Ok, what a DAY! I was finally (after my Doctor appealed the denial by my insurance) approved for Modafinil(PROVIGIL) yesterday. 200mg tablets. I took half a tablet after waking up and the other half before noon, per my Drs instructions. I did more before 1pm than I had done in the last week! I love to clean! I always have had a nice clean house (I know, ive been told before thats weird for a bachelor.) My mom has said I had the neatest, cleanest, most organized house she had ever been in, before MS of course. Today was a brand new day! I cleaned, cooked, ran errands etc... My legs, thighs, rear end, back, shoulders and feet are SORE already.... tomorrow is going to be tough, but I don't care right now. I feel like MR E-BUNNY.... I can't believe it. 🤣 that being said, I am prone to side effects and I am now praying i dont get them cause some of them can be pretty bad. For the first time in a long time, tomorrow looks so bright 🌞 I'm gonna have to wear my shades all night! Lol I can't believe the difference in just the first day! Woo whooo!! It was even a little warm at 91° today and It didn't seem to bother me all to much. Although I did think about making sure my cooling vest is ready to go for anything that has me outside for to long. I havent felt this energetic in almost a decade, now if I can keep the side effects at bay, things are going to be better. As always all y'all are in my thoughts and prayers.
God Bless y'all
Allen
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Allen5280
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Sounds like you had a great day. My doctor wanted me to try modafinal, but I feel like I take enuf pills already and don't want to take anymore. I think I might have to reconsider.
My energy level is still having me want to do more stuff, my brain is saying, no, no, no... your already sore enough! I'm gonna have to pay the piper tomorrow! I've been in a sedimentary state far to long to be pushing myself anymore than I already have. I feel like a kid on Christmas morning!!!
My prescription is for 1 pill per day, in the AM but my doctor said to start out taking only 1/2 of a pill to start with for about a week then go to a whole pill. I have never needed to go to the whole pill because 1/2 works well for me. He said to take it only in the AM because a lot of people cannot get to sleep if they take it a night, kind of like drinking caffeine to close to bedtime.
Morllyn , that's exactly the reason I am to take the second half before noon, to avoid sleeplessness. I already have sleep issues on going to sleep. I have adifficult time shutting my mind down and it causes insominia for me. It was late when I finally drifted off last night. Everything turned out ok this morning. I woke earlier than expected and I am sore from yesterday, however, I don't feel so completly wiped out as I usually do. I am sore, sore, sore but that's ok. It's a good thing, I got stuff done so I don't mind paying the price and I feel awake and energized. I am going to ke3p it to half a pill today. I don't want to feel antsy, like I have the NEED to do something about it. I am taking a recovery day today. I need to ease into this newfound energy!😁
Thank you oklaguy , we are hoping that this will help me with my post infusion reaction of exhausted energy. I have my next on the 5th and hopefully I will still be able to make the support group this time around!
That’s awesome Allen5280 ! I hope Provigil continues to work for you without side effects.
I took either Provigil and Nuvigil for years depending on which one Aetna was covering that year. I had to give it up when they stopped coverage for both. My neuro tried prescribing other drugs for fatigue but nothing else worked. I still have fatigue but not as much as when I worked. Maybe the reduction in my stress level without the pressure cooker of my job has made a difference. I certainly don’t have fewer lesions!! Who knows with this crazy disease!
I used to take Provigil or Nuvigil for the same reasons. But they stopped working for me. Now the best they can do is give me Adderall. Most of anything else they have will impact to much on my other health issues, ie. liver, kidney and blood pressure. Sucks, but I can relate. ~terry
I think its just plain wrong that insurance companies can deny medications that are actually wo4king for people. If it were not for my Doctor, I would never had the opportunity to try it to find out. I understand there are some that the prices are crazy. This is one of them that's higher, I think my insurance paid 826.00 for my 30 (30 days worth) It justcompletly unfair for it to be working for someone then they just say... sorry you can't have it anymore. 😣 sorry to hear that Raingrrl . Cusenow that I know how it can help, it makes angry that it was helping you and they took it away. Maybe you doctor could help with an appeal if necessary?
