heapsreal
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Has anyone tried Provigil/Modanifil?
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Wow...that's awful.
I was going to try 50 mg today since 25 did nothing yesterday but I'm not so sure I should even go ahead with this experiment in light of Sherpa's experience.
I'm wondering how you know for sure that the BIG crash/full blown CFS was caused by the Modafinil?
@charlie1 provigil allowed me to work 14 hour days, work 7 day weeks sometimes, do intense cardio exercise, etc... That I would not have been able to sustain without it.
It was very seductive and seemed to have no bad effects, no downsides..just clean pure energy and mental focus.
I'm not saying Provigil was the sole cause of my illness..it just really helped me burn my mitochondria out by making me think and feel like I had more energy than I did.
In retrospect I wish I would have never taken chemical stimulant drugs, and I would not reccomend it to anyone (unless there was no other option). I would suggest deep research and testung to find your optimal natural vitamins and supplements, and living within the means of your current energy budget.
It was very seductive and seemed to have no bad effects, no downsides..just clean pure energy and mental focus.
I'm not saying Provigil was the sole cause of my illness..it just really helped me burn my mitochondria out by making me think and feel like I had more energy than I did.
In retrospect I wish I would have never taken chemical stimulant drugs, and I would not reccomend it to anyone (unless there was no other option). I would suggest deep research and testung to find your optimal natural vitamins and supplements, and living within the means of your current energy budget.
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@Sherpa @zzz and anyone else that may have insight into this...
I tried only 25 mg in morning of Provigil both on Monday and Tuesday with a strange result.
For first 2 days - For 3-4 hours after taking only 25 mg in a.m., I was VERY sleepy (to be 'sleepy' during the day is very unusual for me.) When that passed, although I didn't feel as though I was 'energized' I was able to sit in the garden and pull weeds for 20 minutes without any of my usual POTS symptoms...no tachycardia or the intense brain fog which is what usually happens with experiencing a POTS episode from standing/walking < 20 ft.
Not only was the 'feeling' of POTS absent, my HR watch did not show me exceeding 91bpm (my estimated AT) which until then has been reached from just standing up (~1 mth now). If anything, yesterday my pulse was surprisingly low averaging 60 with occasional recordings of high 40's -low 50's for about 10 seconds time periods. I haven't been bradycardic since supplementing with DHEA and T4 5 months ago.
Today - woke up with severe PEM involving all my usual symptoms.
I did NOT take Provigil today and I did not have that strange sleepiness so I do attribute the sleepiness to the Provigil.
While I didn't have POTS this morning, now in the late afternoon, it has returned. How can 25 mg yesterday morning have reduced my POTS so effectively? Maybe the POTS absence was a co-incidence???
I was planning to base how much "energy' I was exerting by monitoring my HR with the continual reading on my MIO watch. I can see now (b/c of my PEM) that my pulse is of no use to warn me of next day's PEM. I fear I will have a major setback like Sherpa if I continue with the Provigil.
Any idea as to what's going on??????????
I tried only 25 mg in morning of Provigil both on Monday and Tuesday with a strange result.
For first 2 days - For 3-4 hours after taking only 25 mg in a.m., I was VERY sleepy (to be 'sleepy' during the day is very unusual for me.) When that passed, although I didn't feel as though I was 'energized' I was able to sit in the garden and pull weeds for 20 minutes without any of my usual POTS symptoms...no tachycardia or the intense brain fog which is what usually happens with experiencing a POTS episode from standing/walking < 20 ft.
Not only was the 'feeling' of POTS absent, my HR watch did not show me exceeding 91bpm (my estimated AT) which until then has been reached from just standing up (~1 mth now). If anything, yesterday my pulse was surprisingly low averaging 60 with occasional recordings of high 40's -low 50's for about 10 seconds time periods. I haven't been bradycardic since supplementing with DHEA and T4 5 months ago.
Today - woke up with severe PEM involving all my usual symptoms.
I did NOT take Provigil today and I did not have that strange sleepiness so I do attribute the sleepiness to the Provigil.
While I didn't have POTS this morning, now in the late afternoon, it has returned. How can 25 mg yesterday morning have reduced my POTS so effectively? Maybe the POTS absence was a co-incidence???
