FDA approves new type of sleep drug, Belsomra

[minkeygirl]

Nobody whose on sleep medications ever wants to hear that, but I do believe that pretty much sums up the situation.

Everyone clings to the idea that it won't happen to them...and then one day out of the blue it does. Once someone is in trouble, the doctors tend to just throw up their hands, because there is no easy way out of that hole.

And this is why you rotate and take different things every night. I've been through klonopin withdrawal. It ain't fun.

We have to decide. Sleep or not. I absolutely will not sleep without medication and I absolutely cannot sleep without some kind of benzo as an initiator. I alternate meds every night.

Until they come up with something that helps but isn't addictive or causes dependency we are left to work it out on our own.

 

[LifeIsSweet]

Klonopin is indeed a benzodiazepine. It also can help with seizures. Many many people use Klonopin for sleep. It is very addictive for some. And a subset of those people who have built a tolerance will have a hell of a time withdrawing. I've been there.

 

[perchance dreamer]

Klonopin withdrawl messed me up for years, and I had only been on half a milligram, a very low dose.

I've started Belsomra and am doing pretty well with it. I'll write more about my experiences when I have more time.

 

[LifeIsSweet]

Hear. Hear. I attribute my horrible withdrawal as one of the main reasons I now have CFS - the GABA/Glutamate imbalance is still present. If anyone wants to consider withdrawing from benzos, please PLEASE first consult the Ashton Manual. It saved my life.

 

[geraldt52]

And this is why you rotate and take different things every night.

I'm not against rotating amongst different sleep medications as a way to avoid habituation, but no one should go into it thinking that it's a sure bet that's going to work. During my long Klonopin withdrawal I had about 8-10 different things I took in rotation, and it didn't stop the gradual habituation process to all of them.

I eventually had to stop everything, and yes it was horrible, but not as bad as the Klonopin withdrawal itself. Only then did I begin to actually "heal". My sleep may still be terrible, but I am very thankful to be rid of those horrible drugs and their side effects, which permeate every aspect of your life, in subtle and not so subtle ways.

 

[LifeIsSweet]

I'm not addicted to any one of these drugs because I haven't developed a tolerance to any one of them. I used to be dependent on Ambien - it was so, so hard to get off of. Three months after I withdrew I reintroduced Ambien two nights a week.

BUT - I completely agree with you that this rotation thing of mine is not sustainable. Even, for the sake of argument, one doesn't build a tolerance to any of the drugs, I know that they are detrimental to the body. I absolutely admire you for suffering through withdrawal and sleeping without meds.

I have a very complicated sleep disorder - hypersomnia with long sleep time (need 11 hours of sleep in order to adequately function), delayed sleep phase syndrome (I MUST sleep until noon or my day is completely useless - if I sleep less, it's as if I have slept for maybe two hours), nightmare disorder, AND primary insomnia. So, I need a lot of sleep and need to sleep until noon. The thing is - if I were to fall asleep on my own, I wouldn't fall asleep until between 4 am and 10 am. I run the very real risk of having non24 - another horrible sleep disorder. Consequently, if I didn't take sleep meds to "force" me to go to bed by 2 am, I would lay awake all night and pretty much fall asleep from exhaustion. A few nights of that and my circadian rhythm would push forward, and I would need to sleep until 2 pm, and 4 pm, etc. And here's the thing that keeps me on my sleep meds: I WANT TO BE AWAKE DURING THE DAY. I don't want to sleep through it. I already sleep until noon, and have done so for at least 16 years. So, that's why I rotate the sleep meds.

If you don't have sleep disorders like I do, don't rotate. I say it's much better to do so than to become dependent on any particular benzo or Z drug. But, if you must, do so for a short while.

If you've gotten this far, thanks so much for reading.

 

[geraldt52]

...I completely agree with you that this rotation thing of mine is not sustainable. Even, for the sake of argument, one doesn't build a tolerance to any of the drugs, I know that they are detrimental to the body. I absolutely admire you for suffering through withdrawal and sleeping without meds.

I doubt anyone can say how sustainable the rotation thing is in a given individual. And when it comes to sleep, everyone does what they feel they have to do.

My only point was that no one should assume that rotation of sleep drugs is a magic bullet and will prevent them from getting into trouble. It worked for me for a short time, then I had no choice, I had to stop the sleep meds or sink deeper into habitation with a whole array of drugs. The scary part is that you get very little warning, and when it blows up on you there is very little recourse.

I still have hopes that Belsomra might be helpful because it works by such a different mechanism and because the trials reported there was no tendency toward dependency. As I said before, time will tell on that one. I will never try to take it continuously, once burned twice shy, but hopefully other people will be able to.