The problems with Provigil and Nuvigil has to do with pricing and politics. I really got into it many years ago to understand why I was not able to get Provigil. It had to do with the drug company preventing any other drug manufacture to offer a generic. They got caught, but out of the mess came Nuvigil as a way to keep the price high. It was a mess and we had to pay the price for it. ~terry
Awww good lad Allen5280 well done just rest up when u can but I bet u feel really good xxx 😊😊😊. I also think it's utterly appalling that insurance can basically call the tune! Coming from Brit land I have to say thank God for the NHS which has it's faults but my Tysabri is paid for and not by me!
I can't take any credit here cause a little white pill had a lot to do with it. 😁 although I had to back off instructions to my Doctor. At the beginning of things I told him I didn't want to take any habit forming medications. Well, I let go of that for this. I am planning to skip it once or twice a week in hopes of avoiding such a complication. I am only frightened cause in not sure how I will function tomorrow... ok I know I'm going to pay for it, I knew it from the get go so ... ok, so maybe your right after all!!! 🤔🤣😂🤣😂🤣😂
You should be okay, it will take your body some time to adjust to it. My understanding is that it is not habit forming [other than it works well and we want it] nor is it a stimulant. I took it for a long time and had to stop and never had any problems with it. I'm glad you have it. It was one of my must take meds just to help me function. ~terry
When I was looking up the possible side effects it had a description that it can be... well at least for men.
Scans of 10 healthy men showed that the prescription drug Provigil caused changes in the brain's pleasure center, very much like potentially habit-forming classic stimulants. Modafinil, the drug's generic name, is sometimes used as an illegal study aid by college students.Mar 17, 2009
My experience with provigil was similar to yours Terry. I never had any problems starting or stopping Provigil or Nuvigil but I’m also seldom sensitive to drugs. When Aetna stopped paying for both my neuro tried both Adderall and Ritalin. Neither did anything for me good or bad. Coffee helps me more tgan either of those two did.
If Modafinil is working for you, I wouldn't worry to much about it. I took the brand named Provigil for a couple of years before everyone banned it's use due to, let's just say politics. After that I couldn't get it [money] when Modafinil came out. I used Modafinil for a while but it just wasn't the same. So I stopped for about a year and tried to use it again and it simply immobilized me. I usually respond well to generics but sometimes some generic meds just don't work for me. Modafinil is one that doesn't work for me. Hope this help
Thank you MS_Indestructible , I was just having some times whereas I felt a little worn out and was curious as to what y'all had experienced with it. I had been feeling pressed for time trying to get stuff done while I was able to.
You will have times of feeling worn out. It isn't a stimulant. When you first start taking it, it might have felt that way. Over time you won't get that "superman" feeling. You will just feel normal. No not the MS normal, maybe closer to how you felt before the fatigue. It works in a subtle way, that way. Your "MS normal" will change and you'll be able to function better overall
The first day I was like wow, I forgot what it felt like to wakeup in The morning and felt refreshed, like I had actually slept. All of my mornings but one, I have felt the same so far. I have seen the sunrise 4 out of the past 7 days, I love the sunrise. First of the morning was a favorite time of mine, what seems like a lifetime ago. Even on my recent slow days, due to overdoing it, I am still feeling quite a bit better than I have been in the last few years. I have also found that when i do feel worn out. I have been able to close my eyes for a little while. I don't actually sleep at all, just rest and slow down my thoughts, like as if I'm trying to nap. I get up and feel rested as if I did nap. The other day I rested for about 20 min and got up and still felt drained so I went form the chair to the couch and rested for longer. Maybe another half hour or so. That's a completly new deal for me. I do have a rechargeable battery now!!! 😁
I take Adderall and have not used Ritalin. I also take caffeine tablets [400mgs/2x/day. They say the average cup of coffee has only 100mgs of caffeine] and that has helped. I just saw my neuro and she just prescribed Amantadine. Though it is not as strong as Adderall, I'm hoping the combo will work. Arg, why can't they make something better for fatigue.
Hi Allen5280 I am ssdw1958 I have a question for you I have taken other medicine and I have had so many bad reactions I am afraid of taking other kinds. I took a statin and I was walking so well in the morning then I took that med and I could hardly walk. That's what seems to happen to me. I get nervous when I take anew drugs. Can I ask you why you took this medicine?