I was planning to base how much "energy' I was exerting by monitoring my HR with the continual reading on my MIO watch. I can see now (b/c of my PEM) that my pulse is of no use to warn me of next day's PEM. I fear I will have a major setback like Sherpa if I continue with the Provigil.
Any idea as to what's going on??????????
heapsreal
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@charlie1
all i can say is i dont feel revd up on it either, just that my brain works better and improved cognitive stamina . I dont find i have pem or crash unless im doing stuff that would normally cause this.
I know with things that increase dopamine that they can make people sleepy , maybe the initial burst of dopamine is doing this to you and then levels off and or noradrenaline effects kick in abit later?
If its keeping your hr down then it may be helping your pots alot more than any stimulant effects . 25mg is a low dose even 50mg i use is low.
all i can say is i dont feel revd up on it either, just that my brain works better and improved cognitive stamina . I dont find i have pem or crash unless im doing stuff that would normally cause this.
I know with things that increase dopamine that they can make people sleepy , maybe the initial burst of dopamine is doing this to you and then levels off and or noradrenaline effects kick in abit later?
If its keeping your hr down then it may be helping your pots alot more than any stimulant effects . 25mg is a low dose even 50mg i use is low.
@charlie1 no idea. I think the least I ever took was 50mg. I just remember feeling cognitively clear and capable to activity, pretty much all day long. I used it for 6 years without noticing any problems, issues or side effects (other than anxiety if I took coffee with it, etc) before I developed CFS. By that point I had burned myself out, powered by Provigil.
heapsreal
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Did you have any infectious triggers like mono or something similar?
Today I decided to give the modafinil another try (50mg) So far, no issues one way or the other.
Few questions:
@Sushi @heapsreal @zzz @soxfan I thought that if I stayed within my 'energy envelope' I'd avoid the possibility of crashing, regardless of taking Modafinil. To do that, I was vigilant regarding the warnings given by HR monitor alarm watch to be sure I'd not exceed my assumed AT (through calculations, not thru actual AT testing) and therefore always be using 'Real/True' available energy. But I crashed after 2 (very) good days of my last Modafinil trial and that was without exceeding my AT.
So does that mean that I'm wrong in thinking staying below AT = available energy = no crash (PEM) ? I guess it's not cut and dry like that?? If this can happen without Modafinil, how can I be proactive against crashes when taking Modafinil?? That's not rheutorical, I really do want suggestions!
Few questions:
@Sushi @heapsreal @zzz @soxfan I thought that if I stayed within my 'energy envelope' I'd avoid the possibility of crashing, regardless of taking Modafinil. To do that, I was vigilant regarding the warnings given by HR monitor alarm watch to be sure I'd not exceed my assumed AT (through calculations, not thru actual AT testing) and therefore always be using 'Real/True' available energy. But I crashed after 2 (very) good days of my last Modafinil trial and that was without exceeding my AT.
So does that mean that I'm wrong in thinking staying below AT = available energy = no crash (PEM) ? I guess it's not cut and dry like that?? If this can happen without Modafinil, how can I be proactive against crashes when taking Modafinil?? That's not rheutorical, I really do want suggestions!
For whatever reason, like most things with this illness, be it treatment or symptoms... things last for while and then once again, everything changes. I'm back to low bp with bradycardia as well as POTS.@heapsreal My bp has always been chronically low but since supplementing with DHEA & T4 and daily wearing compression clothing, it's often closer to normal range now
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One of the known mechanisms of Provigil is to increase the production of ATP in the mitochondria. This is why it is able to give people energy for years at a time. If it were burning out the mitochondria, this would have happened a lot faster than in six years, especially with the level of activity that you mentioned.
I think that it's very important to differentiate here between causation and correlation. I took Provigil for eight and a half years, and it allowed my to maintain a level of activity that would have been impossible without it. Four the first four years, this level of activity gradually increased, peaking at the point where my OI problems disappeared essentially completely. I was well enough at this point that I got married, and this peak corresponded with the week of my wedding. Unfortunately, the activities of the wedding and the following few months were too much for me, and I never regained that level of functionality. But this was a simple matter of overdoing things, and had nothing to do with the Provigil.
