What to do when Klonopin/Doxepin stops working?

[CBS64]

I started taking clonazepam (0.5 mg) and Doxepin (~3 mg) along with 200 mg magnesium glycinate over 1 1/2 years ago. At first, the sleep meds worked very well. But in recent months, they have become less and less effective and don't seem to be doing much at all now.

I've tried increasing the clonazepam dose a bit, but it didn't help me sleep better and made my head feel poorly. I've also tried increasing the Doxepin dose, but it also didn't help and made me feel very groggy the next day.

Any suggestions as to what I could take along with the other sleep meds to help at least initiate sleep? I've tried Gabapentin, but I wasn't able to tolerate it. I'm not able to take Rozerem since I have an autoimmune condition. I took Ambien many years ago and it damaged my short-term memory, so I'd rather not try that again.

I've been trying to recover from a concussion for the last 2 years (on top of long-term CFS), so sleep is important for my brain to heal.

I would greatly appreciate any ideas or suggestions.

 

[geraldt52]

I wish I had a suggestion for you, but I really don't. You might want to Google "Belsomra", a new drug that is supposed to be available soon.

You should also read this thread:
http://forums.phoenixrising.me/inde...d-my-health-and-sanity-for-4-1-2-weeks.31972/
It's my opinion that you are at a very dangerous place with a benzodiazopene (Klonopin), and need to get off of it. You may need professional help. Do not try to do it cold-turkey.

 

[*GG*]

Doxepin did not work for me at all. I was on Trazadone, it was ok, now on Remeron for about 4 years now, feel much better on this, not great, better.

GG

 

[taniaaust1]

I've tried increasing the clonazepam dose a bit, but it didn't help me sleep better and made my head feel poorly.

I suggest to NEVER EVER go increasing a benzo if it previously worked but stops working. This generally means you have developed a tollerance to it and hence its becoming a danger to you (you could end up getting withdrawals when you try to cut back as your body has adapted to having it). Having built up a tollerance means you should be slowly cutting back and getting off of it.

 

[taniaaust1]

I suppose you've already tried melatonin (slow release kind didnt work for me but the other kind helps me esp if taken in conjunction with something else. You could try the sleep aid doxylamine succinate (its an anti-histamine which works as a sedative), that's quite strong but available over the counter. Beware that doxylamine succinate can also build up tollerance. Hence I only will take it 2-3 times per week.

Also make sure you have tried all the good sleep hygiene stuff eg getting off computer a couple of hours before bed, having your bedroom completely dark (the tiny lights from alarm clocks can bother some) etc etc. In my case one of things I found which interferes with me sleep was going to bed with the electric blanket on (I must have a touch of EMF issue).

 

[physicsstudent13]

klonopin+gabapentin has been a wonder drug for my sleep apnea, central apneas+PLMD. there is clorazepate and other benzas. actually the benzas work better for me than the newer generation drugs like ambien. it's a bit mysterious how they act on the brain- I hope there aren't long term ill effects. basically they somehow modulate allosetrically the gaba alpha receptor and seem to increase gaba

 

[Gingergrrl]

@CBS64 Have you tried Taurine? I just started it a few weeks ago b/c it is supposed to be good for cardiac support but I found it incredibly calming and sedating and I now take it every night for sleep.

 

[seaflower]

I don't blame people for taking Klonopin. If nothing else works and you have to sleep, what else can you do?

I do think it works differently for CFS people. I have read somewhere that we usually do not get addicted to it. We can stay at the same dosage or maybe just have to increase it a little bit. I have been at the same dosage for 20 years!

Yes, that many years. A stupid antidepressant called Elavil/amitryptaline? ruined my sleep a long time ago. I got off it but never could sleep again with medication. The only thing that would work was Valium or Zanax or, finally, Klonopin. They don't merely relax those of us with CFS, they actually put us to sleep. Best of all, the don't have side effects.

 

[seaflower]

I also wanted to say, my original name on here was seaflower but my email was hijacked and now I can't get my account back. So now I am seafloweragain.

Anyway. After many many years of CFS and klonopin to sleep, I did some more online research and figured something out. First, you remember how people always recommend Valerian for insomnia but it never works?

