Klonopin

[mvdula]

There are many other threads that mention this, but does anyone have medical info/expertise on this:

Klonopin seems to actually resolve some of my symptoms, not just lower my anxiety level. When I take it, I can actually do more without that awful overstimulation feeling (that I have to walk off that can go on for a while). Also, it makes me more relaxed. These 2 things don't seem like they should go together though. Seems like Klonopin is actually affecting my nervous system to make me more functional - separate from the fact that it relieves anxiety. Can anyone shed some light on this, i.e. why/how this works medically or is it just my lack of anxiety making me less symptomatic??

[Sushi]

I don't know the medical whys and wherefors but klonopin was precribed for me just for that reason--I have more exercise tolerance, can be out and about longer, etc. I believe my doctor said it has some anti-seizure properties, working on electrical misfires, (boy that's great technical language). Anyway, it helps me too.

[dawn]

Klonopin is actually a benzodiazapine, it is longer acting than xanax or ativan. My doctor ordered it

for me several years ago at bedtime. He said that even if it doesn't make me sleep, it will give my autonomic system

a rest. It has helped me sleep much better.

It is often prescribed for seizures. But, sometimes is given for anxietiy disorder.

Feel awful in the mornings but that's due to BP problems.

Dawn

[Sophia3]

I have used Klonopin for 17 years for CHRONIC insomnia..in the early years I mixed wi with an antidepressant but I forget which one. Read about the COMBO in the CFIDS Chronicle at the time (Newsletter magazine on CFS)

Lately with PMS insomnia, it does not do as much ( had a hyst last year so with no bleeding, have no idea what the ovaries are doing on what day0

Xanax helps me the way you say Klonopin helps you. I MUST take that or a tiny bit of Klonopin to HELP me exercise as it keeps the HR down and helps me tolerate the exercise.

In the early years of reading the CFIDS Chronicle, Dr. Cheney had an article about KLONOPIN in low doses during the day helping with brain fog as it helped the GABA receptors of the brain with misfirings of neurotransmitters and stuff. Contoversial theory and you mention taking benzo's and many flip out.

But our OVER STIMULATED ANS indeed, can use something to slow it down especially for those of us with multiple sleep disorders (I will spare you those!)

If Klonopin helps you or xanax, by all means take them..Both have been around for decades. While some folks worry about addiction, PEOPLE are addicted via personalities.

Personally, I will not take BRAND NEW DRUGS or things on the market less than 5 years for personal choice (some are used in other countries before coming here so that's ok_)

I have taken the same dose pill since 1990...some nights a half pill helps, other times whole pill is needed..of a 1mg pill.

Good luck

=

[mvdula]

I have used Klonopin for 17 years for CHRONIC insomnia..in the early years I mixed wi with an antidepressant but I forget which one. Read about the COMBO in the CFIDS Chronicle at the time (Newsletter magazine on CFS)

Lately with PMS insomnia, it does not do as much ( had a hyst last year so with no bleeding, have no idea what the ovaries are doing on what day0

Xanax helps me the way you say Klonopin helps you. I MUST take that or a tiny bit of Klonopin to HELP me exercise as it keeps the HR down and helps me tolerate the exercise.

In the early years of reading the CFIDS Chronicle, Dr. Cheney had an article about KLONOPIN in low doses during the day helping with brain fog as it helped the GABA receptors of the brain with misfirings of neurotransmitters and stuff. Contoversial theory and you mention taking benzo's and many flip out.

But our OVER STIMULATED ANS indeed, can use something to slow it down especially for those of us with multiple sleep disorders (I will spare you those!)

If Klonopin helps you or xanax, by all means take them..Both have been around for decades. While some folks worry about addiction, PEOPLE are addicted via personalities.

Personally, I will not take BRAND NEW DRUGS or things on the market less than 5 years for personal choice (some are used in other countries before coming here so that's ok_)

I have taken the same dose pill since 1990...some nights a half pill helps, other times whole pill is needed..of a 1mg pill.

Good luck

=

I second your comment about taking newer drugs! I do not want to be a guinea pig. I will always ask about something that's been around longer instead of the new stuff. Don't understand how it all works, but thank God for Klonopin!

[Mrs. Burschman]

Paxil is the same way for me. I didn't even know I had POTS until I stopped taking it and got really sick (we're talking 160 bpm, losing 10 pounds, hands and feet tingling constantly.) So I'm sure that Klonopin could be the same way. It probably helps the autonomic nervous system behave itself better in you.

Thank God for drugs! Though I hate taking them, it sure makes my quality of life 100% better!

