Provigil / modafinil

[mich5]

Just wondering if anyone is taking provigil (aka modafinil) and how it's working for you. I believe it's available in Canada and Europe but not the states. Don't know much about it but have just heard 'whispers' that folks in the States might want to get it and I'm not sure if it's helpful for us pALS. Thanks all!

 

[Tokahfang]

It is available in the US, it even has a generic finally. I have been taking it for years and it is hugely helpful. I don't think it would be exagerating to say that it gave me back a meaningful daily life. It does, however, exascerbate psuedobulbar symptoms, so it comes with a cost. If the fatigue is bad enough, though, it is completely worthwhile. How does having a stronger voice help if you can't get out of the bed to talk to anyone?

 

[mich5]

So, you take it mainly for energy, correct? Did you find it helpful in alleviating other symptoms! Ahhh, the psuedobulbar issues . . . I barely have them under control now! . Did you find the laughing/crying episodes increased on this medication or just the strength of your voice? Thanks for the info!

 

[Nighthawk]

Is it true that this drug improves your speech or it is just a temporary effect?

Thank you.

NH

 

[Tokahfang]

Quite the opposite - it makes UMN voice/swallowing problems worse. As far as I understand it, if you don't have symptoms to begin with, you are fine, but if you do it worsens them.

Mich, I have never had very pronounced pseudobulbar affect (the laughing/crying thing), but it did seem to increase it a bit in me. You'd have to try it to know, really. It isn't habit forming and you could stop anytime, so I wouldn't rule it out just on the possibility. I did take it originally just for energy, but it also seems to have the happy side effect of repressing the mild front temporal lobe issues I get. That could be a placebo effect, of course, but I appreciate it!

For me, especially early on, it became a game of taking the smallest dosage I could function on so that I had the most voice left over to enjoy that function with. Even with the affect on swallowing, I often found restricting my diet a further stage was a better deal than living with the fatigue. It is a trade-off drug, and trade offs are things you just have to find your least cruddy balance with, I think.

 

[Nighthawk]

Thank you very much, Becky for your insight about this drug interacting with the voice/swallowing problems for Bulbar PALS.
Now I know for not trying it.



NH