- This topic has 7 replies, 6 voices, and was last updated 5 months, 3 weeks ago by Ferret. This post has been viewed 615 times
- August 13, 2019 at 5:56 am #11101Sentimensonges@sentimensongesParticipant
Hello everyone. This is my second post. My first was about finally getting an answer for my sleepiness. But it wasn’t narcolepsy, but IH. Still, my doctor said the first therapy for most people would be modafinil, and on Wednesday last week, I finally got my fix of it.
Before I even get to that point, it took two weeks just to get it filled. After the PSG+MSLT came back, the doctor said he wanted to give me a trial of modafinil. The doctor went ahead a sent the prescription through the controlled substance electronic prescribing system. The pharmacy calls me only a few minutes later – they had received the order, but it was out of stock. And my results came back on Friday…they would have it on Monday afternoon.
I wait. And I get through the weekend. The pharmacy calls again. They got the medication in, but insurance will not pay for it if it’s being used to treat “hypersomnia.” The doctor appeals the decision, sends my PSG+MSLT to the insurance company, and writes that although there was no REM on the MSLT, I’m clearly sleepy and he thinks it will help. I wait the 72 hours required to reach a decision, but again it is a no. I check my options. It’s $2200 (for a generic drug too) but I found a coupon that lowers the payment to $80 for a month’s supply. I’ll take it. Only one problem – my usual pharmacy won’t accept it. I have to take it to another one just on the other side of town. But because it’s a schedule IV controlled substance, I have to call the doctor’s office and have them cancel the first prescription and send a new one to the other pharmacy. There’s about another 36 hours.
I call the other pharmacy. They got the order in too but they are also out of stock. They can order it, but the price is too high. They have to verify that my insurance won’t cover it for their price, and then run the coupon to make sure it’s covered, and then they will order. Everything runs through on Thursday so they will have it ready Friday afternoon, which would be perfect except that I’m taking a long weekend in Maine. I was so hoping to have it by now at the latest since Maine is a 10 hour drive from where I live not to mention I want to be a little more alert while I’m away.
But it comes, and Tuesday I pick it up and Wednesday I take my first dose. It was great. I felt alert and awake. I got through the whole day fine. But long it could not be…
Day 2 I took it again, and again it felt pretty awesome to feel like I could function. I took my second dose at about 2:30PM. What a mistake. I was up ALL NIGHT. Well, OK…I won’t make that mistake again.
Day 3 I notice it’s not the same. It’s wearing off so quickly. It’s 11:30 and I’m not thinking about trying to get through the whole day. I’m ready to just lean over at my desk. So I take the next dose before noon. It gives me some relief, but I start to notice the awful jaw clenching. I was like a vice. I start chewing gum just to alleviate the constant compulsion to clench and grind. I call the doctor to make my follow up appointment. Earliest opening in October – but the office tells me it’s OK. As long as I have an appointment in the books they can refill the prescription when it runs out (I only picked up a 30 day supply).
The second dose wears off pretty quickly too, and I start to notice there’s a sort of dual-action to it. The cognitive effects start first but when they start to wear off, I’m tired but still so physically stimulate and I feel urged to make useless, repetitive movements. You know the 5 key on your number pad? It’s the one with the raised point so you can orientate your fingers. My job requires so much repetitive number entering on this number pad, but I’m more and more and more driven to just rub my finger over the 5 key. It was so satisfying but as soon as I remove my finger I HAVE to do it again. I’m too busy repeatedly smoothing my index finger over this key that I’m not even getting anything done! Meanwhile I notice something is even worse is going on. I keep coughing and my voice is totally hoarse. I can’t catch my breath and everyone thinks I’m coming down with the flu. I decide to give it one more day to see if the benefit can really outweigh the adverse effects, and I was already pretty heavy on the side of not enough benefit.
Day 4 I take it in the morning. I go to work. Feeling pretty alert, but my mouth is starting to get sore. When I was a kid in school I caught coxsackievirus from one of my friends. Even as an adult, I remember how painful the sores were all over my mouth, and this was feeling very much the same. By the end of my workday I’m just miserable. My jaw aches, I’ve been chewing gum nonstop for hours. I can’t even stop chewing long enough to eat or drink. My mouth is so sore. I go home. My tongue is sore. My cheeks are torn open with ulcers and swollen and my lips are starting to hurt too. On top of that my jaw starts to become stiff very suddenly and within about an hour, I can barely open my mouth to speak.
At this point I didn’t know what to do. It was late at night, I was awake, in pain, and unable to even speak. I take myself to the emergency department. I tell them all this and they don’t even know what to say. The doctor tells me he’s never even heard of this drug – “Is it new?”
He tells me he’s going to meet with the attending physician and take some blood for the usual. He asks if I’ve been keeping hydrated and I say really, no. So an IV is in for fluids. He comes back a little later and says he spoke to the pharmacist about the drug and that it has a knack for causing skin diseases far more worse than this and that I need to stop taking it immediately and not take it again until I follow up with the sleep doctor. After another liter of fluids, he says he can send me home…but don’t take anymore.
