Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

[Rockt]

Hi Nielk, and Hi Rockt:
I am also a Klonapin sufferer. I am dying to get off this nightmare drug. But I do not sleep and am not strong yet. I wrote to Fred and he said he will help, but he thinks I need to get a bit stronger.

I am furious with the doctors who threw this at me when I was in my early 20s when i got sick. I have been on it for years now. I hate it.

Two years ago I got down to .25mg but couldn't decrease it; and the doctor I saw said I had to keep taking it. Of course, the dose just gets higher. And recently I asked my current doctor what to do because the suicidal ideation is very severe and he said to stop it!!!!! How I pray tell?

My family are thinking of sending me into drug rehab for this addiction. And I am ready to go, just to get off this drug. But do those folks know what they are doing in those centers? If anyone knows of a good one, please let me know.

If anyone knows what to take for sleep whilst tapering, please let me know.

Nielk I know exactly what you are going through.
Kindest regards, Helene

Hi Helene.

All I can tell you is that getting the withdrawal (somewhat) under control has improved my sleep greatly. It didn't happen oevernight and it's not perfect, but I'm not having great difficulty getting to sleep and I'm not waking up after a few hours, with no hope of returning to sleep. I actually look forward to bedtime now

I'm not exactly sure what you mean by "not strong yet"? Physically, as in CFS is still too bad, or mentally? The taper that I used with Freddd's help, without going into great detail, relies on gradually lenghtening the time between doses to decrease the dose and also breaking a single dose and time (nightly in my case) into smaller doses at varying times. This greatly takes the edge off the withdrawal that you already have from not increasing your usual dose (see my previous response) and deals with the brain's conditioned response from taking the drug at or near the same time every day. I felt better (I feel because of this timing and the divided doses) soon after starting the taper. I ran into difficulty later when the doses started getting much smaller. In retrospect, staying at one level for a couple or a few days would have helped when things got edgy (and did help later when I forced myself to do this) but I was focussed on "progressing" and forged ahead. Lucky I didn't kill myself. Yes, we can be our own worst enemies.


re rehab centers, there was a thread about it. I think neilk posted on that thread and maybe he can recall more, or even reference it. In that thread it seemed very clear that traditional rehab centers aren't tuned in when it comes to benzo's and the need to very gradually allow the gaba receptors to no longer need the drug, (or at least, need it less). I don't have any experience with rehab, but don't they mostly involve medical intervention, either switching to another drug or otherwise treating withdrawal from stopping the drug? If that's the case, (and I don't know so I won't speculate much more), both are dangerous since dependency on the new drug is a very real likelihood, and outright stopping could result in death.

 

[leela]

Some people don't experience strong withdrawal, at least not in ways they are aware of; for others, withdrawal from clonazepam feels like a slow, painful death. Those in the former category are probably rolling their eyes thinking "How bad can it be for them?

I am one of the former category, but no, I have never rolled my eyes or thought the thought you propose.
You will note that I asked Nielk to clarify so that I could *better* understand her awful situation, and answer her question about Cheney's position. I love Nielk and it pains me that she has to suffer.

I deeply appreciate that this drug is terrible for some people. But please don't make those of us terrible who are not experiencing what you are experiencing. That just piles unnecessary terrible on top of existing terrible!

And I have not reread the thread, but I"m not sure anyone has given advice? Mostly I think it was people reporting their own experience in the sense of support and understanding. Maybe you could receive the aspect of support better if you stopped imagining those of us who tolerate this drug "rolling our eyes" at you...

 

[Rockt]

I am one of the former category, but no, I have never rolled my eyes or thought the thought you propose.
You will note that I asked Nielk to clarify so that I could *better* understand her awful situation, and answer her question about Cheney's position. I love Nielk and it pains me that she has to suffer.

I deeply appreciate that this drug is terrible for some people. But please don't make those of us terrible who are not experiencing what you are experiencing. That just piles unnecessary terrible on top of existing terrible!

And I have not reread the thread, but I"m not sure anyone has given advice? Mostly I think it was people reporting their own experience in the sense of support and understanding. Maybe you could receive the aspect of support better if you stopped imagining those of us who tolerate this drug "rolling our eyes" at you...

Hi Leela.

