I don't think it's a full moon, but we must be in some bad cycle.
I've had fragmented sleep for better than a week, HH, sleep paralysis bad, bad, bad.
I did start an excercise class with friends in our RV park, I've had to set the alarm and then have Bob wake me up as it starts at 7:30 am. I decided that this weight gain had to stop and excercise was the answer. We do a four mile fast walk cardio workout. Well after two weeks the more I excercise the worse I feel. Something is not right here! I do have more energy, lost some weight, but I feel like total crap. Maybe it's the fragmented sleep and my body is just in sleep deprivation.
Four days without a post, I thought everyone went to sleep!
I spent 35 years alone with N., and I have grown used to your chatter, comfort, and knowledge.
GEM, we have what they call "a soft place to fall"...
current psychology for emotional safety... but wasnt that just WRITTEN for us?? we fall all the time, and tend to keep our guard up about hard and sharp things.
i apologize for not posting more often, I could not possibly forget how damn difficult this has been to do alone. I can forget lots of things,
like i closed the door on Jim's nephew yesterday, because i could not "place" him,
but i better not forget the key lesson about this wonderful group coming joyfully to my rescue 6 years ago.
I'm afraid I had to miss it once again. Found out that channel is not available on my expanded cable. I guess I don't pay enough money to warrant Lifetime Movie Network.. lol. Oh well.. maybe next time I am at sisters they will have it on again.. she has satellite.
Anyone else have stomach issues due to Provigil here? My stomch seems to be upset quite a bit and Ive been eating Bananas everyday wich seems to help some. Anyone else know anything else to help out on this one?
I have a very touchy stomach when it comes to meds, but I found that actually taking provigil on an empty stomach is best. After about an hour then I eat something, like a boiled egg and some whole grain toast.
When I took provigil I totaly lost my mind had no idea what I was doing and tryed to kill the neighbour. I found out later that this is not the first case of this. I have a good and very understanding neighbour. NO THANKS PROVIGIL. Wes
TAKE A MINUTE AND LOOK AT THIS STORY ON DATELINE MSN CRIME. A WIFE DROWED IN THE TUB AND THE HUSBAND WAS CONVICTED UNJUSTLY.THE WIFE KEPT FALLING ASLEEP EVERYWHERE. SOUNDS LIKE CATAPLEXY AND NARCOLEPSY TO ME.
i saw that...also her friends testified to that, but they still convicted the husband. they said her body could not have been perfectly dry within 6 minutes.
i think he is getting a retrial for that because the jury did home experiments and it affected their answers-i guess you are not allowed to do that. i also did a home experiment, but in front of a fan and i was dry in about 3 minutes and 45 seconds.
then they said her fingers were not wrinkly. well, if you take a shower, your fingers are not always wrinkly.
she actually had said she was taking a bath, but when he got up there, the water was let out and she was face down, leading me to think she may have had cataplexy and fell during a shower and drowned in the little bit of water while it was going down. i have also heard people say 'bath' lots of times and they actually just mean either shower or bath, they just say bath.
anyway, that was a very interesting story and i think the husband is innocent.
I have to keep iron up, too. probably why i crave meat and dark greens. otherwise when i walk up stairs or hills, or walk far, i dont breathe hard, but it feels like my muscles can work hard.
It's on tomorrow morning at 9:30 on channel 253, if you have direct tv, if not you'll have to look on your cable guide for time (sometimes they are the same)
Let me know how you think Missy did playing a narcoleptic. I think she does a pretty good job all in all. Some things may be a little amiss, but we're all a little different.
I have been searching for a reason why my vitamin D level is now so extremely low. I thought nothing has changed, nutritionally, just my taking provigil. Well............... I finally called my doctor back to talk to him about the RX for once a week D2. He explained to me that my labs showed that I have HYPOparathyroidism. A rare (of course) autoimmune disease of the parathyroid glands (two sit on each side of the thyroid gland) and they produce there own hormone. I guess my body decided these are enemies and has decided to destroy them. I think he said the hormone is PTH, which I have low levels. There is no supplement for this hormone, as of yet, anyway. I guess most people experience HYPERparathyroidism, but it figures that someone like myself with narcolepsy would get the rarer of the two.