Well, try taking about 900 mg of it, not the 50 mg usually suggested. IT WORKED! Okay, since it worked, I googled Valerian and Klonopin to see what they have in common. (They both work for me.) What they have in common is GABA, an amino acid.

Here we go---many of us have amino acid deficiencies. I cured my fibromyalgia by taking L-Glycine. I am now working on my insomnia by taking Valerian OR Gabapentin.

It's still experimental with me and I am trying to figure out the dosage. Gabapentin was mentioned by a few other peope on this thread and it's true. If a benzo. works for you, then your problem seems to be GABA- related.

 

[minkeygirl]

@seafloweragain I took klonopin years but it stopped working so I used the titration method to get off of it.

Now I have about 10 different things that I alternate so that I don't develop tolerance to any of them. The only thing I take nightly is Trazodone but I'll skip that some nights to see if the other stuff I'm using helps. I go into withdrawal if I don't take some every other night.

I have rx's for Doxepin, Trazodone, Seroquel, Halcion, Ambien, Serapax, Tylenol 3, OTC I take Doxylamine, chlorpheniramine Maleate. I used dot take benedryl but can't anymore. I have also used Dramamine. I have a few other things I toss in experiment with.

I keep track of what I take and what night I take it to see what combinations work and to make sure I don't take anything more than 2 nights in a row.

Nothing over the counter works at all for me (I've tried them all) and I have to have a benzo to quiet my brain. It was hard for me to deal with that having gotten off Klonopin (and Xanax previously) but it's what I have to do and sleep is 99% of how I feel.

I can't get near Valerian the smell gags me.

 

[seaflower]

I can't get near Valerian the smell gags me.

Yes the smell is like dirty socks. It's disgusting. I've tried it so many times even though it smells horrible but it never worked until now. Now that I've taken 900 mg, it WORKS. I slept for 8 hours and even had dreams. I am overlooking the Valerian stench, I want so badly to be able to sleep.

But I know I would get allergic to it sooner or later so I'm taking the prescription gabapentin/neurontin. That works too. No more klonopin, I hope. Not unless gabapentin starts having side effects or doesn't work anymore.

 

[heapsreal]

Theres always a pro and anti benzo group, but i think one needs to find middle ground.
My doctor said to me that klonopin and xanax are drugs that seem to cause alot of issues with people and he doesnt really prescribe them but prefers something like valium, temaze or zolpidem, zopiclone.

Familiarise your self with something like this http://www.benzo.org.uk/bzequiv.htm, a dosage equivalent chart. I give myself a limit of 10mg of valium or equivalent and sometmes i may combine a benzo but still within that 10mg range. I think if one can stick to something like that then if one needs to get off the meds for whatever reason than its much easier than if one was on 50mg of valium or 3-4mg of klonopin etc

My opinion is stay with the benzo's that are commonly used for sleep like temaze, mogadon as well as valium. The z drugs like zolpidem/ambien and imovane/zopiclone and dose within that 10mg equivalent range. Try to use them intermittently so u have benzo free nights as this can reduce any tolerance issues. If 10mg equiv isnt putting you to sleep than its a sign of tolerance and either change meds or look at taking a break from them and using an alternative type non benzo sleep med.

For me a benzo only helps me initiate sleep and doesnt really keep me asleep long enough or deep enough, so i use an antihistamine or something similar to sustain sleep and like minkey has mentioned, alternate them alot to avoid tolerance to them?

I also think if one does sleep drug free but says there sleep quality is crappy because they wake up tired, i would avoid benzo's as i think they are only helpful to initiate sleep and dont really improve quality in many cases. Rule out sleep apnea too and RLS.

Full blown insomnia that many of us get where we sleep for 2hrs a night etc, than i think its very reasonable to use sleep meds as quantity of sleep is important even if quality suffers, quantity can help make up the difference in full blown insomnia. Always good to try natural sleep aids or alternate them with meds or maybe a combination to help keep med doses low. Trouble seems to occur when one keeps escalating the dose to overcome tolerance which does help initially but for many eventually any dosage increase stops working.

What i have mentioned above is what has helped me and a few others but definately talk something like this over with your doctor and have him on board with this. An assortment of different sleep meds can make u look like a full blown druggy but talking to your doctor about it and showing u have a system in place and not recklessly swallowing drugs, show u want a dosage limit, this also allows him to look over you and guide you in the right direction.

