First day of nuvigil

[steph74]

I saw my neuro yesterday because I'd been feeling so much worse the last few weeks.  I was completely fatigued, couldn't focus/concentrate worth a d*mn, and everything just seemed to be worsening--weakness, pain, etc.,.

Well, luckily my neurological exam wasn't particularly worse than last February.  My neuro felt like the fatigue was making all my sx feel worse, which is quite possible.  When I'm normally overtired, everything always feels and seems so much worse to me than after a good night sleep.  She thinks the problem is really fatigue right now.  She suggested trying nuvigil, so she gave me a sample of 150 mg and told me to let her know if it's working and she'll call a script in for me.

I have really mixed feelings about taking a medicine to help with concentration/energy.  I still have this fear that I should just be able to "get over" all of this if I try hard enough.  I actually can cope realitively well at home with the kids (though I'm exhausted), but my job is very intellectually demanding and it's been getting so bad I'm worried about my job performance.  I can't remember sh*t (or "CRS"), read a paragraph 4 times and still don't know what it said, have to write EVERYTHING down or I forget it...  Even with non-work stuff I was suffering.  I couldn't read a long post here all the way through, even the op-eds in the NYTimes, my favorite, I could parely read.

My mixed feelings aren't helped by the fact that I try to explain this to my husband and he says, "I have that, too."  (Actually, I think he does have ADHD and would benefit from medicine, but he won't see the dr.--a whole other story.)  So I end up feeling like this is normal, but no one else at work seems to be so foggy.

So I guess we'll see how today goes with this medicine.  I don't feel jittery, which is good--hopefully I'll be able to focus better today.

Stephanie

[Nancy T]

Hi Steph. For years--about 16, to be exact--I kept thinking, I could FOCUS and pay attention and get rid of this woozy-foggy feeling if only I would just slap myself across the face, have better self-discipline in paying attention, lose weight, get in shape, etc.

When I found out that other people had chronic dizziness and also had "the fog," I felt so relieved; it wasn't "just me," it wasn't normal.

When I started taking drugs for that problem--first Provigil, later Ritalin, and finally Strattera--the difference was amazing! My eyes and attention could "stick" on things at last, instead of sliding off them like water drops off Teflon.

Hope the Nuvigil continues to help you! Take whatever you need to keep your life as normal as possible. As someone else mentioned, if you could manage it with 8 hours sleep and some caffeine, you would have done so already. Sometimes you just need pharmaceutical help!

Take care,
Nancy

[steph74]

Thanks everyone.  My dr gave me a free sample (7 days) and I just wrote to her to ask her to call in a real rx.  It's scary how much better I feel.  I truly feel almost normal; I can focus on conversations, I don't feel like ...  I don't know how to describe it but the fatigue is so greatly improved all of my other sx just seem more manageable.

I think I will have to come to terms with it because, just like the TN and occipital neuralgia pain, if I wasn't on meds for it, I'd be incapacitated.  The fatigue was incapacitating me--maybe not as bad as others, but it was bad.  In some ways I almost didn't realize how bad until the medicine made me feel better.  Thanks for all your comments on this.  It's reassuring to know people understand.  I think not having a dx makes it hard for me to accept sometimes that there is actually something physically wrong with me.

For all of you whose insurance doesn't cover provigil, my neuro said that nuvigil is actually a little cheaper so more insurances cover it, and (the best part) provigil will be go generic in 2011!  (Not that you want to wait a year, but still--it may be much more affordable then.)

Stephanie

[britinusa]

my insurance just approved nuvigil after declining in November I had tried everything else for extreme fatigue. I also started Wellbutrin for depression (my first antidepressant ever) and I love them. Nuvigil has been a miracle drug for me and I almost feel normal when I take it.:)

[Fluffysmom]

I'm happy for you that your neuro exam was relatively the same as last Feb.; that is a good sign.

I've had to come to terms with pharmaceutical intervention.  I'm the person that didn't want to take so much as an aspirin when I had a headache back when I was practicing judo and climbing mountains.  Things changed.  I'm on several medications; this would run on too long if I listed them all, lol.

I take Lyrica for RLS and nerve pain, add Tegretol for more intense nerve pain, such as TN, and Vicodin for arthritis and orthopedic issues, Provigil when I can afford it, as well as Avonex.  That's the short list.

I don't like taking all my medications; I go over the list now and then to see if there are any I could do without, and realize that my quality of life would suffer.

I've heard the "everyone has that" type of comments; my best friend gets frustrated with me and tells me I make things worse by worrying and talking about my issues.  She has said that I could be in a lot better shape if I had a better attitude.  

