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Narcolepsy Message Board and Help Forum
Message board for narcoleptics, friends and family. Ask/answer questions...or just get it off your chest.
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Hi all, Im sorry Ive barely been on, I get one day off for the holidays and the inlaws came in and stayed and me and the wife both got really sick on top of it lol. It was a good holidays just a little hectic, but arent they all. I hope everyone is doing great, I just caught up some and it did seem so, oh Good Luck Lindsay on the Avon you should also look into Mary Kay too it is also a good income source my wife sells it. I am feeling better with my heart. I made a good friend a couple of months back who is a doctor in the military and he checked me out and said it was prob just an anxiety attack from stress. Just a really bad one. Here is the kicker, I get a phone call Sat morning and had to rush to Mississippi when my Dad just literally fell out. From what I heard it looked alot like a Cataplexy Attack, but I found out today that he failed a stress test so they are going to further test his heart tomorrow. We thought it was a massive heart attack at first and didnt think he was going to make it to be honest, gave us a really big scare and to me really freaked me out from what happened thursday morning thinking I was having a heart attack myself. They still are thinking he might have sleep apnea too, dont know he hasnt even been to the doctors office in 24 yrs so they have no medical records on him lol. I also found out my dads dad died at 46 instantly from a massive heart attack, so naturally I have started thinkin alot more about takin my Provigil after Thursday, but I really dont have a choice and all stimulants are bad for your heart so what can you do huh?
An oral surgeon prescribed percodan for me once. But never again! I am normally a very peace-loving person. I am totally against violence. BUT when I took percodan - I tried to get my hands around people's throats to choke them! I didn't want to choke the life out of them, but my hands did. My brain would say,"Stop it!", but my hands wouldn't listen. They just kept right on going for the throat! I had NO control. It was scary---for the people around me, that is!
Sorry that I've been away for a while. I am 64 and have had N since I was 28 (diagnosed). Over the past year my sympton's' I have (thank God) stopped and the only thing I have to deal with now is not sleeping without interruption, as we all do. They say our decease gets better with age and I'm not sure of this but I wanted too share this with you all.
Charlie ; )
PS My grandson "Nicholis and Jessica are doing great" and I will post a picture soon..., love too all, Charlie
Hi Pat, Good to hear from you. I have so busy with the kids, helping them with all the grandchildren. I checkin to see how everyone is doing with there N. Today I'm a little tired, so I'm taking it easy and will head up to my daughters later. So far I haven't had a catapletic seizure in quite a while, maybe because my life is so uneventful or I'm just getting older. I will try to keep in touch on a more regular basis. Love to all and God bless, Chaarlie
Im Chris, nice to meet you, I posted about a month ago asking if anyone here had a answer to a question I had and you just answered it with this post. My doc told my that N in some cases has a tendency to get better around the approx age of 55-65. Im only 26 so I got a ways lol, but it is nice to know that there is truth in it, glad your doing better and nice to meet.
I am 26 and have been constantly tired for years. I can sleep for 15 hours at night and still need naps during the day. My doctors ran blood tests for years to see why I was always tired, including thyroid panels. I always thought that I was either overdoing it during the day or maybe I was sleeping too much and was tired from that.
I have had sleep paralysis for as long as I can remember. It scares me but I never thought much about it. I just figured it was my body waking up wrong.
About a year ago the sleep paralysis got really bad and it basically kept me from sleeping. I was too afraid to fall asleep. I read somewhere that there were medications to stop it so I went to go see my doctor.
He had never heard of sleep paralysis and when he did some research, he ended up referring me to a neurologist. The neurologist sent me for a sleep study which consisted of me staying the night and then one throughout the day where they had me wake up and go to sleep several times.
I was told that the sleep study was normal. But the neurologist said he was going to diagnose me with narcolepsy because I had several symptoms of the disease. The only thing I don't do is fall asleep randomly, I think that is called cataplexy?
He put me on Provigil, which worked wonders for me. I was awake and not tired for the first time in my life.
I recently saw my regular doctor (after a year of taking Provigil) and told him that I felt bad after taking Provigil for a handful of hours and that I got a nasty headache when it wore off. He suggested that we try cutting the dose in half (I had been taking 200mg).
Since he is a good doctor, I decided to follow his instructions and I felt a little bit better with the smaller dose.
Two days ago I was doing some research about side effects of Provigil, only to find out that it has Gluten in it. I was diagnosed with Celiac disease several years ago and I have to stay away from Gluten.
So I called my doctor to inform him that I figured out why I felt sick after taking the meds. He prescribed Ritalin.
This will be my 3rd day taking it and it seems to be working well.
My questions for you guys are:
1. Is it common to have a normal sleep study and still have narcolepsy?
2. When I was younger I was addicted to drugs and I don't want to go back to that, How addictive are drugs like Ritalin?
3. I have heard that you should take a break from Ritalin about once a week, is this true?
4. All of the research I have done on sleep paralysis says that people hallucinate and see some pretty scary things, I only recently realized that I was hallucinating because the things I see are things that I would consider normal, like I will see my boyfriend sitting on the floor playing with our dogs. Do any of you guys do the same thing?
First, welcome to the "Dream Team" :) Grats on recieving a diagnosis, it may not be the best in the world, but it's good to finally have answers, no?
Falling asleep randomly isn't cataplexy, that's sleep attacks. Cataplexy is losing muscle control, leads to sleep attacks for me sometimes (if I lay there long enough, I'll drift off) and has triggers like extreme emotion or flickering lights for some people. I think sleep attacks are where you feel the overwhelming need to sleep, ends in taking a nap usually, sometimes comes on too strong and we just fall asleep where we are.
