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Don't Let This Happen To You...

Hi ...
I just wanted to tell everyone about something very scary that happened recently....

I was diagnosed at the end of Nov and probably about a month ago I started having cognitive problems....short term memory issues....confusion.....losing myself in the middle of a conversation....etc....

Last Thurs I was at work trying to explain a procedure when all of a sudden I felt like I just woke up in the middle of the conversation....I knew I was talking but wasn't sure what I was saying....I was so scared and embarassed because, who knows, I could have been saying anything.....I could see the womans face but it was fuzzy all around for a few seconds and then cleared....I was a little dizzy and nauseated....I made an excuse and got myself out of there....thank goodness she didn't seem to realize anything was wrong.....After resting a few minutes, I felt a little better and went in to another room.....again, I started to feel like I was "fading away" .....

I had just had an mri the monday before and my neuro had called and told me that it looked better not worse, so I had thought that what I had been feeling must be psycho-somatic esp because I had been reading so much on here lately about brain fog ....(that is until this last horrible episode).....at that point, I knew something was seriously wrong!!!!

to make a long story short....it turns out it was all from the new med I was taking for fatigue....amantadine....I haven't taken it since thurs and I am so much better....no Einstein (lol)...but able to hold a conversation :-)   It is a shame though ...I did feel like it was helping the fatigue....

I was so depressed and convinced my ms was progressing very rapidly and that I wouldn't be able to continue to work....I mean, I'm a nurse and didn't make the connection....I feel like such an idiot.....I am going to try and pay much more attention to how everything is affecting me in the future.....my mind was so messed up I couldn't even remember if I had had a problem before I started the new med....So please, be careful with all the meds out there....the side effects can be worse than the disease!!!!!

I hate the thought of trying yet another new med but I really do need something to help w/ fatigue....I'm having a lot of trouble making it through 12-15hr workdays......My neuro suggested maybe trying Ritalin.....he says Provigil is the best, but it is kind of pricey even w/ my insurance.......So is Provigil worth it? ....Has anyone tried Ritalin?   Has anyone had any weird s/e w/ either med???  I would be very grateful for any input....

Robin
14 Responses
Avatar universal
Hi Robin,

I so sorry you had this scary event, but glad it was the meds and not your MS!!

I'm not dx, so haven't taken anything for the fatigue, but I know others who really rave about the Provigil.  I had heard it was really expensive, but maybe you can check into it further.

Others will check in and tell you their experiences and maybe that will help you make your decision.  I hope you find something that will help, and don't have any more side effects.

Hugs,
doni
572651 tn?1530999357
Hi Robin,
It doesn't sound stupid at all - none of us know what to expect next from our MS, our non-dx'd mystery diseases or the myriad of drugs we take.  Thanks for sharing this experience so others may learn from it!

feel better,
Lulu
152264 tn?1280354657
I have taken both Provigil and Ritalin, for "brain fog" connected to dizziness rather than for fatigue, although certainly they helped with fatigue, especially the Provigil, I think.

They both helped the "fog" tremendously, as I was able to make my mind and attention "stick" on things. I had no significant side effects from Provigil except that when it wore off in the afternoon I would feel a kind of odd, hard-edged tension or something for awhile.

Ritalin (a low dose--I took 10 mg twice a day) is great for concentration, motivation, cheerful mood, and faster typing! :) I had no side effects whatsoever.

I now take Strattera and it works perfectly for the fog. It's not for fatigue, though.

Nancy T.
Avatar universal
Thanks for the warning, Robin.  My neuro prescribed Provigil for me on Friday, and while I was waiting at the pharmacy I was imagining being able to drive long distances again, where I'd go, how I'd get through a whole day without a nap.  But it was way too expensive.  ($395 / month, not in Kaiser formulary so no insurance help), so I left without it.

The pharmacy said they'd send the neuro a message asking if there's a less expensive alternative.  If she prescribes Amantadine, I'll stay on the lookout for the reaction you had.  

Caffeine isn't for me due to migraines.  Exercise helps a lot, but not enough to keep me awake later behind the wheel.  Occasional bursts of new flavors (sugarless candies) and sugar rushes help.  Anyone know any other "lifestyle" changes that help?
2 Comments
Lay low on wheat.
Make sure to check GoodRx on all your prescriptions and you’ll save some money! I’m a Gold member, for $5/mo. Saves me hundreds and I have coverage for my meds, sometimes GoodRx is better. Good health!
620048 tn?1358018235
I have been taking provigil for way over a year now and I cant really have a life without it.  My Dr gave it to me when i was falling asleep at the wheel.  I still cant drive long distances though. My fatugue is very bad, i can barely get up nor do I care if i was not taking it.

