How LORAZEPAM destroyed my health and sanity for 4 1/2 weeks

[DeGenesis]

I experienced tremendous relief with clonazepam, unfortunately my dose eventually ended up being upwards of 6 mg a day, which I was told was a very large dose. I was completely tolerant and I think I was even experiencing tolerance withdrawal.

I cross-tapered to diazepam and things are going great. In my opinion, go SLOW SLOW SLOW SLOW SLOW. I had a seizure when my doctor tried to direct taper me from clonazepam at 0.25 mg a week. IMO my doctor was not knowledgeable about how to properly taper benzo's, but he was very receptive to printed information from the "Ashton Manual", which was written by a now retired professor and MD who ran a benzo withdrawal clinic. It is easily found on the web.

EDIT: My experience.

 

[Little Bluestem]

I wish I could stop clonazepam, but I can't. In fact I need more now, but doc won't increase it, so I'm probably in withdrawal. My BP is elevated due to all the stress, etc., but still -- no increase. Maybe a good thing in the long run if I can get past this high anxiety state (which I think again, is due to salicylate/phenol issues which are so complicated and thus have never been adequately addressed.

I have been taking alprazalam (Xanax) at the same dose for around 20 years. I don't even remember how long now. I have no desire to stop until I no longer need it. Neither do I want to increase the dose.

I was doing fine until I started methylfolate. The alprazalam is not standing up to the increased anxiety. I am 'filling in' with health store supplements (and keeping the methylfolate dose low). I am using Bach Rescue Remedy, Hyland's Calmes Forte (it says sleep aid, but you can take it during the day for 'nervous tension'), and a variety of herbal teas. These or similar things might help with your clonazepam failing.

 

[DeGenesis]

Had a quick look at some of the posts in this thread. Benzo's did not work very long for me for sleep. Maybe a few days and I had to increase the dose. I have read that they can be used for a few weeks for anxiety (although there is no evidence, besides anecdotal, that they lose efficacy in this indication, I'll see if I can pull up the study), and a few months for seizure prevention.

I think If anyone is dealing with CFS/ME benzo's can be a god send not only because of central effects like anxiolysis, but because of the peripheral benzodiazepine receptor, aka transporter protein (check the wiki on this one) and also aka the mitochondrial benzodiazepine receptor, where it exerts an absurd number of effects for a little known receptor.

I have heard of people like Little Bluestem who have stayed on the same dose for years, but I still urge caution! Kudos to you for not upping your dose in stress and "times of need" lol.

EDIT: Clarified that this is not medical advice and was a personal experience of mine.

 

[heapsreal]

Had a quick look at some of the posts in this thread. Benzo's are not for sleep! Your dose will stop working in a few days for this indication and you will have to increase it. They can be used for a few weeks for anxiety (although there is no evidence, besides anecdotal, that they lose efficacy in this indication), and a few months for seizure prevention.

If anyone is dealing with CFS/ME benzo's can be a god send not only because of central effects like anxiolysis, but because of the peripheral benzodiazepine receptor, aka transporter protein (check the wiki on this one) and also aka the mitochondrial benzodiazepine receptor, where it exerts an absurd number of effects for a little known receptor.

I have heard of people like Little Bluestem who have stayed on the same dose for years, but I still urge caution! Kudos to you for not upping your dose in stress and "times of need" lol.

There is a way to use them long term and keep the doses down and avoid tolerance.

What i have done over the years is firstly keep a limit to the dosage to no more then an equivilant of 10mg of valium. Most sleep meds have an equivilant to 5mg per pill ie zopiclone pill is 7.mg = 5mg valium, zolpidem 10mg = 5mg valium etc. Reactions and effects are individual but i alternate nightly between the z-drugs and a traditional benzo, even though they say there is a cross tolerance, i dont believe its 100% cross over as i have found alternating them has helped reduce tolerance.

Theres alot of other non benzo meds which are mostly antihistamines, sedating antidepressants and low dose antipsychotics which all work on similar neurotransmitters to varying degrees. So one could alternate nights using these with benzos or z drugs. Or if one finds the max dose of 10mg is not effective then one could add a small dose of the above antihistamine type meds, but i think at this stage it might be best to take a holiday from benzo's and use the other meds for a few weeks.

Theres also anticonvulsants such as lyrica and neurontin. I will add that alot of these meds and sedating antidepressants are indicated for daily/nightly use and to be tapered off, but i think if they are used as a one off here and there in a rotation with other meds then the typical withdrawal issues arent an issue, but its something that needs to be worked out with your doctor.