From a previous post of mine:

This is why I made the comment about advice on this issue previously. As well intentioned as everyone is, (and again I know and appreciate the good intent) if you haven't experienced the nightmare of clonazepam's iron-fisted grip, you can't give valuable advice because you can't imagine or understand how difficult (understatement of the year)(and dangerous) the withdrawal is.

Strongly worded to reflect the gravity of the situation, not to be mean or insenstive. Very sorry if I gave the wrong impression. I don't think anyone here is terrible. And I do appreciate and respect everyone's input. It's just that clonazepam/klonopin is a uniquely dangerous drug and, at least in my own experience, it's seems difficult for others to fathom the nightmare that getting off it is, unless they've experienced it firsthand.

 

[xchocoholic]

Myalgic encephalomyelitis (sp?) means inflamation of the brain and spinal cord with pain in muscles.

just my 2 cents .. I'm not trying to scare anyone but I don't see how anyone diagnosed with accute onset ME can heal our brains or spinal cords enough to stop taking something that protects our brains. Because a virus, bacteria etc Damaged our brains, these are now succeptible to any toxin that can get into our brains. Whether it's mercury, candida, gluten, lyme, etc. And it's possible that we're still carrying the trigger.

Not that I think I'm super woman, lol, but I'm almost 7 years post healthy lifestyle and I'm not there. I'm 1000x better than I was overall, but I don't think my brain / body can heal now.

I have a neurotoxic reaction to b12 so I can't do Rich's or Freddds protocals. I tried and my b12 levels went up to 1600 and I couldn't sleep anymore. NOT that I think this
is all a person needs to heal their brains. Just googling nutrients brain will show you the long list of what MIGHT help
but there is no way anyone can say these will heal your brain. All we can do is try.

I'm avoiding anything that I know will cause further damage such as toxic foods and chemicals. And I take
Theanine (= klonopin) as needed for myoclonus. Jerking / seizures aren't good for the brain. I also have to take melatonin and 5htp sometimes because my body isn't producing it.

I resisted dr cheney's attitude towards taking klonopin a few years ago but the more I see just how much
can and can't heal, I understand where he's coming from now. Although, I'll stick with theanine, etc as long as possible to avoid the known complications of klonopin. If I have to I'll take klonopin over further brain damage tho.

Sorry for the book .. Tc .. X

 

[Sushi]

I am one of the former category, but no, I have never rolled my eyes or thought the thought you propose.
You will note that I asked Nielk to clarify so that I could *better* understand her awful situation, and answer her question about Cheney's position. I love Nielk and it pains me that she has to suffer.

I deeply appreciate that this drug is terrible for some people. But please don't make those of us terrible who are not experiencing what you are experiencing. That just piles unnecessary terrible on top of existing terrible!

And I have not reread the thread, but I"m not sure anyone has given advice? Mostly I think it was people reporting their own experience in the sense of support and understanding. Maybe you could receive the aspect of support better if you stopped imagining those of us who tolerate this drug "rolling our eyes" at you...

Leela and Roct,

I too am one of the former category and my personal experience with clonazepan fits with what we have heard Dr. Cheney say. There must be genetics at play here and differences in our detox systems. Just to add data here to help us understand the different responses, I test as having a slow phase I detox system and a normal phase II.

But, as Leela said well, I certainly don't minimize the "iron grip" that clonazepam has on many here. I wish there were a way to tell how we would respond to it before we start taking it. I really hope those who are struggling so hard with this drug find a safe way to taper off that doesn't bring too many awful symptoms. My heart is with you.

Just to add to the range of responses to this drug, I have been taking low doses of clonazepam for excitotoxicity for a few years. I have never needed to increase the dose and, on good days, when my other symptoms are minor, I don't have excitotoxicity and don't take clonazepam. It seems to follow (again, this is just for me) that on the days when ME/CFS symptoms are minor, I don't need it and it doesn't even occur to me to take a small dose. Maybe this corresponds with what Cheney is reported to have said about "when you are well, it is not difficult to go off it." Again, probably genetics at play.

I don't know. I think all we can do here is share personal experiences and try to understand, appreciate and empathize with those who struggle so mightily with this drug. One of the Genova panels tests you for response to some drugs, but I don't remember if clonazepam is one of them. I do wish that doctors has a way of assessing how you will do with this drug before they prescribe it.

