Klonapin necessary to sleep

Discussion in 'Fibromyalgia Main Forum' started by chris350, Nov 2, 2006.

  1. chris350

    chris350 New Member

    Hey Guys,

    I take Klonapin at night b/c my legs (now body) jerks as I am trying to go to sleep. I take 4mg at night. My doctor refuses to add 1 or 2 mg to this so I will sleep better. Anyone else take Klonapin?
  2. suz45

    suz45 New Member

    Chris:

    Hi I tahe Klonopin to control a seizure disorder 2mg am and 2mg at night to stop noctunal seizures.. I am very familiar on both a personal and professional level with this med, 4 mg at one dosage is a moderate to high dose. Have you talked to your doctor about other meds as Klonopin is for seizures, myoclonus, and an anti anxiety medication. He is probably being cautious. There may be other meds you can use for your legs that may be more effective. Talk to him/her.

    Hope you find relief soon.

    Suz45
  3. for the same reason. Severe limb/torso/body jerks. I previously was on 2mg/day and then 3mg a day, 1mg 3x's a day... THEN dr's kept increasing it for every problem I had. I mean, a surgeon ORDERED me to go to the ER once, 3 days after surgery, for severe nausea, shortness of breath, dizziness (get up and CRASH into walls/doorframes!), rapid heart rate.

    His concern was possible blood clot in the lung, which could happen after the procedure I had, & 2 of those symptoms matched. He wanted me to have a CT scan.

    After sitting in the ER over 7 hrs!!! and arguing with nurses & 1 doctor, trying to leave against medical advice (AMA)---

    The doctor came in, around 9pm, I said, "if I DID have a clot in my lung, I'd be DEAD by NOW anyways!!" (I had to send my sister home for my post-surgery pain meds, argh!)

    Once the dr saw "clonazepam" on my chart----instantly. "take more klonopin." increase it to 3.5mg. They DID "humor me" & do the CT scan, even when I told them, I DON'T WANT TO BE HERE worse then U don't want me HERE! I was ordered to come here by a surgeon! I still got the 'look' and "eat more klonopin"

    I'd had it at that point. Being treated like that, when I was not even ON IT for anxiety/depression. Even if I had been, dr.s have NO RIGHT to just do that for EVERY single problem..

    So, I tried to go off it.....WOW! I lost my mind, didn't sleep, worst body pain I ever had--and that was 2-3 wks into it,

    Now my pain clinic doctor put me back on it, after Lyrica got me jerking & twitching all over the place (Effexor, Paxil, & Remeron did the same! and it doesn't go away, it's permanent. Also on heart med thx to Effexor)..

    I'm only on 1.5mg though, it does need to be increased now, probably 6 months later, for the jerking, but, it has never helped me sleep unfortunately.

    I've been put on Ambien, Lunesta 3mg, etc they don't work either. I just have chronic insomnia, that has gotten to be year round, instead of just my winter flares.

    Good luck to you, I hope you can find something...more related to sleep meds, that can help.

    I DO have a friend with MS, who takes 4 or 5 mgs, he's been on it for many many years, he's in his 60's. It's for his anxiety & panic attacks though...

    I agree 4mg is a pretty high dose to take at one time, but, definitely not judging you, or your doctor, not at all. But, if it's not working, maybe time to try something else, or a combination..

    Best of luck to you.

    Laura
  4. chris350

    chris350 New Member

    Thanks all for your response. I have run out of the Med before time to get refilled and tried to do w/out it. I can not sleep and I feel horrible so I guess I am physically addicted to the med. I would give anything to find an alternative. I have tried everything natural even the soap under the sheet with no help at all.

    God Bless and Thanks to all!
  5. Personally, for ME, I'm wondering, & kind of wishing, my docs would try a MUSCLE RELAXER for the twitching & jerking, but, I'm ok with staying on the clonazepam too..but, while, as long as they increase the dose as needed, I don't jerk, I do still have (just here lately) horrible cramping/spasming again in my feet & calf muscles, now shoulders & neck---love allll the additional pain winter brings out, that you almost* forget about in late spring/summer.