1. Is it common to have a normal sleep study and still have narcolepsy? I think so, some of the symptoms wouldn't necessarily show on a eeg, like cataplexy. Also it may have been a day when your symptoms fall in the range of "normal"... diagnosis is more often made in consideration of a history of symptoms rather than relying on a single test.
2. When I was younger I was addicted to drugs and I don't want to go back to that, How addictive are drugs like Ritalin? I have read that ritalin has been found non-addictive, but that was just one article. Have you told your dr about the addictions? If you have and they agreed to put you on it anyway, I think you're safe ;-)
3. I have heard that you should take a break from Ritalin about once a week, is this true? Break when your doctor tells you, mine said that she was going to schedule one for me. I have also heard about the break thing, I would definitely ask before doing it though.
4. All of the research I have done on sleep paralysis says that people hallucinate and see some pretty scary things, I only recently realized that I was hallucinating because the things I see are things that I would consider normal, like I will see my boyfriend sitting on the floor playing with our dogs. Do any of you guys do the same thing? I hallucinate and confuse dreams with reality all of the time. I have a lot of scary ones too. I don't think it would need to be scary to qualify; I frequently halluncinate and do a lot of everyday tasks at inappropriate times, think I remember conversations that never really happened, etc. Something particularly scary for me are bugs on the walls... but less scary things include colored dots/ shapes.
Hi I recently got dianosed with narcolepcy and cataplxy and sleep paralisation. The sleeping thing at the night is so scary i wake up all the time and can not move i just see things. I use to tell my mum when i was younger that i though our house was hunted and that a ghost would come and sit on me during the night. I hate it when this happens i see all sorts of randam things from my partner being lay next me but i cant move to touch him and when i come round he not there. I see things like witches and it feels like they are lifing me up or shadows or random strangers in my flat that i have never seen before. I went to see my doctor as when i was laughing i kept falling to the floor i put it off for ages but then it happened when i was at swimming with my little brother i thought it was some kind off tuma or something. I have always been tired and can remember having arugments with my dad him calling me lazy and things. I have be dionsed for about a year i am taking provigil 100mg and at first they seemed to be working but now im taking 4 a day and they dont seem to be working. i tryed some other tablets for the cataplexy that they gave me but they gave me the worst headaches so i have stopped taking them i am waiting to go back to see my specilist but the clinc only runs onec a moth so i have to wait untill febuary. I went from working full time to part time but seem to be struggling even doin this i have a lot off time off work as im to tired or just dont wake up i feel like my work is getting fed up with me and i am scared i am goin to loes my job. i struggle to pay my rent and i just feel like everything is a constent struggle i can deal with the laughting and the sleep paralist its the the being tired and napping that is driving me mad and the way it makes me feel. i no my other half gets annoyed and fed up with it as i always fall asleep on him iv only been with for about 6 months and he trys but he doesnt understand i cant blam him for feeling fed up.
first i am so sorry for your trouble. so many burdens that i know are not your fault and certainly not imagined: trouble with work and keeping a job, the weariness, and financial uncertainty. also getting criticism and arguing make our home lives so hard, and what would help most would be support and understanding from loved ones.
it sounds like you are completely disabled. are you getting disability?
Hi there no i dont get disabilty and i do want to work i just want the right medication sorted out for me so i can live a normal life and carry on with my job. I like the job i do and i really dont want to come out of work all together. i rally just need to find the right medication for me but that is easyer said than done as for my work im at the point now where i really dont care what they do its not my fault and am just fed up with all of it now, But hey nevermind im at the specilist in febuary to give some more pills to rattle aroung inside me i swear if you shke me i would rattle haha no am only joking just keeping some humer. i feel better after reading some stories ETC from other people i just wish it was a quick fix but i no it is not .
The more I read about the experiences you guys have had the more I am convinced that I have had narcolepsy for years.
As I kid I used to see things. I told my mom they were ghosts. I grew up in a very pagan household and I come from a long line of psychics so, my parents just wrote it off as that.
I was so sick growing up that the doctors never really thought that my excessive sleepiness was being caused by something else.
When I was 20 I was diagnosed with Celiac Disease (an allergy to wheat gluten). Once I stopped eating things with Gluten in it I felt a ton better. But I was still always tired.
My doctor reran blood tests and everything came back normal. He told me that I was overdoing it.
I was working about 50-60 hours a week and going to college too, all while maintaining a 4.0 GPA.
I quit my second job and backed off some hours at my regular job. I decided to only take 2-3 classes a semester.
None of it helped.
It is very frustrating because I have been called lazy and I am anything but. I even believed for a long time that I truly was lazy and that everyone else was able to do all of this stuff and that I just needed to be a stronger person.
It is a big relief to know that there is something wrong and that it wasn't just me all these years.
We all seem to be first-class overachievers, and "lazy" is a tough criticism to hear. i think working 60 hours and keeping a 4.0 GPA qualifies you ... to look people right in the eye and turn away.
Rose, you are a champ. Maintaining a 4.0 GPA is no easy task for anybody. And you did it while working all those hours? I don't see how anybody could have ever accused you of laziness.
Sleep studies are sometimes inconsistent, although with diagnosis of N, the onset of sleep and REM are considered a firm indication unaffected by too many other factors. Keep in mind that the sleep lab experience is a stressor, with other variables at the time you get different results from testing some (or all) times.
i truly believe many parts of narcolepsy are underreported, because we have no way of knowing "normal" from "not normal". you may pick up some other experiences from the past as you go along, and understand them better.
as we get older, and as N seems to be latent in some of us until (a. brain cells deteriorate or b. new trauma/stress damages those cells or c. menopause or childbirth work some changes in our system) our condition worsens, i wonder if our past experience with drugs or meds may NOT reflect present susceptibility. your current response to ritalin might be more "dependence" upon it, but with less dramatic withdrawal.
taking breaks from ritalin might not need to be every week --- others have experience with this. someone please speak up here....
i get hallucinations, even really normal things like talking to someone who is not there. not sure if they are like the sleep paralysis ones while lying down (hearing someone come home, or seeing fairies), or if some of my hallucinatory visions during the day are not microsleep dreams.
keep in touch, please email me anytime if you want to speak privately. i am posting next our joint-effort "Definition Page", in case it may be useful.