I don't know if you ever watch "Your Life A to Z" (Channel 3 Phoenix) but once a week they have Dr Ramsey on a segment. It just so happens I watched her Tue and she is an MD in homeopathic medicine, she has a clinic in Scotsdale, and they were talking vitamins and she said it is a myth that people who get 2 hours a day of sun w/o sunscreen is enough vitamin D. I didn't know that! She said most people lack enough vitamin D and Zinc. She says you should get a liquid zinc from the health food store and drink it once a day. It should have no taste (just like water) when you begin to get a metallic taste then stop, your zinc levels are normal. You should do this once a month.
Hi all old and new. I had another MSLT about a month ago. Although I fell asleep almost instantly in all five naps I had no rem. When I was 1st diagnosed the MSLT showed rem in 3 naps.I'm still being treated because I have the symtoms but I'm confused. Can there be a false negitive?
Mike, don't take the MSLT so seriously, I believe you could have one everyday of the week with different results. It is only one test and it just depends on those who interpret it. The MSLT is not the only tool in diagnosing narcolepsy. Those of us with narcolepsy don't have the same symptoms everyday, sometimes I only fall asleep once in a day, sometimes a dozen times, same with HH, automatic behavior, sleep paralysis, etc. Like my psychiatrist says she can diagnose most narcoleptics that have all or most symptoms, by mearly engaging in conversation about your symptoms and experiences. You can always have the spinal tap for hypocretin levels.
after so many years, and such classic symptoms, progression, treatment and chaotic events, it is nonsense to believe the MSLT over all that.
results are very different, i am no champion of sleep labs. and as Pam says, different day, different symptoms.
I hope your treatment is intelligent, understanding and effective. the INSTANT anyone tries to change that based on re-sleep-testing, I would go see a shrink instead. that was what saved me, because not only was i describing it all, i would have sound sleep in mid sentence, and C right in the interviews.
I'm not all that upset about it. I know I have N. I have all the symtoms except C. My doc must know it to or he wouldn't be trying so hard to get it under control. I've heard you can't have a false positive and my first MSLT showed it big time. That's the test I'm going by.
One saturday afternoon a plane heading over the pacific ocean crashes. 2 survivors crawl up on the beach of an island. 1 man jumps up and runs off to check out the island. The 2nd man, a baptist, lays down on the beach and starts to dry his clothes. Several hours later the 1st man comes back. "We are going to die! There's no water, no food, and no sign of civilization!"
The baptist says " Relax we are going to be fine. I make a 100,000 dollars a week."
1st man " I don't care how much money you make! We are going to die! I'm going to check the island again" and he runs off. The baptist lays back down.
Several hours later and out of breath.
1st man " I've checked everywhere, twice, we are going to die!"
Baptist " Relax like I said we are going to be fine, I make 100,000 dollars a week"
1st man " I don't care how much you make! That is not going to get us off this island,why do you keep telling me how much money you make?"
Baptist " Listen, I make 100,000 dollars a week. I've been going to the same church for 20 years and I put 10% a week in the collection plate. The preacher is searching for me right now!"
Last fall I fell down the stairs of our fifth wheel, having a cataplexy attack. Our steps are metal and there were four of them, I jammed my lower back and had to go to physical therapy for a couple of weeks.
i always get to stairs and plan: wow those are steep, long and made of cement. or, Pam's front steps intimidate the heck out of me.
i check for banisters that will hold MORE than my weight, get a tight grip on them and CHARGE up or down. (fell UPstairs a few times, less harsh but still painful, plus you feel and look so dumb)
Amyloid-{beta} Dynamics Are Regulated by Orexin and the Sleep-Wake Cycle.
Kang JE, Lim MM, Bateman RJ, Lee JJ, Smyth LP, Cirrito JR, Fujiki N, Nishino S, Holtzman DM.
Department of Neurology, Washington University, St. Louis, MO 63110, USA.
Amyloid-beta (Abeta) accumulation in the brain extracellular space is a hallmark of Alzheimer's disease (AD). The factors regulating this process are only partly understood. Abeta aggregation is a concentration-dependent process that is likely responsive to changes in brain interstitial fluid (ISF) levels of Abeta. Using in vivo microdialysis in mice, we found that ISF Abeta levels correlated with wakefulness. ISF Abeta levels also significantly increased during acute sleep deprivation and during orexin infusion, but decreased with infusion of a dual orexin receptor antagonist. Chronic sleep restriction significantly increased, and a dual orexin receptor antagonist decreased, Abeta plaque formation in amyloid precursor protein transgenic mice. Thus, the sleep-wake cycle and orexin may play a role in the pathogenesis of AD.