I did have a feeling throughout the time that I was taking the Provigil that even at the time when my symptoms were improving, my underlying condition was slowly deteriorating. Again, I don't think that this was because of the Provigil, but rather in spite of it. In other words, I was not exceeding my boundaries due to the Provigil, but due to the fact that Provigil is only a symptomatic treatment, it did not prevent my underlying condition from getting worse.
I finally crashed from the Provigil after eight and a half years, but if anything, this seems to be a delayed effect of a major crash that I had from taking Valcyte at the full loading dose of 1800 mg/day two years previously. The Valcyte crash affected my ability to take many drugs, and I think that this eventually led to my inability to take Provigil.
Although I did crash from the Provigil, within six months I had recovered enough to be traveling cross country again, and over the following six months I regained almost all the functionality I had lost in my Provigil crash. I was doing much better at that point than before I had started Provigil, and the only reason I wasn't doing as well as when I was on Provigil was that my drug sensitivities now prevented me from taking Provigil. But increased drug sensitivities are fairly typical over the course of this illness. They are reversible, but not easily, and at that time I didn't know how to reverse them.
I remained at that high level of functionality for another year, but I pushed myself too hard over a number of months (without Provigil), which resulted in another crash. This was followed six months later by a moderate concussion, and I am currently still recovering from this combination of events. The concussion was particularly debilitating. My recovery has been going well recently, however.
In sum, Provigil did a lot of good for me, and I don't think it had a noticeable negative effect on my fundamental condition. I'm very glad I took it all those years, and I may take it again as my drug sensitivities continue to decrease.
@charlie1, if you are interested in taking Provigil, you may want to try gradually increasing your dose. I started out at 100 mg/day, and after six months moved up to 150 mg/day, which ended up being the optimal dose for me. Each person has their own optimal dose, so you probably need to experiment a little bit.
Basically, there's a fair amount of trial and error here. Also, identifying the cause of crashes is not always easy. Start low and go slow applies here, as just about everywhere else. An occasional crash may simply be a sign to back off the dose a bit. This may be temporary, as the body does some adjusting to the Provigil dose in the early stages of taking the drug.
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It sounds like you're optimistic that you're going to continue to improve! So good to hear
There is a chance my dr won't want to prescribe it 'off-label' for me, even if I am fortunate to tell her wonderful results. Can this drug be bought on-line from a reputable pharmacy in that case ?
xo
thanks for explaining your history to us zzz! How long has your most recent recovery been going on...how long since the start of the pre-concussion crash?
I was able to borrow 10 Modafinil pills (100 mg) from a friend to see if I might want to request some from my own doctor. I've already gone through 2 pills now (4 separate times of 50mg) so how do you suggest I proceed to finish the remaining 8 pills? I'm thinking maybe try 50mg 2x day for 4 days and then 100 mg 1x day for the last 4 days? Or just stick to 50@ 2x/day for the 8 days?
There is a chance my dr won't want to prescribe it 'off-label' for me, even if I am fortunate to tell her wonderful results. Can this drug be bought on-line from a reputable pharmacy in that case ?
xo
My pre-concussion crash happened in June of 2012, and my concussion happened at the end of December of that year. Things started declining rapidly even more a little more than a year later, until I started the magnesium nebulization in March of 2014, which rapidly turned things around. As my recovery starting leveling off that summer (a year ago), I began the Goldstein protocol, which moved my recovery forward even more. Finally, I started low dose Valcyte (7 mg/day) in February, which has had excellent effects, and that combined with the Goldstein protocol and the nebulized magnesium are the core treatments that are currently powering my recovery.
Since you initially had some good results at 50 mg, but it is no longer doing anything (which is not surprising at that dose), I'd suggest trying 75 mg for a few days and seeing how that goes. If you don't get any real results from that, you can always go up to 100 mg. You may end up with a fraction of a pill leftover one way or another, but that's OK.
Also, I know that in the U.S., insurance typically doesn't cover this drug except for narcolepsy and sleep shift disorder. (Provigil was easier to get when I was on it.) I don't know how things work in Canada.
Fortunately, yes. The best place to buy it appears to be ModUp.net, where you can get it for $1.08 per 200 mg tablet. They ship to most countries, including Australia, the UK, and the US, but unfortunately not to Canada. You could get this shipped to a US P.O. box, but I don't know what would be involved in getting it through Canadian customs.
