15 replies to this topic

[BeautyCochran]

This "seems" like the right place to post this....well I haven't been back up here in a while because I've been seeing Drs. & my counselor, but nothing else much from I am understanding is going to help (except my faith). I can only take 30 mgs of adderall because it gives me the jerks real bad at 40 mgs. I've noticed with these drugs (stimulants) that the first day to a month is awesome but then that's it!! I've been on 3 diff. ones now in the last 3 years and that has been the conclusion everytime. So, another one of my Drs. put me on Wellbutrin which really helped at first but then it slowed down and now I'm weaker than ever, fatigued more than ever and depressed more than ever. I also realized that I had to deal with hurts that people dealt me when I found out I had ME-CFS & Narcolepsy at the same time. So cruel, I just can't get past this and I have cried so much that I realized I needed to see my counselor.
Do any of you not work because you are so sick from this?
Love & Huggle s~~Beauty

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[Lovemyhusband]

(((HUGS!)))

I was just thinking about you last night and I noticed you had not been on in a while. I am sorry to hear you are not feeling well. I don't have any advice to add but I wanted to let you know I am thinking of you and hope you feel better soon. Let me know if you need more hugs I have plenty to go around.

[sleepylama]

I do not work. I am on disability through my employer...let's just say that is not a fun process and is wearing me out big time. My doc nailed it on the head when he said people who do not live w/the disease or live WITH people w/the disease do not really understand that this is not living when it is uncontrolled and almost all people would do pretty much anything to get back to normal days.

I also have other chronic illnesses including Ankylosing Spondylitis (AS) which is an auto-immune disease in the same family as MS and Lupus (which most people know better). The pain and issues of my AS pale in comparision to dealing with Narcolepsy. That is not to say I don't have some extreme pain, but the Narcolepsy issues are far less controllable and even in pain I can still live life, but not so much when I am asleep most of the time! =)

Hang in there and try to keep your spirits up. I know it is hard w/the meds not being helpful, I am in the same boat currently. I am pretty new here but have found everyone here to be just the support I need.

I hope you get to enjoy a bit of your weekend and have some warm weather and sun in your area! A nice sunny day always helps me a little.

[bagpuss]

I DONT WORK EITHER AND THEY SAY I NEVER WILL AGAIN. I WAS SO LOW AND DIDNT WANT TO BE ON THE SCRAP HEAP AT SUCH A YOUNG AGE. I CRIED MOST DAYS, THREW MY PILLS AWAY NOT VERY PROUD OF MYSELF HIT THE BOTTLE FOR A COUPLE OF DAYS.I DIDNT KNOW WHERE TO TURN TO OR WHAT TO DO.............THAT WAS 2 MONTHS AGO STILL NO PILLS(AND FEEL GREAT)STILL NO JOB(FOUND D.I.Y HELPS) AND AS FOR THE BOTTLE !!!!!!!!!!!!BACK UNDER CONTROL ,MAYBE A DRINK NOW AND AGAIN .IF YOU EVER WANT TO CHAT ALWAYS HERE .YOU WILL BE IN MY THOUGTHS. A BIG HUG FROM ACROSS THE SEA X

[caroline]

Your message touched me very much. I wish that I had words of wisdom, but of course, I do not, just wanted to let you know that I understand. I work fulltime, but toward the end of the week, I feel like a truck has run over me, and each day, I just pray that the Lord gives me strength for one more day. Blessings to you, write me anytime.

[Emo]

BeautyC said:
" I've noticed with these drugs (stimulants) that the first day to a month is awesome but then that's it!! I've been on 3 diff. ones now in the last 3 years and that has been the conclusion everytime "

I wonder if anybody talked to you about how people develop medication tolerance? The longer you take them, or the more you take, the more you need. The only answer for me was to schedule periodic medication holidays in order to re-sensitize myself. Also I had to accept that I could never attain anything like feeling GREAT for any length of time. My medication of choice is an amphetamine sort of thing called desoxyn. The result isn't all that great but it's a danged lot better than nothing!

