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CLINICAL STUDY on KLONOPIN / benzos for CFS?

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hello all,

As much as I despise taking klonopin (clonazepam) and hated taking valium when I was trying to taper off of "c", I'm trying to find a study or some sort of research reference that I can show to my doc in a week or so, so that she doesn't cut me off cold turkey, or reduce the dose too quickly. I have to go in before she'll refill it. Like so many of your docs, she's tried a half-dozen or so antidepressants on me, which just make me suicidal.

My anxiety skyrocketed while trying the methylation protocol back in Oct-Dec, and while I'd LOVE to be able to stop the drug, I know it's going to take longer, maybe even a year, to get off of it as my other symptoms/health improves (hopefully). What's so frustrating is that I was down to about 2mgs of valium, when she put me back on clonazepam (as she was/is afraid she'd lose her license for prescribing valium that long). I know...doesn't exactly make sense. They're both benzos, and valium has a longer half-life and less serious side effects. (My anxiety also increased after the switch to clonazepam.)

Anyway, I know Cheney has recommended klonopin/clonazepam, but I need to find something with more weight, clinically, for her to justify refilling the prescription.

Can anyone help me find a study or some pubmed research on the subject? This wired but tired feeling, or the overstimulated HPA axis...???

THANKS IN ADVANCE,

Dan
 

heapsreal

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Thats amazing , it is the exact opposite in australia, doctors would rather give u valium then clonaz. Have u tried lyrica for anxiety? probably a better option then ad's or maybe baclofen, have a google. If u find any amazing cures for insomnia let me know.

cheers!!!
 

pamb

Senior Member
Messages
168
Location
Edmonton, AB, Canada
Hi Dannybex,

I'm sorry I have nothing official for you, just a thank you. My husband is so much like you, living on his benzos and suicidal on antidepressants. We too hope for the day there is help with the underlying issues so he can reduce significantly. So far he has been unable to. Here in France they just love to give you meds though, so we 'so far' have not had to fight to keep it - just keeping it under control.
 

jenbooks

Guest
Messages
1,270
You've got to be kidding. She thought she'd lost her license for prescribing only 2 mg of valium daily----? I don't believe it. So she prescribed you a drug 10 times stronger with a shorter half life? WTF????

Find another doctor. Klonipin is apparently much harder to titrate off of. Go back to what worked for you. I've just never ever heard of someone losing their license for prescribing 2 mg daily of valium, which is generic and cheap anyway.
 

Nielk

Senior Member
Messages
6,970
From my personal experience with Klonopin, I would strongly recommend not to start taking it. I have been on it for about 5 years. I feel that it doesn't work anymore for the reasons it was initially prescribed - sleep issues. I currently take 3mg each night but, it doesn't help with falling asleep/ I have to take Ambiem for that. In addition, after doing some reading about Klonopin, I see that it reduces the quality of sleep - it prevents deep stage sleep. Why am I still on the Klonopin you might ask. I
am unable to wean off it. It's like I'm stuck at this 3mg dosage and if I budge from it, I get very strong withdrawal symptoms. At this point, I don't know if it is because my body needs it for some reason. (it promotes GABA) or I'm simply addicted.

I'm sure not everyone has such difficulty getting off Klonopin, I just wouldn't want anyone else to be in the same difficult spot I'm in.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
You've got to be kidding. She thought she'd lost her license for prescribing only 2 mg of valium daily----? I don't believe it. So she prescribed you a drug 10 times stronger with a shorter half life? WTF????

Find another doctor. Klonopin is apparently much harder to titrate off of. Go back to what worked for you. I've just never ever heard of someone losing their license for prescribing 2 mg daily of valium, which is generic and cheap anyway.

I had the same reaction -- just dumbfounded. This was after 2 years of tapering from 16 mgs or so of valium down to 2 - 2 1/2 mgs, per the Ashton protocol too -- about an 80% reduction, and then was cut off and switched back to the original culprit.

Perhaps the problem is that she's my medicaid doc, and maybe they are 'watched' by some oversight committee? I don't know.

She's a nice person, but doesn't understand CFS, and has told me repeatedly that I know a lot more about it than she does...

