Seizure Med for Pain???

Discussion in 'Fibromyalgia Main Forum' started by 1975jet, Sep 23, 2006.

  1. 1975jet

    1975jet New Member

    Hi all- I went to my reg. MD the other day- she wanted to put me on some kind of seizure med. for pain? Do you think I can remember the name of it??? But since it was so expensive she wrote me a script for Vicodin- lower dose-cause I told her, I don't want to feel like a Zombie- BUT the pain gets so unbearable I cry...

    Does anyone know what med, this would be?
  2. joanng

    joanng New Member

    I'm not sure if this is it but its expensive and I thought someone told me it was once used for seizures. I've used it for pain but it didn't help much.
  3. jmblknit

    jmblknit New Member

    neurontin is used for siezures and pain. some have good luck and some dont
  4. Beadlady

    Beadlady Member

    called--Gabapentin--much cheaper.

    I call it my "brain pill". Not so much for pain, but it helps me to function--especially out in the public where there is a lot going on--like shopping & work.

    I can tell if I don't take it.

    Tramadol (generic for Ultram) helps the pain too and I also take a low dose of Vicodin.
  5. fieldmouse

    fieldmouse New Member

    I was taking Lyrica but switched to neurontin cuz of the weight gain from lyrica. I switched back to the lyrica cuz the neurinton made me sick. I guess being over wieght is better than not being able to function. They are both kinda spendy. Maybe one of these is what your doc recomended to you.....Mick!
  6. Cromwell

    Cromwell New Member

    Most of the seizure meds are dual purpose and will work for pain and even bi polar/depression.

    However, be very careful with Lacmictal as it can cause a fatal rash in some. If you try it you have to be very closely monitored for this rash that can spread quickly to the throat and cause death.

    I know a few people who are on it and doing OK but they don't also have our dd.

    Garbatam(neurontin) made me feel as if I had had a stroke and did nothing for the pain.

    Honestly, this antibiotic is helping the pain more than anything else or else it is a coincidence I suddenly started doing better(zithromax).

    Love Anne
  7. Mikie

    Mikie Moderator

    You're probably better off with the Vicodin in the short term for you pain. Antiseizure meds, like Klonopin and Neurontin, do seem to interrupt pain signals to the brain, but it takes a while on them to get to this point.

    Many of us live in a constant state of slight seizure and these meds can really help with associated symptoms, like insomnia, sensory overload, tinnitus, anxiety, muscle spasms, and RLS. If smells, harsh lighting, and noise drive you nuts, you may well benefit from one of these meds. If you cannot sleep because you have racing brain, one of them might help.

    You can take pain meds for the pain and antiseizure meds for the other symptoms. Many of us do. Talk to the doc if you think an antiseizure med might help you. Be sure to weigh the potential risks, like physical tolerance and/or dependence, against the potential benefits. If you ever need to discontinue these meds, there may be withdrawal symptoms and it must be done very slowly.

    Love, Mikie
  8. 1975jet

    1975jet New Member

    Yes, I believe that was the name of it- now I remember Gaba something- she hasn't put me on it yet. So I will try the vicodin first- don't want to be on too many meds at once- I won't function at all.. Thanks everyone.....

    I am calling the Polio Clinic tomorrow and see if I can get in there for an evaluation(consultation) the doctor I had contaced awhile back said he would look at me for a minimal fee- it is all the tests that can be costly. Wish me luck- may take me awhile to get in- it is about 1-1/2 hours away- I have a driver...
    Be Well and thanks again - Hayley-I may have to come to you.. Janet
  9. Mikie

    Mikie Moderator

    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( 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.


    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.


    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."


    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."

    Love, Mikie
  10. 1975jet

    1975jet New Member

    Thanks everyone- you all are very,very knowledgeable people- I will ask her about the klonopin(sp) - I have seen alot of people are on this med.

    Be Well and again thanks(that is why I like this board alot of info and you get answers Very fast)
  11. makezmuzic

    makezmuzic New Member

    Hi Jet, sorry to hear you are in so much pain. I know what a bleep that is. I just started neurontin this month and I still can't tell if its working. I was on nortriptyline, but the weight was just too much.

    One thing I have noticed since I started the neurontin is that I seem to have little mini seizures when I'm first falling asleep. I find myself stiffen up for a couple of seconds. Mostly my legs, but also my ...diaphram..not stomach, but diaphram.

    HAve no idea if that s part of it. I know people who have said it makes them sleepy. Not me really. Motrin 800 knocks me out faster than neuro does. I hope you get relief soon Jet. LIving in pain is dismal.

  12. Summit

    Summit New Member

    A few months ago, my doc put me on Gabapentin. It is an antizeisure medication, which has been shown to help people with fibro pain etc. I have been taking it about 2 months, they say it takes 3 months to tell if it's working. I think it maybe helping one minute, then the next im not so dang sure. Seemed to at first, and helped with my mood too. Now, I dont know....I'll keep ya posted on that. Good luck
  13. Summit

    Summit New Member

    u mentioned loud noises, light etc. .....those are symptoms of fibro? Cause here I thought it was due to the concussion I got last summer (my horse slammed me into a post and I passed out) wow, I learn more and more about fibro....seems it's to blame for everything
  14. Mikie

    Mikie Moderator

    I could not tolerate noisy restaurants and forget about shopping in places like Wal-Mart. Then, I would cut my Klonopin in quarters and slip one of the pieces under my tongue before going in. If I found myself anxious or having sensory overload, I would take a piece of the Klonopin under my tongue. It takes only seconds to work. Doc and pharmacist said this was OK.

    Now, I am better overall and very seldom have to take the Klonopin during the day. I do take 1 mg. at bedtime so I can sleep. They changed my generic and the new one doesn't work as well. I'm trying the brand name tonight to see if it really does work better per Chaney.

    Sensory overload is common in us because seizure activity is common. Our illnesses are neurological as well as immunological. I suppose a head injury could cause sensory overload/neuron misfiring too but the Klonopin might help that. You could ask the doc.

    Love, Mikie

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