Multiple Sclerosis Community
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405614 tn?1329147714

It's a new world, or day 2 on Provigil!

Wow!  I took my first 100 mg. of Provigil yesterday.  I had to get up really early to make it in to a 8:20 appt. with my PCP, and took my Provigil at 6 am.  After my shower, I was feeling pretty good, still dizzy and shaky, but moving fast, ready to go in plenty of time, and took everything I needed to have with me.

I got into town in time to go to my apartment, pick up some items I wanted, check in with the forum, and go to my appt. after chatting briefly with a neighbor.

My PCP was great, as usual.  A temp. medical assistant had taken my BP and it was 130/88, and I was afraid that I wouldn't be able to take the Provigil because of that.  Dr. S. said not to worry, that I could get used to it after a couple days, or maybe it was just elevated because of the drive in and walk over.  She took it again later in the appointment, discovered the M.A. had used the wrong sized cuff, and my BP was 106/70.

I started out by asking her how long I had been coming in and saying "I'm soooo tired", and that started the discussion about Provigil, which Dr.Y. had written the Rx so I could use my coupon for a week's supply (though I get 2 weeks 'cause I'm cutting the 200 mg. in half).  She told me that she would work with insurance to get it approved if it worked out for me (and it seemed it would, as I was already more alert and happy about it), then told me I couldn't take Phentermine (appetite suppresant) while taking Provigil.

I really wanted the Phentermine to help me lose some weight, but being awake is realllllly important to me, and I assume I will be more active and able to burn calories.  I suggested she give me Rxs for both, in case the Provigil can't be approved and I can't afford it, and she agreed.  I'll only get the Phentermine filled if I can't get any more Provigil.  She knows and trusts me.

I told her about my appt. with Dr. Y. during my flare of symptoms, how excited I was at how she reacted, and then showed her the chart notes that said everything was fine and normal except for tremulousness and hesitant tandem.  Her thoughts were that Dr. Y. must have been busy, didn't finish my notes until the end of the day, and just used a template.  We discussed how interesting neurologists were.

I asked if she thougth it would be out of line to send Dr. Y. a note expressing my surprise at the content of the chart notes from that date, asking if possibly the transcriptionist had made an error, since I remembered that appointment in a different way, and enclose my "journal entry" (post on this forum) from that day.  She thought it was a great idea, that the transcriptionist error was a good way to approach it, and that it was a good idea to have it in my chart.

I found that post, put it in a word document, and found I had to edit some comments (hee hee), and I've now put it in a true journal entry, if anyone wants to read it and comment.  I'll work on a note to send with it and drop it off at Dr. Y.'s office on Wednesday when I'll be driving by there.

Dr. S. referred me to a neurologist for a nerve conduction study of my right arm.  I have to go to neuro #2s office, but I'll see a doctor that did studies on the same arm in 2000 and 2001, when I had a mild ulnar neuropathy, which resolved in 2001.

She also sent me to get my Vitamin D levels checked, saying my file said it was time, and that the acceptable levels were more than they used to be, so when I had tested "high" before, that # would be considered normal now.

We discussed my PT, and she suggested that they work on my lower back, too.

I stopped at the blood draw station, made a follow-up appt., tried to get the Provigil filled in the pharmacy downstairs, and found out that they don't take any Rxs with any form of Medicare coverage any more.

I walked back to my apartment, then drove to the DMV, where I waited for 45 minutes to get my permanent handicap parking placard, as well as a form for reporting an unsafe driver.

I then went to Dr. H.s office, and picked up my new knee brace, took it home, and tried it out.  It's really cool, but it doesn't have the heat insert; Mrs. H. must have been talking about a different brace when I heard that part.  I put the brace on, pumped up the compression valve, and walked (more easily) upstairs and checked in on the forum.  

Then I had to go to PT.  The therapist is very nice, listened when I told her about my multiple issues, and worked up a plan of action.  She gave me three exercises to do, and printed them on a page headed "Kathy's 'no metal in my knee' exercise plan".  We discussed working on my back, too, and she said that it was simple to include it in treating my knee.

I then went in the Container Store, bought a couple stocking stuffers, then drove home.  My roommate had gotten off work early, and wanted to go to AAA, so we hopped in her car and drove there to buy passes to Disneyland (30% discount plus a free parking pass!), then went to her bank in a store, where we picked up a big sandwich for dinner, as neither of us felt like cooking by then.

I did two loads of laundry while watching TV and eating dinner.

About 10 hours after I took my first dose of Provigil, my tremors got really bad, and I got a headache.  The headache cleared up after I ate.  BTW, I kept too busy to have time to snack, and my appetite seemed less than before.