My own doctors failed to warn me of this tolerance problem and so it took my some time to see what was happening. I have come to think that the shakey feeling is a sign of actually taking more than needed, but of course this is going to depend on the individual and especially on other health conditions.

I did manage to stay employed for 26 years but I was, of course, never known for being a ball of fire. Snort!

nite nite
Emo
Reporting from Fort Mudge, Idaho

[sleeplzzzz]

I do not work because of this. I too am severly depressed. It took many months to find the medications that work for me and not give me the shakes that have embarrased me to no end when I'm in a PUBLIC setting. I think the disease itself causes some depression and then comes the responses of others,a nd like so many times, if people can't see it, such as a loss of a limb, then they don't understand it. Even my fiance's children make funny of me at times because the further along the illness gets the more it affects in my physically and mentally. To add to the embarrassment of memory loss, I now sometimes studder simply because what I'm trying to say, no longer comes out in the words which I once knew fit the sentence. It sucks, but keep the faith. Establish a friend base that knows and can relate to what you are feeling, it's not easy because this is a rare disease.. Keep the faith.. Thinking of you.

Sleepyzzzz

[xiola23]

I am no longer able to work either. SSDI has finally approved my case thankfully. Its a vicious vicious cycle of depression and Narc that just seems never ending.
Hang in there and just keep on keepin on! I keep saying I need to invent a hat that dangles a cig from the brim...just out of reach .....as long as I keep chasing the cig, I'll be awake. LOL
Sorry to hear of your struggles...just know you are not alone and hope we can help give ya some 'pick me up' power. Blessings!
Kat

I do not work because of this. I too am severly depressed. It took many months to find the medications that work for me and not give me the shakes that have embarrased me to no end when I'm in a PUBLIC setting. I think the disease itself causes some depression and then comes the responses of others,a nd like so many times, if people can't see it, such as a loss of a limb, then they don't understand it. Even my fiance's children make funny of me at times because the further along the illness gets the more it affects in my physically and mentally. To add to the embarrassment of memory loss, I now sometimes studder simply because what I'm trying to say, no longer comes out in the words which I once knew fit the sentence. It sucks, but keep the faith. Establish a friend base that knows and can relate to what you are feeling, it's not easy because this is a rare disease.. Keep the faith.. Thinking of you.

Sleepyzzzz

[sleepingonalog]

Looking to vent. I'm not sure what my alternatives are, but living with Narc is awful. I feel lazy, tired, and no self worth. Some days I get lucky though and actually feel like doing something.
I don't know where to start, so here is what I take on a daily basis. I am also deal with depression

I take at night all of this: xanax, paxil, wellbrutrin, ambien, lipitor, nexium. Then of course my ritalin in the morning.

so I'm basically needing somebody to listen, or any guidance.

I wrote a better letter then got knocked off. So this is short I know, but as usual I'm getting tired.
Pat

[AlwaysTired24]

Its so good to finally be able to talk to people that feel the way I do. I am a 26 year old preschool teacher with narcolepsy. I have been on Provigil 400mg a day and then went over to Ritalin because after a few months the provigil didnt work and it would make me nauseous and dizzy. The Ritalin did absolutely nothing. i am currently taking no medicine and feel like *BEEP*. Some days i am able to do things, but most of the time I just want to close my eyes and stay in the house. Nobody understands how it feels. They say to not complain and how some people have it worse in life. This is very true, but at 26 I feel like I am not living my life. I never feel refreshed, awake, UP! I am at the point where I am trying acupuncture or holistic medicine. I feel that these meds are not going to work for years to come.

[Lais02]

I am a barely a full time student, 12 credits. I just wanted to say that I also do not work. This is a long summer break with no class and no work. My last job put me on a medical leave of absence, but they wouldn't let me stay that way for too long, so now I just don't work.