Narcolepsy:
A chronic neurological wake/sleep disorder caused by the brain’s inability to regulate (control) “normal” sleep-wake cycles.
Considered to be a disorder of the normal boundaries between the states of sleeping and waking, narcolepsy is technically defined by excessive daytime sleepiness and sleep attacks, in conjunction with one or more auxiliary symptoms, which can include cataplexy, hallucination, and sleep paralysis.
The line between being asleep and awake can be blurred. Signs and symptoms may vary in severity but never truly go away.
The quality of life impact of narcolepsy is profound, struggling to complete activities of daily living: in one study, the impact was rated greater than living with Parkinson's disease.
Cataplexy:
An unexpected loss of power in controlling your body, specifically the loss of muscle control, almost exclusive to narcolepsy. Sudden weakness caused by anger, excitement or amusement. Temporary paralysis of the muscles controlling posture and body movement.
Cataplexy involves regional muscle groups and may result in symptoms such as a drooping head, sagging jaw, slurred speech, buckling of the knees, or weakness in the arms.
EDS (excessive daytime sleepiness):
Fleeting urges to sleep, involuntary sleep episodes, overwhelming urge to sleep, and decreased alertness throughout the day.EDS reduces motivation and vigilance, interferes with concentration and memory, and increases irritability.
Hypnogogic Hallucination:
Intense vivid images, sounds and tactical sensations that make things seem real even though they aren't. Vivid dreams while falling asleep or waking up. Dream-like sensory and visual hallucinations experienced as reality.
Auditory Hallucination:
Very real-seeming sounds, registered by the brain as "heard" and not "thought", often mundane speech and environmental sounds without other confirmation such as seeing. Disorienting and disturbing being unable to trust your senses.
SP (sleep paralysis):
Sleep paralysis is an inability to move or speak while falling asleep or when waking up. Generalized weakness upon waking or going to sleep, being conscious but unable speak, move, or breath deeply. May occur during micro sleep, and sleep intrusions during waking activity.
Automatic Behavior:
Trance-like behavior doing things on "auto-pilot" for some time. Undertaking routine tasks without being conscious of doing them and most often not remembering.
During conversation to jump from one topic to another or just trail off and stop talking all together. Movements may be slow or clumsy, speech may be slurred, may be unresponsive or wake up suddenly. May be unpredictable or illogical.
Falling:
Weakness, numbness, stumbling, dizziness, non-peripheral vision, "syncope", cataplectic muscle collapse, sudden onset sleep attack. Contributes to daily danger of injury and accidental spills, fires, breakage.
Migraine:
Extreme headache usually centered on one side of the head and accompanied by severe sensitivity to light and/or sound. Intense pain often causes vomiting. Migraines may be preceded and/or accompanied by "auras" which vary from victim to victim from dancing lights or "rainbow" visual disturbance, to full color "light shows".
Visual disturbances with or without headache pain (optical migraines) accompany migraine processes thought to be related to changes in blood flow in the brain. Episodes may progress from visual "auras" to temporary blindness.
Migraines are truly debilitating, rendering the sufferer incapable of moving without increasing the pain and making it difficult or impossible to think clearly. Because they are so pain intensive, migraine sufferers may take a few hours to a day to regain their energy and equilibrium.
Some triggers include red wine, alcohol, red meat, MSG, sodium, certain preservatives, medications, allergies, smells, lights, sounds and stressors.
Oversleeping:
Difficulty or inability to be roused from sleep, even through hours of repetitious alarms, calls, and visits. There may be no memory of the wake-up attempts, automatic behavior may be reported, may have dreams and hallucinations about wake-up attempts.
INS (interrupted nighttime sleep):
Intrusion of wakefulness during nighttime sleep, waking suddenly without warning or cause, feeling alert and briefly refreshed. Intermittent waking and sleeping at night.
Insomnia:
Difficulty or inability to fall asleep; may be physically and mentally exhausted, sleepy and prepared for sleep, then lie awake for hours. May be unstressed, comfortable and on-schedule, every habit of night time sleep the same as usual, and remain awake.
Micro Sleep:
Sudden onset sleep, involuntary and without warning, during activity or inactivity, at rest or in motion. Not associated with emotion or surprise as in cataplexy, also not conscious and able to see and hear as in cataplexy. complete transition from awake to deep dreamless sleep instantly, usually for only seconds.
Microsleeps can be so brief we are unaware of them, usually a fraction of a second. We may think something was forgotten, which was never actually heard, because the information was given during a split-second microsleep.
Similarly at risk for accidents (especially driving), injury and breaking things, and may awaken with shock and anxiety, disorientation, nausea and diffuse head and body ache.
Microsleep may be imperceptible to other people. Or one's head may drop and hang unnaturally, with the body upright. May slump forward (into a book, into a meal), jerk upright or repeatedly bite the tongue during microsleeps.
Micro sleep may repeat at intervals all day during periods of stress or illness, from unknown factors and aggravating conditions, possibly from chronic sleep deprivation, or chemical imbalance due to medication, diet, stress.
Depression Secondary to Narcolepsy/Cataplexy: usually misdiagnosed, and ineffectively treated.
Night Terror/Nightmare:
Deeply disturbing fearful dreams, often with sleep paralysis and inability to wake from the dream. Lasting fear and anxiety after waking.
