Posted 22 May 2008 - 01:15 PM
Posted 24 May 2008 - 07:48 AM
sorry my writings not good, could sound pretty strange - been dreaming all night and my head is fried.I just joined too.
That must be so good. must be an amazing feeling to have got there.
I've been thinking about what it takes to live with, survive this with no name for it, and with no treatment for this long, this much of your life. And what it takes to turn their view of you around.I know dx and treatment can't solve it all, but I really hope you find the meds that are right for you soon. How did it take them this long?
I'm pretty happy too - Not the same situation, but a little like it - I've had this 16 years, misdiagnosed - don't think I could've made it to 25 years, you must've made yourself strong. 25 years!
Yesterday for the first time, I saw a neurologist who smiled a real smile, and said she can't give me a final dx till the tests are done but she really thinks it is narcolepsy. She was good to me. She showed shock and frustration over how I got treated. It's like being told I'm human.
It's a whole new start. hard to describe. Strange to look out the window this morning and be able to think about what I want. some choices instead of subsisting. And then too there's all those losses from living with this undxd, all the stuff you can't afford to feel when you are just hanging on. There'll be time for all of it. And more time when I get meds and get more awake-time.
hope you find the right meds, really soon, and get to be awake to do all you wanted and need
Posted 24 May 2008 - 10:24 AM
My symptoms didn't hit & become a problem until I was about 23. I think I found out every little other thing that was wrong with me in the past 10 years other than Narc! Heart problems, PCOS, demyelination of the brain, B-12 deficiency, blah blah blah blah blah!
I was dx'ed with MS for the past 4 years. Well, a "probable MS" dx. I have spots in my brain and that seemed to take the docs down the MS path; only getting further away from the truth.
Having a neuro tell you that they think it may be MS, and tell you in the same breath that they won't prescribe meds or that there isn't any help for me until my spots get worse or show more progression of the disease 'MS'. Waiting around to get 'worse' is the worth feeling ever! Well, for me anyway.
When the spots in my brain didn't show any growth the last 2 years is when they decided that it probably wasn't MS and thats when just on a whim, my neuro said I should have a sleep study. The darn Sleep Tech basically told me I had Narc even before starting my day study. I had to have my day/night study flipflopped because I was sent home from the first one because I couldnt' sleep at night and was throwing up from anxiety. My neuro actually showed up during my day study (at night) and said he just had to come in to see the results for himself. I guess i fell asleep 4 out of 4 naps within 2 minutes, definitely dreamt....and that was after sleeping for 10 hours during my night (during day) study.
Anyhooo...yes, I have been down a long long road, just as many others have. It sux, but it was all worth it now that I know what the heck is up with me. And finally I'm able to tell my psych and my therapist to 'piss off!', that i'm depressed because of my disorder, and I'm not just MENTAL!
Posted 24 May 2008 - 03:33 PM
I know what you are all saying. I can say for certain that I started with symptoms when I was 16 years old and I am now 57 (ouch!). I was only diagnosed 10 years ago. Looking back now, I see how I was deprived of many opportunities and enjoyments that normal people take for granted. I believe that by not knowing about this hidden disability, I developed defense mechanisms that allowed me to survive the most difficult times, however I often ask myself if continuing this battle is worth it. Happy memories of my life fall far behind the unpleasant ones. Life with this disability has been the cause of several car accidents, home fires, miscarriages )7-1/2 months), employment instability, lack of interest in educational and career goals, inability to socialize, maintain friendships and ongoing embarrassement and humiliation. Inorder for me to continue this battle, I need to be certaintgb that I at like myself enough to make it worthwhile. Right now the only thing that I have left is my dignity and that too is hanging by a thread. Regardless of the careful monitoring of drugs and stimulants perscribed by mydoctor over the past ten years, my competency to perform my position at work is now being questioned and I am now faced with having to consider fighting for disability. I do hope that everything works out for you and you do get the meds you need. Perhaps knowing was not such a good idea for me
Posted 24 May 2008 - 08:50 PM
Personal message to "excuses," I am worried about you! Your post sounds hopeless-almost suicidal (I am a psych nurse), please reach out for help!!!