So basically one needs a few different meds from a few different drug classes and alternate them in some sort of pattern that works for you that helps you avoid tolerance and keeps doses low. Its extremely rare that one med will work for years on end. There is also a theory that NMDA antagonists can help reverse benzo tolerance, but i dont think many docs would know alot about this so u would have to do alot of your own research on this and again discuss it with your doc.

I think there is a group of us cfsers who will never sleep normally until they find the exact cause of the sleep dysfunction and there is a way to repair it.

 

[DeGenesis]

In my opinion benzo's could be used a few times a week at most for sleep. Very informative post I do think it's important to alternate so that any one neurotransmitter system doesn't get too upregulated.

Haven't heard about NMDA antagonists reversing tolerance, but these seem to be able to prevent tolerance, rather than reverse it. I still remember the memantine + amphetamine craze. Oh man.

 

[heapsreal]

I agree that benzo's could be used a few times a week at most for sleep. Very informative post I do think it's important to alternate so that any one neurotransmitter system doesn't get too upregulated.

Haven't heard about NMDA antagonists reversing tolerance, but these seem to be able to prevent tolerance, rather than reverse it. I still remember the memantine + amphetamine craze. Oh man.

I have heard people using dxm/dextromethorphan while using benzos for sleep increases the time one can stay on a benzo before tolerance sets in. But could be a tactic to try if one goes on a 2 week benzo holiday maybe. Have also heard nmda antagonists can help reduce withdrawal symptoms when one is trying to come off benzo's. It seems that gaba and nmda have an opposite reaction that is increased when one withdraws benzo's, that is nmda is increased?? it starts getting technical, but something worth looking into i think??

 

[DeGenesis]

Yeah, if you have taken a benzodiazepine long-term glutamatergic signalling is amplified all the way round, and that includes at NMDA receptors. That's why so many people complain of depersonalization/derealization during their withdrawal (excess glutamate at non-NMDA receptors, probably AMPA). Tons more glutamate binds to NMDA, AMPA, kainate, and some other receptors I think, causing a massive increase in excitatory neurotransmission.

Some studies have shown that anti-epileptic drugs (AEDs) are very helpful in withdrawal. There is an industry-funded study on the use of Lyrica that is very promising. Depakoate, lamotrigine, (ox)carbamazepine, and even topiramate have been used to ease benzodiazepine withdrawal in part because they reduce glutamate release. I am tapering off of diazepam and have used this approach with some success.

 

[DeGenesis]

It makes sense that DXM could prevent tolerance. I don't understand the mechanism, but NMDA antagonists seem to be able to do this with amphetamines, opiates, benzodiazepies...

DXM is a really yucky experience for me, even if were to take it just slightly higher than therapeutic doses, which I wouldn't do.

 

[taniaaust1]

Yes.... UNTIL THEY BLEW UP IN MY FACE is what happened to me. I was taking the lorazepam only intermittently, not ever more than once a week, and usually just once/twice a month. I never expected that this would cause any serious problems. Then one day.... without any prior warning, the sh-t hit the fan and I was sent down into the pit of 24/7 anxiety/panic benzo hell.

You are playing with a truckload of explosives when you take a benzo.

Id like to point out to you that ME itself may cause that symptom. It did to me and I wasnt even on anything at the time (I hadnt taken any benzos previously at all). I just started getting sudden panic attacks and severe constant anxiety. (If I had been starting a new drug or getting off of one at the time, I could of blamed the drug).

Anyway, I just wanted to point out both those things can be ME symptoms which can suddenly come in.

 

[taniaaust1]

Maybe you were one of the lucky ones. I know I had serious issues with sleep from withdrawal from Klono and xanax. And other's i knew who swore they didn't have withdrawal after stopping cold turkey and just thought their not sleeping was normal for them vs. withdrawal. Not saying that about you, just from what others have told me.

Even if you don't have to work, you still have to function on some level to at least take care of our basic needs. But no matter, not sleeping blows.

Many of us take benzos for sleep so our sleep is really screwed up before we take them and of cause our sleep is going to be just as screwed up on the nights we dont or if we stop (unless this ME sleep issue corrects itself like mine does at times, benzo got me throu a very rough sleep patch in the past).

In my case I seem to get a deep sleep with a benzo. Temazapam really knocks me out, I tend not to then wake up at all all night and wake up in the morning at a good time.

 

[taniaaust1]

Had a quick look at some of the posts in this thread. Benzo's are not for sleep! Your dose will stop working in a few days for this indication and you will have to increase it. They can be used for a few weeks for anxiety (although there is no evidence, besides anecdotal, that they lose efficacy in this indication), and a few months for seizure prevention.

Sorry Im going to disagree with you there. Dr Cheney commonly puts his patients on a benzo for anxiety and patients stay on it long term. I took the same benzo for many many months (without any issues at all), I never needed to increase dose and it worked great.

