Narcolepsy Support Group

Dallin I'm having a similar struggle. Not with work but with study. I don't sleep that well at night but when I do it's just one vivid dream after another. I've been getting a lot of paralysis and hg hallucinations also which is something I've not had in a while. I wake up feeling semi functional and feel like it all day. I could sit down anywhere and sleep without any problem. I need to study and I just can't absorb anything from books. When I need to be able to think I can't I just draw a blank. It's totally freaking me out. I've talked to my doc and he has also mentioned dexedrine. I'm just really worried about going down that route. I have no idea what that stuff does to you long term. I'm sure it can't be good.

I agree Andrew our symptoms do sound really similar, I started a distance learning course 3 weeks ago, first assignment due in 6 days, haven't started yet, just can't focus on anything. I've spoken to doc, apparently there's a shortage of dexedrine in uk at moment so he's gonna try me on ritalin, not sure about that but i gotta give it a go, just trying to think about getting some quality of life back at least for a while. I too am worried about long-term effects but at the moment am more worried about having no control over my life

I took dexedrine for almost 4 years. I couldn't get the dose above 20 mg's per day divided into 4 doses of 5 mg each. The dexedrine did help me focus and stay more alert for 2-3 hours after each dose initially. Side effects were mild. Some heartbeat irregularitys, caused insommnia even at 20 mg. No long term effects though. Was able to decrease the dose by 5 mg every week to wean myself off the drug with no withdrawal symptoms. Now on Xyrem at night. Not helping EDS but helps me sleep without going directly into REM sleep. Men seem to have less of a problem taking dexedrine than women according to my neurologist/sleep specialist. Best wishes, Zenfulliving

Hi dallin,I really understand how you are feeling. Right now, I have been on a medical leave since March do to ongoing problems at work that have destabilized my N and C. Prior to this, I was doing really well and I was only having to see my doctor every six months. After ten years of carefully monitoring my N and C, I am now back to square one and visiting the doctor every three weeks. My employers would like to accomodate my disability by providing me part-time work, but what work can they give me that would not be affected by the symptoms of N and C?? My doctor wants me to go on LTD, but how do I live with the stigma this carries. Let's face it, so long as we are high on all the drugs that we have to take, we can at least look as though we're normal. Obviously, I am not the best person to give you advise, however if I were in your shoes, I would return to work but be certain that your employer knows of your disability. If the stress continues, you can always apply for another medical leave. Most importantly though, remember that there is protection for people with disabilities. Good luck.

Thanks for your feedback zenfulliving. They've changed from dexedrine due to shortage so i have ritalin instead.
Excuses i did go back to work 2 weeks ago after 4 weeks off, they stressed me my first hour back calling me 'a negative impact' on the team, they were supposed to give me phased return to work but didn't, for 4 days no-one spoke to me, then i faced the hearing i had for mistakes i made due to concentration lapses and got given a written warning, have put in an appeal, but have been off since cos can't face any more stress making my symptoms bad again, at moment i cannot wake up until after midday anyway cos can't get to sleep at night, dreams and hh are awful, doc's given me another 4 weeks off, but i think they just trying to force me to give up now, as HR asked me last week if i had considered resigning

Dallin,do not make any rash decisions before you check out what protection you have. Keep all the documentation that you can so that you have actual proof of their behavior. You must keep-up the strength to fight back if it becomes necessary. Also, let your doctor know what's going on. You will need his support if you were to consider LTD like myself. There is information available online for people with disabilities. Perhaps you should print this material and present it to your employer. Their behavior may just warrant "Discrimination because of Disability". This information might help:

http://www.jan.wvu.edu/media/emplo...

There's a whole lot more under "American Disability Act" (ADA)

Hope this helps some.

Thanks excuses, i live in UK so our laws are bit different, we have the DDA though (Disability Discrimination Act) but i don't know how far that will protect me, there was an incident at work in Dec that i should have took action on but union advised me wrong and now it's too late. Since then it's been what i would consider harassment but i think they would find ways out of admitting to that, it's not that clear-cut. The union haven't been helpful at all either, i don't know why i'm paying them, think i'll cancel tomorrow.

Hi dallin,
Funny thing, I'm not from the USA either, I'm from Canada and our laws are also different. Perhaps you could provide the Uk with a learning lesson on what's happening in other countries. If anything, they may be more understanding. Natually laws are not made overnight, but the more we get the message across, who know's what can happen in the future. I too have the same feelings about my union rep. I have no choice, union fees are deducted directly from our pay. Amazing!! Forget about going the harassment route - you're up against pros, but disability route is something that they can not dispute - either you have it or you do not! Do you pay into LTD at work?? This is not the same as claiming throught the government. If so, find out what qualifes for disability. Generally a detailed letter from your Doctor would do the trick. Also, if you do pay into this type of insurance, it usually allows for medical benefits and pension benefits. Check it out! Most importantly, do not resign. The UK certainly must have laws must have laws that would prevent you from being dismissed. You must realize that the symptoms that you are having will be with you for life, therefore trying to survive a normal existance with meds would be near impossible for Narcoleptics. To think otherwise would place you in a no/win situation. No meaning that it would not be good for you, and win for employer who apparently wants you to leave. Up to now, taking medications would have been my very last choice, but without them, the last ten years would not have existed. Dallin, make resigning your very last option.

firstly, congratulations on the weight loss. most narcoleps struggle with obesity (as if their self esteem isnt already bad enough). i understand an apprethension to medications. US culture has always been very suspicious of mental diseases and medication. do u feel helpless when ppl say u need medicine, probly for the rest of ur life? are you unhappy about the financial impact of narclepsy medication? are u worried about side effects or some other factors? also have you had a long history with narcolepsy complications hurting your work life?

Thanks excuses, there is someone i can call for advice, i'll do that tomorrow.
And thanks Ark, unfortunately I have a room overfull of clothes too big for me, and will have to buy more but not getting paid from work at moment, i've been very lucky that not had weight prob before. I don't have probs getting meds really as we have NHS we don't pay much for them, set price regardless what it is, although the docs pay so they were bit reluctant to prescribe provigil initially, but had to accept it in end. I've never been one for taking meds, never liked even paracetamol so to be told i need them prob for ever does hurt a bit, especially if i completely have to avoid alcohol, don't drink much but like to now and then, and i am worried about long-term. I used to have own business but had to give it up 3 years ago as I got quite poorly quite quickly, prob had narc 16 years, but only dx 18 months ago. So i was unaware of narc when i started work of others, and didn't realise the probs it was going to cause.