"HLA-DQB1*0602 is associated with dominant protection from diabetes..."
It is either one way or the other. If you have the marker, you are protected from Type 1 (insulin dependent) diabetes. If you have diabetes, you probably would not have the narcolepsy genetic marker.
If you have diabetes, you may want to not consider getting the spinal test for narcolepsy, because you could possibly rule out the narcolepsy diagnosis.
DQB1*0301 ,the other narcolepsy gene also protects for type 1 dibetes type 2 diabetes is another story as far as I know
DQB1*0301
*predespose*
celiac disease (even more with DQB1*0201)
Graves' disease (even more with DQB1*0201)
autoimmune thyroiditis
multiple sclerosis (even more with DQB1*0201) some
populations
myasthenia gravis (even more with DQB1*0201)
lupus
narcolepsy
milk allergy
restless legs syndrome
Rheumatoid Arthritis
melanoma
respiratory scleroma
oral pemphigoid
Bullous pemphigoid
Ocular Cicatricial Pemphigoid
Erythema Multiforme
contributes to risk of familial generalized vitiligo and early
Phil is right, type two diabetes is different. Obesity is the biggest culprit of type II diabetes. Type I is a different story. Even saying that, nothing garantees us 100% protection. This genetic marker DQB1*0301, may pre-dispose me to melanoma, as my father died of melanoma, but it doesn't necessarily mean that I will get it too, although I have had three pre-melanomas removed. If you think of this marker as predisopsing us to the other diseases too, we're in a heap of trouble, that's a pretty long list.
I am sure most of you know narcoleptics have High Levels of TNF-á
Diabetes weakens your bones
Boston, MA and Newark, NJ – Current research suggests that the inflammatory molecule TNF-á may contribute to delayed bone fracture healing in diabetics. The related report by Alblowi et al, "High Levels of TNF-á Contribute to Accelerated Loss of Cartilage in Diabetic Fracture Healing" appears in the October 2009 issue of the American Journal of Pathology.
Diabetes, a condition where the body either does not produce enough, or respond to, insulin, affects at least 171 million people worldwide, a figure that is likely to double by 2030. Long-term complications of diabetes include cardiovascular disease, chronic renal failure, retinal damage that may lead to blindness, nerve damage, and blood vessel damage, which may cause erectile dysfunction and poor wound healing.
Diabetic patients often experience low bone density, which is associated with increased risk of bone fractures and delayed fracture repair. To examine how diabetes affects bone, Dr. Dana Graves and colleagues of the University of Medicine and Dentistry of New Jersey and the Boston University School of Medicine explored bone repair in a mouse model of diabetes. They observed increased levels of inflammatory molecules, including TNF-á during fracture healing. The diabetic animals had rapid loss of cartilage in the healing bones, which was due to increased numbers of osteoclasts, cells that remove bone and cartilage. Factors that stimulate osteoclast formation were regulated by both TNF-á and a downstream mediator, FOXO1. These results suggest that diabetes-mediated increases in TNF-á and FOXO1 may underlie the impaired healing of diabetic fractures.
Alblowi et al suggest that "TNF-á dysregulation plays a prominent role in the recently identified catabolic events associated with diabetic fracture healing." In future studies, Dr. Graves and colleagues plan to "examine the effect of FOXO1 on mineralized tissue to examine how it may regulate factors that control bone resorption and osteoclastogenesis, in addition to effects it may have on osteoblastic cells."
I had my annual physical and my labs were all good except for my vitamin D was low. My doctor put me on a once a week vitamin D. I have always had good vitamin D levels and I haven't changed anything this past year except for taking provigil. In fact I've always been a big milk drinker at least 3 glasses a day and heaven knows I get enough sun in Arizona. I was wondering if there is any info that shows the provigil, depleating vitamin D?
Off the top of my head, USDA created daily requirements for vitamins like D shortly after the 30's, when rickets (which had been very common) interfered with the draft.
rickets was about bone density, long-bone growth and bowed/feeble legs mostly, especially in shut-in climates, urban centers and during child labor years.
Required adding it to milk and some other things like breakfast cereal, plus the food stamp program got the work and draft age population up to top fitness in the history of the world.
Higher D doesnt sound that dangerous, since as with natural sources like sunlight, it depends on the presence of some other nutrients for bioavailability, and does not become toxic (stored in fat-soluble places like brain and organs) no matter how much capn crunch with milk we eat.
might be wise to look up the combination foods that will make it absorbable and usable.