Provigil/modafinil

[Amber]

I've noticed that a bunch of people here are using provigil/modafinil for fatigue. I would love to try it (because I have CFS as well as fatigue from POTS) but my hubby was just prescribed it for a sleep disorder and as I was reading the information I noticed that it says that its not for people with heart issues, valve problems, arrythmias, those who are on betablockers etc. So I was wondering how Pots patients can use this medication? Is this medication dangerous for us?

Just thought I'd get some first-hand experiences before I beg my doc to put me on it.... 8 )

thanks

[flop]

For most people dysautonomia doesn't actually mean that we have a heart problem / arrhythmia or valve problem. We mainly have normal hearts that beat too fast because the autonomic nervous system is sending out the wrong signals. I've never taken anything like Provigil but I know that other members do take that type of med without any problems. Only your doctor can advise if it is okay for you to try a new med as they will have the information from your tests and can look at what other meds you are taking to make sure that the combination is ok.

Flop

[ramakentesh]

I have spoken to two patients that have tried this - one loved it, the other had a semi bad reaction (anxiety and a worsening of body tremors).

[Rachel]

Provigil is helpful for me. I can't use it daily, though. If I use it daily then I slowly get worse and then need the Provigil just to get up to baseline again. But if I use it just once or twice a week, it gives me a really good "boost" to help me through the day. I used to use it on days that were really bad, just so I could make it through a little easier. Or I would use it on a day that I wanted extra energy (like to go to church or to go to a friend's house).

I can't take it currently because I am pregnanat. I really miss that once a week Provigil boost!

Rachel

[jkapache]

Lifesaver drug for me!! I take it every am, 200 mg. MY dr wanted me to take another 100 mg around noon but insurance wont cover it. I just switched to nuvigil, its suppose to be the same, but less side effects and cheaper ?????? My biggest complaint is that i do tend to get 'used' to it and it has only about a 75 % effect..... and also my insurance denied it for quite some time, after 8months they approved it once a day Good luck if u try it!

[Amber]

Thanks for all your responses. I guess its a trial and error thing. My doc knows nothing about pots it seems and my specialist literally spends less than 5 minutes with me during my appointments. He just checks my vitals, (or has the nurse do it beforehand), and sees my meds aren't working well enough, doubles my dose and then leaves..... I'm still trying to ask him questions as he's walking out the door. Maybe this coming appointment I can tie him down to ask him about trying provigil.....

Flop... You're right...I was forgetting that not all people with Dysautonmia have a mitral valve prolapse like I do....I think it would be considered a 'heart condition' but I'm not really sure since many docs consider MVP relatively benign.

[bjt22]

I tried it a few years ago. I, too, was a little concerned as I believe much of my fatigue centers around my cardiovascular function not being what it should be. Didn't see how this centrally acting drug would be much help. I was right. I tried it for about a week, and it made me feel worse. It did not lessen the fatigue, rather I was still fatigued but felt as if I was carrying around additional 10 pound weights on my arms and legs. It also increased chest pain.

Sad thing was that this is a VERY expensive drug, and I ended up throwing several hundred dollars worth of it down the drain. Literally.

[ramakentesh]

Slight mitral valve prolapse is encountered in a percentage of POTS and dysautonomia patients in general. I think (but could be incorrect) that it is assumed to be a relatively benign manifestation of the overall problems associated with dysautonomia/disorders of 'circulatory control' (the latest name).

They dont really know why this medication works by the way so its hard to hypothesise whether ti would be helpful in your cases. Off the top of my head I would assume that patients with hyperadrenergic presentations might have more difficulties with this one.

[erik]

Modafinil's patent is up. Generics will be out soon and even ProVigil will drop a bit in price. NuVigil (Armodafinil... the chemical "r" antomer of the modafinil blend) claims nothing huge, just modest side-effect profile. Please do Nu if you/your-plan can afford it... that will fund advancements that might make the difference to you or others down the road and keep the braniacs that dedicate their lives to these things doing their magic and helping us.

I tried Adrafinil, the predecessor of all these. It has worser side-effect profile and happens to break down into Modafinil in your body after 'bout an hour (but might have direct activity too, nobody knows). It was of modest assistance to me but nothing huge. It is not cheaper per effective dose than Modafinil but is sold in smaller amount & in U.S. is legal for personal use sans scrip.