[rantboy]

BeautyC said:
" I've noticed with these drugs (stimulants) that the first day to a month is awesome but then that's it!! I've been on 3 diff. ones now in the last 3 years and that has been the conclusion everytime "

I wonder if anybody talked to you about how people develop medication tolerance? The longer you take them, or the more you take, the more you need. The only answer for me was to schedule periodic medication holidays in order to re-sensitize myself. Also I had to accept that I could never attain anything like feeling GREAT for any length of time. My medication of choice is an amphetamine sort of thing called desoxyn. The result isn't all that great but it's a danged lot better than nothing!

My own doctors failed to warn me of this tolerance problem and so it took my some time to see what was happening. I have come to think that the shakey feeling is a sign of actually taking more than needed, but of course this is going to depend on the individual and especially on other health conditions.

I did manage to stay employed for 26 years but I was, of course, never known for being a ball of fire. Snort!

nite nite
Emo
Reporting from Fort Mudge, Idaho

Yo Emo

Desoxyn effidrine hydrochloride. Know it well. In 1957 my doc (shrink) prescribed Benzadrine - too strong, Dexidrine - still too much, Dexidrine spansule - great, the added Desoyxn to be taken in the Am with Dexidrine spansule if needed around lunch. The combo was a bit much got the shakes so stuck with Dexidrine spansule. Doc retired and moved. Can't get it any more, addictive they say.

Glad to hear someone else appreciates "old time dope'.

[Damian]

I to use to have the modafinil, ended up on 400mg and still didn't even have an effect. I find that with the dex I'm up and down in moods sometimes a bit forgetful.It's also easy natural to become depressed when you have N/C due to it changing your daily life.I went off the rails couple of years ago they didn't know where to put me ended up in a mental ward where they didn't even know how to spell Narcolepsy let alone know what it is.So when I went into an N or a C they didn't even know how to react, when you in a sleep paralysis you can hear them all debating whether they should wake or leave you to wake up on your own.. it was a joke..
now on dex all day clomipramine through day and night fluxetine at night and xyrem still not controlled.

[Ms.Vanna]

Hey,
I haven't worked for 3 years now I think. I try to do little stuff on the side but, hinestly I don't even have the energy to keep up with that. I have memory lapses or something, I don't know I got tested for it and of course everything came back normal but, I have the hardest times remembering things. BUt, hang in there I can't even count the number of meds I've been on. And, of course they all work for a month or so and than nothing. To top it all off stimulants cause me to lose weight and because of the fact I'm so skinny I can only take low dosages of meds. Sucks to say the least. But, oh well you work with what you got and sleep when you have to. Stay encouraged.

This "seems" like the right place to post this....well I haven't been back up here in a while because I've been seeing Drs. & my counselor, but nothing else much from I am understanding is going to help (except my faith). I can only take 30 mgs of adderall because it gives me the jerks real bad at 40 mgs. I've noticed with these drugs (stimulants) that the first day to a month is awesome but then that's it!! I've been on 3 diff. ones now in the last 3 years and that has been the conclusion everytime. So, another one of my Drs. put me on Wellbutrin which really helped at first but then it slowed down and now I'm weaker than ever, fatigued more than ever and depressed more than ever. I also realized that I had to deal with hurts that people dealt me when I found out I had ME-CFS & Narcolepsy at the same time. So cruel, I just can't get past this and I have cried so much that I realized I needed to see my counselor.
Do any of you not work because you are so sick from this?
Love & Huggle s~~Beauty

[Damian]

I don't work and haven't since I was diagnosed nearly 3yrs ago myself, told me I can't work even if I wanted to, then DVLA WROTE TO ME WITHIN A MONTH OF BEING DIAGNOSED A REVOKED MY LICENCE DUE TO MEDICAL REASON'S.No one refunds me for I got my licence in 1998 banned in 1999 due to 7 points on the new system had to resit my theory then a 90 minute test got it back in 2000 then they take it of me again wankers.

[Cryopathic]

Let me know if you need more hugs

HuGgIng pOwEr! Hug. Hope you feel better soon.