Best wishes to all those who struggle with this or any other drug. No one needs that on top of this disease.

Sushi

 

[Rockt]

Myalgic encephalomyelitis (sp?) means inflamation of the brain and spinal cord with pain in muscles.

just my 2 cents .. I'm not trying to scare anyone but I don't see how anyone diagnosed with accute onset ME can heal our brains or spinal cords enough to stop taking something that protects our brains. Because a virus, bacteria etc Damaged our brains, these are now succeptible to any toxin that can get into our brains. Whether it's mercury, candida, gluten, lyme, etc. And it's possible that we're still carrying the trigger.

Not that I think I'm super woman, lol, but I'm almost 7 years post healthy lifestyle and I'm not there. I'm 1000x better than I was overall, but I don't think my brain / body can heal now.

I have a neurotoxic reaction to b12 so I can't do Rich's or Freddds protocals. I tried and my b12 levels went up to 1600 and I couldn't sleep anymore. NOT that I think this
is all a person needs to heal their brains. Just googling nutrients brain will show you the long list of what MIGHT help
but there is no way anyone can say these will heal your brain. All we can do is try.

I'm avoiding anything that I know will cause further damage such as toxic foods and chemicals. And I take
Theanine (= klonopin) as needed for myoclonus. Jerking / seizures aren't good for the brain. I also have to take melatonin and 5htp sometimes because my body isn't producing it.

I resisted dr cheney's attitude towards taking klonopin a few years ago but the more I see just how much
can and can't heal, I understand where he's coming from now. Although, I'll stick with theanine, etc as long as possible to avoid the known complications of klonopin. If I have to I'll take klonopin over further brain damage tho.

Sorry for the book .. Tc .. X

Hi xchocoholic.

Clonazepam was prescribed to me for sleep, but I remember reading Cheney's philosphy on it later and thinking, hey, I'm helping my brain too. But if Dr. Ashton is right, (and again, from my own experience, I believe she is), not increasing the dose results in withdrawal. So what might be misconstrued as worsening symptoms, may be withdrawal from maintaining the same dose. If Dr. Ashton is right and Dr. Cheney is right, a person would have to keep increasing dosage to keep from further injuring the brain? Doesn't really make sense does it?

I know that (hopefully) nearing the end of the benzo dependency, I'm feeling a lot better in the brain department. By the time it dawned on me that clonazepam might be worsening things, I could barely read, I couldn't watch tv at all, I used the computer as sparingly as possible and only out of desperation trying to find some answers, (but it left my brain spinning), and only slept 3-4 hours/night. All that has improved, (particularly sleep) and I've actually been watching the first period of some hockey games during the playoffs (yay!). A long way from good, but better.

Digressing a bit here, but what if brain fog and over-stimulation, fatigue and other brain related maladies are the result of something simpler? You mentioned Lyme. I've been reading some of Dr. Klinghardt's thoughts about CCSVI (http://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency) where he found, I think, 38 of 38 Lyme patients tested had CCSVI. Some have had the treatment to improve blood flow with remarkable results. Unfortunately, it doesn't seem permanent in many, and they re-stenose, but it's a start. If unblocking the veins worked once, it will work again and once they find a way to maintain the free flow permanently it could be a big part of the answer. The body seems to have amazing resiliency and can bounce back once offending agents are out of the way.

 

[perrier]

look at a low dose combination of a few things for sleep and alternate them regularly. Somethings that arent benzo's that can help for sleep are lyrica, neurontin and seroquel, maybe switch from klono to valium.
I still think many of us have chronic sleep issues that arent going to go back to normal and arent because one has taken benzo's, tolerence to sleep meds i think is an issue and we need to alternate things for sleep so we can keep drug doses low and avoid tolerence.

cheers!!!

Hi Heapsreal,
Thanks for your suggestions. Here is how I got into this hell.
1) I used to cycle sleep aids: 2 nights Klonopin, 2 nights other junk: Ambien, Lunesta, (you name it: many I could not tolerate.)
2) Sleep was not good with the above except on the first two nights.
3) I did the above in order not get addicted.
4) IN 2009 I saw a doctor who promised he could cure me and I was seriously weaning the Klonopin down to .25mg. But as my pathetic functioning was deteriorating due to lack of sleep every two nights, and the other sleep aids had 'died' on me, I started the Klonopin every night. Thinking like the fool I am that I was going to get out of this illness.
5)And like Nielk put it, you have to keep increasing the dose. Now I am hooked.
6) And I want to get off this drug.
7) I am without any sleep aids other than this Klonopin. I do take Melatonin as well and about 8 other over the counter pills from the health food store, not to mention magnesium, and glycine, and you name it.
8) If I start weaning, what am I to take to sleep; one night of no sleep and I am stuck in bed all day.