Sleep is important for many functions of the body, DAM! i wish there was a cure for insomnia???

 

[seaflower]

http://www.benzo.org.uk/bzequiv.htm

That link could be very helpful.

I have taken many of the benzos on that list. Also the non benzos but none of the non benzos work for me. We are all so different individually.

Some of those benzos work for me; most don't. One, Lorazapam, I think, actually makes me feel good, energized, and calm. I took one pill of it once when I had to give a speech. I would never take something like that during the day on an ongoing basis though, too scary.

Some of the others just put me to sleep, thank goodness. The rest make me jittery or sick. If it hadn't been for Klonopin all these years, I would still be only getting less than two hours of sleep per night. I cannot fall asleep or stay asleep. But the high dose of Valerian put me to sleep for the night and so did the Gabapentin. Both affect GABA in the brain somehow and so do the benzos. That's key for me. I need something that affects the amino acid, GABA. We'll see what happens tonight with the Gabapentin. Too bad most of us are more or less on our own with this illness.

 

[heapsreal]

http://www.benzo.org.uk/bzequiv.htm

That link could be very helpful.

I have taken many of the benzos on that list. Also the non benzos but none of the non benzos work for me. We are all so different individually.

Some of those benzos work for me; most don't. One, Lorazapam, I think, actually makes me feel good, energized, and calm. I took one pill of it once when I had to give a speech. I would never take something like that during the day on an ongoing basis though, too scary.

Some of the others just put me to sleep, thank goodness. The rest make me jittery or sick. If it hadn't been for Klonopin all these years, I would still be only getting less than two hours of sleep per night. I cannot fall asleep or stay asleep. But the high dose of Valerian put me to sleep for the night and so did the Gabapentin. Both affect GABA in the brain somehow and so do the benzos. That's key for me. I need something that affects the amino acid, GABA. We'll see what happens tonight with the Gabapentin. Too bad most of us are more or less on our own with this illness.

There is a supplement called phenibut that is gaba combined with another substance which i can remember, but it helps gaba cross the blood brain barrier. It works well but tolerance occurs rapidly, so i think its a once a week thing to use and can give a hangover. It also has similar problems to benzo's in that some can get addicted to it and withdrawal issues, but using sane doses and intermittent use can help avoid that? Dosages vary alot between people though as i didnt get any effect until i took 1500mg, i think many pills come in 250mg doses?
http://en.wikipedia.org/wiki/Phenibut

 

[zzz]

Gabapentin was mentioned by a few other peope on this thread and it's true. If a benzo. works for you, then your problem seems to be GABA- related.

It's a lot more complicated than that. GABA is one of the brain's main neurotransmitters; it has a major inhibitory function. Receptors for GABA are very common in the brain, but there are GABA(A) receptors and GABA(B) receptors, and subtypes at least for the GABA(A) receptors. Anything that attaches to any of the binding sites on any of the GABA receptors is going to have an inhibitory effect of some sort. This inhibitory effect also affects the NMDA receptors, which are the brain's main excitatory receptors. There really isn't any such thing as a GABA-related problem (except for what I describe below); instead, there are problems that respond to GABA agonists (those molecules that stimulate the GABA receptors).

One of the subtypes of the GABA(A) receptors is the benzodiazepine receptors. This is why the benzodiazepines have a calming effect. The benzodiazepine subtype is actually a physically separate subunit. If benzodiazepines are used for a long enough time, and especially at high doses (so that more of the brain's GABA(A) receptors are affected), tolerance can develop. What happens here is that the main GABA receptor withdraws into the nerve, as the constant stimulation of the benzodiazepine receptor leads the brain to think that it doesn't need as many GABA receptors. The benzodiazepine subunit is still exposed on the surface, but now it must be continually refilled with a steady supply of benzodiazepines just to maintain the status quo. Otherwise, if the benzodiazepine receptor is left empty, it acts like an excitatory receptor. This is the mechanism of benzodiazepine withdrawal, and this is the GABA-related problem I mentioned above.