Just need to find some sort of excitotoxicity (sp) study...or something to try to convince her. Even if I was able to switch to another doc, since I'm in the system, I have a feeling "the info" would be sent with me.

sigh.

Thanks for your replies.

d.

p.s. Nielk -- I agree. I never wanted to be on this drug. It was MY idea to taper off of it, especially after I became borderline anemic in 2008 (klonopin/clonazepam is the only benzo with anemia, leukopenia, and neutropenia as 'side effects) -- something that dear Dr. Cheney never mentioned...

p.s. I take it mid-day, for muscle twitching and anxiety, and then take 1/3 of the rest of the dose about 8pm, then use natural supps for sleep.
 

jenbooks

Guest
Messages
1,270
I'd open the discussion with her as to was she actually being overseen or in some danger of keeping you on valium when you were slowly reducing? I don't believe it, Medicaid or no. Lots of people are on much higher doses than that, and on Medicaid. It's not like you're on oxycontin. You were doing great on your taper, and better on Valium with its longer half life, and you want to go back to your Valium and continue your very slow taper--or if she has a problem keeping you on 2 mg Valium in perpetuity, then please ask her to recommend another doc. Got to be assertive here.

In addition, she screwed up your taper. What a drag. You were doing really well. I'd go back to Valium and back to the taper although 2 mg a day is a low dose and if it helps you sleep seems like it might be worth it.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
BENZODIAZEPINES: HOW THEY WORK AND HOW TO WITHDRAW

(My anxiety also increased after the switch to clonazepam.

Hi Dan,

I think your above words say it all, and the critical importance of it needs to be conveyed, in one way or another) to your doctor. I'm very much in agreement with Jenbooks when she makes recommendations on ways to possibly address this challenge and convince your doctor to listen to you.

There may not be any studies out there that may bring about the desired result with your doctor. I myself would probably draw on the extensive database of information on the conundrum of benzodiazapine withdrawal at this site:

BENZODIAZEPINES: HOW THEY WORK AND HOW TO WITHDRAW


It's the website I depended heavily on when I went through my 1-year+ clonazepam withdrawal. Perhaps if you printed out selected persuasive sections from areas on this website, it might be helpful. I think the main thing is to let her know (diplomatically of course) how important it is to go back to the valium program you were on, given how detrimental the switch to clonazepam has been.

All the best Dan. Sounds very frustrating.

Wayne
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
There may not be any studies out there that may bring about the desired result with your doctor. I myself would probably draw on the extensive database of information on the conundrum of benzodiazapine withdrawal at this site:

BENZODIAZEPINES: HOW THEY WORK AND HOW TO WITHDRAW


It's the website I depended heavily on when I went through my 1-year+ clonazepam withdrawal. Perhaps if you printed out selected persuasive sections from areas on this website, it might be helpful. I think the main thing is to let her know (diplomatically of course) how important it is to go back to the valium program you were on, given how detrimental the switch to clonazepam has been.

All the best Dan. Sounds very frustrating.

Wayne

Thanks Wayne. Yes, it's incredibly frustrating. And the reason I'm trying to find some studies, is that I was using the Ashton protocol you reference above, and yes, printed out sections of the manual and showed them to her, which we were following. This protocol was surprising to her, but she did go along with it.

It was just taking too long for her I guess, (and of course too long for me too...wish I could've stopped 2 years ago, let alone 6!), but I'll take your suggestions and stress how the change has affected me.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I'll take your suggestions and stress how the change has affected me.

Hi again Dan,

Your situation has been in the back of my mind since reading about it this morning. I was wondering if it might be helpful to suggest trying to have a meeting with both her and her supervisor to see if something could be worked out. It might have the effect of impressing on her the utmost importance you attach to getting back to a protocol that actually works for you.

Perhaps try to have her understand where you're coming from: It's your body (and mind), it's your health treatment plan, it's your quality of life that's at stake. Shouldn't that weigh heavily toward granting a some lea way toward your preferences? (All done diplomatically of course). :angel: In the end, I think it may be your "focused intent" that may matter more than anything in particular.