I am happy this med. helps some folks, however, some of us really do not like this drug.
Kind regards, Helene

 

[perrier]

Hi Rockt and other folks:
Thanks for your serious help. You have, Rockt, shed some interesting light on Fred's method. I will recontact him for help.

Here is what Dr. Teitelbaum says in his book, "From Fatigued to Fantastic."

"Klonopin: Although in the Valium family, and therefore potentially addictive, Klonopin can be very helpful for people with FMS. When used at doses of less than 3mg at night, I have not seen any problem with addiction. Most people do not need to go above this dose....." (page 117, 2001 edition)

Now, the highest I have ever gone with this drug is 1.25mg, and I am going through hell. It was proposed to me by a CFS doctor who said it was very beneficial. When I first started it I was super sensitive to it, that I was taking a crumb, yes indeed, a crumb. I had to do NAET to tolerate it. This physician put everyone on this drug. And over the years the dose has risen and now it is a daily drug habit.

Kindest regards to all you fine folk. Helene

Hi Helene.

All I can tell you is that getting the withdrawal (somewhat) under control has improved my sleep greatly. It didn't happen oevernight and it's not perfect, but I'm not having great difficulty getting to sleep and I'm not waking up after a few hours, with no hope of returning to sleep. I actually look forward to bedtime now

I'm not exactly sure what you mean by "not strong yet"? Physically, as in CFS is still too bad, or mentally? The taper that I used with Freddd's help, without going into great detail, relies on gradually lenghtening the time between doses to decrease the dose and also breaking a single dose and time (nightly in my case) into smaller doses at varying times. This greatly takes the edge off the withdrawal that you already have from not increasing your usual dose (see my previous response) and deals with the brain's conditioned response from taking the drug at or near the same time every day. I felt better (I feel because of this timing and the divided doses) soon after starting the taper. I ran into difficulty later when the doses started getting much smaller. In retrospect, staying at one level for a couple or a few days would have helped when things got edgy (and did help later when I forced myself to do this) but I was focussed on "progressing" and forged ahead. Lucky I didn't kill myself. Yes, we can be our own worst enemies.


re rehab centers, there was a thread about it. I think neilk posted on that thread and maybe he can recall more, or even reference it. In that thread it seemed very clear that traditional rehab centers aren't tuned in when it comes to benzo's and the need to very gradually allow the gaba receptors to no longer need the drug, (or at least, need it less). I don't have any experience with rehab, but don't they mostly involve medical intervention, either switching to another drug or otherwise treating withdrawal from stopping the drug? If that's the case, (and I don't know so I won't speculate much more), both are dangerous since dependency on the new drug is a very real likelihood, and outright stopping could result in death.

 

[leela]

Well, this won't help with withdrawal, but for sleep have you tried the Tart Montmorency Cherry juice?
Sounds crazy, but it is an amazing sleep aid. It somehow naturally increases melatonin in a way that supplementing it doesn't. Plus it's really tasty!

My TCM suggested 1oz in tonic water (unsweetened if you can find it) and a squeeze of lime. (This helps the juice to also cleanse the blood and tonify the liver. ) Added benefits are high anti-oxidant/anti-inflammatory and athritic-type pain reduction. I definitley had a decresae in overall body pain.

I usually am put off by mainstream "wonder products" but this one really worked for me. I used the Stanton Orchards brand even though it is not organic--reportedly the climate in that region is such that they don't have to use pesticides.

Sorry, a bit OT but feeling your sleep deprivation, Helene, and figure it's always nice to have something new and natural to try.

 

[perrier]

Thanks Leela for the suggestion. In fact, at some point, I seem to recall a Naturopath did mention cherry juice, from sour red cherries. Well, I even bought sour red cherries and tried this but with no result. However, your product seems to be concentrated. I will most definitely look it up on the web and purchase it; it sounds nice too. Thank you very much for taking the time to respond to me. Helene

Well, this won't help with withdrawal, but for sleep have you tried the Tart Montmorency Cherry juice?
Sounds crazy, but it is an amazing sleep aid. It somehow naturally increases melatonin in a way that supplementing it doesn't. Plus it's really tasty!