Sleep Testing:
Overnight sleep testing monitors brain waves, eye movement, breathing, leg movement and other signs of sleep and dreams, while sleeping overnight in a sleep lab.
MSLT (multiple sleep latency testing) is a daytime sleep test, consisting of naps and waking periods. Sleep onset time, and the time it takes for REM sleep, and duration and kinds of dream periods are measured. Considered conclusive for diagnosis of narcolepsy.
REM (rapid eye movement) is the deepest sleep, when dreaming and rapid eye movement take place. Thought to be needed for refreshing sleep, and necessary for mental and physical function.
Muscle Weakness:
Strength of muscles may weaken, even with good tone. May be from lack of restorative sleep, from changes in oxygenation of the blood, from metabolism changes in blood sugars/proteins. Exertion may feel like there is strength but not endurance...like having a race car but no gas.Lost Time:
Hi Rose, Im also 26 and Ive been diagnosed for I guess going on a year and a half with Narcolepsy. I dont have Cataplexy, well if I do its really mild. For me the big kicker was in my sleep lab (Day Study) I fell asleep and was dreaming within 3 min of lights out, this was after a 7 hr night sleep study. I was out in under 5 min on all the naps during the day too so definately narcolepsy lol. Very similar to you I also started taking Provigil in 200 mg doses and it started giving me horrible headaches,so I was prescribed Imipramine(mild antidepressant) to counter the Provigil at night and to help me sleep at night. I guess about 2 months ago after 14 months of 200mg I barely slept for 7 days straight, so now Im down to 100 mg unless needed,as in if I feel tired around noon Ill take another 100 mg wich workes wonders, no headaches and no insomnia. N is a up and down road and constantly changes so I guess we just build up a strong tolerance, I just really fight it and dont let it get to me. I dont recommend any illegal drugs at all of course. I dont know alot about Ritalin, but I do know with children they tell the parents not to give it to the kids on the weekends. I think alot of children just arent raised right and really dont need it personally, and thats why these kids end up with a heart attack at 15 or psychotic, but that another story lol. I hope this helps and feel free to ask anything, I or anybody here will help.
I have N with C, my 23 year old son has N, but no C (yet). I am concerned about addiction becoming a problem. It sort of runs in my family. So I work closely with my sleep doc on this. It might help if you take it only when working or driving. That way you'd at least have a break in the cycle often. I especially try to monitor my son's dosage carefully. He's still young, and I'd hate for him to become too dependent on meds. You could also talk to your doc about which meds are least addictive. But I'd start with some online research on all possible drugs used to treat N. you can find out a lot by just doing that.
Hi Everyone , Sorry It's been so long since I posted . I am ok .I went to my friend's funeral and it was rough but I made it . Only had one cataplexic episode and fortunately my husband was right there to catch me. Days later my aunt had a huge stroke so I took a leave from work,went to take care of her. So zero computer access until now. One day one prayer at a time . I am still reading all the post to catch up to see what is going on w/ everyone.Take care and thanks for checking on me Pat.
My son is a senior in high school. He is currently taking AP Psych. His teacher actually taught one day on the subject of Narcolepsy. Would you believe that this teacher told the kids that C is a type of sleep attack and when the person collapses it is because they fell asleep! My son told her that during a C attack, the person is actually aware of what is going on around them. I was so proud of him! But, we all cringe at the lack of acceptance, and understanding for N. This is an example of why there is such a misunderstanding.....its called misquided teaching.
My understanding is that the bottom part of the brain goes asleep and the neurons in the spinal column come out of alignment which causes the lack of moment. Is this correct?
to some degree I think the teacher is right. According to the documentary made in England titled "when i fell asleep in the morgue", one bio chemist thinks that because of our lack of hypocretin cells, and our brains ability or inability to regulate sleep wake cycles, we go into rem, during a cataplexy attack, usually triggered by emotion but also fatigue and with the lack of hypocretins to keep our muscles functioning normally, we loose our muscle control. I know that sometimes when i've fallen to the ground it wasn't because of an emotinal trigger, but actually falling into rem sleep and loosing muscle control. i am conscious and aware but in that place that is somewhere between asleep and awake.
When I was in high school I had a few teachers tell me that it was impossible to have N the way I 'claim' to have N because no one with narcolepsy can hear things around them when they 'fall asleep' (i.e. cataplexy). They pretty much thought that I was faking it. So I can understand where you are coming from but at least unlike most people the kids in your sons class can now say they have at least HEARD the word narcolepsy before. And now that they know they MIGHT even tell others as well except this time, thanks to your son, they will be giving out the right information.
i notice that my C and related episodes are slightly different than i have heard from others: when i fall like a tree, i can stand right up again. when i collapse paralyzed and breath is shallow, it will take me a few minutes no matter if i am lying in the road or the rain, or fallen on something that is hurting me.
because i am unresponsive, i worry about getting cpr or something. because C ofen makes me lie there and jerk around, i hope people will use the protocols for epilepsy and wait it out.
Mindy, bravo to your son.
as for education: even current med journals, and some curriculae in med schools might be outdated, and public schools are notorious for updating some/most data in every single subject. books that are still "good enough" are required reading (like the ones that still dont mention plate tectonics, but have other accurate information about geology, that sort of thing). i have seen such old textbooks in my kids' hands.
the teacher might have misunderstood, or partly understood. i was just relieved that he didnt say C is psychosomatic or a mental disorder.
This message has been edited by patlittlejohn on Jan 10, 2009 11:52 AM
portrays cataplexy as narcolepsy. Every movie,TV show, and even some documentaries I've seen show someone taking a dive in a bowl of soup or some other silly crap and call it narcolepsy! Most people have never heard of it, and the few who have are the ones who saw these misrepresentations of it. So they don't know the difference. And you know how people like to laugh at the misfortune of others, so word gets around. Being misinformed is so much worse than being uninformed. And by the way, I have never been asleep or in REM state during a cataplexy attack.
