I hope you are able to find something to help with your fatigue. Mine has made me feel like a totally different person than I used to be, and that's not a good feeling.
Take care,
Kathy
I wish I could take provigil. I may see if I can have something for my fatigue. I am always to tired. If I have a good day I will be down for 2 days. Nette
Sho, thanks, I printed out the info. Unfortunately, my lesions were so many that the radiologist didn't list locations, and my neuros so far haven't mentioned locations, except to state which areas I don't have any that people with MS usually do have them. Yeah, I'm undiagnosed, on neuro #3, an MS specialist.
I agree, everyone be careful when you're driving, or find another way to get where you need to go when you're not feeling like you can drive safely. There are enough people out there driving while texting, doing business or discussing their love lifes on their cell phones, shaving, putting on make-up, or whatever. LET'S be safe out there! :o)
Lori, I only have a $2.60 co-pay for generics, so if the Adderal or generic ritalin makes my heart race, I can afford to throw it away. I found a local pharmacy that disposes of such things in an eco-friendly fashion; I hated throwing old or un-used medications in the trash, especially when reports started showing drugs in the ground water, and even drinking water supplies.
If neither of those work for me and I get approval for the Provigil, I'm curious what my co-pay will be. I usually only have two different prices, but they do have higher-tier prices for some drugs. I get extra help from the state, so I'm curious as to how that will work out.
No matter what, the price will be worth it, because the fatigue I've been living with is really awful, and I'm sure is the main reason for my weight gain.
I have an electric leaf blower to try out today (borrowed from my roommates mother), but I promise everyone that I won't overdo it!
Kathy
When I started the Provigil I had to break the pills in half because they were so strong. The other option for fatigue is SYMMETREL (Amantadine Hydrochloride is the generic) It's an old medication and started taking it in in the early 90's.I never saw a difference in my fatigue.
The Adderal (salt of amphetamine) is the generic. I started out with 5 mg. You kinda have to work with it to get a milligram that keeps you alert all day now I'm on 40mg per day and I feel like I need to go up to 60mg.
You will have to be care with any medication you take due to past heart problems. The Ritalin also has a generic. I pay a $10.00 co-pay.
I'm it your get some help for your fatigue, because it is terrible to live with everyday.
Take Care,
Lori
Just wanted to point out an article I came across recently that talked about MS and fatigue.
Summary: The authors used MRI to investigate the relationship between fatigue and the location of lesions in the brain in people with MS. They found that specific parts of the brain were related to fatigue.
http://www.msif.org/en/research/ms_research_news/fatigue_multi.html
Click where it says weblink to get more details.
And, everybody, please be really careful when you drive. It's so scary to feel like you're not up too snuff while driving, but so hard to lose that independence. It's too bad it's so hard to do so many things without driving.
sho
Thanks for your reply; it makes me feel better about the possible need to start with Ritalin (is Adderal inexpensive, so they might have me try that instead of Provigil?).
I'm not diagnosed with a neurological disease yet, but the fatigue is very real. The change from the Provigil was amazing, and I was pleased that it didn't make my heart beat fast. Back in 2003 I had a procedure to put an end to frequent tachycardia, where they fed a line from my femoral artery into my heart. It pretty much worked, but I get occasional flutters of fast heartbeat, and was afraid anything to keep me awake might make it worse.
I only fill the gas tank of my little Kia once a month, since I only drive when I feel totally safe to do so. My two days on Provigil made me feel much more alert while driving, though I still didn't drive far, just to make sure.
My PCP has assured me that she will try everything to get me approved, and if my insurance just requires that I've tried the lesser expensive option and it doesn't work for some reason, then she should be able to get me approved. I do like the combination of appetite suppresant and anti-fatigue medication, but I remember the days when amphetamines were very bad things. I've learned that with proper supervision and used only when a medical condition calls for it, some of the old BAD drugs aren't so bad.
I take Vicodin for pain, and as it's currently on a "bad drug" list, I have some doctors and pharmacists question me about it. I tell them that it is prescribed by my PCP, and is between her and me.
I pretty much stick to one pharmacy, with a really nice and helpful pharmacist. He had to have open-heart surgery a while back, and I did a lot of praying for him. He's now back full time, just as pleasant and helpful as ever.
I'm sorry your disease is so far progressed, but I'm glad that you've found some medication to help, and that you're here with us to listen and share your experience and kind words. It's nice to have you around.
Kathy
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,
Lori
Re: Quix's warning: See my today's post!
Tail between legs, but still hopeful,
Kathy
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.
Quix
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.
Kathy
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!
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!
~Sunnytoday~
addendum:
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.
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!
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,
Kathy
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,
Rena
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,
Kathy
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
wobbly
undx