My TCM suggested 1oz in tonic water (unsweetened if you can find it) and a squeeze of lime. (This helps the juice to also cleanse the blood and tonify the liver. ) Added benefits are high anti-oxidant/anti-inflammatory and athritic-type pain reduction. I definitley had a decresae in overall body pain.

I usually am put off by mainstream "wonder products" but this one really worked for me. I used the Stanton Orchards brand even though it is not organic--reportedly the climate in that region is such that they don't have to use pesticides.

Sorry, a bit OT but feeling your sleep deprivation, Helene, and figure it's always nice to have something new and natural to try.

 

[Nielk]

Hi Tania.

Thank you for your post and explanations.
I think that the excoticity and sleep problems are tied together for people like me.
When I had both of my sleep studies done because of my insomnia, it showed that I had a lot of alpha wave intrusions which never allowed me to reach stage 3 or 4 sleep. Which meant, I was on extreme constant sleep deprivation mode. They explained that this was aggravating my ME/CFS severity. That's when they put me on Klonopin. I don't remember exactly the dose but, I'm sure it was low. They said, this will calm down my brainwaves and therefore give me quality sleep. Like I wrote (probably too many times already) , after a time, I became tolerant to it. It didn't help me sleep any longer. I had another sleep study done that showed the same problem and they increased my dosage of Klonopin. This kept happening. I kept needing more and I still do. I also suffer from Hyperacusis - noise sensitivity which I think many ME/CFS patients do. For me, this symptom has been getting worse to the point where I have to live in a complete noise free environment. My husband has to whisper to me and I don't talk on the phone unless it's one of my children and I make it very short. I obviously still have the problem of excitoxity and this is probably why I can't reduce my Klonopin. If I were to look at myself objectively, I would say, why live with all this constant pain, just increase the dose of Klonopin as needed. Why worry about what these Benzo's are going to do to me down the line. Just deal with my pain now. Who knows how long I have left. Why live in constant agony?

 

[xrayspex]

Hey Rockt, I am interested in CCSVI that you brought up. One of the precursors to my "CFS" was cervical adjustments that were not initially needed (long story) and I have felt that whatever wrong that did to my body is an important piece of my dysfunction, but have never gotten a good answer or solution from medical system about it, so when I read about zanboni (sp?) I was intrigued couple years ago.

How is it thought to be tied into lymes?

I followed yr link and then a link from there about ischemia, it mentions under treatment for that problem that lowering body temp in extreme cases is useful that hydrogen sulfide can be useful--this really clicked for me---perhaps the lower body temp some cfs people get is a protective mechanism, and maybe the gut issues we get with de merleir theory about hydrogen sulfide is actually serving a purpose. It reminds me about what I have read about parasites, that some research indicates they are good to combat certain gut problems and certain autoimmune issues.

it seems like that is one of the crux of our problems with getting treatment, some symptoms that seem maladaptive are serving a purpose and then we isolate them and try to treat that problem without understanding the holistic issue and maybe make progress in one area but then new problem pops up. its maddening.

anyway, I really wish medical system was way more advanced than it is and did a better comprehensive evaluation of all our body systems.

and Helena sorry to hear about your plight. I went to Cheney for an eval 4 years ago and it was very intersting for me and opened me upto many ideas I hadnt known about before about cfs (although i have had issues since '89) and introduced me to people who gave me more info and good forums on line etc. However I couldnt tolerate his main treatments which at time were still klonopin and doxepin plus the stuff I forget what you call it like nexavir but made from buffalo, some peptide sort of stuff. I am too mcs. I have opposite problem of you and many as I don't develop tolerances often and teeny amounts of klonopin, like a tiny crumb could make me sleep. I have used it occasionally but not for awhile as I didnt like the hangover next day of bad mood and worse brain disorganization....I switched to benadryl and that helps me a lot with sleep and sensitivities and headaches etc but also seems to be lowering my IQ, its very imperfect solution. I do believe in concept of neuroprotection. anyway I decided DR C was way too expensive for me to justify trying to pay ongoing esp since didnt tolerate his meds (can't handle mag sulphate or b12 either!) but he was very validating and helped with some lifestyle ideas. I was bummed that after I chose not to continue all of his clients stopped communicating with me via internet and I had thought i had made some friends there. I was left to conclude that given his expense they don't want to share info if yr not paying and I think that is lame.