I have MS I was diagnosed in2004 ld gnow my walking i terrible I walk with a rollator a walker with wheels and when I go out of the house I have to use a wheelchair. I know nothing will be a merical but if I just could get some energy that would be a good thing. Would you lete know if you get any side effects.
ssdw1958 , I am the same way as for getting side effects. I am what is referred to as hypersensitive to medications. I've been through 4 different DMTs due to being unable to take the first 3 due to side effects. I am always concerned about them as well. I had an appointment with my MS specialist/neurologist. We were talking about how I had to stop physical therapy andaquatic therapy due to extreme fatigue and weakness. He asked if I would be willing to try it. I also am about to have mynext infusion of Ocrevus on June 5th, my largest side effect of Ocrevus is a 4 to 6 week peroids where i am without strength and energy even worse than my already weak normal. So I agreed it was worth a try because I'm having difficulty keeping up with small stuff. Weakness and fitague have been kicking my tail. So I r3ad up on 5he possible side effectsthis last week awaiting the decision of the appeal to my insurance to make a desicison. This medicine is to combat extreme fatigue. My first day on it has been good, we will see if any of the not so fun side effects pop up later on. I will try and keep y'all posted on how it goes.
Thanks Alan for getting back to me I get so tired doing small things I just took a shower so I was at the dishwasher putting things away and I thought well putting things away from the dishwasher or drying hair, drying hair won out. I hope everything works out for you. I will look 👀 into this medicine.
Please keep us updated on your joys of cleaning I’m a little bit jealous just don’t let my husband find out LOL
Allen, I am so pleased. Praise the Lord. None of us like to take pills, but sometimes it doesn’t hurt to sit back and say, ‘ wait, the Lord gave someone a good enough brain to make that pill, it’s worth a try’ . Enjoy, try and rest tomorrow. Don’t push yourself to much. If you run out of places to clean, you can always clean my house 😂, blessings Jimeka 🦋 🍫 🌈
🤔 hmmm, virtual house cleaning? How well does that work anyway? LOL how about if I just pick some virtual flowers? 🌻🌼🌻🌼💐🌼🌻🌼🌻 lol I will also say Amen to Praise the Lord. I was justbegining to emerge from a long trip down a dark and cold rabbit hole. I have been struggling emotionally for quite along time and I really needed this, especially now. I have been concerned I hadn't been able to get my list of things that needed done prior to my infusion, if it would put me down again. Now, if This continues, I will be able to get caught up with energy to spare. I began to think I wouldn't ever be able to say that again. I would like to Thank everyone for their thoughts and prayers
If that were truly the case Donnie, I should be looking like Atlas, carrying the world on my shoulders, with the pain MS has handed out to me.... 😂.... sometimes pain just plain sucks!
I know that feeling well Allen5280 . I live on oxycodone and fentanyl and it doesn’t take the pain. Along with with gabapentin and Cymbalta. It never goes away.
There has been no medication that has been able to completly remove the pain. I was In a car accident in July of 2000. Going somewhere about 75mph, end over end 6 times, ejected from the car and it came to rest on top of me. On interstate I-44, I was life flighted to Springfield trauma center. Spent 7 days in ICU, reconstructive surgery on most of right side. Titanium Rod down through the middle of my right femur which was splintered in about an 10 inch section of the middle of the bone. Spent a year in recovery and physical therapy. 4 more surgeries in the at time peroid. Bone graph, knee surgeries arm and hand surgeries etc.... I thought I knew what pain really was all about. What could be worse than that??? Then I met MS, was I ever WRONG!
Wow man. You’re a very blessed man to be alive. God must have some big plans for you bringing you thru that. After that I don’t hurt as bad. As I thought. I’ve had so many surgeries I can’t even remember but nothing to compare with that. You have gained a whole lot more than most of us will ever and you still keep a good attitude they it all.
