[sharon1953]

Well the provigil is doing wonders for my daughter.She is able to work without falling asleep and she has more energy.She is taking 150mg of it a day.100mg in the morning and 50mg.after about 6 hours.She is allowed to take 200mg a day.I am glad her GP gave it to her.She couldn't keep on working lik that and she couldn't do much with her son.I am just worried about if and when she stops it.

 

[Raglet]

hi Sharonfabulous news about your daughter, and I am really glad that she is able to tolerate the provigil.As for worrying about how she will cope if she has to go off it, why worry about what may never happen. Easier said than done I know, but it's important to try and keep positive. She really is very lucky that she is able to tolerate provigil so well, that really is wonderful news.cheersraglet

 

[JoD]

Just curious

Too lazy to search for your original post :blush:
How old is your daughter and why is she taking the provigil?

My 13 yr old son is on it. He doesn't have narcolepsy but excessive daytime tiredness because of frequent seizure activity brain patterns in his sleep.
He however does not show outward signs of seizures however. He still is tired at PM and goes to bed at that time. He is up to 87 pounds and on Mg in the morning. He started provigil several years ago at 50 mg because the 100 mg had him bouncing off the walls at bedtime. His current weight has him needing the 100 mg but he struggles to make it through a school day. We tried splitting the 100 mg into morning and afternoon doses but he once again was not able to fall asleep easily at night, staying up till 10-11 pm.
Any insight would be appreciated.

 

[Clare.T]

Great news Sharon !

I know this med has made all the difference to people's ability to carry on with their normal lives when they just can't reduce any of the demands on them in order to get more rest.
The only problem I can see with taking Provigil is the risk of not making every effort to reduce the load of obligations and thus overtaxing a struggling system. I once got a severe telling off for talking about its 'stimulating' effect but that in effect is what it is doing in a sense, in my opinion. I hope better days lie ahead for her when the meds kick in and they are the right ones
Please give her our best wishes


Clare

Joe D
Sharon's posts are listed at
http://www.thelupussite.com/forum/search.php?searchid=116138

 

[KarolH]

Hi Sharon,

So happy your daughter is reaping the benefits of Provigil.

I take 200mg daily and it really does help.

If I have a day when I know I do not have much to do and can take it easy then I do not take any and sure enough I will be taking a nap at some point.

Tell your daughter to stay on the medicine. Why would she stop taking something that is helping her so much?

When the daughter is good the mom feels better...:wink2:

 

[sharon1953]

FOR JoD..... My daughter is 27 Oct.1,she has a 6yo son and is divorced and her ex has left so he doesn't have to pay child support.She works making appointments for people with doctors.Her lupus is what makes her so tired to the point of falling asleep while at work on the phone.The total tiredness has been going on a few years but it just got so bad that she had to have something or lose her job.She must work to live,we help as much as we can.So far she hasn't taken 200mg. in a day .She gets up at 4 has to be at work at 6 and trys to wait till 7 to take 100mg. then she will take 50mg. after about 6 hours then she can g to bed at 9 and gets a good nights sleep she said.

 

[JoD]

Thanks Sharon,

I wonder if because she is an adult, she is better able to handle the dosage. Alex is 13 and we were delighted he weighed in at 87 pounds this week. I hope you don't mind if I bug you with questions for your daughter....got to hand it to her for doing what is right by the children, she is one gutsy lady. You should be very proud.
I was wondering if the provigil makes her think clearly or be more organized? Or does it simply keep her awake.
Joanne

 

[sharon1953]

JoD....I don't mind you asking anything you want,that's what I have been doing.It makes her stay alert and think better but she does not get the jitters and it seems strange because she could never take midol because it made her heart race but this doesn't bother her.She has other problems too she is having bone marrow removed and checked to see why her plateles are low,the oncoligis did blood work but it didn't show why so he wants to do the bone marrow Oct.16.Shesays she doesn't want to try for SS that she is too young and wants to work as long as she can.Maybe you could try giving your son the second half mid day it would help,I don't know what time you give it to him but try on the weekend to take it maybe 6 to 8 hours apart depending on what time he gets up and goes to bed.You have to work with the amount of time till you find what works for him.Sending good thoughts to you and your son.

 

[JoD]

We did try splitting the dose. Wasn't able to play with the times as much as we wanted because of school schedule and needing to be pulled from class. Alex uses a power chair and is visually impaired, so "traveling" even in just the hallway can be time consuming. It it turns makes him miss academic instruction, which he can't afford to do. What we tried was at 6:30 am and 12 noon. He had a very difficult time falling asleep on the schedule. If we give it all in one dose in the morning, he makes through school but after school is a fight to get homework done because he is so tired.


I work as an educational advocate for an disability advocacy agency. Your daughter might want to file for SSDI now ( cases can take a while..often require appeals etc before they are settled) Once she is on SSDI she can choose to participate in the Ticket to Work program set up through the SSA.
http://www.socialsecurity.gov/work/aboutticket.html

Hopefully with proper supports, your daughter will have less stress and less flares. That should leave her with more quality time with her son. Her son could also recieve benefits under her SSDI.
Joanne

 

[Raglet]

Joanne

I am well and truely an adult, and have been for longer than I care to remember and I really struggle to tolerate the stuff, so 'adulthood' along doesn't confer tolerence to the stuff.

I am really really sensitive towards any drugs that push my brain around at all - I have always thought that is probably because my brain is so compromised by my lupus that provigil (and a whole bunch of other drugs) are just way too much for me.

I think some can tolerate it, some can't, and I don't know if there is an awful lot that anyone can do about it. I have never yet been able to fall asleep unaided on the days that I do take it - I always have to use sleeping pills to knock me out if I have taken it. Definitely gives the the jitters x 812 if you know what I mean.

It helps me to go to work when I am desperate and really need to go in (usually meetings I just can't miss, stuff like that) but there is no way on earth I could take it on a daily basis.

hope you find a way to make it work for Alex

cheers

raglet

 

[JoD]

Raglet and Sharon,
Thank you for allof your input. As always I will just have to appreciate Alex for the unique needs as well as the fun he brings to our lives. I really feel a lot better about how we are handling Provigil because of your sharing your stories.
Joanne