All the Best, Wayne
 

heapsreal

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Dannybex, whats your reason for getting off benzo's, is it just that they have stopped working ie built a tolerance to them? Im in the same boat with zopiclone, but i seem to get a tolerance to most other sleep meds quickly so im trying to find alternatives to benzos. Benzos i think give great sleep when they work but they dont seem to work forever. I plan to have a break from them and then reintroduce them but use them less often per week. There is also a cross tolerance between the benzos like me being on zopiclone and then using klonopin, it wouldnt feel as strong as if i hadnt ever taken zopiclone. So at the moment im trying to find different combinations of other things for sleep like some herbal stuff with antihistamines etc to get me to sleep.

Some of the benzo withdrawal sites say benzos destroy our ability to sleep, but sometimes i think we with cfs are a bit different as our ability to sleep was destroyed by cfs and some of us need something to get us to sleep. I didnt start using sleep meds until i had cfs, so think even if i withdraw from benzo's, the underlying sleep problems will still be there. Im just trying to reduce the tolerance and not increase my dosages and it will be a routine i suppose of taking regular breaks from benzo's and reintroducing them.

cheers!!!
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
Prohealth Article

Prohealth had a good article

http://www.prohealth.com/library/showarticle.cfm?id=3154&t=CFIDS_FM

Editors Note: The following is based on a recent interview conducted by Carol Sieverling with Dr. Paul R. Cheney, M.D., Ph.D., and the article "CFIDS Treatment: The Cheney Clinics Strategic Approach" (CFIDS Chronicle, Spring 1995). Dr. Cheney gave permission to share this information, but has not reviewed or edited it.

Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists.

Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called "excitatory neurotoxicity." To explain this condition to patients, he draws a line with "seizure" on the far left and "coma" on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it "Neurotoxic State" (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it "Healing State."

In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked "injury," represents the position of CFIDS patients. This puts us in the red "Neurotoxic" zone. When we shift toward seizure, we often experience "sensory overload." Its as if our brains "radar" is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.

Cheney frequently uses the term "threshold potential" when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is "allowed to enter" and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy persons threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results.

Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.

In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isnt addressed.

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.

Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement "Magnesium Glycinate Forte." Magnesium Glycinate alone is a good choice for the more budget minded(www.ImmuneSupport.com sells it as "Magnesium Plus".) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form.

Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until "morning fog" becomes a problem. Most patients cant tolerate more than half a cc.

On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:

1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine)
2. Histamine blockers (Doxepin Elixir)
Under the category "GABA Agonists" (increases GABA) Cheney lists:
3. Klonopin
4. Neurontin
5. Kava Kava
6. Valerian Root

Klonopin is taken "day and night"; Neurontin "night, or day and night"; kava kava daytime only; and valerian nighttime only. The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements.

Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.

MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD.

When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics arent exactly identical to the original products, and with most drugs the slight variations dont matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.

MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE.

Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves:
(1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.

Dr. Cheney said a case might be made that Klonopin is habituating. Its true that it cant be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.

Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem excitatory neurotoxicity. Its prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. Its like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, its not because the drug is addicting, and its not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. Thats the havoc we hear about that is mistakenly called withdrawal."

MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP.

Dr. Cheney said that he honestly doesnt understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in "ordinary" patients. Its not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin.

Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose Im wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if Im wrong about your need for Klonopin? Im absolutely sure Im right, but whats the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimers Disease. Alzheimers Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now its believed that Klonopin didnt actually stop Alzheimers. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you wont get Alzheimers. Youll die of something else first."

The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but its not harmful. In fact, it shifts you into the "healing state" on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isnt an option for most of us, so we need to find the maximum dose that doesnt make us drowsy.

Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they cant stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.

Though it cant stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, youll have more of your brain left."
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Benzos -- the cons...

Dannybex, whats your reason for getting off benzo's, is it just that they have stopped working ie built a tolerance to them? Im in the same boat with zopiclone, but i seem to get a tolerance to most other sleep meds quickly so im trying to find alternatives to benzos. Benzos i think give great sleep when they work but they dont seem to work forever. I plan to have a break from them and then reintroduce them but use them less often per week.