Brother, I get down and out just like everyone else does at times. One thing that MS has taught me is; there truly is not a way to completly understand something that we have not endured ourselves. Thats one of the great things about this forum, we find the compassion and understanding of what each of us go through. The worst experience, the most painful experiences we can understand are what we have endured ourselves. However unique each of our paths are, we only can truly comprehend our own. We can sympathize with one another, we can relate to the challenges each of us are going through. That's what's special about the forum, compassion and understanding for the plight and devistating effects of our shared affliction.
So true Allen. Kinda like the old “I know exactly how you feel” deal. If you haven’t been they it you truly don’t know or understand someone else’s pain or struggles.
This sight has pulled me out of some pretty dark times I must say. Having people who trul understand and can help you thru these times because they’ve been there is truly a blessing.
Without the love of God and this forum I can’t imagine what uncalled for pain I’d be going thru.
Each and everyone that are here sharing in the experiences are a blessing to me also. I don't know where I would be either. I thank God, each and every day for y'all, for my life, for my struggles, for my strengths, for my weaknesses, for my pain. Because, if I were pain free, it would be due to me pushing up daisies 🌼. Which I would have been doing quite a long time ago. Sometimes it's hard to see the blessings amongst the pain and struggles. It's sometimes hard to see the beauty that comes out if devastation. For example, scientists now believe that gold and platinum ate created when two neutron stars collide. Beauty is born out of destruction. I try and look at my life in the same aspect. My devestation is the prelude to something truly beautiful that is going to happen at any moment. I don't know when or where but something's just on the horizon. It may not be in this life, but in the next, it will all be worthwhile.
You’re so right that without the hard times we wouldn’t enjoy the good times. The Bible teaches us to praise God in the good times and praise him in the bad times which is most times hard to do but a responsibility we learn thru pain and struggles. Every hurdle we jump makes us stronger in Gods eyes and that’s what we strive for.
I said many times when I’m told if God’s so good why hasn’t healed you of your pain. My answer is I will receive my healing if not in this life I will when I move on to the next. Cause there will be no pain in heaven praise God. What a day that will be. Hallelujah.
Theee I am on my soap box again so I’ll leave it there that we will be healed some glad day.
well said, "However unique each of our paths are, we only can truly comprehend our own. We can sympathize with one another, we can relate to the challenges each of us are going through. That's what's special about the forum, compassion and understanding for the plight and devastating effects of our shared affliction."
That is awesome Allen! I hope you do not have a problem with side effects.
I woke up feeling worn out for years, couldn’t get going until after lunch, then I was given Provigil by my doctor. Wow! It wasn’t that I was wired or had an abundance of energy but I woke up feeling normal, like I was rested and ready for the day.
I still have fatigue at times, the kind where I am doing fine then a cork is pulled out of the bottom of my foot and all of the energy drains out of me. I never know when this might happen but at least I do not wake up drained every morning. I will take it.
It's very similar for me too. I don't feel wired, like I drank to much coffee. It's more like I am getting a little bit of My old self back. My mornings have been really tough for such along time. Today, even though I am sore, I woke feeling rested. I had actually forgotten what that feels like. I'm still so excited about this change in events! 😆
I’m so happy for you Allen5280 . I’ve been taking modafinil for months now and it’s awesome. Without it I wouldn’t be able to get out of the house. I take 200 mg and I’m able to do pretty muck anything I need. There are still days where nothing helps so I just have to sit around thinking about days I can. Without modafinil I certainly wouldn’t have taken on this 67 gto to play with.
Just take it easy and don’t over do my friend. Even Superman has to take a break sometimes. I overdid to many times and had to steroid infusions earlier this year.
To put it plain modafinil changed my life after ms.
Doubled51 , thank you and yes it is awesome. I am sore today, but in a good way. Not the new "normal" of the life being sucked out of me because I pushed myself to hard the day before. It's an, I did something yesterday sorness. Like after doing a good days work, or I spent a couple hours in the gym sore. It's been so long, I had forgotten how that felt. If the possible side effects stay at bay, this will be a game changer for me too!
I’m happy for you buddy. It was a game changer for me. Most days I feel almost normal at times til I over do it then I’ll have to take it easy for a couple of days. We just have to enjoy the good days.
It’s amaIng how a little white pill can change things so much. Praying for no side effects.