    I always think I couldn't hurt more than I do....then about September or so, rolls around, and my thoughts are frequently "OMG! I HURT SO BAD!!!"

    Have you then, tried ambien, or sonata, or Lunesta for sleep (even in *addition* to the klonopin?) They certainly haven't worked for me, but, I swear to you, I have NOT metabolized, or reacted the same to meds every since my gallbladder was removed 10-2000.

    My mother would tell you the same for her. she has fibro, is a endometrial cancer survivor of 11 yrs, has diabetes & diverticulitis. She had her gb removed SIX weeks before I did. LOL Talk about "like mother like daughter"

    She is not quite as bad as I am though, most meds don't work well for her either, but, pain meds (she hardly takes tylenol, though, so the ocasional Darvocet, or LOW dose Lortab) will knock her goofy & absolutely sick. Not me.

    Hardly ANYTHING works for me, but I certainly get the "rare" side effects from tons of them. Some side effects, I get told "its not the med" when I know it IS. I look it up online, or in the physicians desk reference...sure enough, under "rare but possible side effects" would be what I'd be having.

    A prime example, is before my gallbladder surgery, Phenergan-I was on it round the clock for vomiting, 1 pill could* knock me on my butt for 14-18hrs, after surgery--NOTHING. it never did control nausea, but, I was still put on 25-50mgs every 4 hrs, and wouldn't be the slightest bit groggy. Another is benadryll...while it will* help allergic itching. Doesn't make me sleepy at ALL now. Flexeril---doesn't work at all for *anything* etc..

    It really stinks. I just have a MAJOR tolerence for meds now, many do nothing. Anti-convulsants, in high doses (nerve pain) will help in sleep at times.

    Provigil, I was put on that cpl wks ago, dr was thinking, "provigil(200mg) in the day, then Lunesta at night" to get a sleep cycle. My 4th day on Provigil (side effects) and I fell asleep 2hrs after I took it.

    I take Lunesta, stay awake for days. Maybe I should switch the order I take them LOL.

    Best of luck to ya, hope you can figure something out. Let ME know, lol. Not having much luck either.

    Laura M

  6. Anita B.

    Anita B. New Member

    You might consider adding 200 mg of 5-HTP at night to take along with the Klonapin. That might help you to sleep better. worth a try, anyway. You can get 5-HTP at a health food store and it may also be available from the store at this website.
  7. Carol66

    Carol66 New Member

    I am back on it again! I was two years ago and felt really dizzy and I was taken off it. Now a new DR has put me back on it. I am feeling really high! I do not drink and have NEVER taken drugs but I am fying now :)

    It helps my sleep and a little on the FIBRO but I am on so many drugs. My anexity is off the charts!

    Good Luck! I am filling for SSD and I am waiting to hear from my second time, I am sure I will be turned down!
  8. LAMSCer

    LAMSCer New Member

    Chris - please be careful about stopping Klonopin suddenly for any reason, whether it's because you ran out or decide you want to go off of the drug. Stopping suddenly can cause seizures, heart attack and/or disorientation and bizarrre behaviour that would be probably be misdiagnosed as a mental disorder if you ended up in an emergency room and weren't able to tell the doctors you were going through withdrawal from Klonopin. Those are worst case scenario problems. But going off of Klonopin, Valium or Xanax (they're all benzodiazapams) suddenly is dangerous and will make you feel extremely ill.

    As for your dosage, 4mg at night sounds kind of strange. Klonopin isn't a medication for sleep. It's an anti-seizure and anti-anxiety medication and it is addictive. If you decide you want to stop taking it, you have to taper off VERY SLOWLY to keep withdrawal symptoms to a minimum!

    I've been on Klonopin for about 12 years now and it's been a godsend in helping to keep my central nervous symptoms caused by chronic fatigue and chemical hypersensitivities somewhat under control. I take .5 mgs 3 times per day - one in the am, one in the afternoon and one in the evening. Oddly enough, people with CFS usually have MORE energy when they take Klonopin than people without CFS who take it for seizures or anxiety attacks.

