Gabapentin Horror

Linda E.
12
13181

After suffering PTSD in the late 1980s, I reluctantly accepted antidepressants. In time, I had resolved the trauma, but when I tried to stop the antidepressants (Prozac, and later Zoloft), I assumed my desperate feelings and “return” of depression were an indication I had an imbalance and needed those drugs. I didn’t understand I was experiencing withdrawal. (I was never told that for most people, psychiatric medications need to be tapered.)

When I changed from Zoloft to Effexor in 2002, it caused acid reflux that continued for a month after I took it on an empty stomach. I asked my psychiatrist for something that didn’t need to be taken with food. He suggested Lexapro.

That decision led to an adverse reaction and lots of mismanagement and poly-drugging to compensate for the adverse effects. Eventually, my body had been so abused by the drugs that I developed akathisia. I was speeding through my house, hurrying from one room to the next with no ability to slow down. That’s when my new psychiatrist prescribed Neurontin (gabapentin).

The drug worked within an hour to calm me down. I was eventually able to stabilize, but now I was on two medications: Neurontin and amitriptyline, a tricyclic antidepressant. Since the drug was not explained to me and the only thing I knew about it was that it was an anti-epileptic, I tried to discontinue it. (I didn’t have epilepsy and didn’t feel I needed it.) When my attempts to discontinue caused difficult symptoms, I returned to the previous dose of 800 mg, three times a day, along with the antidepressant.

But I didn’t understand why I now had a slight tremor that continued after the antidepressant debacle. The doctor increased the dose of Neurontin to 4800 mg and even added Lyrica (gabapentin’s “big sister”—also classified as a gabapentinoid with similar makeup) to see if the agitated tremor would dissipate. It didn’t.

He decided that amitriptyline was causing the tremor, so he advised me to drop from 100 mg to 0 in one month. I was surprised at his recommendation since I didn’t believe I could get off of antidepressants, but after trying the first two drops with no problems, even after four months, I decided to follow through with the rest of his tapering advice and get off the last 50 mg in two weeks. Though I did put a longer interval between the tapering doses than he recommended, I still tapered much too fast. When I was again devastated by withdrawal, the doctor made more choices that caused more severe reactions, but eventually led to him advising me to cold turkey the 4800 mg of Neurontin.

Though I questioned him since I’d had trouble reducing before, he assured me that was the thing to do. I only slept 30 minutes in the next 60 hours. Eventually, I slept one or two hours per night and paced the rest of the time. I also found myself hearing “conversations,” which was my imagination’s interpretation whenever the air conditioning blew through the vents.

I experienced the emergence of hot flashes. I would feel the anxiety build and about the time it peaked, I would break out in a full sweat. The hot flashes were coming like labor pains, about every 10 minutes, all day and all night.

After seven weeks, when the doctor saw how anxious and “busy” I had become—especially when I was pacing rather than sitting for my appointment, he reinstated the Neurontin at 800mg 3x/day. Things did mostly resolve after reinstating, but though less frequent, the hot flashes continued. I noticed that I felt much better after only an hour or two, though the second day I had an upsurge in agitation and some slight burning. It wasn’t bad and I tolerated it much better than I had been tolerating things a few days earlier.

After that fiasco, I found a pharmacologist who listened to my reported side effects and helped me taper off of what was now the generic form of Neurontin (gabapentin) over several years. Though it had accomplished its purpose of calming me down at the appropriate time and the only negative effect I noticed had been softer bowel movements and slight difficulty retrieving words—which at that time I just attributed to aging—I knew I didn’t need it anymore.

Gabapentin, Again

In 2015 I was totally off of gabapentin and had tapered to a low dose (25mg—a nontherapeutic dose) of Zoloft that I also had hopes of getting off in time. Life was going well, I was enjoying a new job, and my husband and I had just moved into a newly-built home.

After forgetting my pills for a few days on vacation and again when visiting a relative, my body started to react. To make a long story short, I ended up discontinuing Zoloft and hoped I could handle getting off of such a low dose. What I didn’t know was that the lower doses of psychiatric medications have the most efficacy, so have to be tapered the slowest. I should have taken months to taper off of 25mg of Zoloft.

Again, I suffered withdrawal. The desperate feelings were becoming difficult and since my wonderful doctor/pharmacologist had died of cancer, I contacted his replacement about any ideas for minimizing the symptoms. He chose gabapentin to provide relief. I was reluctant to restart it since I knew how hard it was to get off, so I asked that he keep the dose lower than my previous doctor—only 200mg 3x/day, or at most 300mg 3x/day. He consented and put me on the higher of my requested doses while also assuring me that I could increase the dose at any time if desired.

I didn’t realize that getting on gabapentin for the third time was not a good choice. My body had been “kindled” and I was in for real trouble, but I had no idea.