Hi guys hope everyone is doing well. I hope I can get some feedback on this. My chest starting hurting about 9am this morning, thought I was having a heart attack. Hour later most pain became minimal and I never had numbness in left hand and all pain was on the left side of my chest, right over my heart, not telltale signs of heart attack so Im guessing maybe anxiety attack. Usually when I have anxiety attack I shake and know exactly when they are happening, in this case I dont. I dont know if anyone else has had this happen to them or not. I still feel like I got kicked a good blow to the chest. All in all it was pain in the chest (left side), shortness of breath, dizzyness and fatigue, and I guess some strange sensation in back of my head close to my spine too. I dont really know what it is, Im home now and my blood pressure and heartrate is normal. I know Provigil can do crazy things so Im kinda worried. I live less than a mile from an excellent hospital so if I need to go its right there, see what you guys think. Ive been under extreme stress with my job for about the last month and I know that has prob. everything to do with it, just want to know if anyone else has had this happen to them.
I have very similar side effects when I take provigil. That is why I don't take stimulants anymore! (Just know that all people experiencing a heart attack don't have left side arm numbness). It would be good to have a cardio work up and make sure everything is ok. That is the problem with prolong use of stimulants, it causes blood pressure to rise and is very hard on the heart. I just choose naps over stimulants, although I realize that the younger you are, you have work, family and the energy to do the things that people your age do and of course the disire to be normal. Sometimes I would experience anxiety at the end of the day, extreme shaking, headache, dizziness or the feeling of just wanting to jump out of my skin. It's such a catch 22 situation for us. We hear all the bad things about amphetamines, particularily street drugs, but the rx ones are not different in their side effects. I remember reading several articles years ago about teenagers having heart attacks from their prolong use of ritalin for ADHD. Just because it is a legal rx doesn't make it less risky to our bodies.
I feel some better today, Im keepin a steady check of my blood pressure and i noticed last night that it would flux from about 117/72 to about 80/60. Im going to see what today does, my chest still hurts but really feels like maybe a strained muscle wich is very likely with my job. If i continue having problems today it will definately warrant a trip to find out whats wrong. thanks alot for the advice.
My brother-in-law thought he was only having a bit of indigestion. No left arm pain or numbness. So, he took a dose of pepto. Later that night, he died from a heart attack. Age 53. Don't mess around with it. If at any time you think even for a second, "it may be my heart", then go!
Almost 4 years later, my husband grieves deeply for the loss of his brother. If not for you, then do it for those that care!
Christopher,
Anyone who thinks he is having signs of heart problem, should be at the Dr.s. At your age I
would guess a muscle strain, but it should be checked. I had a similar case about 7 years ago.
I was doing some heavy work and I was sure I was having a heart attack. The more I checked my
blood pressure, the worse it would get. Finally they gave me a stress test and convinced me that
my heart was okay. I am taking Dex, 30 mg daily, and before that I was on 20 Desoxon (total of 40
years) Over the years my blood pressure has elevated some.
From Cedars Sinai website http://www.cedars-sinai.edu/5186.html?gclid=CPnX5d3ehJgCFRwwawodjE_RDQ
It does say that over 35, men with chest pain should be checked out right away, so you are probably being cautious and prudent, even though i find it alarming. i keep forgetting how i felt (physically) in my 20's. i would watch for that clammy feeling, though, and if your wife says you look terrible or something.
" A heart attack may be severe enough to cause death or it may be silent. As many as one out of every five people have only mild symptoms or none at all, and the heart attack may only be discovered by routine electrocardiography done some time later.
Not everyone has the same heart attack symptoms when having a myocardial infarction. Common ones include:
About two out of every three people who have heart attacks have chest pain, shortness of breath or feel tired a few days or weeks before the attack
A person who has angina (temporary chest pain) may find that it happens more often after less and less physical activity. A change in the pattern of angina should be taken seriously.
During a heart attack, a person may feel pain in the middle of the chest that can spread to the back, jaw or arms. The pain may also be felt in all of these places and not the chest. Sometime the pain is felt in the stomach area, where it may be taken for indigestion. The pain is like that of angina but usually more severe, longer lasting and does not get better by resting or taking a nitroglycerin pill.
About one out of every three people who have heart attacks do not feel any chest pain. These people are more likely to be women, non-Caucasian, older than 75, someone with heart failure or diabetes and someone who has had a stroke.
Faintness
Sudden sweating
Nausea
Shortness of breath, especially in older people
Heavy pounding of the heart
Abnormal heart rhythms (arrhythmias), which occur in more than 90% of the people who have had a heart attack
Loss of consciousness, which sometimes is the first symptom of a heart attack
Feelings of restlessness, sweatiness, anxiety and a sense of impending doom
Bluishness of the lips, hands or feet
Older people may have symptoms that resemble a stroke and may become disoriented
Older people, especially women, often take longer than younger people to admit they are ill or to seek medical help
During the early hours of a heart attack, heart murmurs and other abnormal heart sounds may be heard through a stethoscope.
Because a heart attack (myocardial infarction) can be life threatening, men older than 35 or women older than 50 who have chest pain should be examined to see if they area having a heart attack. However, similar pain can be caused by pneumonia, a blood clot in the lung (pulmonary embolism), pericarditis, a rib fracture, spasm of the esophagus, indigestion or chest muscle tenderness after injury or exertion. A heart attack can be confirmed within a few hours of its occurrence by:
Electrocardiography (ECG)
Blood tests to measure levels of serum markers. The presence of these markers shows that there has been damage to or death of the heart muscle. These markers are normally found in the heart muscle, but they are released into the blood when the heart muscle is damaged.