Some of the benzo withdrawal sites say benzos destroy our ability to sleep, but sometimes i think we with cfs are a bit different as our ability to sleep was destroyed by cfs and some of us need something to get us to sleep. I didnt start using sleep meds until i had cfs, so think even if i withdraw from benzo's, the underlying sleep problems will still be there. Im just trying to reduce the tolerance and not increase my dosages and it will be a routine i suppose of taking regular breaks from benzo's and reintroducing them.

cheers!!!

Hi Heaps,

Yes, you're right -- which is another negative against benzos -- that they don't really correct sleep problems, they just mask the symptoms. When one goes off of them, I'm sure the same sleep issues would still be there.

Having said that, I don't really use the clonazepam for sleep. It's more for anxiety and muscle twitching -- I only take a fraction of the pill at night, then add a variety of things -- right now I'm taking ornithine, which is supposed to help -- and it seems to. I was taking melatonin, which knocks me out in a half hour with one milligram, but haven't taken it lately.

If you haven't gotten hooked yet, it's best to avoid them if possible...or take them as infrequently as you can, IMHO. :)
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Prohealth had a good article

http://www.prohealth.com/library/showarticle.cfm?id=3154&t=CFIDS_FM

Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.

MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD.

When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics arent exactly identical to the original products, and with most drugs the slight variations dont matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.

MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE.

Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves:
(1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.

Dr. Cheney said a case might be made that Klonopin is habituating. Its true that it cant be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.

Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem excitatory neurotoxicity. Its prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

Hi Glen,

I've always been kind of puzzled and frustrated by Cheney's remarks from this old article, as it says "Cheney has never seen a recovered patient have difficulty coming off of Klonopin" -- this from 1995. Yet when asked by the NCF about 3-4 years ago how many patients of his have recovered, he answered "Zero".

???

Regarding 'drug seeking behavior': If one's doctor threatens to discontinue prescribing a benzo, I'm pretty sure that people would seek to get it prescribed elsewhere so that they wouldn't have a seizure, or go into some sort of shock.

On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. Its like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, its not because the drug is addicting, and its not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. Thats the havoc we hear about that is mistakenly called withdrawal."

Perhaps, but I wonder what he'd say to thousands of people who DON'T have CFIDS and yet are trying to get off the drug, with sometimes terrible withdrawal symptoms. And the comparison to thyroid meds is kind of odd, to say the least.


Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose Im wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if Im wrong about your need for Klonopin? Im absolutely sure Im right, but whats the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimers Disease. Alzheimers Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now its believed that Klonopin didnt actually stop Alzheimers. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you wont get Alzheimers. Youll die of something else first."

Though it cant stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, youll have more of your brain left."

Hopefully his last statement is true.

However, when discussing what's the worst case scenario, he fails to mention the klonopin is the only benzodiazepine that can cause ANEMIA, and LEUKOPENIA/NEUTROPENIA (Low white blood cell counts) -- all critical to healthy immune function. This is one of the main reasons I asked my doc 2 years ago to switch me to valium so I could get off the klonopin, and taper down....

Thanks for posting this Glen -- I do appreciate it -- it's good for all to see and discuss. Who knows, I may have to bring it to stress the excitoxicity thing, but will also bring the study that shows the anemia/leukopenia connection, and HOPEFULLY, she'll switch me back to valium.
 

5150

Senior Member
Messages
360
Try taking neurontin(gabapentin) as you decrease klonopin. it helps with the excitability problem for me; tends to be a calm-inducing med, which is what a benzo does. so it can mediate the need for the benzo, but you do have to ween 1/2 mg. at a time off the klon. my doctor friend refers to neurontin as a "pseudo benzodiazapine"... altho technically it is not that classification.

best to you.
 

heapsreal

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Try taking neurontin(gabapentin) as you decrease klonopin. it helps with the excitability problem for me; tends to be a calm-inducing med, which is what a benzo does. so it can mediate the need for the benzo, but you do have to ween 1/2 mg. at a time off the klon. my doctor friend refers to neurontin as a "pseudo benzodiazapine"... altho technically it is not that classification.

best to you.
Also maybe look into baclofen as well.
 

zoe.a.m.