Posted 26 May 2008 - 10:35 AM
Thanks for the special note. Wish I knew where to get help though! I meet with my doctor who specializes in Sleep Disorders, and who is also a clinical pshyciotrist once a month, attend consultation sessions with my employer's Health Promotion and Wellness group and consult with my regular GP. My medications do help to get through each day, but the side effects that I already experience have prevented the increasing or changing of my current treatment. My GP is already concerned with the drugs that I am taking for my sleep disorder and sometimes I get the impression that she is not convinced that I even need them. She has admitted to me however that her knowledge of Narcolepsy and Cataplexy was limited. I thought that by knowing what was causing the weird symptoms that I have lived with for so many years would help, but in fact it seems to be just the opposite. The more the medical profession learns about Narcolepsy and Cataplexy, the more difficult it is becoming to obtain the right treatment. It was very obvious at my last Doctor's visit (Friday) that sleep disorder specialists are thinking that this disorder should be treated by neurologists; however neurologists believe that it should be treated by sleep disorder specialists. So the battle now shifts between medical specialists, and during the interim, PWN's are left, once again sitting on the back bench. My concern at this time is not with being suicidal, but with how long I can survive without harming myself and/or others due to this disorder - DOCTORS, EMPLOYERS, HEALTH PROFESSIONALS or any other member of society DO NOT UNDERSTAND THE SERIOUS CONSEQUENCES OF THIS DISORDER!
Posted 26 May 2008 - 06:30 PM
Thanks for the special note. My concern at this time is not with being suicidal, but with how long I can survive without harming myself and/or others due to this disorder - DOCTORS, EMPLOYERS, HEALTH PROFESSIONALS or any other member of society DO NOT UNDERSTAND THE SERIOUS CONSEQUENCES OF THIS DISORDER!
I am so glad you allayed my fear that you might harm yourself! I totally agree that this disease is very misunderstood, and that most folks just see it as a nuisance disorder. I was trying to explain to my pastor's wife that I am afraid to drive more than I already do, since I fall asleep so easily, she said, "oh take some crackers with you, and eat while you drive." No big deal, right! Never mind that my first sleep doctor, said, "if you lose 40-50 lbs all these problems will go away." I did lose the weight with much difficulty, one thing I had to do was stop using food to keep me awake, imagine how angry I felt, I lost the weight but continued to fall asleep. It was only after I went to another doctor who did the day time sleep test, that I got my diagnosis. Just being able to read the post from people like you has helped me so much to accept what I can not change.
Posted 28 May 2008 - 06:07 AM
Posted 13 June 2008 - 01:58 PM
I remember my 1st symptoms at the age of 5 where I frequently had HH and SP along with overwhelming and socially dibilitating nightmares 6 out of the 7 days a week. Thankfully, my nightmares finally stopped along with the HH at age 27. So I have been getting, what I feel, a good night's sleep for the last 3 years.
Since having children, my EDS had increased (which is likely cuz kids wear you out), and since I knew nothing about narcolepsy, I used to blame it on SAD (seasonal affective disorder) because my worst days were cloudy days. I'm a very active person..well...force myself to be for my children. These past few years have become years of frustration because I feel that my family is getting the butt end of this disorder. Increasing lack of motivation is tearing me away from the most precious parts of spending time with them..and doing FUN things with them. I feel robbed.
My nuerologist had prescribed Provigil. The first day was horrible, I was so wacked out and high...that I couldn't even drive to pick up my kids. I had to ask the neighbor. After that, I frequently ended up falling asleep on it because it made me worse than I was before ever taking the drug. I told him of the side effects and he upped the dose by another 200mg. That's when things went really bad. It was as if I had been drinking vodka to the point of passing out and waking with only an hour of sleep under my belt...but with no headache. I couldn't function, I was constantly dropping things, knocking them over, bumping into things (which I have many bruises now), the confusion and lack of conscentration was unbearable and all this while being EXTREMELY sleepy. It had hightened my symptoms by 5 times! After 6 days...enough was enough. I told the doc I was done. He prescribed 10mg of ritalin taken 3 times a day. I'm still feeling sleepy about 2 hours after taking it.
I swear I did soooo much better before taking any medication. Now my major concern is the long term effects of this drug.
Posted 23 July 2008 - 04:31 PM