Echocardiography can be performed if the above tests do not give enough information
Radionuclide imaging can also be done
I was thinking about going to StanfordU so that I can become a test subject at the center for narcolepsy. Has anyone ever been there? Or has anyone heard about the program what the details are maybe? I live pretty far from Palo Alto CA and I'm scared just thinking about being so far from home. I dont know if I will even be able to get on a plane by myself (I hate flying). I mean I live all the way in PA and I bet it would be a long flight and an expensive ticket to boot, but it would be great if I can help other people like me, people like us. And have some type of hope that I wont always be this way. To be able to sit though a movie, walk my dog, and maybe even drive a car one day with no trouble at all. That would be great. I'm still waiting for them to call me back though so I still dont know if they want me to do it. They make you fill out this long sleep log and its a pain in the butt. I'm sure it will be worth it though. oh yes and by the way HAPPY NEW YEAR!!! And thank you all for helping me though another year. I would have no one to talk to about this stuff without you guys.
check into travel with disabilities regs: i remember something about a companion fare. it might make it possible for someone to fly with you, so dont rule out Stanford because of that challenge.
I have no one to come with me. Unless I wait for summer then I can take my mum but they want me to come out there as soon as possible. So I have to go alone but dont you worry! I will be brave! At least I will try to be...
i've had thoughts along the same line, many times, but as Phil stated what's the point. i think anyone with a chronic disease or disorder is always looking for that one miracle around the corner and we are no differant. the stanford department has many narcoleptics that have participated in their studies and to what avail? it's a matter of money for research and lets face it we're at the bottom of the barrel. My feeling, as with any chronic disease or disorder, is that the drug companies rule this country, the big bucks are being made in the production of drugs that treat symptoms, not cures.
I talked to a woman over there who is in charge of the narcolepsy center, she has Narcolepsy too and she was really great to talk to. She has a great understandng of what we go though and would like to help me. Although as it turns out I have a pretty "rare" case of N and it has a lot to do with the fact that I am black. The N genes in black people are differnt for some reason. So they would like me to participate in a study. I'm not looking for a miracle I just need some help and I would like to help others if possible. Do you really believe, Pam, that just because they didnt find any really great treatment yet means that they are never going to? Did you know that ten years ago no one even knew WHY it was that we sleep? How could you expect them to come up with any type of cure for something that they hardly understand? It is true though that if it were up to the drug companies no one would ever get 'cures' for anything. But there are a small handful of people that are willing to help and I would like to contribute to that as well. Phil when you went to stanford what was it like? Why do you think it was pointless? I have no clue what to expect and it would help me out a lot if you told me what it was like.
You must be talking about Mali, Rebecca.. she is a wonderful lady. Please tell her Melody that used to work at TAS says hi and hopes she is well. Enjoy your trip and I appreciate your willingness to go there and be of some help. Bless you.
Yus! It was her! Shes real nice. And I will tell you say hi and also tell her how awesome you are for creating this message bored. Thank you for wishing me luck I will need it for sure.
i look at how young you are, and the great things you can do in your life, and i want Stanford to be offering you every kind of help.
then i look at my life and the remains of what i worked for, and i think being a lab rat would be fine.
i am not trying to overdramatize it; in the course of my day i spend more than 90% of it just trying to feel ok. any small thing i do to support Jim, or check in here is all i have to "show" for 24 hours, which just makes me sick at heart.
if you are going to attend college somewhere anyway, the extra you could contribute to understanding would be cool, but dont go and dont stay for just that.
when you fly, get it on record that you will need a wheelchair; God knows if you are alone with connecting flights, and waiting at gates, it will be wise: you will not fall, or go unnoticed that way, you will not doze in a chair and be left behind. and there are other small and big considerations they will make.
a ticket agent will not just "direct" you to a gate 1/2 a mile away for your connecting flight, boarding right now.
plus, if there is a delay or flight cancellation, i presume they dont want anyone sitting in terminals in a wheelchair overnight.
just do not hesitate to ask for the help they legally must extend to travellers with disabilities.
This message has been edited by patlittlejohn on Jan 11, 2009 8:24 AM This message has been edited by patlittlejohn on Jan 10, 2009 11:26 AM
I am in school but I will be done before next year maybe sooner if I step it up. I dont know how long they want me to be gone for or even if they want me to go at all yet but I do know that they want my blood. And I know what you mean about not having much to show for in each day I feel like I'm just sleeping my life away sometimes. I just dont want to live like that anymore so I have to do SOMETHING or else I'll just wake up every morning wishing that I did. I will have my mum talk to the travel agency for sure in that case.
And I live in the U.S. In Pennslyvania not too far from NYC actually. so I should be fine. Thank you for the advice too though. If I ever get my blood to them and they do want me to come then I will. But school still comes first but like phil said by then they might have better treatment. Although I dont know if the new treatment he is talking about will help with my 'rare forn' of N.
remember that talking heads song where he sings
same as it ever was, same as it ever was
stanford can't test you for anything the people in your area can't
if you do go to stanford talk to mali and make sure you get the right doc, the second time I went to stanford I was in a hurry and got a dork
if I was your dad I would have the better docs in your area check you for everything, hormones MS bla bla everything MRI
like I tould you along time ago go to doctor (mrs) fry in philly
you can send stanford blood and spinal fluid for tests you don't have to go
I had to go,I hope I understand how you feel
what I think ? you are going to have to go through the hell of changing pills till something works and if you gotta go through that you need a doc that has alot of flexibility and experience with dificult cases thats who you need to find and by the time you got through with that orexin could be on the market and it might have been pointless
Where in philly is this ms fry? because I have seen alot of CRAPPY doctors in my area and hardly no good ones. At my regular doctor office they all think I'm nuts just for coming out of the house with N all the nurses and everyone knows me there and they always say 'You cant just go around passing out everywhere'. Which at this stage in my life I'm like: duh. I did talk to mali she was great. I had so many test done you have no clue test on everything from my heart to my unterus and everything in between and beyond. They did find a problem with my heart though there isnt much I can do about it now. And while it IS TRUE that I can get the same test here that I can get at stanford I dont have any great doctors to give them to me. Nor do I feel like I hav any REAl answers as to why I am this way. Part of me feels like there is a problem that we are not catching like there is something I am missing. How long did you stay at stndford? a week? a month? a year?