Senior Member
Messages
368
Location
Olympic Peninsula, Washington
Dan, Wish I had info to share other than Heather Ashton's manual that Wayne linked, but I think no one wants to even publish on the subject, let alone publish about CFS and the CNS problems. I brought my PCP the article where Cheney recommends Klonopin (from Prohealth I think), but she was unimpressed due to the publishing date, which I'm pretty sure was 2001. I have found that the only doctors open to prescribing these long terms and willing to simultaneously prescribe clon. and valium are often psychiatrists (none of whom accepted insurance, though Medicare should have to pay a portion as long as it's an MD, but Medicare is a mess as far as I can tell). Your doctor is doing you a major disservice if her discomfort allows her to discontinue you and put you in a state of acute withdrawal. Could you maybe just find research related to the prolonged (and acute) effects of benzo withdrawal (even when done properly) and then look at that list alongside the problems you already have due to CFS--thereby separating the issues in a way and getting the doctor to view the clon. necessity purely through a view of how dangerous and difficult the withdrawal can be (again, even when done expertly!) for a "normal" person, let alone with your symptoms? Otherwise, I do think general practitioners are the least comfortable with benzo prescriptions, especially long-term ones, and I wonder if a psychiatric nurse practitioner could be of use (and covered/affordable).

I think I've had many similar reactions to meds and certain protocols as you have and baclofen is like hitting me with a brick and it lasts for a very, very long time, but it could be different for you.

Try taking neurontin(gabapentin) as you decrease klonopin. it helps with the excitability problem for me; tends to be a calm-inducing med, which is what a benzo does.

It would be nice to have a gabapentin thread since I've had it suggested and even prescribed, but with great hesitancy and was told it will "make [me] a bear" and that it causes irritability, weight gain and severe mood swings. If there are a number of people here who are/have taken it, it would be nice to compare it to clonazepam.
 

5150

Senior Member
Messages
360
re neurontin: gabapentin works on the GABA receptor, so irritability is contraindicated; it's prescribed as something to induce a calming response, and indeed it does that for me. I have used it for 10 years with zero side effects,i.e. no weight gain at all and it has only helped even out my natural anxiety tendency. the only time i act like a bear is when the doc asks me if i want to get off it! it's a very helpful medication for my own needs, no problems.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
I'm not sure what dosages most PWC's take, but I've taken klonopin on 3 separate occasions. I usually took .5mg in the morning and 1.5mg at bedtime and maybe had a little daytime drowsiness, but in general was a good dose for me. I tapered off of klonopin over a 6 week period which only consisted of cutting his dose in half (using pill splitter). I haven't taken it in 6 months and have been doing okay without it. It worked better for neuropathy than gabapnetin and Lyrica.

Anxiety set in on me on or around April 12th and I can't get it to calm down, but current personal matters is probably the culprit. Increasing gabapentin doesn't help any, however I think gabapentin is a very useful med and Klonopin as well. I wouldn't hesitate for a second to go back on Klonopin with anxiety the way it is now. I'm not sure which generics Cheney was referring to, but the has pink .5 mg and white 1mg work exactly the same as the name brand.

We are all so much the same and then again completely different in so many ways. I'm not suggesting that anyone start taking Klonopin, but am only commenting that it worked good for me on 3 separate occasions. The only reason I stopped taking it was the first time script was running out and had new doc and did not want to chance him not filling it. The last two times was when I was starting Xyrem at night for sleep and both times (sleep doc and neurologist) would not let me take Klonopin and Xyrem at same time including the a.m. dose of Klonopin.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I will email a 1% per day or other requested taper rate that is calculated by a program to whoever needs it. PM me. To do a 1% taper requires 100 days of starting dose meds, ie for 2mg/day 200mg total for taper. This can be done with any size or amount and it takes about 1+ year to get off. Virtually nobody has a problem with a genuine 1% taper. Taking it to very low levels at this rate prevents the protracted withdrawal syndrome. Reduction rate is about 25% per month, 71 days for 50% off from initial amount.