oh one other thing about klonopin, I can understand both camps of folks those who have hard time wiht and those that like it, even tho I could walk away from it when I used it regularly at times, like a dustsize piece at night say 4x a week for a month or 2 at time I started to feel like it would be tricky to stop...I think its what I call one of the very "sticky" meds, i found gabapentin to be that way as well, in minute amount for me, less than .10 of ml for less than a week I got awful backlash when I stopped it of old and new symptoms. I know it must say something about what is up with our brains but it doesnt make it any easier to know what to do about it and whether to use it or not in some cases. there was one med sort of like that but not nearly as weird in causing new symptoms, propoxyphene tht I felt was very neuroprotective for me and helped wiht pain and fatigue and it seemed worth it even tho didnt like stigma of it and idea of needing something indefinitely is hard but if its helping you wth.
unfort they took that one of the market. figures one of the only useful things I ever found. bizarro world.

 

[xchocoholic]

Hi xchocoholic.

Clonazepam was prescribed to me for sleep, but I remember reading Cheney's philosphy on it later and thinking, hey, I'm helping my brain too. But if Dr. Ashton is right, (and again, from my own experience, I believe she is), not increasing the dose results in withdrawal. So what might be misconstrued as worsening symptoms, may be withdrawal from maintaining the same dose. If Dr. Ashton is right and Dr. Cheney is right, a person would have to keep increasing dosage to keep from further injuring the brain? Doesn't really make sense does it?

I know that (hopefully) nearing the end of the benzo dependency, I'm feeling a lot better in the brain department. By the time it dawned on me that clonazepam might be worsening things, I could barely read, I couldn't watch tv at all, I used the computer as sparingly as possible and only out of desperation trying to find some answers, (but it left my brain spinning), and only slept 3-4 hours/night. All that has improved, (particularly sleep) and I've actually been watching the first period of some hockey games during the playoffs (yay!). A long way from good, but better.

Digressing a bit here, but what if brain fog and over-stimulation, fatigue and other brain related maladies are the result of something simpler? You mentioned Lyme. I've been reading some of Dr. Klinghardt's thoughts about CCSVI (http://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency) where he found, I think, 38 of 38 Lyme patients tested had CCSVI. Some have had the treatment to improve blood flow with remarkable results. Unfortunately, it doesn't seem permanent in many, and they re-stenose, but it's a start. If unblocking the veins worked once, it will work again and once they find a way to maintain the free flow permanently it could be a big part of the answer. The body seems to have amazing resiliency and can bounce back once offending agents are out of the way.

Hi rock,

I'm getting tired but wanted to post a short reply. I was prescribed klon for myoclonus and took it for 16 years. I never increased the dose past 1.5 mg, per doctors orders, from what I remember. I was prescribed trazodone and benadryl for insomnia. Sometimes I slept and sometimes I didn't sleep for a couple of days.

All that time I also had ataxia (couldn't walk any distance so I had to use a motorized cart), brain zaps,
nausea, buzzing, narcolepsy, insomnia, oi, etc etc ... Once I took the toxins out of my diet, most of these symptoms vanished. But it took time.

The ataxia went away majically one year post gf without the use of supplements. Ataxia indicates brain damage. Even tho I can walk perfectly now, if I take benadryl or too much klon (i took it constantly for about a month after my tonic clonic last march) it comes back. I may be getting a mild case from gluten too. I still fall into things when walking every once in awhile.

I still get myoclonus and insomnia sometimes and from what I'm seeing these are from toxins like gluten, mb12, adb12 and now from over doing it on juicing. Everytime I've removed these toxins in the last few years my symptom go away again. Everytime .. Kow ..

My concern is that I'm still having an extreme reaction in my brain to toxins. Keeping these out of my diet is next to imoossible in today's world.

And this is why I think Cheney has a valid argument. We need to protect our brains. Although, I think he should've had his patients eliminate all toxins and try theanine, melatonin and 5htp. Since he's a traditional doctor tho, that's not likely.