Jesmcd2 , yeah I know where your legos are. Some are in the back of the Tonka dump truck at the Lego castle construction site. I'm not quite sure about your missing hot wheels. I think they may be in a chop shop by now!! 😂 As for your legos, well.... I think there is going to be a little issue with getting those back. I don't think jimeka would be to happy if I started tearing apart her chocolate fountain in the Lego castle courtyard. I'm pretty sure it would be detrimental to ones health to dare touch a single one of those particular legos! 😂🤣😂🤣😂
That's wonderful!! I love those days when I have my life back, and myself back. It gave me a nasty headache, so I couldn't take it. I hope you are able to sleep well tonight.
I did asleep well, and woke up feeling refreshed. That's been so long ago, I had forgotten what it was like! That's to bad that it gave you a massive headache. 😟
Rock on! 🎉 Yeah, I joke that the only reason it kept me awake was because it caused a nagging migraine. My BP is 90/50 normally and I'm sure that had a lot to do with it. It has taken some tinkering, but now with keto, amantadine, and coffee, I feel like me most days 🎉🏋💪🏼 I also sleep better now too.
Thank you for telling me the rest of that and y'all have something figured out that works for ya. I had been dealing with that for so long that I thought that was just the way it was gonna be for, well.... the duration. I had just accepted wit as the new "normal" for me and that was just going to be the wa at it was. Even though I am paying for yesterday I'm still energetic, I only took a half one today and I think that might be enough on average days. I'm having to force myself to rest nd not do to much, otherwise I will really put myself into a bind. LOL
As long as things don't go south on me again, might have just about gotten my symptom management lined out. It's been a long 4 years in the process, honestly, I had started losing hope. I know, shame on me.
Glad that with your doctor's help that your medication was approved and that the med worked REALLY fast for you! Hope you are not hurting too bad for all you did yesterday.
Thank you bxrmom , yes I paying for yesterday a bit. It worked so fast it shocked me. My Dr said it would get better as I was on it for a bit, I guess we finally found something my system actually agrees with. 🤞 &🙏
Allen5280 Inspiring! To have a day when energy levels are high returns us briefly to the way many of us used to feel most of the time. When I have a morning like that, it's often followed by a lethargic afternoon...as if I were a rechargeable appliance, drained of power. Formerly, I used to scold myself when I didn't accomplish everything that I needed. Now, I am delighted by any burst of energy and ability to accomplish projects. The Energizer Bunny aptly describes your day and the way we feel when we can work in the ways we once took for granted! Thank you!!
It has been quite along time since I had experienced more energy than I was able to use. I completly understand being upset when failing to meet all of my goals as well. Im not sure yet how all this will work, or how long it will last, I am thankful for it. This morning, in a longer time than I can remember, I was sleeping by 11pm and awakejust before sunrise. That alone made my day! I used to love the dawn of a new day. Either preparing for the day on the flightline, or launching my boat to chase the elusive trophy largemouth bass. In my previous life (before MS had it's say) I loved being on the lake at sunrise. Watching the evporaton fog rise from the temperature difference I. The water and air, sipping my coffee, listening to the birds starting their waking calls. Hearing the splashing of fish as they start becoming active. Everything coming to life at the dawn of a new day at the lake. I surly miss those serene and peacfull times. I may get them once again, as things are looking brighter already!
Thank you goatgal , that's quite a nice compliment. Brought a smile to my face! 😁 what better time to bring up fond memories of past then Memorial Day Weekend?
Those were beautiful times weren’t they especially the part about being on the lake for the sunrise. I’ve been there and it’s so peaceful and beautiful. I love deer hunting for a lot of the same reasons. In the woods before dawn to hear and see the woods come alive. Birds singing and fluttering around. The squirrels running up and down the trees looking for one more acorn. I didn’t fare very well last year spending a grand total of about 4 hrs at it but my goal is to do much more of it this year if I just ride my 4 wheeler out and sit on it and enjoy being out there. My balance was so bad last year I fell over everything that’s when I started fighting with my dr about steroids. Hopefully now that we got that better I’ll do better.
I’m anxious to hear that you’ve leaped that hurdle and are back to hearing those fish jump again at sunrise. God bless Allen5280
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Unnumbered post A nice day today