Gabapentin did not seem to provide much relief. On the contrary, I started having difficulty breathing. But I thought that symptom might be related to the Zoloft withdrawal, so I forced myself to deal with it as I sighed numerous times each hour. I hoped that things would improve soon. After plodding through for two months, I decided I needed more help, so I contacted my doctor again, asking to add clonazepam (Klonopin).

By then, clonazepam was a controlled substance (though I didn’t know that), so as he agreed to provide the prescription, he advised I find a local doctor to monitor me since he was 2.5 hours away. Getting in to see a new psychiatrist took time—my scheduled appointment was eight weeks later—so I asked my general practitioner about starting back on an antidepressant.

But by then, and after the polydrugging in previous years, my body had become ultra-sensitive to all antidepressants, especially at start-up, even though I chose amitriptyline again, which came in very small quantities that I thought I could gradually build up. I ended up discontinuing it after only 18 days because of severe burning in my arms. That stoppage led to another adverse reaction (even though I never took more than 10 mg in that short timeframe). Five days after stopping amitriptyline, my body became “revved up” as it had in 2004. I was pacing nonstop and still having trouble breathing.

With my doctor convincing me gabapentin was a safe drug, and knowing that the solution to the pacing in 2004 had been 800mg 3x/day, I decided to increase my dose. I still didn’t want to take an exorbitant amount, however, so I lessened the 2004 dosage and chose to take a 600 mg dose. I knew from previous experience that if I was going to get any side effects, they would appear on the second day after the increase, so I prepared myself for what I hoped wouldn’t be anything too bad.

Then “All Hell Broke Loose”   

But my naivete became apparent when the next day “all hell broke loose.” I had a “reverse reaction” (meaning that gabapentin actually CAUSED the symptoms it is intended to treat). My skin began to burn so intensely, I felt like someone had poured acid all over my entire body! My heart was racing and I was dealing with other adverse symptoms. I was deathly afraid because I knew that I now had to get off of this medication and it was not an easy one to stop.

Though my successful taper off of gabapentin from a higher dose had occurred over a period of years, I now planned a 3-week taper to get off as quickly as I felt I could. I used clonazepam to help relieve the burning—which made it more tolerable.

Coincidentally, my first appointment with the new psychiatrist had been moved up and was scheduled for the very next day. I was relieved since I thought he might have some answers and be able to offer help. But I had a lot to learn about the poor training of doctors in regard to gabapentin.

When I met with Dr. F the next day, he was convinced that my symptoms were a result of taking clonazepam and would not believe my account of gabapentin causing my adverse reactions. He told me I could stay on gabapentin as long as I wanted but set up a taper off clonazepam.

I followed his directions to get off clonazepam even though I’d used it for less than 3 weeks. I realize getting off the benzo was probably a good thing now that I’m more educated on that drug, but I was left with no effective relief from my incessant burning and anxiety. Dr. F praised me for how easily I discontinued clonazepam. (I was off clonazepam in less than two weeks.)

But every time I tapered down on gabapentin, new symptoms appeared, and the burning spread. Now, not only were my limbs and chest burning, but my neck, face, hands, and feet were affected. After an emergency room visit to check out why my heart was beating wildly and my airway felt constricted, I was convinced by the ER doctor to stop my taper (which I’d gotten down to 100mg 3x/day).

As is true for most other sufferers of gabapentin adverse reactions and withdrawal, tests showed nothing, and after receiving a muscle relaxant and some Benadryl, I was sent home. Dr. F and his nurses were convinced that once off the gabapentin (and already off the benzo), my symptoms would improve dramatically. They did not.

I endured anxiety, sweating, heart palpitations, panic attacks, akathisia (I paced constantly), digestive issues (and severe abdominal pain), insomnia, breathing difficulties (I felt like I had a vise around my chest cinched up tightly while breathing through a narrow straw), nerve excitement (burning, itching, tingling, etc). My mouth, esophagus, throat, and tongue burned. I had a super-sensitive startle response and terrible fear. My sense of smell was so profound, the scent of a light perfume was abhorrent! My hearing was also over-sensitized. The sound of a lawnmower was more than I wanted to tolerate, but even gentle music that would have typically been soothing was just another very stressful irritation.

Living was unbearable. I could hardly stand to get through 60 seconds, let alone an hour or a day. Every 90-120 minutes at night, electric shocks jolted me awake accompanied by an intense hot flash and surge in skin burning sensation. Needless to say, I was terrified.

My husband paid for ladies to come over to my house to stay with me. They adjusted my ice packs to give a hint of relief to the incessant skin burning. I lost weight. I missed my son’s wedding. I couldn’t go anywhere or be involved in anything except trying to survive.

This went on for months until I finally attempted suicide. It is a miracle I survived.

Doctors Told Me I Was “Delusional”

When I awoke and realized that I would still be faced with the suffering, I was very distraught. But the suicide attempt amazingly helped some things. I’m not sure if it was because of the blood transfusion I was given that could have helped flush my system, but a few symptoms finally let up. I was no longer jolted awake at night with electric shocks and I did not have the compulsion to pace. I also could eat a little bit without as much nausea and stress to my digestive system. And I no longer had a “pins and needles” feeling in my feet.