 

[perchance dreamer]

I had been on Trazodone for a year (before that, it was Xyrem for years). For a long time, 50 MG of Traz helped, and then I needed to bump it up to 75 MG. It grew less and less helpful for my sleep. I've always had some next-day sedation with Traz.

Some of why it stopped working might have been the manufacturer. A couple of members helped me with that.

The last time I saw my sleep doctor, he said I could try Belsomra. I got the free pack of three 10 MG tablets. He also gave me a prescription for the free 10-day trial of Belsomra, 10 MG tablets also.

I've now gotten a regular 30-day prescription. My Blue Cross Anthem policy charges me $40 a month. If I choose to do mail order, it's $80 for a 3-month supply.

My sleep doctor told me to phase out Trazodone slowly while taking Belsomra. He told me to start out by reducing the Traz from 75 MG to 50 MG with 10 MG of Belsomra.

I found the 10 MG too low, as do most of the patients who have written about it. Only one reviewer I read about said that 10 MG worked for him. I think the manufacturers of Belsomra didn't even want a dose as low as 10 MG offered because that dose wasn't effective in clinical trials, but they lost on that count.

Anyway, I took it at that dose (50 MG Traz and 10 MG Belsomra) for 2 days before increasing to 15 MG.

What I found at the 10 MG is that it was too low to help, so I just had side effects. It didn't help sleep, but did make me extremely sedated the next day.

When I increased to 15 MG, though, it started helping. One thing I've noticed is that I'm having dreams now. When my sleep is really off, I don't dream. I don't know if the increased dream is a direct effect of Belsomra, maybe increasing REM, or if it's an indirect effect of better sleep.

Some people report nightmares and really disturbing dreams. I didn't have that effect.

Since starting the 15 MG, I've only had 1 night of bad sleep. All the other nights have been a lot better than before I started the drug. I feel like my sleep quality has improved.

At first the next-day sedation was intense, but that is getting better. I've been on it for a couple of weeks, I think.

When I first started the 15 MG and got better sleep, for several days I'd have times the next day when I felt great and energetic, but then got extremely sleepy before evening out.

I don't know if that was because of Belsomra or my body's reaction to getting better sleep after a long time of sleep disturbances. That has happened to me before when I suddenly started getting better sleep.

Some of the next-day sedation I'm feeling is probably because I'm still taking Traz. I'm going really slowly with tapering off it because I don't want to feel withdrawal symptoms. I'm down to 37 1/2 MG and will try cutting down to 25 MG soon. I haven't felt any withdrawal from it.

I'm continuing to take the bedtime and evening supplements I've been on for years, also. I'm going to start tapering off them, too, starting by taking less L-theanine. So I think the continued Traz with Belsomra as well as these supplements could make me feel more sedated than if I were on Belsomra alone.

However, even the next-day sedation I'm continuing to feel is better than the exhaustion from long-term sleep deprivation.

When I get down to less than 25 MG of Traz, I might try 20 MG of Belsomra.

So for anyone thinking of trying Belsomra, I'd suggest being patient and accepting you'll probably have more sedation the next day. In my case, that is getting better. If you do the free 3 tablets and the free 10-day trial, that will probably be long enough to see if it will help you.

Your doctor will probably have you taper off any current sleep medicines before or while you begin Belsomra, so you'd need to discuss how to do that.

So overall I'm pleased to be getting more and better sleep. However, I do feel a little uneasy that this is such a new drug. If I stay on it, I'm part of a big experiment to see if there are long-term effects.

In that respect, I'm a lot more comfortable with Traz. My PA said that Traz has side effects for some people, but it's been around for decades, so it's a known quantity. I do like that Belsomra doesn't affect Gaba the way that benzos do.

I read all the patient reviews of Belsomra I could find. Many people don't find it effective or can't put up with the side effects, but others benefit a lot. It seems to be hit or miss, but maybe worth trying.

 

[geraldt52]

Thanks for sharing your detailed experience with Belsomra, perchance dreamer. I'm glad it seems to be working for you. I agree that the most interesting thing about it is that it doesn't involve Gaba, which gives me hope that it won't be as habituating as all the other meds used for sleep.

In my limited testing of Belsomra, so far, I found the side effects to be similar to what you describe, including the intense dreaming, but very tolerable.

