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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 20 of 20. This is the beginning of the thread.
Posted by Dinah on June 24, 2004, at 9:32:18
Well, it turns out it runs in my mother's family. Along with diabetes and familial tremor, and heaven only knows what else.
One uncle had spoken to me a week or so ago about his idiopathic hypersomnia. But in a family my mother's size, I figure every disease crops up here or there. But a second uncle called me last night at my mother's request to tell me that not only does he have a sleep disorder but that a fair number of my aunts/uncles and cousins are being treated for narcolepsy or related sleep disorders.
I still don't think I have narcolepsy, but with this additional information I don't feel quite as hideously embarassed to be taking up the sleep lab's time. So that's something, right?
Posted by partlycloudy on June 24, 2004, at 9:47:21
In reply to Sleep disorders, posted by Dinah on June 24, 2004, at 9:32:18
When do you do the test? And it absolutely is not a waste of time if it can rule other problems out!
Posted by Dinah on June 24, 2004, at 9:51:58
In reply to Re: Sleep disorders » Dinah, posted by partlycloudy on June 24, 2004, at 9:47:21
Tomorrow night. I'm reasonably anxious about it.
Posted by Dinah on June 24, 2004, at 10:01:50
In reply to Re: Sleep disorders » partlycloudy, posted by Dinah on June 24, 2004, at 9:51:58
They don't want me to drink any caffeine tomorrow, or the next day if I stay over for the daytime test. Isn't that going to give me a massive headache that will disturb my sleep more than any amount of diet cola? Will they let me take something for the headache?
Posted by partlycloudy on June 24, 2004, at 10:03:48
In reply to Re: Sleep disorders » partlycloudy, posted by Dinah on June 24, 2004, at 9:51:58
My friend who had a sleep test was anxious too. She said the techs were very laid back and tried to make her less anxious, and she felt silly having sensors stuck all over her. It was helpful in that it ruled out some conditions.
I'll dream a good dream for you.
Posted by spoc on June 24, 2004, at 11:58:04
In reply to Sleep disorders, posted by Dinah on June 24, 2004, at 9:32:18
>.... I don't feel quite as hideously embarassed....
<<<<< Ok, not the same thing, but speaking of hideously embarrassed (or in my case, hideously undignified)... A few years ago I finally, finally went to a reputable sleep disorders clinic in a hospital. They ended up "strongly encouraging" me to enter a current NIH study that was at last being done on melatonin. Said, what a great opportunity this will be for you to really learn about yourself. So I joined the study, which was being done with people who had something called DSPS (Delayed Sleep Phase Syndrome, wherein I think the hypothesis is that some people's bodies have no regulation or recognition of sleep cues).
For weeks I had to wear this big, clunky, black plastic meter on my wrist 24/7, that they could download data from to see when I was actually sleeping (through relative lack of movement). Of course it was summer, so no sleeves, just the appearance of really bad taste in watches (or calculators). And, at intervals, I had to wear a power pack on my belt with wires leading to a big thermometer in the back door!!! (Temp is a big clue to people's sleep cycles.) Not easy to hide, and had made the mistake of telling some people so boy did I get teased. This protocol would have to be followed in order to complete the study and reap $100 and all that priceless info about myself.
Well, near the end (no pun intended), the last time I had to spend a day and night wearing the probe, I woke up with a raging fever. Like a good camper, I wore it anyway (gee, guess I must have just liked it. NOT!), but turned out the reading was rendered useless.
After all that, what did they say when I was done and asked for my valuable personal insights? "Oh, the results of this study won't be available for years!" Arrrrg. I'm a big procrastinator, so I never did start over and try to get actual *help* for what I had gone there for. And they never brought it up either.
Btw, I'm sure I was getting the placebo in the study, as I know that melatonin gives me weird dreams and irritation the next day, which this pill didn't. I never did look into what the study results were. I think their hypothesis was that people should actually take melatonin much earlier in the evening than they tend to.
Obviously, this is WAY neither here nor there as to your situation Dinah! Just couldn't resist a thread about sleep disorder studies. GOOD LUCK, and good luck relaxing about it! I think it sounds kinda neat, except that I don't know how people can sleep under those circumstances. But then again, I don't know how people can sleep under any circumstances, that's why I went to a clinic myself!