I also was given a benzo for sleep and that works great for me too and Ive never developed a tollerance, Ive been using it on and off now for years. I was warned thou to only use twice per week and warned the one I was given can cause tollerance in only 5 days if one took every day. Many of us who have ME/CFS use benzos for sleep use them as a part of a whole sleep routine of alternating what we are taking for sleep.

The benzo gives me a better sleep then the antihistamine taken with 3mgs of melatonin, that anti-histamine thou was an issue for me and I built up tollerance to the anti-histamine within 2-3 weeks!! and then needed to increase that. So I had to cut that down to only taking the antihistamine twice per week for sleep (so Ive had more issues with that then the benzo).

I know 2 people in real life who have taken benzos for years and years (over 10 years) for sleep and they have never had to increase dose as far as Im away and take nightly. (they both are happy with the drug).

It all depends of the person I think and the way individual benzos have been prescribed. There is probably just as many at this website who have used them successfully for things like sleep, anxiety etc to the ones who havent and have had issues with them

 

[DeGenesis]

I have heard of people like Little Bluestem who have stayed on the same dose for years, but I still urge caution! Kudos to you for not upping your dose in stress and "times of need" lol.

Kudos to you as well, @taniaaust1. I guess I don't have the self-restraint.

 

[taniaaust1]

Kudos to you as well, @taniaaust1. I guess I don't have the self-restraint.

I have no urge at all to increase dose as the dose works very well so no restraint at all is ever needed.

Self restraint would only be an issue if the drug isnt working well for you or if you've got tollerant to it so wanting more for symptoms. Those of us who it works well for, dont need self restraint to not take more.

(my nanna is one of the people I mentioned in my other post, able to take benzos every single night for maybe even more then 10 years, no issues at all. So maybe its genetic).

 

[DeGenesis]

I'm glad that that is working for you and my words were not meant to be an attack on you or any other person who is taking benzodiazepines long-term and by choice. Say instead that I am impressed, with no sarcasm intended.

 

[Dreambirdie]

Id like to point out to you that ME itself may cause that symptom. It did to me and I wasnt even on anything at the time (I hadnt taken any benzos previously at all). I just started getting sudden panic attacks and severe constant anxiety. (If I had been starting a new drug or getting off of one at the time, I could of blamed the drug).

Anyway, I just wanted to point out both those things can be ME symptoms which can suddenly come in.

No, Tania, that is not accurate. In my case, my recent ordeal with over-the-top anxiety, panic and palpitations was not caused by ME. It was clearly caused by the lorazepam. Of that I am 100% sure.

This is one of the reasons I avoided posting my experience about it until I had managed to get on top of the worst symptoms. When I'm in a crisis, I find it best to trust my own instincts and those of the two practitioners that know me best. Getting advice online from people who don't know you at all and have no experience treating you can be very confusing and even dangerous.

 

[golden]

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

I thought it would be worth posting this Doctors thoughts on benzos, bit of history too, since I read it due to this thread.

 

[heapsreal]

It makes sense that DXM could prevent tolerance. I don't understand the mechanism, but NMDA antagonists seem to be able to do this with amphetamines, opiates, benzodiazepies...

DXM is a really yucky experience for me, even if were to take it just slightly higher than therapeutic doses, which I wouldn't do.

I did a 2 week holiday from benzos. I think dxm helped. I have used it when tolerance starts to build while on them and it helps. I just use the recommended dose on the bottle, any higher and I think one is looking for something else.

I'm going to do another 2 week holiday soon. Haven'tset out a plan yet but looking at sseveral ways to lower ammonia, cortisol and use melatonin with a few natural things like 3grams tryptophan with pop. If need to ad some antihistamines.

 

[minkeygirl]

]

In my case I seem to get a deep sleep with a benzo. Temazapam really knocks me out, I tend not to then wake up at all all night and wake up in the morning at a good time.

The best sleep I get these days is from Halcion. I'm going to my see my PCP for a different one to alternate. I need something that is short acting so I am not drugged the next day.

 

[boohealth]

Have you had your p450 pathways analyzed? You may metabolize it poorly.
I take temazepam and so do some others I know who are ME/Lyme/MCS and do okay.
But if, for instance, you have a liver pathway that doesn't detox it well, it might build up; and/or, metabolites build up.
It's useful to know. I have a cyp2d26 pathway that's weak, so I can't take SSRI's, do badly with steroids, etc.

 

[Dreambirdie]

Have you had your p450 pathways analyzed? You may metabolize it poorly.

Yes, it would have been nice if my doctor had mentioned that to me.

Too late now. The damage was done and I have to (once again) repair it on my own.