There are other places on the net where you can get modafinil, but they all seem to charge about $6 for a 100 mg tablet - about 12 times as much. Your best bet, if your insurance doesn't cover this, might be a doctor's prescription that would allow you to carry a shipment of modafinil across the border.
heapsreal
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http://www.med-cab.net/sleep-disorder
Well priced modafinil $8.50 for 10x200mg, free shipping. Have found them very reliable.
Some items they won't ship to US , modafinil might be one of them but they ship to other countries.
Well priced modafinil $8.50 for 10x200mg, free shipping. Have found them very reliable.
Some items they won't ship to US , modafinil might be one of them but they ship to other countries.
are these meds something that takes time to build up? i am curious i know there is often a quick benefit, yet i too have noticed after a few days i get kinda sleepy and out of it when i take it.. so i stop for a few and then I take it a few..and after i have stopped it for a short time i seem to do well at first right away going back on. also i have been monitioring my sleep and have noticed i am not getting very much "deep sleep' and wondering if that may be having an impact on the days i get the "tired" feeling after taking the provigil?
heapsreal
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Should work straight away and less effective the more u use them which is why many use these meds intermittently as regular breaks reduce tolerance .
Hello everyone. OP here. I've been away for a while trying to figure things out and Am back to let you know how the medication is doing for me.
When I first posted the question about others taking this medication I only tried it a few times. It's sort of freaked me out and I also worried about sleep. So I only took it for a couple days and decided it made me too nervous to continue. Then a couple weeks ago, amidst my ever-increasing fog and pain and fatigue, I decided to give it another shot. At first I tried 100 mg anytime in the morning before noon. I typically sleep pretty late, so it was important for me to get up early enough so it would not affect my sleep that night. I did this for about a week and after the first few days I started to get used to the feeling of what "alert" is on this medication. It takes about 2 to 3 hours for it to kick in. But around 5 o'clock in the late afternoon, I sort of had a minicrash and went back to being all tired and achy. The second week I decided to experiment with adding a booster dose somewhere in the afternoon. The first day or two I actually added another 100 mg in the afternoon. That would be around two or 3 o'clock. This was too much for me as far as sleep goes. I cut it back to 50 mg and that worked really well. That is what I currently take. 100 mg in the morning and then 50 mg no later than two or 3 o'clock in the afternoon. Modafinil lasts about 12 to 15 hours in your body
The way I feel physically when I am on this drug now that I have taken it for a couple weeks, is pretty close to normal. I had really forgotten how nice "normal" was. My aches and pains were very much reduced, my energy was a nice level, not jittery and over done. I definitely do not feel like I am crawling out of my skin or anything unpleasant like that. My mood is much better. Another thing here is that I had not realized that I was more depressed than I thought. (I have clinical depression). I find it extremely hard to separate physical depression symptoms from fibromyalgia and chronic fatigue syndrome.
Mentally, I am able to focus much better. I also feel very sharp and on top of things. Not in a grandiose away, but just like my brain is fueled and ready to go.
So, I am able to do simple every day things that were so hard before. I can go do a few errands during the day, I can every once in a while go have dinner with a friend, I can do my housework very slowly. Ha ha. I don't think overdoing it will be a problem for me. Honestly, after being so tired and so frozen with pain for so long, I have lots of hobbies and things I like to do that are rather sedentary. It also has a very strong that on my appetite and I just don't want to eat very much. It doesn't affect my energy level to eat less. I don't know, but that's been a nice side effect so at least I know I'm not getting any fatter.
A few days ago, I decided to try cutting back to 100 mg per day because I have been having a little bit of trouble sleeping. That is nothing new for me so it's hard to say what the reasons are. That was very hard on me. I had a crash in the afternoon around five, like before, but it was much worse. There's no way that this crash has anything to do with "overdoing it". That is because there's no way I have been overdoing anything. I have a dislocated tailbone and that is really cramping my style doing anything that's very physical. I don't think this is like a rebound issue. I really think it is just my old symptoms coming back and it's a shock to feel so bad so quickly. It's also amazing at what I have gotten used to and may have to get used to again in the future.
I am someone who has been having symptoms for a long time. Everything came on gradually over the years so I have missed out a lot on some things because of how long it's gone on. I spent the last 20 years feeling much older than I am and thinking along the lines of my needs that a person in their 70s might have to think about. It is worth it for me to use this medication and hopefully have some years ahead of me where I can participate in life at a level that feels satisfactory. I do not think I will ever go back to running, hiking, etc. That's OK with me. I dealt with that loss years ago.