Amy

[calypso]

Klonopin has always been a miracle drug for me -- ended my panic attack cycle earlier in life and when I developed POTS, it toned down my autonomic system. I only wish I could be taking a bit of it right now but am breastfeeding and feel that it's too dangerous for the baby. But as soon as I stop breastfeeding I will probably resume it in small doses.

I say if it helps you, don't worry about the stigma associated w/ benzos. It's just as bad to be stuck in a cycle of bad symptoms and anxiety. One could argue that anxiety is habit-forming too!

Amy

[taylortotmom]

I take it at night for my restless legs and it definitely helps

Carmen

[morgan617]

I don't tolerate klonopin, but take valium, which is also a benzo, it really helps with the horrible surges I get. I started it for an inner ear disorder, but realized a few years ago it helps both things. I only require a very tiny dose, but it makes a huge difference. morgan

[Suzanne]

Benzos are definitely a no no with most doctors here. Recently spent time in a pysch hospital and people were there detoxing from Xanax, Valium etc. Some of you appear to be taking long t erm with no side effects? My anxiety is hard to manage and I would like to take something to ease it, but no way will my doctor prescribe it. I need something to calm my system down also, from POTS and anxiety etc. Interesting to read all your comments.

[Mrs. Burschman]

Suzanne,

You might discuss Lyrica with your doctor. It's actually an anticonvulsant, but it's used a lot in nerve pain, and it also recently was approved for fibromyalgia. It's not approved in the United States for anxiety, but it IS approved in Europe for generalized anxiety disorder. It's the only thing that really helped me, and I tried almost everything.

My psychiatrist tried it in another patient (who also didn't seem to respond to anything) after me, and it helped her, too.

It seems like it just helps to calm my system down, and I only take a tiny dose. The normal starting dose is 50 mg. three times a day, but I only take 50 mg. twice daily.

Something to consider, anyway. I just wanted to mention it because it helped me, and it's not on many doctors' radar yet.

Amy

[morgan617]

Suzanne, benzos have a horrible stigma, dating back to the early 70's. At one time, valium was considered one of the most abused drugs in the U.S. I remember my dad took it, but he was prescribed 10-15 mgs at a time. 4-5 times a day. I'd be on a ventilator in a coma, at that dose.

I take 1-2 mg at a time. I take 6-8 mgs in a 24 hour period. There will always be people that abuse drugs and doctors that allow it, but these drugs do have their place. Conversely, there will always be people that hate them and doctors that refuse to prescribe them. Like everything else, they are not for everyone. There are doctors here that won't give more pain meds to terminally ill patients, because they might get "hooked." I kid you not, I've seen it. Like getting addicted to pain meds is the priority when you are dying.

I worked for a doctor that flatly refused to give any patient pain meds for chronic back pain. He hurt his back 3 years ago, hasn't worked again and is totally dependent on pain meds. Until people have walked in our shoes, they have no right to judge. If they don't work for you, or you are totally against them, fine. However, to refuse that treatment to a patient or blast anyone for wanting something that helps them is not okay either.

Benzos can be hard to get off of, the weaning process can be long. But look at my son with his effexor!!! And it's the most used antidepressant out there right now. Some people have never been able to go completely off it, and no says anything, because it's not "that class" of stigma drugs. Jake has never had any problems stopping a med before. And he was on it, maybe 6 weeks.

I'd say, if a person has to be admitted to a facility to wean off benzos, then they are taking pretty massive doses of it. And my guess is, it's a fast wean. From the board here, you don't hear of people taking that much, typically, like me, it's a fraction of the recommended dose. All meds have their place, and as most of us know, we all react differently to everything, benzos or otherwise. My doctor said he was happy to be my "dealer" for my 1-2 mgs as needed if it helped. He could live with that. So I can too.

Ultram was a very popular drug for it's non addictive nature for several years and then oops, it was discovered that it was addictive and was being sold on the streets.

I believe if something is detrimental to the quality of your life, then stay away from it. But if it is one of the few things that helps, then by all means, use it. I have heard good things about Lyrica and you may want to try that. But you just don't know. I believe just about any drug has the potential to be abused, whether it's psych or physical or both. You just need to weigh the good against the bad.

Even at the small dose I take, because I have taken it for 12 years or more, I know it would be a weaning process. Many people equate addiction with dependence. It's semantics I guess. if you want to call me an addict, be my guest, at least I am a feeling better on it, addict or not. And I have never developed a tolerance, or had to raise my dose. We are expected to be savvy about our own health and I think that must extend to the drugs we use. I would never judge anyone on here by the drugs they use or don't use, because I do walk in those shoes. Drugs and usage of them have been a heated topic on here in the past, but I don't think it should. We all struggle just to get through each day, and don't need the added stress of being flamed for wanting to feel better.

