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Tuesday, March 22, 2011

hi im paul from cannock england im 45 and have been diagnosed with the curse that is narcalepsy . at the moment im on modafinal and dex amphetamine. the modafinal dont seem to do anything for me but the dex do . trouble is im having to eat about 70 a day

Hi, Paul! I have heard a lot of people complain that the modafinil (Provigil, for anyone reading this who doesn't know) either doesn't work at all or stops working after a very brief period of time. For me, it was great...for about two days. Then it did almost nothing without long "drug holidays" in between. It also gave me severe headaches, so eventually I stopped that.

I personally have never tried dex. All of the stimulants I have tried give me migraines. Once side effects from the migraine medication I took became too much, I stopped taking both and now try to manage my narcolepsy medicine free. It is difficult, but I am fortunate enough to be on the milder side of the spectrum and also in a position to be able to sleep when I need to and work when I can. When I tried to fit into a normal 9-5 job, the results were pretty disastrous.

I'm not sure what your question might be, but if you are looking for treatment suggestions, I can tell you there are still more options. Nuvigil (armodafinil) is supposed to be a longer-acting form of Provigil, and some people who have had no luck with the latter due report some help from Nuvigil. Mixed with a shorter-acting drug like the dex or Ritalin, that may be one option. Unfortunately, as with those who use these drugs recreationally, it is common for a point to come when higher and higher doses are needed. It is not unusual for people with narcolepsy to go far beyond "normal" dosing over a fairly short period. One thing that may help is talking to your doctor about "drug holidays," days or weeks you can stop taking your medicine (make sure you are able to sleep all day and don't have to be anywhere) so that when you take it again, it seems to work.

There is also Xyrem, which I understand is difficult to be approved for in England, but it can be done. Although it is not a stimulant, it is the only thing that has been proven so far to improve nighttime sleep, which leads to much better days for some people. Xyrem, however, has a lot of side effects and is certainly not for everyone.

Make sure to talk to your doctor about how you feel your treatment is going, and I suggest joining online or in person support groups where you can talk to more people who understand exactly what you are going through. I am on Facebook (http://www.facebook.com/planetnarcolepsy) and we have an independent site, www.planetnarcolepsy.com. I also highly recommend the Narcolepsy group at dailystrength.org. That is where I first talked to other people with narcolepsy and consider them all family.

If there is anything else you'd like to know, please write again, and I wish you luck in your struggle with this awful condition.

-Jessica

Ask me anything

2 comments:

  1. Paul,

    I can tell you what I've tried and what has (and hasn't) worked for me. Like Jessica said, keep in mind that your body chemistry will change - so what works for a while will not work forever.

    To stay awake, I've had:

    Provigil - didn't work well for me, as I felt like I didn't need to sleep at all, had heart palpitations, and felt that I had to take it the exact same time every day

    Adderall - first 10 mg at breakfast and lunch, then 20 mg, then 30 - the 10 mg dose worked for years for me, then I felt like I didn't have energy for about 6 months before mentioning it to my neurologist and going up to 20 mg - that worked for 6 months or go, then we tried 30 mg - and then day turned to night, night turned to day (even with sleep meds) so my neurologist switched me to Vyvanse

    Vyvanse - started with 60 mg, going to try 70 mg - I love this medication! I feel like "myself" again - awake and alert, without being jittery. I never realized how jittery and artificial Adderall felt until Vyvanse

    Sleep meds

    Ambien - tried two different times - caused me to sleep a little too deeply initially (when the cops are outside your bedroom window, you should wake up - but that's another story) - and the second time I was feeling anxious during the day (a side effect)

    Desipramine - this worked really well for a few years - I avoided sleeping medication for as long as possible (esp after my first experience with Ambien) - I started at 25 mg and worked my way up to 100 mg in 25 mg doses, over a few years

    Rozerum - this worked for me for years too

    Lunesta - I'm on this now, it has worked really well minus the last two days or so (I had a lot going on in the last two days, so that's probably why)

    Xanax - I've had this for a few years to take on the nights that my regular sleep meds aren't enough - in other words, if you usually take sleep meds every night, then on a night that you're extra stressed, you may need something extra. Part of keeping this working for you is only taking on occasion - for me, maybe a few times a month tops.

    Let me again emphasize that these experiences are my own. I know when I was first diagnosed I was overwhelmed - but in time you will find the meds (and routine, or lack of routine for some of us) that works for you. I changed jobs to something with a more flexible schedule, and I've also had many more months of my medication working than not since I was diagnosed in December of 2004. I wish you the best and I will second Jessica - post again if you have any more questions. I know for me it was reassuring reading that other people experience the same crazy symptoms, and that they still have friends and family that care and do their best to understand.

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