Its very expensive and its one drug you can't fnd any cheaper, however my insurance covers half of it now So I only pay $200 and something now. I wouldnt have a life now and my new Dr wants to take me off it.....but that will be awhile yet.

Its great stuff and is not a narcotic.  I figure i work two days a week for it....

let us know if you find somehing that will help you.
405614 tn?1329144114
If you want to give Provigil a try, go to their website, and you can download or call them and have them send you a coupon for a week's free trial.  Have your doctor write it for 200 mg. and start by cutting them in half.

I tried it that way, and it made such a difference in my life that I bought myself a prescription of it for Christmas; it was only  (only, ha!) $306 at my pharmacy, so you might be able to find it for less than your first attempt.  Since Kaiser isn't covering it, you can check with other pharmacies.

I had tachycardia that made me feel like I was going to pass out when I took a medication similar to Ritalin, so I'm leery of trying Ritalin.  My resting heart rate was 150; not comfortable.

That being said, that was just a side effect that I experienced; it may be totally different for you.

Best of luck,

Kathy
759605 tn?1234137968
I have tried both. Provigil worked great for 2 weeks, then stopped. They wanted to put me on 200mg after I told them It stopped working, but I declined it for now. I have been on Ritalin & it makes you more aware & your comprehension is much better-I take it only when I need it cuz you have to go to the doc's office & pick up the prescription every month. I say try it!
Good luck!
Lisa
Avatar universal
Hi,  Try modafinil- its the genaric to Provugul and 1/4 the cost( my Ins. wanted $650.00/month copay because "it's no longer in our formulary". the change from a Tier 4 to a Tier 2 is amazing. Still, it's bettter than-mg of amphetamine salts-no fog.
Best of luck
710547 tn?1295446030
I've tried everything.  At one point, after being on provigil for a couple years, I didn't feel it was working, so switched to ritalin.  Unfortunately, my insurance didn't cover THAT!  Isn't that crazy?  It wasn't the really expensive drug, like provigil, but still it was a lot for me.  Then, I tried a type of amphetamine, and was on it for a short time.  Now, I'm back to provigil after being off all of it for a year.

Provigil has a strange effect of many of us - it doesn't work really well until evening, when it seems to kick in and make your brain come alive.  It does that for me, and I've heard that from others as well.  I just want it to go to work right away and fade away at night.  I have even set the alarm for 4 or 5 am to take it so that it will be working when it's time to wake up.

The thing I don't want is to still have any drug working to keep me up at night.  It's why I stopped taking these drugs before.  I felt like I was getting into a roller coaster of needing uppers and downers.  That being said, the fatigue is so horrible, and so difficult to describe to those who don't have it.  It's worth anything, if you can find one of these drugs that works for you.

And - look into the generic for provigil - a pastor of mine at my church takes that and feels like he has a new lease on life.  I hope you find something affordable and effective.

Blessings, Jan
710547 tn?1295446030
Sorry - didn't see this was such an old thread.
Avatar universal
Have you tried Modifinil? Its the generic form of Profigil not sure I spelled it right.  Also I use RX outreach to buy my meds.  I dont use my insurance at all.






2 Comments
I have heard of that I think.  Is that the app that you use that tracks pharmacy pricing near you and finds the cheapest source of prescribed medication?  /that's a good tip.  You find it's cheaper to do this than use your insurance?
I know Goodrx is so much cheaper to use than my UHC. It's free too.
Avatar universal
Robin, another nurse here, I took adderall for a long time and then it’s effect began to wane and I didn’t want to up the doseage.  Now I just listen to my body and if I “hit that wall” of fatigue, I go take a nap.  I had to give up working as in ER, you just don’t disappear for a nap!
Yes, you are correct, the side effects of meds can clash with each other.  I am now on many meds, including cardiac meds and ever vigilant of new problems and side effects.  Fortunately my neuro often makes cardiac questions that my cardio didn’t think of (forest for the trees syndrome) and he’s been right on the money!
I so appreciate my neuro!
Avatar universal
I take Ritalin for brain fog that comes from retaining C02 -- I'm on 02 24/7. It helped, but 20 mg a day made me aggravate easily. 10 mg a day cuts through he fog, but doesn't make me cranky.
Avatar universal
Provigil works great for me, but it is expensive and not covered by my insurance.
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