I am sorry you seem to have pretty close minded doctors, but if you think about where you were when you saw these people getting weaned, it wasn't a POTS floor, it was a unit for people with a lot of other things going on. Not just abuse of drugs. There's always another side to the story, and we need to keep that in mind.

Sorry about the novel. But for my 2 cents, I'll live with the stigma, because the only downside of this drug I've had, is the judgement of people who know next to nothing about how or why I use it. I can live with that too. As you can see, for some it's ssri's, for some, lyrica, and for some benzos. As unique as we are, so are the drugs that help us...good luck sweetie! morgan

[Tammy]

Yes, I think benzo's have a time and place for them and they do help me with the awful surges, but I have found that most of my doctors strongly oppose giving them out and it's like pulling teeth to get a refill for them even though I take it on a rare occasion and baby dose or less. I am interested to see Lyrica listed as helping someone as I've seen the commercials for it and have thought to myself that I wonder if that would help me for POTS. I'll be talking to my doctor next visit about it. Thanks.

- Tammy

[lostkendra]

So here's a silly not so silly question. Is Clonidine the same as Klonopin? About half of the stuff I'm reading fitts into my "Clonidine" folder in my brain. I'm wondering if these meds are the same?

[Mrs. Burschman]

Kendra,

It's not a dumb question. Those two names are so similar!

No, they're not the same drug. Klonopin is a benzodiazepine, which usually are used for anxiety. Valium would be another one. Clonidine actually is a drug for high blood pressure, but it's used for lots of other things, too.

Amy

[art3]

i too find klonopin helps lightheadedness,brain fog etc.. but here is my prob-i take 1-2mg but overtime it loses its effectiveness somewhat. some dr told me u can combine it with some antihistamine or anti-depressant to increase its effect again. can any of u help on this?-art3

[pat57]

Addiction to benzos is fast, particularly with Xanax. Withdrawal is prolonged because it stores in fat, it can take VERY long.

[morgan617]

I started valium in 1995 and I would assume I couldn't stop cold turkey, simply for that reason. I have never developed a tolerance, take the same dose I always have, or less, it does take a long tapering. Some of the benzos have a much shorter half life than valium or klonipin (sp, sorry) and that probably contributes to problems getting off it, also.

I am not sure what you would take with it Art. An ssri might help in conjunction with it.

BTW, my son finally got off the effexor and seems to be doing fine. That is not a benzo and he had a horrible time, so I guess it's relative, anything can be difficult. It's in our make up I guess. morgan

[art3]

A Guide to Klonopin (Clonzepam) For ME/Chronic Fatigue Syndrome Patients by Cort Johnson

http://phoenix-cfs.org/Trt%20Klonopinhtm.htm

"For years I have said that Clonazepam is perhaps the most useful medication in ME/CFS"

Dr. David Bell, August 2007

"Klonopin has been Dr. Cheney?s most effective drug for CFIDS over the years"

Carol Sieverling

Klonopin is a benzodiazepine that calms down the brain by reducing the ?set point? at which it?s neurons are activated. It does this by increasing the production of GABA, an inhibitory chemical in the brain. Klonopin has primarily been used to treat panic and seizure disorders.

Klonopin May Work in ME/CFS Because the overactive neurons in ME/CFS may lead to ?information overload?, oversensitivity to stimuli and exhaustion.

A Computer Analogy. e can visualize the brain as a huge computer with excellent storage capacity and an excellent processor but with somewhat limited RAM. It is able to effortlessly process and store enormous amounts of information from the body but in order to run properly it must filter out substantial amounts of information. If it doesn?t it runs the risk of literally burning its neurons out in its attempt to keep up and crashing (going into a seizure).

Imagine being surrounded by a bank of TV sets and trying to concentrate on all of them ? that?s what may be happening in ME/CFS. Dr. Cheney believes this constant flood of information may cause the state of ?sensory overload? that requires patients to seek a place of quiet to rejuvenate themselves. It may also be responsible for the increased sensitization to all sorts of normal stimuli such as light, noise, motion and pain often found in ME/CFS.

By reducing the ?set point? at which the brain becomes active Klonopin removes most of those TV sets; in effect it gives the brain the chance to rest and rejuvenate itself. Dr. Bell states Klonopin is most effective in those patients who feel ?wired but tired?.

Healing A Damaged Brain?Dr. Cheney puts Klonopin in the ?neuroprotector? category. In 2000 he stated that since overactive neurons eventually burn themselves out and die that ME/CFS patients will suffer neuron loss unless this problem is brought under control. Since he made this predication several studies have shown some brain volume (grey matter) loss does occur in both ME/CFS and fibromyalgia.