I’m at home now after my visit there. The mouth and tongue are just covered in ulcers. My teeth ache and are so sensitive after days of constant clenching. The doctor gave me a note to return to work in 2 days with no restrictions so now I’m missing work.
But what really disappoints me is that we have to try again. My primary care physician had already tried a trial of methylphenidate when I was waiting for referral but it didn’t really work. I had some slight wakefulness from it. Better than caffeine but nowhere near modafinil, which is supposed to be such a gentle “wakefulness promoting medicine.” But, methylphenidate didn’t have ANY of the other effects of the modafinil either. I never clenched or had such compulsions to move. So modafinil, for now, I’m just going to enjoy my sick days resting and letting my mouth heal in bed.
Has anyone else had such a bad reaction?August 13, 2019 at 7:06 pm #11103Ferret@ferretModerator
I’m so sorry you had to go through that and hope you’re on the mend now.
You did not say, anywhere in your post, what the concentration of Modafinil that was prescribed. And, you were already taking TWO per day.
Both of those things I am questioning. You should have been looking for a “sweet” spot and starting out SLOWLY. MORE is never better right off the bat because there are nearly always some kind of side effects to meds. Let your body get used to the med to avoid this kind of thing.
And your DOCTOR should have suggested the above.
BTW, in Mexico, Modafinil (made in Canada or the U.S.) does not require a prescription and costs about 1100 PESOS for a thirty day supply.
I took 50 mg (broke a 100 mg in half) in the morning and that was it. I stopped taking it because I got very skinny from absolutely no appetite and the “awakeness” felt fake. I came to the conclusion that the equivalent of using toothpicks to keep your eyelids open did NOTHING. You must do something to address the quality of your night sleep. Period.August 18, 2019 at 4:25 pm #11121mobilealguy@mobilealguyParticipant
When I was diagnosed with N, Modafinil was the first stimulant my physician wanted me to try. However, it just didn’t work for me. Not only did it not make me feel alert, but it made me feel like I had the flu. It made my blood pressure increase as well. I remember lying around the house one Saturday and just feeling like I was fighting a bad cold. After discussing this with my physician, I came off Modafinil and went to adderall and it worked a lot better for me.August 18, 2019 at 7:24 pm #11123attackingbutterfly@attackingbutterflyParticipant
I’m glad I didn’t have any experience like @sentimensonges. Having written that I had a rather different sort of unpleasant experience with Provigil/Modafinil.
I took 50 mg (broke a 100 mg in half) in the morning and that was it. I stopped taking it because I got very skinny from absolutely no appetite and the “awakeness” felt fake. I came to the conclusion that the equivalent of using toothpicks to keep your eyelids open did NOTHING. You must do something to address the quality of your night sleep. Period.
This is similar to the experience I had with Provigil/Modafinil. Provigil/Modafinil is the one stimulate that does in fact keep me awake.
Thing is methylphenidate (Ritalin) and amphetamine (Adderall) mildly increased my level of wakefulness. Neither got me anywhere near full wakefulness, and on them I was taking half-hour naps in the afternoon (an improvement over 2 hour naps!). The key point was that if I was tired enough I would lie down and sleep.
Provigil/Modafinil did nothing for my level of wakefulness. I was not even the slightest bit less tired. Problem is instead of lying down and taking a half-hour nap, I was lying down for half an hour and not taking a nap. I felt like I was simply missing some crucial bit to achieve sleep and that was extraordinarily unpleasant. No adverse effects simply an issue of the wrong effect and as a result it is compared to torture on my list of non-working medicines.September 7, 2019 at 9:37 pm #11248Sentimensonges@sentimensongesParticipant
Thanks everyone for writing back with their experiences. I can understand a feeling of artificial wakefulness is not the same as the real thing, but I need some assistance with staying up throughout the day.
The sleep doctor and the psychiatrist put their heads together and I’m on Vyvanse now. They thought about Sunosi but it is just too expensive. Even fellow brand name drug Vyvanse is much cheaper. It has restored A LOT of my life, but it still is lacking in some area.
For example, because it is long acting and less prone to abuse it takes a LONG time to kick in, about 60-90 minutes. So it is of no use to me in the morning when I suffer from bad sleep inertia. Driving to work is still a chore and I have to concentrate very hard. Driving home is just as bad — the medication has worn off by then and I can’t take another dose because it lasts just too long but just not long enough. I can’t take more or else I will not be able to sleep late into the night, but I can’t take it earlier or it won’t last long enough. It is supposed to last about 12 hours, but really lasts about 6. This came to a head one night because I am a front office manager in a hotel and have a bellman who drives shuttles for event guests. He was sick one day and I had to drive the shuttle late at night (10:30PM-12AM) on short notice. I was wishing I had something short acting and short lasting to take but I did not. I ended up drinking coffee, and what a mistake that was. Coffee is a terrible stimulant — totally indiscriminate, just made me feel buzzed, wired, and sick, and then had a terrible crash. I avoid all caffeine at all times if I can (other than a small amount of diet cola with lunch sometimes). But I didn’t crash the shuttle, so that was good. The psychiatrist prefers long acting formulations because he thinks they deter abuse (though I have no history of abusing any drugs of any kind) whereas the sleep doctor is more flexible.
