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dragonseye_77 <dragonseye_77@...> wrote:
Hi Cindy!My heart goes out to you! Have any of the doctors tried a med holiday with you? This is when you are off all or most of your meds for 2-4 wks. I know the pain medications would be untolerable, but what about the meds for the narcolepsy or any of the meds that you can tolerate not taking for a few weeks. I was in a walking coma before I did this. My previous doctor had me so drugged up that I didn't know what I was doing. I lost hours, days and even weeks at a time due to the over dosage. The reason I knew I was at work was the paper trail I left.Anyway, I am on a lot less meds after doing the med holiday and I am able to work part time now... but it is a struggle every day. I never thought I'd pull out of my depression, but with supportive from my friends and family I managed to do it. My parents are the greatest people in my world, they stand behind me and support me no matter what. I do fall down, sometimes very hard, but I know that the sun will shine again.I wish you the best of the luck and always keep your head up. We are all here for you as well as your family! =)Sweet Dreams,Erin
Cindy <cinmcw@optonline.net> wrote:Hi Vickie,Regarding the cause of pain, I have fibromyalgia, arthritis, myalgias, arthralgias, bursitis, tendonitis, pinched nerves, herniated disks in my neck, chronic, severe sleep deprivation, severe sleep apnea that does not seem treatable, etc. In addition, the doctors say the amphetamines are worsening the pain...what might cause a moderate level of pain translates to excruciating pain in a person who takes amphetamines.I don't have any children and this is a very painful (emotionally) topic for me...I wanted children more than anything. Now I'm 44.Is there any time left for me, and will anything make me better before it is too late?No way, I can't work. I used to be a teacher, and I loved it. I switched careers to social work, thinking I could better manage that. Enjoyed that, too, but it didn't work. Losing my career is one of many losses. I can't even function. I used to be the most organized person, a neat freak, too. To the point friends and family used to joke about it constantly. They don't anymore. My apt. is in a shambles. So is my life. Once I was unbelievably motivated, energetic, very involved in lots of things. All that is gone. Graduated high school in 3 years, earned lots of college and graduate school degrees. Had a great social life. Lots of interests and hobbies. Successful in my career. Etc., etc.Doctor says losing motivation is a result of years and years of trying and being unable to accomplish even small tasks and goals. I've had N for 20 years now. The complete loss of motivation, the extreme fatigue and weakness, and the chronic pain have been my struggle for the last five years. The pain has worsened substantially in the past year.I also suffered from hypoxia 3 years ago...I almost died...bled out: massive, rapid blood/oxygen loss. Long story. Anyway, I struggle terribly with an inability to focus/concentrate as a result. I was going to sue the doctors who did this but the lawyer had a real problem with this because I have narcolepsy and sleep apnea...which can also cause these symptoms (even though I did not suffer these symptoms prior to the hypoxia). He was willing to take the case but did not think the outcome would be favorable. In addition, I needed $5,000 for an expert witness (physician), and I did not have this, of course, because I am living well below poverty level...and this is the reason I did not pursue the case.Now I live in a senior citizen complex (HUD Housing), and I get out (to a doctor or for a quick errand 1 day for a couple of hours every 1-2 weeks). Emergency room doctor (recent visit) told me there is no way I can function being on all of the medications I'm on (and I didn't even tell her this or anything at that point).Sad state of affairs. I've been to tons of doctors over the years, too many to count. I have just about lost all hope. I thank God for making me such a stubborn person...and for my loving parents...otherwise, I would not be here. I tell my parents, when they are no longer here, I'm leaving, too! I wouldn't want to hurt them, otherwise. I really hate to be a downer for anyone...and I apologize for this.Cindy----- Original Message -----From: VICKIE KEMMERLINGSent: Thursday, September 07, 2006 10:42 AMSubject: Re: [Narcolepsy-Chat] Fellow Narcoleptic' s oh my where is all your pain coming from? We all gotta stick together. Do u have children ? 6 different types of sleep disorders? How can that B? I am sorry I am glad you have a sense of humor it is good 4 u :) I cant handle N and it not even near as bad as your situation! Do U work?Well I gotta go 4 now Take care Keep your head up:) Vic