 

[meeKO]

I've only just read afew of the posts here but it's all very interesting.
Belsomra is just about to be made available here and we're kind of hanging our hopes on it abit.
My Partner cycles through a ridiculous amount of sleep pills including high doses of melatonin and Seroquel every night and everything is getting less effective.
Then lack of sleep compounds the Fibromyalgia and she spirals down. Bed bound all day for the past few months.
So basically we can't wait to try anything especially if it helps rid us of current meds so here's hoping.

 

[josephine2]

I am Lunesta-dependent for possibly 15 years now for, like others, I find no other med helps me drift off. I had been on an tricyclic antidepressant for years - left it to go on Lunesta (no entirely sure) and when I discovered how dependent I was on Lunesta - tried to return to the tricylic and felt terrible. I want to taper off am prepared to take a long time. Once I went cold turkey and had one great sleepless night but full of energy. When I tried again - I felt that withdrawal benzo dependent folks talk about -- it was terrible. After so many years now -- I have daytime fatigue, more memory loss than can be due to age, and now this weird nervousness that is worse on days following a dose more than 3mgs (my usual). I am 55 and had CFS/ME for at least 30 years. Can I get off Lunesta without Ashton (just sounds very complicated)?

 

[heapsreal]

I am Lunesta-dependent for possibly 15 years now for, like others, I find no other med helps me drift off. I had been on an tricyclic antidepressant for years - left it to go on Lunesta (no entirely sure) and when I discovered how dependent I was on Lunesta - tried to return to the tricylic and felt terrible. I want to taper off am prepared to take a long time. Once I went cold turkey and had one great sleepless night but full of energy. When I tried again - I felt that withdrawal benzo dependent folks talk about -- it was terrible. After so many years now -- I have daytime fatigue, more memory loss than can be due to age, and now this weird nervousness that is worse on days following a dose more than 3mgs (my usual). I am 55 and had CFS/ME for at least 30 years. Can I get off Lunesta without Ashton (just sounds very complicated)?

Tapering systems look complicated but in realitythey are just slowly reducing the dose. If for eg u were taking 1 pill, take 3/4 until your ok on it then drop another 1/4 etc etc .

At the end of the day there are many cfsers who have never taken sleep meds that dont sleep well at all. Sleep dysfunction is a symptom of cfs me. My thoughts are that sleep probably wont improve until a cure type treatment is found.

I think it is good to take a break from meds even if its just to help reduce tolerance for awhile .

Its a tough call and hard to be reliant on meds for sleep. Good luck.

 

[geraldt52]

...Can I get off Lunesta without Ashton (just sounds very complicated)?

It's possible that you could simply taper off of the Lunesta very slowly, and it not be any more complicated than that. I don't think anyone can predict how easy or difficult it might be for you.

My own experience with tapering is not really good. I would quickly reach a dose, a still significant dose, that was no longer effective at all anyway. I would lay awake all night just as if I had stopped cold turkey...so what's the point of tapering if the drug isn't getting you to sleep anyway. So I just stopped the sleep drugs cold turkey, just as I had done years earlier with Klonopin (although that was due to complete ignorance). In the case of the sleep drugs, it made for a horrible week or two, and you definitely need to be prepared for that. It gets easier, but it isn't easy.

I believe that benzos are in a league of their own when it comes to withdrawal and you need to be very careful with them.

 

[josephine2]

I thought Lunesta was so similar to a benzo that it would be just as hard. - I guess I'll find out but I know I can't cold turkey and I guess its back to - I don't know. I just hate waking up so crappy.

"My own experience with tapering is not really good. I would quickly reach a dose, a still significant dose, that was no longer effective at all anyway. I would lay awake all night just as if I had stopped cold turkey...so what's the point of tapering if the drug isn't getting you to sleep anyway. So I just stopped the sleep drugs cold turkey, just as I had done years earlier with Klonopin (although that was due to complete ignorance). In the case of the sleep drugs, it made for a horrible week or two, and you definitely need to be prepared for that. It gets easier, but it isn't easy.

I believe that benzos are in a league of their own when it comes to withdrawal and you need to be very careful with them.[/QUOTE]

 

[geraldt52]

I thought Lunesta was so similar to a benzo that it would be just as hard. - I guess I'll find out but I know I can't cold turkey and I guess its back to - I don't know. I just hate waking up so crappy.

josephine2, read post #68 earlier in this thread. I would think it's worth a try using Belsomra to try to wean yourself off of Lunesta...if it worked for Mjmouser, it might work for you. I've been skeptical, but who knows. Once you're off the Lunesta weaning yourself off the Belsomra should be much easier, if the trial results are to be believed, because they reported no tendency toward dependency with Belsomra.