I've gotta get to sleep but I'll be back. I'm very interested in this .. Tc .. X

 

[taniaaust1]

Hi Tania.

Thank you for your post and explanations.

I think that the excoticity and sleep problems are tied together for people like me.
When I had both of my sleep studies done because of my insomnia, it showed that I had a lot of alpha wave intrusions which never allowed me to reach stage 3 or 4 sleep. Which meant, I was on extreme constant sleep deprivation mode. They explained that this was aggravating my ME/CFS severity. That's when they put me on Klonopin. I don't remember exactly the dose but, I'm sure it was low. They said, this will calm down my brainwaves and therefore give me quality sleep. Like I wrote (probably too many times already) , after a time, I became tolerant to it. It didn't help me sleep any longer. I had another sleep study done that showed the same problem and they increased my dosage of Klonopin. This kept happening. I kept needing more and I still do. I also suffer from Hyperacusis - noise sensitivity which I think many ME/CFS patients do. For me, this symptom has been getting worse to the point where I have to live in a complete noise free environment. My husband has to whisper to me and I don't talk on the phone unless it's one of my children and I make it very short. I obviously still have the problem of excitoxity and this is probably why I can't reduce my Klonopin. If I were to look at myself objectively, I would say, why live with all this constant pain, just increase the dose of Klonopin as needed. Why worry about what these Benzo's are going to do to me down the line. Just deal with my pain now. Who knows how long I have left. Why live in constant agony?

Nielk what a nightmare (((hugs))) it does appear you are in an impossible to fix place currently. I really hope someone has some idea for you as it sounds as if just simply lowering this drug isnt an option as you still do need something for the neuroexcoticity issues. You have that issue and still need it treated too.

I may of had the have the same issue as you... my past EEGS (I had two abnormal ones) showed that my brain wasnt going into the right states when it was supposed to do so (I never had a sleep study done, just my awake EEGS were showing my brain waves doing wrong things and too fast and intruding to where they shouldnt when Im in a relaxed state with eyes closed etc).

Sounds like I was just lucky, to have a doctor not trying to fix my sleep issues like that, so the drug wasnt raised in my case. I may of ended up in your situation otherwise.

At what point should doctors stop trying to raise a drug to correct an actual problem seen there? I think that is a big question. I too wonder what a dr like Cheney would do in this situation?

I still do have MAJOR sleep issues (I take up to 3 different drugs for sleep)... but my most recent EEG (about a year ago?) was normal for the first time.. finally no excessively fast brain wave state (and I had that when I wasnt taking drugs at the time...so my ME in that way must be just going better).

Darn sleep issues thou.. continue.. so my brain wave state wasnt the only thing which was causing my sleep issues. I also must have too low melatonin on top of who knows what else wrong with it.

I wish our issues were so much easier to fix.

 

[taniaaust1]

I went to Cheney for an eval 4 years ago and it was very intersting for me and opened me upto many ideas I hadnt known about before about cfs (although i have had issues since '89) and introduced me to people who gave me more info and good forums on line etc. However I couldnt tolerate his main treatments which at time were still klonopin and doxepin plus the stuff I forget what you call it like nexavir but made from buffalo, some peptide sort of stuff. I am too mcs.

I was bummed that after I chose not to continue all of his clients stopped communicating with me via internet and I had thought i had made some friends there. I was left to conclude that given his expense they don't want to share info if yr not paying and I think that is lame.

sorry to hear you went throu that. Im just so glad you shared your story with us esp since it was only 4 yrs ago you went to see him. One soo rarely hears from Cheney patients.

From what you said it appears he hasnt changed much thou I know some of his theories have really changed over the years.

 

[taniaaust1]

Those in the former category are probably rolling their eyes thinking "How bad can it be for them? It wasn't difficult for me at all". Those in the latter are nodding and know that I'm not even slightly exaggerating.

I truely dont think that at all.. I know some do get very severe issues from these drugs but people need to realise it isnt the same for everyone.. not everyone is getting bad experiences from them. I took it for a while and didnt get an issue and hence I do share my thoughts... just like those with issues with it share them.

(I actually cant remember well.. what dose I was on of it but I did look up Cheney's recommendations and my doctor gave me that and all I know is for MYSELF I had no issues with coming off nor did I want to take more of it).