Cindy <cinmcw@optonline.net > wrote:Yes, Vickie, NORD pays for my Xyrem in full, thank God! I could never afford it! Never! My monthly prescription cost is $3,000! They are out of their minds!Thanks for the encouragement. I really need it right now. The past 6 months have truly been a nightmare. The pain I experience is out of control. I took too many tylenol one day (in addition to my pain killers, anti-inflammatories, and muscle relaxants) in too short a time (in an attempt to gain some control over my pain), and ended up suffering from Tylenol toxicity...had to go to the emergency room. That was pretty bad. They told me I need to be involved in pain management control or something like that...but none of my doctors even suggest this. I will follow up on this, though. The problem is, I feel so bad every day that I cannot even motivate myself or find the energy or stay out of pain long enough to do anything, including calling or getting to the doctors. Forget about cleaning my house, getting paperwork done, errands, etc., etc. I'm having a very tough time. So THANK YOU! I really needed to hear those words. Not much support on this end either. Makes it harder, I think. Well, I still have my sense of humor, thank you God! Makes life easier, that's for sure! Off for my nap...hope this email made sense...I'm exhausted, as always! :)Cindy----- Original Message -----From: VICKIE KEMMERLINGSent: Wednesday, September 06, 2006 10:13 AMSubject: Re: [Narcolepsy-Chat] Fellow Narcoleptic' s HI so you have insomnia. Well that is a bummer too. But with help from nord they pay for it right? I feel for you I hope they find something to help you Take Care and dont give up yet I know it's hard I dont have anyone supporting me except strangers.Hi Vickie,I'm sorry to say it's not helping me to feel better at all, but don't let my experience discourage you. Lots of people are benefitting from it.I simply don't understand it. It's enabling me to sleep for 5-8 hours per night whereas before I was only able to sleep 4-5 hours per night, so why don't I feel better? More rested? In fact, I feel worse! Getting through the day is a nightmare. I feel absolutely awful from 5 or 6am (when I get up) until 6 or 7pm. I mean, so awful, I wish it would just end! I think this is a side effect I am experiencing...I may have to go off of Xyrem, but then I return to no sleeping...and the long-term health problems that inevitably brings. Oh, well. I'm at a loss at this point.BUT, I wish you luck and hope you are one of the lucky ones! Lots of people have said their lives have changed dramatically as a result of using Xyrem.BTW, the cost is about $1,000 per month. The program will send you an application (not too long at all) and then it takes a few months before they approve/disapprove...don't know why it takes so long. Good luck!Cindy----- Original Message -----From: VICKIE KEMMERLINGSent: Tuesday, September 05, 2006 11:22 AMSubject: Re: [Narcolepsy-Chat] Fellow Narcoleptic' s
Thank You so Much How do u like Xyrem? Vic
Cindy <cinmcw@optonline.net > wrote:Hi Vickie,NORD (National Organization for Rare Disorders) has a financial assistance program that may pay for your Xyrem if you qualify. I receive Xyrem for free through this program.Cindy----- Original Message -----From: VICKIE KEMMERLINGSent: Monday, September 04, 2006 1:11 PMSubject: Re: [Narcolepsy-Chat] Fellow Narcoleptic' s HI I am on Ritalin and adderal right now and soon the adderal will have me at 105 lbs and a heart rate of 122 at resting. I have been on just about everything. The one med my dr wants me (Xyrem) to be on my ins will not cover. It is comparable to the date rape drug I am at a loss School starts tomaorrow and there is nothing I can do. It is really easy to give up. I dont care if I am sleepy all day I care aboout getting my son to school on time :( Vic
nettie1234@aol.com wrote:Vic Do you have a doctor who will prescribe medicines which you can take in the early evening? Around 6 pm so you get enough sleep to be able to rise and function You need to be able to function for yourself and your child. I dont know what medicines would help. I am not a doctor I am a person w N It has gotten worse as I get older but Ihave other problems I function best when I take my meds between 6-7 My husband was amazed at how awake I was at around 7 am I am usually very much asleep in the morning when he leaves for work.Any way best of luck See if you can find an MD who is open to all \treatments for N and try to help yourself through a diet high in protein and vegetables and low in sugar/saturated fat.I find sugar and caffeine cause more daytime sleepiness. JB
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