There is a 10 day free trial available for 10mg tablets of Belsomra, though it doesn't seem that 10mg is an effective dose. I'd be sure to line up a prescription for at least a month's supply so that you can take 15-20mg a day, which seems to be what most people find effective, and not run out and get yourself into trouble. There is also a reduced price available for up to a year if you happen to have private insurance that has a high co-pay.

 

[josephine2]

There is a 10 day free trial available for 10mg tablets of Belsomra, though it doesn't seem that 10mg is an effective dose. I'd be sure to line up a prescription for at least a month's supply so that you can take 15-20mg a day, which seems to be what most people find effective, and not run out and get yourself into trouble. There is also a reduced price available for up to a year if you happen to have private insurance that has a high co-pay.[/QUOTE]

Thanks, Gerald - I'm gonna bite the bullet and rotate Belsomra into a sleep meds schedule maybe.

 

[geraldt52]

Thanks, Gerald - I'm gonna bite the bullet and rotate Belsomra into a sleep meds schedule maybe.

If you do give it a try, josephine2, please let us know how it goes, one way or the other. Belsomra is very new and very different, and a lot of us are watching how it does in the real world..and hoping! Also, do go to Belsomra.com and get the free trial offer, and the one year discount offer if you're qualified.

 

[5150]

Hi Catly, I am in the same situation as you. . . just cannot fall off that ledge into sleep w/o medication, and Ambien really has been all that addresses that problem for me. I have tried all the alternatives you listed, with the same results that you have. Now I'm at 5mg/night and thinking of staying there awhile, while stopping the crazy Remeron altogether. Re finding the next better sleep aid , it's tough. I don't have it yet. What doc prescribes Xyrem? never met one yet; and it does sound sketchy since its' use has been hijacked by the date rape cowards.

I would say if you can keep Ambien at 5 or 7.5 mg/night, why not. However, we must know about the definite dependence issue & probable addiction, too. It's a challenging position.

Best to you.

addendum: I'm getting a sleep study done on Monday. This should blow somebody's mind when they interpret those results. Can't wait for them to ask me how I'm still alive. . .
Will try to get back on here with the results.

 

[perchance dreamer]

I can't find it now, but someone was talking about including Xyrem in sleep drugs to cycle through the week. I was on Xyrem for a number of years, and I don't think that would work.

Xyrem is very powerful, and it takes weeks to find the right dose and get used to the drug. It's not a drug you can stop and start easily.

If someone wants to include Xyrem in sleep drugs to cycle, I'd recommend staying on it for at least a couple of months and then stopping. Any time less, and you'll keep spending time getting used to it again.

Of course, your mileage could vary. But I was on the old Talk About Sleep message board, and I read about people's experiences on Xyrem for years. It's a drug that gives some people their lives back, but it requires a lot of patience, and getting used to it is not easy.

However, getting off Xyrem was easy. After 2 nights, I just went back to the baseline crappy sleep I had before going on the drug. From what I've read, most people have an easy time when they stop Xyrem compared to other drugs. Going off 1/2 MG Klonopin and, later, Lunesta was nightmarish for me.

 

[geraldt52]

So, after a year and a half of trying to find a way to use Belsomra, I am accepting defeat. Below are just a few of my experiences, if it helps anyone else. By way of background, I've had weapons-grade insomnia for over 15 years, the result of habituation to, then withdrawal from Klonopin.

I only very rarely take anything for sleep anymore, and haven't for probably 5 years. It is not uncommon for me to go 3 or 4 days with zero sleep...so I do know what insomnia is. I never intended to take Belsomra every day, only when I absolutely had to get some sleep so as to be able to function the next day. When I did try to take it for 3 days, it already showed the classic signs of habituation...ie, needing more drug to get less effect. I also had rebound insomnia from taking it just a few days.

The 10 mg dose of Belsomra was useless. The 15 mg dose sort-of helped, but not reliably. The 20 mg dose would usually get me some sleep, but certainly not a reliable night of sleep. The 20 mg tablets are about the same price as the 10 mg tablets, so you may as well buy the 20 mg. I paid about $9-10 a tablet. Don't even think this stuff will work like a benzo...it won't.

The side effects increase dramatically with dose. At 20 mg the next day hangover was nearly unbearable, though it sometimes eased by late afternoon.

I finally had to stop using it at all, because of hives and itchy rashes, which for quite a long time I had attributed to something else. Oddly, the hives typically appeared 18-20 hours after taking the drug...not your usual allergic reaction. The rashes also seemed unconnected to taking the drug but, without any question whatsoever, both were definitely caused by the Belsomra.

I had high hopes, but Belsomra was a complete bust for me.