7 replies to this topic

[Janet P]

I am diagnosed with both fibromyalgia and narcolepsy. I have found the best relief for me, so far, is a simple glass of wine or beer (or two) when I get home from work, with dinner. I'm not an alcoholic and don't want to become one. And I apologize for the subject matter if it happens to be taboo for you. I've tried many medications, all expensive and a hassle to get, and find that there are less side effects if I simply share an after work cocktail with my husband, go to bed at 10:00, read for about an hour and drift off.

I know this is called self-medicating and has very bad connotations, including being labeled ‘bad sleep hygiene.’ But I'm thinking that a Miller Light has fewer chemicals in it than Xanax or Lunesta or Provigil. Of course I don't drink enough to have a hangover or be sick or fall down. My liver is fine and I don’t operate any heavy machinery, unless you count setting my alarm clock. I've gone the route of ambien, atavan, valium, flexeril…, and those things actually made me feel more groggy some mornings, like they didn’t make it all the way through my system and are still dissolving or something. Also, I've traced those meds to an increase in sleep paralysis and nightmares. Then I have to counteract that with Provigil to make it through work all day. So I suspect the alcohol also helps my sleep rhythm so that I stay more alert during the day. But I know; everybody is different!

This ‘medication’ of mine is probably the age-old treatment for fibromyalgia (besides maybe bloodletting, laudamen and Geritol), but if I'm careful, the worst thing about it are the extra calories. Does anyone have any similar feelings about this guilty pleasure?

[greatbig47]

Hi Janet!

Mmmm....Merlot! If loving a good red wine is wrong, I don't want to be a right! Congrats on finding something that works.

The term "Self Medication" puzzles me. The stigma is bad, and I don't understand why. Why is it so bad to take care of yourself? Why is it so bad that find what works best for us? Is it really so much better when a doctor hands us chemicals, saying "Let's see if this works"?

There are some narcoleptics who swear by the use of marijauna, claiming it relieves some anxiety, as well as prepares their minds for nightly planned sleep (decreasing EDS). Then there are others who claim marijuana drastically messes with their sleep patterns. The point being that some people can find what works on their own, which is encouraging because with Narcolepsy, it appears that the effects of all forms of treatment have different results with different people.

A glass of red wine make good heart-health sense, and there's a pretty healthy wallop of anti-oxidents in there. If you're watching your consumption, I'd say congrats to finding something that works! It sounds like your date-nights with your husband should be a permanent part of your therapy!

[Janet P]

Cheers, GreatBig47! You made your point so eloquently; I agree 100%. Thank you for sharing so compassionately and for removing the tinge of guilt that was only there because I hadn’t seen anyone else mention alcohol in a positive light on this site before.
God bless you,
Janet

[sleepyavon]

Right there with you Janet! I also have narcolepsy and fibromyalgia, I also have RA. I am on provigil, effexor XR, and Xyrem for my narcolepsy/cataplexy, and alot of other meds, but I totally love drinking a beer or so, and the nice relaxed feeling it brings me! It really helps numb the pain I know we must have in common! Cheers!

[Toph4er]

If it works that's great...I'm a 19 yr. old good ol' boy so I don't drink at all but I don't see anything wrong with a couple drinks, Jesus drank wine on likely a daily basis after all! However, have you been concerned at all about it mixing with the other meds, part. the Xyrem? I'm not sure to what extent it is dangerous, but ya always gotta think .

Chris"Toph4er"

[Chuck Z.]

Interesting topic! I too feel "better" with a couple beers in me. It's fleeting (only an hour or two, but), it does help and it is tempting to drink, but I steer clear to be safe.

As a matter of fact, I saw my neuro today and the topic came up. He explained that alchohol does essentially that same thing as madofinil (Provigil), but to a limited extent. It's all about dopamine and neroepinephrine. I have a tremor and nystagmus, and whenever I drank, they both dissapeared (again, just an hour or two). Now on Provigil, the nystagmus is nearly eliminated and the tremor is also virtually gone.

I don't ever "need" a beer again! (but, uh, I still "like" to partake every now and then!

Chuck...

[Cryopathic]

My Dad let me try a sip of his Smirnof Ice when I was like 7, And I slept like a Baby. I agree with you Stu and Rachel If you think it helps you then stick to it.

[Cryopathic]

(Just as long as you don't drink to much or you could have another problem apart from Narcolepsy!)