For Those Who Use Provigil

[juliegee]

Hi All-

Quick question. We are experimenting with changing my 16 y/o son's stimulant-type med. (He also takes florinef, Thermotabs, Lexapro, & GI meds.) He had pretty good luck with 27mg of Concerta, but reported sometimes feeling spaced out. Dr. Rowe thought it was worth a trial of Provigil. He was supposed to start with 100 mg and after a week progress to 200 mg. Well....an hour after his first dose, he was begging for more. He was so tired, couldn't do schoolwork, etc. I broke protocol and gave him another 100mg. He said he felt good. It'll take time to see how this works. Our biggest worry has been the weight loss with these meds...

Overall, I just wanted to hear your Provigil experience & see what dose you take.

Thanks for your help-

Julie

[Rachel]

I was first prescribed 100mg of Provigil in the morning and another 100mg in the early afternoon. That was too much for me, though, so I backed it down to just 100mg in the morning.

I can't take Provigil daily. I can only take it for about 4 days, and then after that I slowly get more and more fatigued if I continue on the med. Then I have to take Provigil in the morning just to get back to baseline. It is very helpful for me ocassionally, but daily use makes my symptoms worse. I've never heard of it being that way for others.

Rachel

[Selah]

I am new to this board and we are not even sure yet if son has any form of dysautonomia but he was placed on Provigil to try to help with his fatigue levels. He was struggling to get through a day of school.

In the beginning he was on 100mg - seemed to work well for about 3 months. He went off of it during the summer and when he tried to start back on it for school he really had a hard time with his fatigue. He started losing weight etc. We took him off of it and his appetite has returned but we don't know at this point how to address his fatigue levels. Not sure if we should have tried a higher dose or not.

From reading other boards I have heard great stories that it helps and then I would read about the side effects.

[juliegee]

Thanks for your replies. Mack seems to be OK with 200mg. I'm worried that it's not quite as helpful as the Concerta 27mg. I think we have to give it time & see how it plays out. Unfortunately, he's got PSAT's tomorrow- awful time to be messing with his meds....but it seems like we are always adjustung something.

Rachel- Sorry Provigil lost effectiveness for you. I had the same thing happen to me with some motility meds. They worked great the first few times, then nothing. I also had to take holidays to get any effectiveness. Frustrating. I'll be on the look-out for this. Is that baby kicking up a storm yet?

Selah- I can relate. Fatigue and loss of appetite are some of Mack's most distressing symptoms. He tried adderal, concerta & now provigil. Loss of appetite has occurred with all, but was mitigated after a while with Concerta.

Are you working to get your son DXed? Share his symptoms with folks here and let them weigh in- I've found that very helpful in the past. Maybe someone here can recommend a doctor near you.

As a Mom, I know how hard it is to see your child suffer. I'm sending healing thoughts your way.

Julie

[Lenna]

Julie,

I'm thinking about starting Danny on something to help with his fatigue. How is Mack doing with the Provigil? And just wondering why he had stopped the Concerta.

[goldicedance]

I use Provigil. When I get up early enough, I take 400 mg. Otherwise, 200 mg.

I could not get it approved by my insurance for POTS. I did get it approved for sleep apnea.

Lois

[juliegee]

Thank you everyone for your helpful replies. Mack tried Provigil. He started at 100mg & within an hour was begging for more just to stay awake- he said it did nothing. Soooo instead of waiting 3-4 days like his doc recommended, he went right to 200mg on the 1st day. It was OK. He tried it for about 10 days. He said it felt like the Concerta. However, his appetite was GREATLY affected. He ate next to nothing for that 10 days. He seemed a bit more impatient and irritable than usual. His doc approved him to go up to 400mg, but his weight loss was too dramatic to risk it. He finally asked to go back to the Concerta, 27mg.

Lenna, the only reason he wanted to try something new was that he said the Concerta sometimes made him feel "spaced-out." He claims that "spaced-out" feeling was going away just as we started the Provigil. Mack's been on Concerta for about 9 months now (with the Provigil trial.) I would highly recommend giving a stimulant type drug a try for Danny. It helps Mack stay awake and focus better at school. (He does NOT have ADD/ADHD, but very slow speed processing, pretty severe bradycardia, etc.) Homework used to take HOURS. Now, it's more like an hour. Concerta helps, but it's no panacea- he still has to sleep as soon as he walks in the door from school for at least 3 hours.

BTW, our insurance co., UHC, would only approve Provigil with a prior authorization. My husband travels overseas so he picked some up there to try before dealing with all of the paperwork, etc. We were told the prior authorization would have to be renewed every six months with a doctor's letter.

Thanks again!

Julie