Discussion in 'Fibromyalgia Main Forum' started by Kacjac, Dec 10, 2005.
What is it?
And how does it help?
I will be asking my Dr. about this, it sounds like just what I need!
Gentle hugz, Karen
P.S. one more question, it's not like Neurotin, is it?, I hope not![This Message was Edited on 12/10/2005]
Klonopin helps calm the CNS. I have had a prescription for night time use to help with sleep but am going to ask for a small dosage for daytime use. Dr. Cheney thinks it's one of the most important medications you can take. You can find his protocol on this website. Neurontin(per specialist at Duke Pain Center) is to be used for short term use only. It increased my brain fog, especially word searching. This is a side effect and I don't think the doctor's are explaning this to their patients. It did help with pain but turned my jello brain into liquid. Hope this helps.
It helps me with anxiety and sleep.
Helps calm me down when my mind is racing.....
I'll go get Dr. Cheney's article on Klonopin and paste it here. Both Neurontin and Klonopin are antiseizure meds but are in different families of medications. Klonopin is not psychologically addictive but one can develop a tolerance and a physical dependence on it. That is not to say that one cannot be addicted to it because people with addiction problems can become psychologically addicted to anything, including sex, shopping, and chocolate. Even some docs do not know the difference. Dr. Cheney debunks the addiction myth in his article.
Dr. Paul Cheney Discusses the Benefits of Klonopin
by Carol Sieverling
Editor’s 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 Clinic’s 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." It’s as if our brain’s "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 person’s 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 isn’t addressed.
How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney’s 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, you’ll experience greater clarity and think better. If the daytime dose is too high, you’ll 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 can’t 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 aren’t exactly identical to the original products, and with most drugs the slight variations don’t 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. It’s true that it can’t 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. It’s 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. It’s like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, it’s not because the drug is addicting, and it’s 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. That’s the havoc we hear about that is mistakenly called withdrawal."
MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP.
Dr. Cheney said that he honestly doesn’t 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. It’s 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 I’m wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I’m wrong about your need for Klonopin? I’m absolutely sure I’m right, but what’s the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer’s Disease. Alzheimer’s Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it’s believed that Klonopin didn’t actually stop Alzheimer’s. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won’t get Alzheimer’s. You’ll 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 it’s 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 isn’t an option for most of us, so we need to find the maximum dose that doesn’t 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 can’t stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.
Though it can’t 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, you’ll have more of your brain left."
[This Message was Edited on 12/11/2005]
I agree with Rainfyer, Mikie, and Nanjee!
It has been the one med that helps me sleep... and it helps with my tremors.
I was been unable to get it for months due to moving....I wasn't addicted! I just could not stay asleep!! When I would fall into deep sleep...it was as though someone shakes me awake! That is awful way to be!
I am so thankful for the little pill at bedtime!
For all of the info and opinions!
My Dr. had tried me on Neurontin, and after about 4 days I woke up one morning with a severe dizzy spell,( room spinning) Dr. didn't think it was the drug, but said I could discontinue it, if I wanted too!
I did ...never had it happen again! Boy, was is scary!
So that's why i'm thinking of trying something else.
Right now, I have Vicodin for emergency's...Tramadol (Ultram)Xanax, Zoloft, Levoxyl, and Toprol XL
Thats all I take, besides Motrin!
And do a search on Cheney. It will list all his articles. This Klonopin article is on the third page of the listings. Click on the printer format icon at the top of the page and print it out. Present it to your doc and let him know that Dr. Cheney is one of the world's foremost experts in CFIDS. Highlight the area where he debunks the addiction myth.
Sleep is a slight state of coma. When the brain is constantly in a slight state of seizure, as are the brains of many with FMS/CFIDS, it is not possible to achieve the slight state of coma which produces refreshing sleep. Klonopin stops the seizure activity and lets one get good sleep.
Tolerance builds slowly to this med. I started out with only half of a .5 mg. tablet and built up to one tablet. This worked for quite a while and then I needed .75 mgs. (1 1/2 pills). Eventually, over 4 1/2 years, I needed to take 1 mg. (2 pills). When I built up a tolerance to that, I weaned back down to 1 pill. That caused some symptoms to return during the day, so I went back to 1 1/2 pills and that is working well for me again. Unless one wants to have to keep increasing, it is good to wean down every now and then. All this took place over 4 1/2 years, so I would say that tolerance builds very slowly, much more slowly than with Neurontin.
During the day, I keep quartered pills with me. If I have racing brain, tinnitus, sensory overload, and/or anxiety, I place one of the quartered pieces under my tongue and it almost immediately stops the seizure activity. This method was OK'd by both my doc and pharmacist. There are days when movement overwhelms me. I could not drive if it were not for my little pieces of Klonopin.
Each of us is different. I would advise anyone taking either Klonopin or Neurontin to start out very slowly and find just the right dose.
Klonopin is what I consider one of the "Pillars" of my treatment regimen. I don't know whether I will always have to take it or not. If so, I will wean down when I have built a tolerance to 2 pills again so that I do not have to continually increase the dose. I am getting better overall, but progress is so slow. I don't know whether I will be able to get off the Klonopin altogether someday or not. I have noticed that I need it less and less during the day.