I put more than 8000 steps on my pedometer yesterday; the past few days have been around 2 or 3 thousand, as I was too tired to do much of anything.

I still felt dizzy and fuzzy-brained, but I felt so much more alert and alive!  I talked alot, so it was more obvious how I have trouble finding words, but I was mostly talking to people that know what's going on with me (my poor PT learned a lot, quickly!).

I got more sleep last night, so I'm hoping that today will be even better.  I need to go fill up the gas tank, pick up a few things at Costco (where I get my gas, too), and maybe pick up a gift at Target (same area).  I then need to trim some chicken breast that I bought a couple of days ago but didn't use, freeze it, and maybe vacuum.

Tonight is a soccer night; the University of Porland Pilots Women's team (won their division title) will play their first Play-Off game on their home field at 8 pm, but first University of Washington will play a game on the same field at 5 pm, and my soccer pals want to see it all, so I'm driving in to meet up with them.  We'll probably grab something to eat in between games.

So, the moral of this story is, I'm getting a whole lot more done, and so far the only side effects are some increased tremors, talking too much, and a little crash as it's wearing off. I did read quite late, too.

Woo hoo!

The sun is shining, the leaves are gorgeous, I'm alert enough to notice and enjoy it; who could ask for anything more!?  Who cares if this took even longer than usual to type because of my shaky hands?  

Smiles all around,

18 Responses
293157 tn?1285877039
this sound so nice to hear you sound so happy.... you do sound busy and that's a good sign...when do you leave for holidays?  

I'm glad your doing so well...now remember not to take both meds...??  OK...

take care
405614 tn?1329147714
I won't get the other Rx filled until I have no more Provigil; don't want to accidentally take the both and see what kind of side effects might happen!!!!

I fly south Wednesday, November 26 at 7am, and fly home on the 30th.

I just found out my roommate will drive me to the game, so there is no hurry to fill my gas tank. She'll even take me by my pharmacy on the way, so that changes my list!  I guess I'll straighten up the townhouse and maybe try making some jewelry; I have one badge lanyard to make that I've already been paid for, so I need to get it done.  I had sent a finished one to the lady that wanted it, and she liked it so much that she paid me for it and the next one that she ordered!  Now if my hands don't shake too much...

be well,


335728 tn?1331418012
Wow...sounds like you are just getting to be a going concern eh?  I am so happy to hear the the Provigil is working and you are feeling so positive!  I feel pretty much the same way on the anti-depressant but I am still incredibly tired although Tippy slept in until 8:30 this a.m. with no outings to pee in the middle of the night!  Yee haa!  She is really a living doll and I am soooo inlove!  Anyway, I am really happy for you Kathy that things are looking up and I hope to hear more positive stuff in the near future for you!

Lots of Hugs,
405614 tn?1329147714
If Tippy keeps sleeping through the night, can we have her talk to Fluffy?  

I'm so happy that you're feeling better; anti-depressants can work on so many levels. I think Tippy's good medicine, all on her own.  She is such a cutey pie!  

I just got back from Costco and Target.  My roommate had called back to see if I would like her to pick up a sandwich for me, and I talked so much she told me to go ahead and do my shopping and fill my gas tank.  She's not feeling well, and she said I was wearing her out just listening to me.  Oops!

I had a good time chatting with the cashier at Target, the kids pumping gas at Costco, and the cashier inside Costco, too.  :oD  I hope I don't have people shushing me at the soccer games!  Naw, people yell a lot there.

Only downside is my lower back is hurting badly; I think from the PT exercises I did yesterday.  I'm using an ice pack now, and took a pain pill.

I put on a PILOTS temporary tattoo and my earrings I made with soccer-ball beads on them for tonight's games.  I'll have a great time, pain or no!

Bunches of Hugs,

428506 tn?1296560999
Confession--I didn't read all of your post yet!  I'm sneaking in some MedHelp amidst laundry and dinner prep.  (I'm a wild one, I know!)

I just wanted to say I'm glad to see that the provigil is working.  It sparks a general Q from me:  What sort of risks are there in using anti-fatigue meds?  I hinted at it once with my neuro, and he so quickly made me feel like a pill seeker, I shied away from further pursuing the matter.

Thanks, and I WILL catch up on your posts, just shouting out quick in the meantime!
428506 tn?1296560999

just to clarify, I don't think provigil users are pill seekers!  I think my doc has a narrow view and want to know more about these medications.  It sounds like it could really be of help to me.
486038 tn?1300066967
Wow... ok. first off, that's not fair.....  but I just want you to know that I'm not jealous one hint, I know that you needed that med and I'm so happy that it's working for you.