If you taper off a benzodiazepine slowly, then relative few benzodiazepine subunits of the GABA(A) receptors are excitatory over any given time. As the supply of benzodiazepines gradually decreases, the main GABA receptors gradually grow back, thus restoring everything to normal. But it takes time for them to do so. That's why if you're on a large dose of benzodiazepines and quit cold turkey, you have a massive withdrawal reaction. All those empty benzodiazepine sites become excitatory, and almost nothing can shut them up except more benzodiazepines. The main GABA receptors can't be stimulated, because they've withdrawn into the nerve. However, if you taper off the benzodiazepine slowly, you give the GABA receptors a chance to grow back, and this problem doesn't develop.

If you're on a small enough dose of benzodiazepines, then the number of GABA receptors that are affected is small enough that you don't experience these problems.

Gabapentin (Neurontin) is not a true GABA agonist, despite its name; it was named before its mode of action was understood. Gabapentin actually has many different modes of action. One of them is to bind to the benzodiazepine site of the GABA(A) receptor. For this reason, taking gabapentin can make it easier to taper off benzodiazepines. If you do this, you're left with a dependency on gabapentin, but this is much easier to deal with than a dependency on benzodiazepines.

Gabapentin is an anti-epileptic drug with good sedative properties; it is Dr. Goldstein's #1 oral drug of choice for treating ME/CFS. In addition to its sedative properties, many people find it helpful for relieving anxiety. Some people find that it gives them much more energy, and some people find that it helps with all symptoms of ME/CFS. I have found gabapentin useful for all these purposes. Its effect varies for different people.

There is a supplement called phenibut that is gaba combined with another substance which i can remember, but it helps gaba cross the blood brain barrier. It works well but tolerance occurs rapidly, so i think its a once a week thing to use and can give a hangover. It also has similar problems to benzo's in that some can get addicted to it and withdrawal issues, but using sane doses and intermittent use can help avoid that?

This is basically all correct. I would just want to emphasize that it's essential not to use it on a daily basis, or else tolerance can develop within a few days. The addiction and withdrawal issues are at least as bad as benzodiazepines. But if it's used only on an occasional basis, these can be avoided.

 

[minkeygirl]

There is a supplement called phenibut that is gaba combined with another substance which i can remember, but it helps gaba cross the blood brain barrier. It works well but tolerance occurs rapidly, so i think its a once a week thing to use and can give a hangover. It also has similar problems to benzo's in that some can get addicted to it and withdrawal issues, but using sane doses and intermittent use can help avoid that? Dosages vary alot between people though as i didnt get any effect until i took 1500mg, i think many pills come in 250mg doses?
http://en.wikipedia.org/wiki/Phenibut

I have used Phenibut. I keep a bottle by my bed. It calms me considerably compared to other OTC stuff and works in conjunction with other meds I have mentioned.

However, as @heapsreal and @zzz said, you can't take this more than 2-3 days in a row or you start having tolerance and addiction issues.

If you are like me and @heapsreal and others, OTC doesn't work. Benzos do. The key is finding enough stuff to alternate. My doctor understands I need sleep initiators and sleep sustainers and he helps me with what I need.

Get some OTC antihistamines and start with that. I like doxylamine a lot. Knocked me out at 3 a.m. this morning.

 

[*GG*]

I have used Phenibut. I keep a bottle by my bed. It calms me considerably compared to other OTC stuff and works in conjunction with other meds I have mentioned.

Get some OTC antihistamines and start with that. I like doxylamine a lot. Knocked me out at 3 a.m. this morning.

Where do you buy Phenibut from? What is in it?

GG

 

[heapsreal]

Where do you buy Phenibut from? What is in it?

GG

http://www.iherb.com/search?sug=phenibut&kw=phenibut&rank=1#p=1

 

[seaflower]

It's a lot more complicated than that. GABA is one of the brain's main neurotransmitters; it has a major inhibitory function. Receptors for GABA are very common in the brain, but there are GABA(A) receptors and GABA(B) receptors, and subtypes at least for the GABA(A) receptors. Anything that attaches to any of the binding sites on any of the GABA receptors is going to have an inhibitory effect of some sort. This inhibitory effect also affects the NMDA receptors, which are the brain's main excitatory receptors. There really isn't any such thing as a GABA-related problem (except for what I describe below); instead, there are problems that respond to GABA agonists (those molecules that stimulate the GABA receptors).