If we cannot get quality sleep, we cannot heal. Most of us have gone years without a good night's sleep. With the Klonopin, I awake refreshed without grogginess.
I'm going to go get Dr. Cheney's sister article on SSRI's and stimulants, which increase the seizure activity in the brain. I assume the new SNRI's do this as well. Notice that all the patient info on these meds tell the patient to tell his or her doc if he or she has had seizures. Most of us have not had seizures but many of us have seizure activity.
Paul Cheney, M.D., on SSRIs and Stimulants for Chronic Fatigue Syndrome: Frying the Brain?
By Carol Sieverling
Editor’s Note: This information is based on tapes of Carol Sieverling’s October 2000 patient visit with Dr. Cheney. He gave permission to share this information, but has not reviewed or edited it.
Dr. Cheney recently came across some information regarding the dangers of Selective Serotonin Reuptake Inhibitors (SSRIs), such as Prozac, Zoloft and Paxil, and stimulants like Ritalin and Provigil. During office visits, Dr. Cheney shows patients the book Prozac Backlash: Overcoming the Dangers of Prozac, Zoloft, Paxil and Other Antidepressants by Joseph Glenmullen, M.D., a psychiatrist at Harvard Medical School. It includes endorsements from other Ivy League psychiatrists. Cheney calls the implications of this book "staggering."
When talking with patients, Cheney usually opens the book to a picture of a monkey's brain before and after it received a very potent SSRI. The "before" photo shows a dark background filled with fine white lines and white blobs, healthy neurons. The "after" photo is very dark, only a few white lines and blobs remain. Most of the brain cells had been "fried."
SSRIs and stimulants work by increasing the firing of neurons. While this often has great benefits in the short term, doctors are now realizing that long term use "fries" brain cells. The body views any neuron that fires excessively over time as damaged, and destroys it.
SSRIs and stimulants, taken over a period of 10 years or so, can lead to a loss of brain cells, causing neurodegenerative disorders. Many doctors have recently seen a sudden increase in patients with neurological symptoms, and most have been on Prozac, or a similar drug, for about 10 years. Cheney is seeing this in his own practice.
During office visits, Cheney also shows patients a copy of the May 22, 2000 issue of Newsweek with Michael J. Fox on the cover. It has an excellent article on Parkinson's Disease, a condition that involves a loss of neurons in the area associated with motor control. Parkinson's drugs stimulate the remaining neurons to "perform heroically," firing excessively. However, the article notes that while benefits are seen initially, neurological symptoms get much worse at the three to five-year point. Patients experience wild involuntary movements, etc. These drugs, though helpful in the short term, actually speed up the degenerative process.
What mechanisms are at work causing neurons to be "fried?" SSRIs are often prescribed for depression, which involves a lack of serotonin. Serotonin is a neurotransmitter, a chemical messenger. One neuron releases a burst of it into the intersynaptic cleft, (the gap between neurons). The serotonin is then taken up by special receptors in the adjacent neuron. Thus a message is sent from one neuron to another, with serotonin carrying the message across the gap. Excess serotonin is cleared away before a new message is sent. A "reuptake channel" in one neuron vacuums up the left over serotonin.
SSRIs are designed to address a lack of serotonin by blocking the reuptake channel from vacuuming up excess serotonin. While this allows more serotonin to connect with the receptors, often too much is left floating in the intersynaptic cleft. The only way the body can get rid of this excess serotonin is to oxidize it. Unfortunately, this turns it into a toxic compound that, over time, kills both the sending and receiving neurons.
Cheney stated, "What starts out as an attempt to increase serotonin and reduce symptoms ends up with the destruction of the serotonergic system itself. It takes about a decade, more in some, less in others.
Now when the serotonergic nerves are dead, you start getting these motor neuron problems, which is what we're seeing." Cheney commented, "You know what a lot of doctors (who do not understand CFIDS) are doing? They're saying 'Well, let's just give them an antidepressant'. And they are frying their (patients') brains and they don't even know it. In fact, a CFIDS patient on one of these drugs fries their brain even faster than a non-CFIDS person." (See the article on Klonopin for an explanation.)
Cheney went on to say, "The other way some people with CFIDS are going is stimulating the brain, using drugs like Ritalin or Provigil. They do the same thing - they fry the brain. They cause neurons to fire at lower stimulus by lowering the firing threshold. All stimulants are dangerous, especially over the long haul. I'm not saying that you might not find them useful in the short-term. But over the long term, the physiology demands that neurons that fire excessively be killed."
Cheney strongly urges anyone taking antidepressants or stimulants to read Glenmullen's book, which lists safe alternatives to SSRIs.
© 2002 Carol Sieverling. Reprinted with permission.
Related Cheney Article:
Dr. Paul Cheney Discusses the Benefits of Klonopin
This is some very good info, especially for anyone suffering from the effects of seizure activity or from the side effects of certain AD's.
Thank You, Thank You, Mikie, for all your hard work!
I've got to find tthat book! Pronto!!!!
I was talking about the Library here. Just click on Library in the strip above and do a search on Cheney. It will list his articles. I believe both these are on page 2 or 3 in the listings.
The advantage to going to the Library here instead of just highlighting off the posts is that you can click on a printer-friendly format in the Library to print these out.
There is no book, just articles. Good luck.
Separate names with a comma.