June M. Fry, MD, PhD received her Doctorate in biochemistry from the University of Pittsburgh and her Medical Degree from the Medical College of Pennsylvania. She completed neurology training at the Neurological Institute of New York, Columbia-Presbyterian Medical Center, and a clinical elective in sleep disorders at the Sleep/Wake Disorders Center at Montefiore Medical Center, New York.
Fry came to the Medical College of Pennsylvania in 1981 to start the Sleep Disorders Center which was accredited by the American Academy of Sleep Medicine (formerly ASDA) in 1984. With an emphasis on patient care, education and research, the Philadelphia-based Center is distinguished as one of the largest and most outstanding full service sleep disorder centers in the country. Board certified in sleep medicine and neurology, Fry is the Medical Director of the Center for Sleep Medicine in Philadelphia and is recognized for her work in the areas of narcolepsy and restless leg syndrome, as well as sleep disorders in general.
In addition to her professional qualifications, and numerous research publications, Fry is an active member of professional societies. In 1990, Fry was appointed to the National Commission on Sleep Disorders Research and worked with the other commissioners to prepare a national plan for Congress. From 1993 to 1997 she was a member of the Board of Directors of the American Academy of Sleep Medicine and served as the President in 1995-96.
happy new year, Angel! did you have a good Christmas? and a bright and hopeful new years day?
i know you are going to get back online and your living situation (ok, basically money!) will get out of crisis.
keep your family near you as much as you can, i know you are a rock to more people than you can imagine. email me anytime, and if you want to call, i will leave the ringer on night and day.
the days since the first have just been rolling forward in more and more wonderful things here: yesterday Jim went to Phoenix to baptize all of his friend's employees at a small service, only to find that several more people were eager for their chance, too; there were 9!
the pastor at that church took Jim aside, and amazed, told him it was more than ever had been baptized there at once.
we get wonderful reports every day, and a series of healing and worship meetings are forming until a whole week at the Colliseum in Phoenix in May. some locations are needing to be bigger, unlikely people and organizations are involved. things we began to see and hear a year ago are just blossoming.
friend committed suicide & narcolepsy in overdrive
by Eva (no login)
*Sorry about posting twice but for some reason my name didnt show up the first time * Eva
Hi Everyone,
My friend of 15 years committed suicide Saturday and my narcolepsy/cataplexy is beyond awful. If that's not enough,when I need to be awake I can't hold my eyes opened but at night I can't sleep, can't concentrate so trying to keep it together at work has been mission impossible. The memorial service is tomorrow and my biggest fear is collapsing .When my mom passed away my narcolepsy took over and I literally slept thru her funeral. During times like this how do you keep it together ? I am already freaking out . Eva
Does anyone know why? Did she leave a note? I know you are a bundle of mixed emotions right now. At times like this we tend to jump from one emotion to another constantly. Do you have other friends to lean on to help you through it? You can always depend on your friends here to understand how you feel, and CARE how you feel. Remember that as you go through the grieving process. There's always someone here for you.
please know i am praying for you (and crying with you). and you would be wise to stay seated, dont let what others think matter at all... if you were elderly or had bad knees, you would do it, so dont be too proud to stay in a pew, on a folding chair, or just plant yourself against a wall. snag someone to be by your side all the time or as long as you can. children can be more understanding, more accommodating and less judgemental... dont wait to grab a strong one. or link arms with someone.
if you want to talk, email me for my number, Honey.
God bless and comfort you,
my wonderful friend passed this way about a year ago.
I am so sorry for the loss of your friend. I would hesistate before attending and send my condolences with a friend or with flowers. Whatever decision you make, I'm sure everyone would understand.
this ad about motrin use (ibuprofen, also other brand names) syndrome is running on tv, i believe it is a new lawsuit, but doctors should have been limiting the long-term prescription of ibuprofen for a while (2005?!). sadly, our neighbor's doctor seems unaware.
i know i have posted that i used naproxyn and ibuprofen long=term when i could not get scrips for C. i dont recommend it now, and hope i did not add to anyone's trouble.
Advil (Ibuprofen) was approved for public use by the FDA in 1973 and is considered the first non-Aspirin, non-Acetaminophen based non-steroidal anti-inflammatory (NSAID) medication. It is sold under various other brand names including Motrin, Children's Advil, Children's Motrin, Medipren, Nuprin, Pediacare Fever, etc.
Ibuprofen found immediate popularity with Physicians and the general public when it was approved for over-the-counter (OTC) sales in the United States. In many cases it exhibits the milder stomach effects of Acetaminophen (over Aspirin, a powerful stomach irritant) without as much liver and kidney toxicity, supposedly allowing for higher dosing and longer use.
Stevens Johnson Syndrome and Toxic Epidermal Necrosis (SJS/TENS) are serious and life threatening skin disorders believed by many to be the result of an adverse reaction to drugs, including NSAID medications including Ibuprofen, Cox-2 Inhibitors and others. While viral infections and some forms of cancer can also cause the condition, the Stevens Johnson Syndrome Foundation states that the leading cause of SJS/TENS can be traced back to adverse drug reactions.