I have also started the EMDR therapy, which helps retrain your brain to not flip the switch into fright or flight mode. I think that there is a big connection between many different kinds of childhood trauma and neglect and chronic illness later on in life.
So that's the scoop! I have enjoyed reading all of your responses to this thread. Some things don't work for some people and I suppose we just need to keep on looking for answers.
*sorry for the grammar and spelling errors. I'm using voice dictation on my iPad.
When I first posted the question about others taking this medication I only tried it a few times. It's sort of freaked me out and I also worried about sleep. So I only took it for a couple days and decided it made me too nervous to continue. Then a couple weeks ago, amidst my ever-increasing fog and pain and fatigue, I decided to give it another shot. At first I tried 100 mg anytime in the morning before noon. I typically sleep pretty late, so it was important for me to get up early enough so it would not affect my sleep that night. I did this for about a week and after the first few days I started to get used to the feeling of what "alert" is on this medication. It takes about 2 to 3 hours for it to kick in. But around 5 o'clock in the late afternoon, I sort of had a minicrash and went back to being all tired and achy. The second week I decided to experiment with adding a booster dose somewhere in the afternoon. The first day or two I actually added another 100 mg in the afternoon. That would be around two or 3 o'clock. This was too much for me as far as sleep goes. I cut it back to 50 mg and that worked really well. That is what I currently take. 100 mg in the morning and then 50 mg no later than two or 3 o'clock in the afternoon. Modafinil lasts about 12 to 15 hours in your body
The way I feel physically when I am on this drug now that I have taken it for a couple weeks, is pretty close to normal. I had really forgotten how nice "normal" was. My aches and pains were very much reduced, my energy was a nice level, not jittery and over done. I definitely do not feel like I am crawling out of my skin or anything unpleasant like that. My mood is much better. Another thing here is that I had not realized that I was more depressed than I thought. (I have clinical depression). I find it extremely hard to separate physical depression symptoms from fibromyalgia and chronic fatigue syndrome.
Mentally, I am able to focus much better. I also feel very sharp and on top of things. Not in a grandiose away, but just like my brain is fueled and ready to go.
So, I am able to do simple every day things that were so hard before. I can go do a few errands during the day, I can every once in a while go have dinner with a friend, I can do my housework very slowly. Ha ha. I don't think overdoing it will be a problem for me. Honestly, after being so tired and so frozen with pain for so long, I have lots of hobbies and things I like to do that are rather sedentary. It also has a very strong that on my appetite and I just don't want to eat very much. It doesn't affect my energy level to eat less. I don't know, but that's been a nice side effect so at least I know I'm not getting any fatter.
A few days ago, I decided to try cutting back to 100 mg per day because I have been having a little bit of trouble sleeping. That is nothing new for me so it's hard to say what the reasons are. That was very hard on me. I had a crash in the afternoon around five, like before, but it was much worse. There's no way that this crash has anything to do with "overdoing it". That is because there's no way I have been overdoing anything. I have a dislocated tailbone and that is really cramping my style doing anything that's very physical. I don't think this is like a rebound issue. I really think it is just my old symptoms coming back and it's a shock to feel so bad so quickly. It's also amazing at what I have gotten used to and may have to get used to again in the future.
I am someone who has been having symptoms for a long time. Everything came on gradually over the years so I have missed out a lot on some things because of how long it's gone on. I spent the last 20 years feeling much older than I am and thinking along the lines of my needs that a person in their 70s might have to think about. It is worth it for me to use this medication and hopefully have some years ahead of me where I can participate in life at a level that feels satisfactory. I do not think I will ever go back to running, hiking, etc. That's OK with me. I dealt with that loss years ago.
I have also started the EMDR therapy, which helps retrain your brain to not flip the switch into fright or flight mode. I think that there is a big connection between many different kinds of childhood trauma and neglect and chronic illness later on in life.
So that's the scoop! I have enjoyed reading all of your responses to this thread. Some things don't work for some people and I suppose we just need to keep on looking for answers.
*sorry for the grammar and spelling errors. I'm using voice dictation on my iPad.