The sleep doctor has brought up Xyrem with the understanding that use in IH is really anecdotal. However since one of my most severe and disabling symptoms is sleep inertia, I would be curious just to see if it helps me with that. It’s SO hard to wake up in the morning and that period before the Vyvanse kicks in is just so hard not to fall back asleep. If I can find something that really helps me feel rested when I wake up…oh…that would be perfect, and something I would be more than willing to muster up the energy to fight with insurance about.January 29, 2020 at 1:36 pm #12165kgmelich87@kgmelich87Participant
I’m new to the party here on NSO so I apologize for the very delayed reply! I was diagnosed with narcolepsy type 1 in late September 2019, about 5.5 years after onset of symptoms. Modafinil was, of course, the first line of defense. I felt great the first 2 days, pretty well the 3rd day, and then like I got hit by a truck the 4th day. I also had some pretty bad tachycardia (resting around 80-108 and irregular), vertigo, and a constantly anxious feeling in my chest. My sleep specialist told me to go off of it for the 2 weeks until our next appointment, so I did. At the appointment she told me to start at 50mg and work up every 7 days. I did this until I got to the max dose and it made my narcolepsy about 10 times worse- much more tired, severe brain fog, and a very depressed mood- or what they would call “paradoxical aggravation of symptoms”. I went off the modafinil and will never touch it again. My sleep specialist was nervous to put me on a traditional stimulant due to the tachycardia but she prescribed me methylphenidate SR (SR to mitigate the heart issues). I’ve not had a single side effect on the methylphenidate- never any tachycardia- and I feel completely normal while on it. What works well for most people (modafinil) made me worse. Our biochemistry is all so very different.February 22, 2020 at 2:49 am #12394Chance@chanceParticipant
This is my first post here. It’s mostly lame. I’m just looking for answers I guess.
I was taking Modafinil and basically gave up on it.
They had me at 400mg day split dose.
Some days it worked decent
Some days it didn’t work at all.
Some days it was a total brain wreck.
Most the time it felt like false wakefulness which is mostly impossible to explain and not sound insane.
I have other issues also but have gone off all my meds. The side effects were just more than the benefits.
I have been off meds (Strattera, Modafinil, and Wellbutrin) for over 2 months now.
The big issue I am having is I’m not the same.
I’m worried the meds may have actually harmed me. The meds should be totally out of my system by now but things seem more persistent than before I went on meds.
I’m kind of hyperaware of my body. I think it’s more a necessity than mental issue.
I dream instantly when I fall asleep.
I have started keeping a journal of them, I have no idea why?
One of today’s wild dreams was 2 unknown men were arguing over crickets stealing dirt.
I was just like an observer. Thankfully none of them are frightening, just random weirdness.
I often jolt awake not knowing how long I have been asleep. I fell asleep a couple weeks back and family and friends were visiting… I jolted awake looked at the clock thinking I was late for work the next morning… I had only been asleep like 10 minutes. I felt like an idiot!!!
Late day the Tourette’s usually shows up when I’m really tired. Mine is eye squints mostly, and sticking words. No cursing people thankfully. The Tourette’s thing is horribly degrading.
I’m a very quiet person and the Tourette’s has mostly made a full blown loner out of me whenever possible. This also more necessity than preference.
After a sleep attack if I fight it and win, it’s actually a huge loss. The rest of the day is like living in between 2 worlds. I never fully wake back up, I even sort of dream while fully awake.
No, I don’t drink alcohol or use any form of drugs. I did try Marijuana and there is NOTHING about it I like. It smells disgusting and I felt paranoid.
When stuck between worlds,I would actually like to know what my brain wave state is during this… my guess is that I’m stuck in Theta and that’s why I can’t shake it and wake up. But in truth I have no idea.
In this state I have no energy. I’m living in a fog of 1/2 reality.
I have lots a sleep paralysis. I used to say I don’t have cataplexy, but I have noticed I feel sort of like I’m about to pass out, but that’s as far as it ever goes
Actually that is a point I can sometimes wake up. It usually happens as the sleep attack is ending.
So, oddly enough I kind of hope for this freakish feeling in hopes I can trigger a bounce back into reality… Sounds stupid but this is my LIFE as of now.
I have been trying more natural supplements and such but nothing is seeming to work.
I try very hard to stay positive but if I’m being honest depression is just another monster in the mix.
This stuff doesn’t seem to be welcome in everyday discussions. So, I figured maybe I could go hang with people like me. Maybe I can learn new ways to deal with something that has cheated me out of LIFE since I was about 11 years old.
I’m not real good at spilling my guts, but this is an attempt anyway…February 22, 2020 at 8:31 am #12397Ferret@ferretModerator
I suggest you head on over to the Non Rx Strategies section of this forum and check it out. It’s hard to withdraw from meds and two months is not a long time. It took me 18 months before I was ready to take control of my life again.
You may also want to do some reading about cataplexy because I suspect that you don’t have it and don’t understand it very well.
Little by little, I think you’ll make incremental changes to your life to help you cope. Don’t give up!
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