    Please don't go off of Klonopin suddenly. It sounds as if you need to talk to your doctor about your dosage and when you take it. I've never heard of anybody taking 4mgs at night only. It is almost always taken in lower dosages spread throughout the day.

    And again, it's not a sleep medication. I understand why your doctor would put you on Klonopin to help with the body jerks (central nervous system symptoms) but not why he would think it would help you sleep.

    Please talk to your doctor as soon as you can. [This Message was Edited on 11/07/2006][This Message was Edited on 11/07/2006]
  9. Gothbubbles

    Gothbubbles New Member

    Klonapin
    Wow, I've been hearing a lot about this drug lately. It's been used to treat CFS, but I read about it also in my myclonis research.

    I started having severe spasms/jerks/tremors that sound like myclonus 5 days ago and I've been treating it with motrin and hot baths (it is only a temp fix). My back and neck feel like steel rods at the point.

    It sounds like some of you have expereinced this too? What is your background/reason you're taking Klonapin?

    This thread has been a great help to me. Once I'm back from my vacation I'm going to talk to my doc about Klonapin and MRIs and myclonis.
  10. chris350

    chris350 New Member

    My reason for taking Klonapin originated with trouble getting to sleep due to my legs jerking. As I would be falling asleep my leggs would jerk and wake me up. Now if I don't take it or lay down for a nap my entire body will jerk (not just legs) making it impossible to sleep.

    This board is so great to "bounce" questions off so many intelligent people. Our doctors do not know everything. We are more like to find comfort from each other's variou experiences. Thanks to all that take the time to answer.
  11. Mikie

    Mikie Moderator

    I haven't posted this article in quite a while but it's interesting. Dr. Cheney believes we suffer seizure activity in our brains and that explains our symptoms and why Klonopin helps. I take 1 mg. every night for sleep. It has been a God send for me. I get 7-8 hrs. of restful sleep and wake alert.

    I used to take very small amts. under my tongue during the day for anxiety/panic attacks and sensory overload but I now seldom need it. It has helped with pain, racing brain, muscle spasms, and tinnitus too.

    Love, Mikie

    *****************************************

    Dr. Paul Cheney Discusses the Benefits of Klonopin
    by Carol Sieverling
    ChronicFatigue.com

    10-12-2001


    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."






  12. Tigger57

    Tigger57 New Member

    I take 1mg every night and I still have the "body jerks". It just started about a month or so ago and I hate it.

    I'm usually very hard to medicate, but 4mg would have me on my butt.

    I wish I could stop those jerks though.

    Tigger
  13. PVLady

    PVLady New Member

    I have tried many different sleeping pills and surprisingly, recently I tried Lunesta and it worked. I did not want to try Lunesta because I could not believe it would work after me alternating Ambien and Restoril for months. Restoril is similar to Klonopin.

    I was taking alot of Ambien/Restoril to get to sleep.

    For a while I was also having the jerking of my legs, etc. I believe I was soooo tired, and not sleeping, somehow that was the cause.

    Now that I am getting proper sleep I no longer have the jerking problem.

    You might want to ask about Lunesta just to try. I know it is scary to try new meds because you think you will be awake all night if they don't work. I decided when I tried Lunesta, if I did not sleep I would add the "over the counter" sleep aid (which is like Benadryl).

    One thing about Lunesta, according to the literature, you never develop tolerance.

    Lastly, I agree, don't ever stop Klonopin cold. My cousin, a psychologist, told me if you don't taper off it make your body feel like crumbling paper.


    [This Message was Edited on 11/17/2006]
  14. mezombie

    mezombie Member

    Chris: You mentioned your legs are jerking and keeping you awake. Have you ever had a sleep study done? I did, and it showed I have Restless Legs Syndrome. I was already taking 1mg of Klonopin at bedtime.

    My doctor added Mirapex, and I think it's really making a difference. It is often prescribed for RLS. I sleep quite well now, and wake up feeling refreshed.