Posted by Dinah on June 24, 2004, at 12:47:06
In reply to Re: Sleep disorders » Dinah, posted by spoc on June 24, 2004, at 11:58:04
That does sound like quite an experience!!!
Did you ever get any help with your sleep disorder? I've been told that if I do indeed have a sleep disorder, fixing it (which is the rub, isn't it) will help everything from my migraines to my mood instability.
Makes sense, but I'm not that hopeful since my psychiatrist thinks I can't tolerate narcolepsy drugs anyway.
Have you had any luck?
Posted by spoc on June 24, 2004, at 13:26:21
In reply to Re: Sleep disorders » spoc, posted by Dinah on June 24, 2004, at 12:47:06
> That does sound like quite an experience!!!
>
> Did you ever get any help with your sleep disorder? I've been told that if I do indeed have a sleep disorder, fixing it (which is the rub, isn't it) will help everything from my migraines to my mood instability.
>
> Makes sense, but I'm not that hopeful since my psychiatrist thinks I can't tolerate narcolepsy drugs anyway.
>
> Have you had any luck?
<<<< You know, shortly after that I started working from home, and I have no family obligations or other things that demand that I learn to be on the same time most other people are. But that should *not* have passed as a solution to me all these years. I too have heard all kinds of things about what effects we suffer through improper sleep, even when we don't sense it. I was told I may never be going into certain stages of sleep at all. I tend to sleep only four hours or so whenever I do fall asleep, and I may think and sometimes hear that's fine, but I don't really know. And in any event, I think the fact that falling asleep to me means literally passing out from exhaustion -- I know no other way -- affects the quality that ensues thereafter.And I rarely take any meds for it, since it's so chronic, and since as it is I don't often *have* to be anywhere for which proper sleep hours would have been important, so why risk that can of peas.
Weird thing is that in the last year, I go through stages where I flip, falling *dead* asleep "accidentally" relatively early in the evening, and waking up for good at 3 or 4 AM. When all my life I used to be *going* to sleep at those times. This comes on very suddenly and not related to change in routine or mood. But it actually bothers me much less than my other, more typical pattern. And somehow I think it can be explained by how I just walked away from life and holed up awhile back, no exercise, no outdoors, few routines of any kind anymore really. I think one of the theories with DSPS sufferers is that they have no inner clock, so they can end up all over the place. I seem to remember that they said if you put a "normal" person in a cave with no light cues as to time of day, their bodies would still come to follow a normal 24 hour cycle, whereas the bodies of DSPS people wouldn't.
I also probably have a less overactive mind now, because I'm not in there plugging away and trying to figure things out and deal with things anymore.
But, whenever I get moving again, I know it will be back to the other side, falling asleep at 4 AM as I have since adolescence, unrelated to activity level in my life. I know I need to see someone again, my brain probably isn't getting what it needs from sleep. And at the times there is someone in my life who wishes I could sleep normal hours, or when I do need to stick to a normal schedule, it causes a lot of problems. You'll be my role model for taking action! : )
Posted by Emme on June 24, 2004, at 22:05:31
In reply to Sleep disorders, posted by Dinah on June 24, 2004, at 9:32:18
Hi Dinah,
Just wanted to say good luck with the sleep study.
Emme
Posted by Dinah on June 25, 2004, at 7:53:29
In reply to Re: Sleep disorders » Dinah, posted by Emme on June 24, 2004, at 22:05:31
I'm even starting to hope that it shows something so I can increase my abysmal productivity.
I should know mid July.
Posted by zenhussy on June 25, 2004, at 13:17:17
In reply to Re: Thanks, I'll need all the luck I can get., posted by Dinah on June 25, 2004, at 7:53:29
I will be thinking of you tonight and tomorrow in your groundbreaking study. It is a big deal and I think you are going into this with a good frame of mind.
Let those 'scienticians' do their wires and computers and such to come up with some information that could help you to feel better.