 

[taniaaust1]

Re the "little" doses Cheney uses:

How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheneys most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, youll experience greater clarity and think better. If the daytime dose is too high, youll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.


At minimum, this is 1.125mg/day - not "little" ( again, I was taking .5mg/day).

okay.. seeing it that way it may not be a little dose.. Im only going by what Ive heard Cheney say about that dose he prescribes. I used to reading him calling it "little" or "small" so hence the words Ive been using.

Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, youll experience greater clarity and think better.

That is exactly what I experienced on the drug. My mind was actually better.. calmer and I could think better. It helped me with that horrible "very wired but tired" some of us get. (it didnt help my normal ME tiredness of that time..but that other part of it).

(as I have stated here previously.. I wasnt taking it for sleep..but rather to try to calm down all the neuroexcitability I had (noise intollerance and a whole heap of other symptoms of neuroexcitability, including a contant anxiety which it caused too). I took the drug as a neuro protector as well as Dr Cheney suggests.

I never took over a quarter or half a tablet and at times found that I even could get away with having less then that to treat the symptom I was treating with it (eg halfing a quarter of a pill worked sometimes... I think I mostly took thou about a quarter of a pill thou most of the time)

I took it according to my need just like I take my pills now eg Temapazem, antihistamines and others, according to need (uptil certain set dosages... I have set doseages I can go up to and set amount of doses I can go up to in certain time periods but other then those "rules" most of my medications are flexable.

I have a very flexable medication program as it needs to be, as my symptoms vary in strength and what ones are coming in daily, sometimes I can be worst or a bit better for months.

I can usually tell a drug symptom from my ME ones and a ME crash etc... maybe some who havent been sick as long, maybe would find the telling of what is what happening harder? I dont know.

Why this drug is called a neuroprotector by some of our experts in the ME field.. I dont know either. (Maybe it is cause it stops some of us heading more towards that seizure threshold???? I dont know).

Im sorry if some are upset just with me sharing my own experience of this drug, along with what Ive done with it due to what Ive read coming from ME experts. This doesnt discount anyone elses personal experience of the drug.

 

[Little Bluestem]

Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy.

Several years ago I read a book by a physician who had treated CFS (as it was called then) patients. He has long since disappeared from the scene and I do not remember his name.

He noted that many of his patients had a paradoxical reaction to Xanax, another benzodiazepine. It made them more energetic. I am currently taking it and hope that it will have the protective effect of Klonapin without it's deleterious effect. When I began taking the Xanax, my autonomic nervous system symptoms were not severe. I am not saying that it is a substitute for Klonapin; just that after reading about Konapin's potential risks, I decided to stick with it and hope for the best.

 

[taniaaust1]

Several years ago I read a book by a physician who had treated CFS (as it was called then) patients. He has long since disappeared from the scene and I do not remember his name.

He noted that many of his patients had a paradoxical reaction to Xanax, another benzodiazepine. It made them more energetic. I am currently taking it and hope that it will have the protective effect of Klonapin without it's deleterious effect. When I began taking the Xanax, my autonomic nervous system symptoms were not severe. I am not saying that it is a substitute for Klonapin; just that after reading about Konapin's potential risks, I decided to stick with it and hope for the best.

Interesting to hear of your Xanax experience. Ive tried Xanax and thou it can help anxiety if i have that... I dont feel too well on it and it hinders my thinking (in a foggy way) rather then makes my mind feel clearer due to less thoughts rushing in my head.

It has completely different affect on me to what klonopin did. It just didnt feel good for my body at all.

(actually the Klonopin didnt give me more energy either but it didnt hinder that.. and cause with Klonopin my mind was feeling better and my whole body not feeling sooo spazzed out with the neuroexcitability.. I felt able to do more thou my energy level hadnt improved.

I still wasnt feeling energetic at all, if that makes many sense.. I just seemed a bit better. Actually thinking back more at that time.. that was when I started exercising again (thou I cant now).. so maybe I wasnt just feeling better.. I must of being a bit better too.

Where as Xanax just knocks me around. (I'd still take that one thou and have at times got one of my Boyfriends pills, IF certain symptoms were too bad and IF had nothing else to take but I really dont like it).

 

[Nielk]

Are Cheney patients sworn to secrecy?