Keep us updated if it keeps on working, if all else fails I may end up asking my PCP for something like that down the road. I keep thinking that I will just push through this and that today, I will go and do this, this and this on my list, and then after one or two things, such as shopping or baking a cake I am so exhausted I have to sleep and then I am out of comission the rest of the day with muscles that refuse to work properly anymore and pure exhaustion and a numbly mind. It sure doesn't help life move smoothly, now does it? I'm really happy this made such a difference for you!
627818 tn?1271780626
You make me tired just reading all that you have accomplished! Whew! That is such great news, though! You must be just amazed at yourself - I would be! I switched from one antidepressant to another a few years back and couldn't believe the difference!

Go, Huskies! Go, Pilots!
405614 tn?1329147714
OK, so the second day didn't run as smoothly as hoped.  I'll write another post, as this one is wordy enough. Thanks to those of you that managed to read it all!

Wonko, my PCP didn't want me to try Provigil at first, until all the neurological symptoms came more clearly to light, so she knew my fatigue wasn't just from staying up all night reading or playing computer games or whatever.  :o)  Oh, and I understand about you not reading the whole post; it came sailing out of me!

I don't have the printout from the pharmacy about the risks; I remember the usual stuff about not taking if you're allergic to it (duh!), I think it can reduce the effective of birth control, and there were some drug intereractions, like it can change how your liver metabolizes diazepam, either increasing or decreasing it's effectiveness.  Diazepam just popped into my head because I take 5 mg at bedtime for muscle spasms.

It can make you more alert, but doesn't cure what makes you drowsy.  My dizziness and balance issues are still there, but I seem to be able to react more quickly.  I posted earlier that my searching for words is more obvious because I talk faster.  And more!

Sunny, you would still have to be careful about your balance, and your doctors know all the stuff that would decide whether or not it would be right for you.  I would just love it if you could have lots of energy!  

GrannyJo, I guess it wasn't U.W., it was some other WA school, the Cougars.  They did well, but the Texas Longhorns wore them down and won.  The Pilots beat Northern Arizona, 6-1, so we play Texas on Sunday afternoon.  They were tough and fast, but we're young, determined, have a great coaching staff.  We also have the Purple Pride, these crazy guys (pep squad) that beat drums, sing songs, tease people, lead cheers, and wear kilts and body paint.  It was cold last night, so most of them put coats over their body paint as it got colder.  It's supposed to be sunny on Sunday, so I'll take sunglasses and a hat instead of gloves and a scarf.

147426 tn?1317269232
Well, you asked if there were any dangers to Provigil - uhhhh, yes, but it does no good to forewarn people.  If you overdo it - because you finally feel great - you PAY THE PRICE.  Bigtime.  The next days can slap you upside the dead.

So, if you crash this weekend, it's all a part of a learning curve as to how much you can do without doing penance.

Hope you are well!, but I see your "mood" today.

405614 tn?1329147714
Re:  Quix's warning:  See my today's post!

Tail between legs, but still hopeful,

Avatar universal

I had been on Provigil for several years and I loved it when I started it. It did make my heartbeat fast and I would breath hard. I could stay awake for a long time, but there were times I took it and I crashed.

I did have problems with getting it filled. Every time I went to the pharmacy with a new prescription that didn't have refills on it, the pharmacy said they couldn't fill it until my doctor fax over a letter with my diagnosis. There are only a few diseases that are allowed to have Provigil and insurance pay for it, and it is expensive and there is no generic.

Over the years, the fatigue got alot worse so I am now on Adderal ( it's like Ritalin). It is pure amphetamine and I don't eat. My other doctors are asking why I'm losing so much weight - I said it's the medication. Usually at night I will start to feel sick and I then realize I haven't eaten all day. It to will make me crash after a day or two, but If I don't take it I can't stay conscious. The Provigil will deter your appetite, but after months of use that part stops ( or at least it did for me).

My doctor is now telling me that the numerous old & new lesions on my brain have caused me to have narcolepsy. I have had 18 accidents since the summer - I know GOD is with me because I have not hurt anyone, gotten a ticket or hurt  myself. I have twice fallen unconscious while pulling into my drive way, so I have crashed into the house two times- each time the sound of the crash woke me up. The MS fatigue is REAL and can become severe and it will start to cause you to lose your memory, not think correctly/clearly (I forgot how to add the other day and I have three college degree's it not like I'm a school drop out) and It is causing me problems at work. I rarely drive anymore and If I do I make sure that I have plenty of Adderal in my system.

I'm glad that the Provigil is working for you and I pray that your disease doesn't progress to my status. Take of yourself and If you ever like to talk, I'm always online.

May GOD bless and heal you,

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