One of the subtypes of the GABA(A) receptors is the benzodiazepine receptors. This is why the benzodiazepines have a calming effect. The benzodiazepine subtype is actually a physically separate subunit. If benzodiazepines are used for a long enough time, and especially at high doses (so that more of the brain's GABA(A) receptors are affected), tolerance can develop. What happens here is that the main GABA receptor withdraws into the nerve, as the constant stimulation of the benzodiazepine receptor leads the brain to think that it doesn't need as many GABA receptors. The benzodiazepine subunit is still exposed on the surface, but now it must be continually refilled with a steady supply of benzodiazepines just to maintain the status quo. Otherwise, if the benzodiazepine receptor is left empty, it acts like an excitatory receptor. This is the mechanism of benzodiazepine withdrawal, and this is the GABA-related problem I mentioned above.

If you taper off a benzodiazepine slowly, then relative few benzodiazepine subunits of the GABA(A) receptors are excitatory over any given time. As the supply of benzodiazepines gradually decreases, the main GABA receptors gradually grow back, thus restoring everything to normal. But it takes time for them to do so. That's why if you're on a large dose of benzodiazepines and quit cold turkey, you have a massive withdrawal reaction. All those empty benzodiazepine sites become excitatory, and almost nothing can shut them up except more benzodiazepines. The main GABA receptors can't be stimulated, because they've withdrawn into the nerve. However, if you taper off the benzodiazepine slowly, you give the GABA receptors a chance to grow back, and this problem doesn't develop.

If you're on a small enough dose of benzodiazepines, then the number of GABA receptors that are affected is small enough that you don't experience these problems.

Gabapentin (Neurontin) is not a true GABA agonist, despite its name; it was named before its mode of action was understood. Gabapentin actually has many different modes of action. One of them is to bind to the benzodiazepine site of the GABA(A) receptor. For this reason, taking gabapentin can make it easier to taper off benzodiazepines. If you do this, you're left with a dependency on gabapentin, but this is much easier to deal with than a dependency on benzodiazepines.

Gabapentin is an anti-epileptic drug with good sedative properties; it is Dr. Goldstein's #1 oral drug of choice for treating ME/CFS. In addition to its sedative properties, many people find it helpful for relieving anxiety. Some people find that it gives them much more energy, and some people find that it helps with all symptoms of ME/CFS. I have found gabapentin useful for all these purposes. Its effect varies for different people.


This is basically all correct. I would just want to emphasize that it's essential not to use it on a daily basis, or else tolerance can develop within a few days. The addiction and withdrawal issues are at least as bad as benzodiazepines. But if it's used only on an occasional basis, these can be avoided.

Thank you for the explanation! I had never even heard of Gaba before.

I am finding these past few nights that the Gabapentin does work but it seems to take hours to kick in. Last night I finally had to take a tiny bit of klonopin to get to sleep.

Also, the Gabapentin leaves me dizzy and tired the next morning.

What are some other medicines that I could have in my sleep arsenal? I definitely can't tolerate any antihistamines so those are out. If I could find a doctor who understands, then I could have some other things to alternate with.

And also......the thing that got me sick in the first place was an antidepressant called Elavil. All it did was make me sleep, day in and day out. I hated it but the doctor made me stay on it. This was many years ago. I finally got sick and tired of being sick and tired so I tapered off and changed doctors.

However, I have never regained the ability to sleep. Could that Elavil have done something permanent? If I could UNdo it, I might get better, at least sleep-wise.

 

[minkeygirl]

There is a supplement called phenibut that is gaba combined with another substance which i can remember, but it helps gaba cross the blood brain barrier. It works well but tolerance occurs rapidly, so i think its a once a week thing to use and can give a hangover. It also has similar problems to benzo's in that some can get addicted to it and withdrawal issues, but using sane doses and intermittent use can help avoid that? Dosages vary alot between people though as i didnt get any effect until i took 1500mg, i think many pills come in 250mg doses?
http://en.wikipedia.org/wiki/Phenibut

On the bottle it specifically says don't use more than 3 days in a row. You can get that brand on Ebay. I think I took 1000 mgs to feel it.