're diagnosed by the specialists (neurologist, pulmonary specialist, etc.) My pulmonary specialist didn't feel comfortable prescribing meds and told me to have my psych to deal with it, I'm not sure if that's because he does that with everyone or because I was already seeing my psych. for social anxiety and ADD meds (Desoxyn + Klonopin).
What I did to speed things up was see a psychiatrist that was a pioneer in sleep medicine. I saw him for a one-hour consult because that's all he does, he's a professor at Tufts and is very busy guy, expert. Knowing Xyrem was promising for my condition, and knowing an expert would likely agree with my ideas because they're as smart as I am about the thing, I saw him and he told my psychiatrist to give me Xyrem.
Since my psychiatrist knows he's one of the biggest names in sleep medicine, he's not going to go against his opinion. They feel more comfortable, because they can always say, "Dr. X advised me to give X drug to Patient X after Dr. X saw Patient X."
It's better than having to whine for a year and a half and them not listening to you... although the p-doc I found now is much better than the guy I found before.
ONE OTHER THING-- Xyrem CAN'T be taken with a benzo like Klonopin, or any other CNS depressants (say, Straterra, Celexa, you name it, it's quite possibly going to be a CNS depressant). Respiratory depression can result, so if you ever do decide on Xyrem w/ your doc, you need to be off Klonopin at that point.
The alternative is trycyllic antidepressants or SSRIs or others in a cocktail, and those have lots of side effects. So I chose to go off Klonopin because I decided social anxiety disorder wasn't fun, but at least Xyrem lets me function enough to not be painfully tired. Also, you can try switching to Tranxene-SD or something, Klonopin's useful in a few things like RLS or Social Anxiety Disorder, but if you have generalized anxiety disorder, you've got many options with benzos.
Posted by zeugma on November 9, 2003, at 9:26:09
In reply to Re: Likely, it's narcolepsy + sleep apnea, posted by utopizen on November 8, 2003, at 22:17:08
I used to sleep 7-9 hours a day and would feel horrible on waking up. This was so true that often, when I worked Saturday mornings, I would CHOOSE to not sleep Friday night because my performance would actually suffer if I got any sleep. Of course, by Saturday night I did not feel like a human being, but I didn't want to f** up at my job.
It's very likely that I have cataplexy. I do take a cocktail including a tricyclic antidepressant, nortriptyline, which moderated the hypnagogic attacks, and buspirone, which was also helpful although I've seen no references to this in the literature. I added Strattera in May, and since then, the only two nights I've gotten severe hypnagogic events have been the two nights on Klonopin.
So my pdoc called back last night and told me to take the 0.25 mg Klonopin in the morning, and to skip the Klono in the afternoon. Hopefully this will give me the anxiolytic benefit where I need it, when I'm at work, because that's obviously where the social anxiety kicks in. It would help not to be anxious at home also, but I can't cope with these hypnagogic problems.
Since starting nortriptyline my sleep has been normalizing... the references i've come across suggest that NE reuptake inhibitors are especially good for cataplexy. Oddly, I felt LESS daytime fatigue on the Klonopin than I've ever felt. I think this is because my anxiety is so draining on my nervous system that I exhaust myself trying to remain calm.Thanks,
z
Posted by utopizen on November 9, 2003, at 20:42:27
In reply to Re: Likely, it's narcolepsy + sleep apnea, posted by zeugma on November 9, 2003, at 9:26:09
You may find Xyrem is something to look into. Your doc has to call a pharmacist, wait for a package to arrive, read the materials, fill out a registration form, and you have to wait a few weeks because it's a backlogged drug right now and only available through one central mail order pharmacy. Then it takes 8-10 weeks to kick in after you titrate it.
So if it's something you'd like to look into, I'd go to xyrem.com and fill out the patient info request form so you can have the phone number your doc can call.
Posted by Elle2021 on November 10, 2003, at 6:51:09
In reply to strange sleep disturbances, and Klon startup, posted by zeugma on November 8, 2003, at 16:23:29
After reading your post and everyone elses that responded to you, I decided to look up Cataplexy. I found an interesting website that you might find helpful:
http://members.aol.com/brisleep/cataplexy.html#feels
Hope you feel better soon!
God bless you.
Elle
Posted by zeugma on November 10, 2003, at 22:32:13
In reply to Re: strange sleep disturbances, and Klon startup » zeugma, posted by Elle2021 on November 10, 2003, at 6:51:09
Hi, thanks for that interesting Cataplexy link. Yes, I'd describe it as one of the most horrifying symptoms ever. Feeling completely aware yet unable to move and feeling shocks course violently through your body. I wonder why Klonopin would have triggered it; maybe it relates to a lowering of norepinephrine by it GABAergic effect? On my pdoc's advice I am only taking .25 mg first thing in the morning, and last night I got to sleep without incident. I feel certain that narcolepsy/cataplexy is part of my deep symptomalogy, and I'm glad that the NE reuptake inhibitors (and buspirone) help to control it.
What puzzles me is that GHB would be an optimal treatment for narcolepsy, and yet it appears to have a similar effect to Klonopin on GABA. My pdoc commented to me on the phone that it appears to be a "very delicate balance" inside my brain and that he's going to proceed gingerly with the Klonopin even if this low dosage only partially relieves my SP. By the way, it DOES seem to have an effect already. People's faces look less threatening than before I took the med, leading me to suspect that my SP is really a disorder of perception, and that I absolutely need something to keep my perceptions from undue distortion.
And thanks again to utopizen for the diagnosis.z
Posted by Elle2021 on November 11, 2003, at 2:12:44
In reply to Re: strange sleep disturbances, and Klon startup, posted by zeugma on November 10, 2003, at 22:32:13
This is the end of the thread.
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