I'm not hoping they find anything serious or harmful but I'm kinda hoping they do discover something that is so subtle as to not have been picked up on before but big enough to toss a wrench into the works. That way there would be some course of treatment which could make you life tons better. You never know. Imagine being rested and maybe that would lead to less woes digestively and so forth. You just never know. I'm thinking very positively about this for you as I think it could help sooooooooo much.
So here's wishing you peaceful slumber and aces on your results mid July!!
Go D go!!
--zh
Posted by All Done on June 25, 2004, at 16:29:29
In reply to Sleep disorders, posted by Dinah on June 24, 2004, at 9:32:18
Posted by Jai Narayan on June 25, 2004, at 17:26:44
In reply to Good luck tonight, Dinah. Sweet dreams :) (nm) » Dinah, posted by All Done on June 25, 2004, at 16:29:29
I hope this is fruitful.
I would love to hear how this is done and what your experience is.
I have wondered about doing this same thing.
I too suffer from sleeplessness.
I will be thinking of you tonight.
Posted by fallsfall on June 25, 2004, at 18:08:06
In reply to Some of us are sleepless as well, posted by Jai Narayan on June 25, 2004, at 17:26:44
Lullabye and good night...
I never did know the words to that one...
How about:
Stay awake, don't rest your head
Don't lie down upon your bed
While the moon drifts in the skies
Stay awake, don't close your eyesThough the world is fast asleep
Though your pillow's soft and deep
You're not sleepy as you seem
Stay awake, don't nod and dream
Stay awake, don't nod and dream
Posted by Jai Narayan on June 26, 2004, at 7:35:14
In reply to 'Night Dinah, posted by fallsfall on June 25, 2004, at 18:08:06
Posted by Dinah on June 27, 2004, at 8:39:20
In reply to really nice poem.... (nm), posted by Jai Narayan on June 26, 2004, at 7:35:14
It went ok. The technician let me know enough that I don't have narcolepsy. I only fell asleep once during the nap period, and I didn't dream. I get the official news mid July, though I am also going to request a copy of the report in writing.
Since I only have my involuntary naps when I'm upset, they should have let me go to to the vet to pick up Harry's pills and *then* run the test. The bill was so high that I had to think which credit card I could put it on. :( I'd have been sleeping all over the place.
But not dreaming. My involuntary naps/forgetting sleeps have no dreams. I could've told them that.
Sigh. What a waste of money. I told the neurologist it was dissociation and not the narcolepsy *he* thought it was. Score one for the therapist over the neurologist.
Posted by gardenergirl on June 27, 2004, at 9:26:54
In reply to Re: Thanks everyone, posted by Dinah on June 27, 2004, at 8:39:20
Dinah,
I'm sorry about Harry and his vet bill. Even basic care is getting astronomical, and Daily is due for her annual exam and shots in a couple of weeks. (sigh)Also, I'm glad your sleep test wasn't too awful and that it confirmed what you know in your body. I think that is an important sense.
Take care,
gg
Posted by Dinah on June 27, 2004, at 10:18:31
In reply to Re: Thanks everyone » Dinah, posted by gardenergirl on June 27, 2004, at 9:26:54
They have gone up astromically in a short period of time. I can't quite figure out what's up. I have several due for shots, and I'm going to have to figure out my finances first.
It's mainly the Tamoxifen. I'm going to have to check out pharmacies and see the price differential. If it's large enough I might have to risk my vet's displeasure by asking for a prescription for it. At the vets it runs over $150 per month. Plus the other meds in his cocktail. Plus I picked up some monthly pills for the other dogs that I forgot to mail order. I'm not saying it's not worth it. Harry is so important to me. But the total sure did make me stagger.
Posted by gardenergirl on June 28, 2004, at 13:18:34
In reply to Re: Vet prices, posted by Dinah on June 27, 2004, at 10:18:31
How about we set up a lobby for VSA's? Veterinary Savings Accounts. I wouldn't mind more tax savings!
gg
Posted by Dinah on June 28, 2004, at 17:14:30
In reply to Re: Vet prices, posted by gardenergirl on June 28, 2004, at 13:18:34
Or maybe this is society's way of telling me I should have fewer dogs.
This is the end of the thread.
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