*** The symptoms of SJS/TENS include painful blistering of the skin and mucous membranes, which in many cases is preceded with flu-like symptoms and a high fever. As it evolves, the skin can literally slough off the victim's body. In addition, it tends to affect the eyes with mild to severe conjunctivitis, all the way up to severe corneal perforations. Left untreated, SJS/TENS is life threatening. In many cases, SJS/TENS patients are treated in Intensive Care Units and in Burn Units. ***
Many Ibuprofen medications are sold with no warning about the potential for SJS/TENS. In fact, most, like Children's Advil, did not contain any label warning until rather recently. Many patients took this medication without knowing the potential for this dangerous side effect, and many developed SJS/TENS as a result.
In February 2005, a group of Physicians and victim's families called on the FDA to warn the public about the potentially fatal skin condition associated with Advil and other Ibuprofen based formulations. About four in every one million users develop the condition and Ibuprofen remains one of the most popular and regularly available OTC painkiller/NSAIDS in the world today, used by billions of people worldwide. Reports of SJS/TENS reactions due to Ibuprofen have been increasing with the FDA's Medwatch Program.
Children's Advil and Children's Motrin are commonly utilized painkillers for children between two and eleven years of age. While this allergic reaction has been reported in adults, it has been noted that there may be a trend where SJS/TENS reactions are increasing in children due to the use of Ibuprofen based pain formulas.
Register your Ibuprofen SJS/TENS Complaint
If you or a loved one has suffered from SJS or TENS, you may qualify for damages or remedies that may be awarded in a possible class action lawsuit. Please click the link below to submit your complaint and we will have a lawyer review your Advil complaint.
At LawyersandSettlements.com, it is our goal to keep you informed about important legal cases and settlements. We are dedicated to helping you resolve your legal complaints.
This message has been edited by patlittlejohn on Jan 12, 2009 6:29 AM
my internet connection is to slow to go to all these drug company web sites to see if they have any new drugs in the research pipleline for narcolepsy (I am thinking mostly of orexin agonists)
i have not dropped this search, Phil. theN and C are kicking me around.. my daughter with Asperbers is walking out on her husband and small children, i feel so helpless.
oh c**p! sorry Phil, having a fit right this second, hate to hear that and i know she will live a life in peril like mine does, and it is all i can do to trust they will be ok.
i recognize on the phone that nothing i say is getting through to her, and i fear losing contact if she falls on hard times.
i do not say this lightly, any of it, i carried such a burden into church yesterday i just sobbed the whole time. i will hold our daughters and grand babies in prayer together from now on, Dear.
~~ about a connection between Aspie's and N... autism is just too widespread to fairly guess. there was a milk scandal in Hawaii while i was pregnant (pesticide in cow's feed), plus she had an unusual reaction to her second DPT vaccine as a baby, and a high fever with convulsions even younger. it could have been anything.
hello all, how is everyones new year so far? i have not been on here in a while, the holiday vortex sucked me in and i'm just now getting back on my computer. I have missed you guys. Did anybody do anything cool for the holidays? or did everyone at least get some type of rest? I hope so, we have a whole new year, which i think is going to be a good one, hard but good. Pat and Pam hope all is well with you and your famalies. I still am thinking about our meeting it was so awesome. I think my project is going to take longer then i thought(go figure) but when it is done its going to be startling, in a good way. Anyways i love you all and am so proud of us all becuase we keep moving. even when we don't feel like it, we do and i couldn't keep moving without you guys.
in the 80's I donated money to lobby the orphan drug bill through congress, 1999 they found the cause of narcolepsy now 10 years later nobodies workin on it, but in a few months an orexin antagonist will be approved for insomnia
I feel like running around naked screaming four letter words
you did a good thing, Phil. a little money gave a little power to this, and if the orexyn agonists are usable off label, or lead to a treatment for us, it will be an end-run, hail Mary sneak TD for us invisible little guys.
When you start to run around naked screaming, call me. I'll bring my camera! I would volunteer to do the same, but I look pretty scary naked! LOL! You remember the old joke about the streakers in the 70's. Two old guys saw two old ladies streaking and one asked the other," What were they wearing?" The other spoke up," I don't know, but it sure needed ironing!"
Well you can always do like Ron White(Blue collar comedy tour) and just sit on a bean bag naked eating Cheetos. Takes a lot less energy and well Cheetos are great. lol. Great job Phil, hopefully that med will be great.
So I decided to try and be productive with a stay at home job. So I signed up for Avon.
If you like any of the wonderful products Avon sells ( I know I do, I grew up with my mom and grandmother using them!), please check out my site and tell your friends and family!
I really appreciate your help getting my name out there. If anyone is interested in becoming a representative, let me know and I can refer you... just email me your contact info and I'll submit it for you!
Here's my site, unless you live locally, though, you can only have it delivered direct ;-)
www.youravon.com/lropiak
Thanks guys, hope you don't mind some minor spam. <3
Good luck, honey. i always did well with low-key people to people jobs. wish i still had the strength to take housecleaning work. that was easy money, and i could find one for every day of the week any time i wanted.
Hi. The very best of luck to you and your new business. Avon is a terrific line of products and you should do well with it. I am new in this state and I know very few people except for my brother and sister-in-law. Take care and I will keep you in mind if I ever want any Avon.
I was reading a book the other night, Vampire Hunter D Fallen Angel, and it referred to this song that some vampires would sing that made any who heard it fall to sleep. I could relate because I can hear that song playing all the time tempting me with sleep.
A very Happy Healthy New Year to all. Sorry I haven't been online but with the holidays, and I was away for the weekend my time was limited.Take care and I hope this year is better for all.
Have a wonderful new year! I'll be gone 5-10, starting school again 12 so not sure how much I can respond but I want to say hi and I hope you guys have enjoyed welcoming in the New Year :)