Other times she is very understanding and supportive.  I think it's very hard for her to come to terms with: I've only been diagnosed for about 8 months, though I had symptoms for a couple years before that.

My fatigue is awful.  I've been on disability for other health issues for years, but in the past was able to shop, cook healthy meals, and do what exercise I was able to, such as water aerobics, and have some hobbies.  A couple years ago the fatigue started taking much of that away from me.

I got a free week's suppy of Provigil through my third neurologist, and the difference was so amazing that I had no problem with adding another medication.  Until I found out that my insurance wouldn't cover it.  I've dipped into my savings to get my prescription filled.  

I've tried Ritalin and Amantadine, but neither worked for me.  I'm going in for a sleep study so my fourth neurologist can try again to get Provigil approved for me.

I hope that you can come to terms with taking the Nuvigil to improve your quality of life.  It is your decision.  I hope your husband will come to understand that what you're going through is unique to you, as what he experiences is his experience.

He'll probably notice that you have more energy and focus, get more accomplished, with the help of the Nuvigil, and come around.  He may just go to the doctor himself.

Sigh, I wish I could "get over" all this, too!

I've ran on way too much, sorry!

Take care,

Kathy

[addicted2harleys]

I just sent away for a weeks trial supply of this to see if it helps me with my fatigue.  Unfortunately, it is not covered on my insurance...neither is the Provigil.  

I hope it does the trick for you!  Fatigue *****.

Does anyone have any other ideas for fatigue besides the Provigil or the Nuvigil?

Addi

[Ufrustrated2]

>> I still have this fear that I should just be able to "get over" all of this if I try hard enough.

let us know how you do this ... LOL

[twopack]

When it comes to chemical treatment of symptoms I think all we can do is try the available drugs when our body screams that it needs help and see how they work for us.  If they don't help or don't seem a good fit there's nothing to say we have to stay with any drug.

And really Steph, if you could power through this with a cup of coffee, a nap or a totally positive attitude alone, you would have already been out of here and on to some fun parts of life.

It sounds like the Nuvigil is working for you the way it is supposed to.  See, you don't have to feel too bad because it's not like it's giving you an unfairly better day than hubby is getting ;)

I can relate to the family not relating.  Then again, they probably wonder if I have any idea what it's like for them to live with a person with MS.

I hope this is the first of many better days for you.
Mary

[steph74]

Thanks for your "rambling" comments, Frank.  It's nice to hear you're coming to grips with the medications.  I've mostly come to terms with the pain med for the TN (first gabapentin, now Lyrica), but sometimes, when I'm relatively pain free, instead of just appreciating it, I wonder why I need to take it at all.  Then the pain flares up and I go, "Oh yeah... that's why!"  :)  Anyway, I hate to take it but I'm resigned to it at this point.

So far I do feel more ability to focus.  It's not like I'm completely hyper-focused on something, I just feel slightly more "normal" (if I can even remember what that feels like).  At least I'm able to read and write without losing focus after two or three words.  :)

Funny the old age comment... I mentioned that to my neuro yesterday (about a more embarassing problem) and said, "maybe I'm just getting older" and she looked at me and said "You're not *that* old!!"  (I'm 36.)  I really appreciated her comment because it reassured me that it's *not* normal to be experiencing these things at this age.  (Who gets bilateral trigeminal neuralgia at 34??)

I'm not dx so no DMD for me, but maybe that's good because I hate taking the meds I'm already on.

Stephanie

[Csativa]

Hi Stephanie,

I surely can empathize with you.  I see my neuro today and plan on asking her aboout nuvigil. The fatigue is so "crushing" X10!  I can also relate to the cognition problems, pain, and other symptoms seeming to be much worse when feeling like this Even sleep, when I do sleep, does no good.  I wake up and barely able to get out of bed.  And as far as your husband is concerned when he says "I have that too", well everytime I complain or comment on a cognition problem, my fiancee says "I do that too" LOLOL  She says it's just a product of old age, it.s normal to forget stuff like names, what you've just read, et. I tell her yeah! but do you ever forget why your sitting on the toilet with your pants down! LOL (I love her to death but sometimes...)

As far as your comment that you should just be able to get over all this stuff.  "I have that too" lol  For me it was not easy comming to grips with the fact that I had to rely on medications to help keeep my life somewhat normal.  I already take about 12 meds  and I havent started the MS meds yet.  I used to think that relying on meds for anything, even pain, was a character flaw but not any more.  Don't get me wrong, I stlii hate taking meds but I don't care anymore.  I need them, yes there are side effects, but I refuse to make myself feel bad over something out of my control (I feel bad enough as it is.).   I'm sorry for rambling so much.

Frank