Dose - lonopin?s effectiveness in ME/CFS is intriguing given that one of its side effects is fatigue. Too much Klonopin can, in fact, cause fatigue in ME/CFS but just the right amount will increase energy levels and calmness. Physicians seek to find the ?sweet spot? between over and over activation of the brain by varying the dose.

Dr. Cheney most frequently prescribes a combination of Klonopin, Doxepin elixir and a magnesium supplement (Magnesium Glycinate Forte/with taurine or a magnesium (glycinate) complex.

Klonopin ? two or more 0.5 mg. tablets at night for sleep. One quarter to half a tablet in the morning and mid afternoon to improve energy and cognition. Increase the dose until you become drowsy and then cut back. Double the dose during severe relapses.

Doxepin elixir (10 mg/ml.). Acts synergistically with Klonpin to assist sleep. Start with two drops at night and gradually increasing until you experience grogginess (?morning fog?) in the morning.

Magnesium glycinate (200 mgs.) at bedtime.

Side Effects

Addiction: Because Klonopin is a benzodiazepine it has the potential to be addictive. Dr. Cheney reports, however, that he has never seen a case of addiction in the many patients he?s treated.

Withdrawl: Klonopin must be withdrawn slowly. Interestingly Dr. Cheney reports that patients who are recovered suffer no withdrawl symptoms ? only the still ill patients who must withdraw from the drug gradually.

Klonopin vs. Clonzepam

Clonzepam is the generic form of Klonopin. In Dr. Cheney?s experience Clonzepam is not quite as effective as Klonopin. Dr. Bell, however, reports good success with Clonzepam.

[Sophia3]

Art

This is a great article..thanks for reposting.

Way back in 1990...i was given an anti depressant Sinequan WITH Klonopin for my horrible insomnia.

Back then, the theory was, the Klonopin put you to sleep and the sinequan kept you there..but the latter left me hungover and I only took it for a few months. Still take klonopin at about the same dose.

Like Morgan, I have not really developed a tolerance....my insomnia can vary from time of month...take between 1/4 of a pill to 1/2 to 3/4 of 1mg.

I can sometimes get by with the lowest dose when I take melatonin (half of a 3mg pill)

Good luck with your trying Klonopin. It's done VERY WELL for me.

[Mrs. Burschman]

Lyrica also raises GABA levels. It's the only thing I've ever found that really helped my anxiety. I didn't find benzodiazepines to be very helpful.

Amy

[art3]

hi-lyrica sounds also good-less adictive. how much does one take? im going to call this dr on klonopin and doxepin combo. ive been on doxepin before and it is great-until u max it out. ttyl-art

[Mrs. Burschman]

Art,

I only take 100 mg. per day. The starting dose if you're taking it for neuropathic pain is 150 mg. per day, but I found that I didn't need that much for it to have a good effect.

You should know, however, that I'm taking it off-label for anxiety. It's not approved in the United States for treating anxiety, though it IS approved in Europe for anxiety. But I still get really weird looks from doctors sometimes when I say why I'm taking it. Studies have shown that it is effective, however.

I'm not sure about its addictive properties. I'd assume that you'd want to taper off somewhat when you stopped taking it.

Now it's approved for fibromyalgia, too. So it must be a nice cash cow for Pfizer!

Amy

[Hummingbird]

Thank you guys SO much for this GREAT info! I will ask my doctor about it as I CONSTANTLY feel that my nervous system is in OVERDRIVE! Not to mention my worrying and bouts of anxiety. It has been a nightmare. Do most people with POTS have this problem? Do they go hand-in-hand?

Thanks again,

Lauren

[Mrs. Burschman]

Lauren,

Many, but not all. Some of us just have bodies that feel "anxious," like you said, a nervous system in overdrive. Others of us also suffer with mental anxiety on top of the physical anxiety. In my case, I feel like my body feels anxious, so my mind decides I must have something to be anxious about, and it tries to come up with something, ANYTHING, it can to worry about. Then my body and mind match!

Probably at least 80 percent, if not more, of us have been diagnosed with mental, not physical, illness. The problem is, the autonomic nervous system is somewhat on the border between the body and the mind. So nobody really specializes in us! Physical doctors can't find anything wrong, so they send us to psychiatrists. If you're lucky (like I was), then you get a psychiatrist who can tell that you're dealing with more than just your everyday anxiety disorder. My psychiatrist listened to me when I said I thought I had dysautonomia and got me in to see an autonomic specialist. I was right, and here I am!

But learning that for many of us, these feelings of "anxiety" are just part of POTS, is really helpful in itself. You are most definitey NOT alone!

Amy