After my recovery from the attempt, I was transferred to a mental health hospital. But I was now to be faced with a new trauma. I was continually told my symptoms could not possibly be from gabapentin since it would have been long out of my system by then. (It had been four months since its discontinuation.) I was diagnosed as severely depressed and was threatened with being compelled to take antidepressants. Out of fear of being held down and forced to take the medication, I conceded to take Cymbalta, but when I reported the burning surging even more, I was told I was delusional.

I decided to accept a prescription of BuSpar, but a weird thing started to happen. My feet started to go numb. Each time I took another pill, the numbness incorporated more of my foot and started to move up my leg. I had not anticipated that at all and was discouraged since I really had hoped that med might give me some relief. But my doctor was now more convinced than ever that I was a hypochondriac.

She became so angry with my reporting of symptoms, Dr. P diagnosed me with cluster B personality disorder. (Cluster B includes Borderline, Histrionic, Antisocial, and Narcissistic personality disorders. The ironic thing is that the heartless physician displayed several of those very traits.) She also discontinued the antidepressant medication even though I begged her not to since I had decided to stick out the symptoms in hopes the med would work in time. I also knew my body wouldn’t tolerate more stops and starts of psych meds without more adverse reactions. (She did that to me two times—the second time with Remeron).

I was transferred to a hospital closer to my home, but the medical staff there were just as uninformed about gabapentin. I had already educated myself and understood a little about gabapentin withdrawal, but I was totally disregarded. They kept trying to “teach” me about how depression can cause people to imagine physical symptoms. I agreed to take an antidepressant, but I knew that it had always taken 7 weeks for any antidepressant I’d ever taken to work. I did again get increased burning in my feet, but it was tolerable.

But something amazing happened about two weeks into my stay at the second hospital (and over 5 months since my last gabapentin pill). Though I still had the burning, hot flashes, and anxiety, they were becoming manageable. My breathing was improving. The withdrawal was easing up!

However, the doctor did not want to release me. He claimed that despite my “mood” improving, I was still “imagining” a skin burning sensation—though I reported it was now tolerable. My husband had to intervene before I could get out.

I still have sensitivities to caffeine, sugar, and even a vitamin/supplement I’d taken for several years as prescribed by my optometrist to help prevent macular degeneration, I am now able to enjoy my life again. The hot flashes continue even 13 years after the 2007 gabapentin cold turkey, but I can deal with them. I had a sensitivity to the sun that lasted for about 1.5 years, and the skin burning sensation gradually faded to nothing after about two years off gabapentin.

Gabapentin: The Facts

This is what I have since learned about the drug: Stanford University did a study on gabapentin in 2009 and found that it prevents the formation of new synapses in the brain. Many who take it long-term eventually develop cognitive impairment and short-term memory loss. Gabapentin affects GABA (gamma-aminobutyric acid—a “calming” element) in the body. When taking the drug, one’s body will adjust to the artificially induced GABA and start to produce less of its own. (That fact is similar to benzodiazepines except that gabapentin affects GABA through calcium receptors rather than GABA receptors.)

Though not technically addictive, dependency can happen very quickly. If taken incorrectly, stopped abruptly, or tapered too quickly or the wrong way (or if one has developed a tolerance), before the body can rebuild GABA, lots of “uncalm” things can happen (insomnia, anxiety, sweating, heart palpitations, panic attacks, muscle tightness & pain, twitching, akathisia, digestive issues, breathing difficulties, nerve excitement—burning, itching, tingling, numbness, etc.) because there is not enough naturally produced GABA available.

In my case, I had built up a tolerance—called “kindling”—to the drug through going off and on several times. It takes much longer than most people expect for the body to rebuild GABA, which is why a slow taper off is so important. Gabapentin has a half-life of five to seven hours and should be taken three or four times per day in equal amounts. People who take it once or twice per day can develop inter-dose withdrawal over time, and that is when negative effects often start to appear. (Also, many report teeth crumbling and loss from gabapentin, among many other adverse reactions or events.) It can take a while for the body to reset after discontinuing the drug—especially if not done properly.

Dr. Heather Ashton developed a method for tapering psychopharmaceuticals approximately two decades ago. Though her work was mainly with benzodiazepine users, her methods have been found to be the safest for all psych drugs. But I am amazed at how many doctors do not follow her advice. Most typically recommend a too-fast taper or even a cold turkey. The rule of thumb on most gabapentin sites is no more than a 10% drop every two weeks or more. When one gets to the lower doses, the drug has more efficacy, so many only taper 5%. Those who taper correctly the first time and never reinstate gabapentin have the best long-term results.

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

12 COMMENTS

  1. The solution is always more drugs. Develop a new symptom while taking a drug and you get another drug. One antidepressant doesn’t work so they try another one with the same supposed mechanism of action. When you go off the drugs withdrawal is used as evidence that you need more drugs when it really is proof the drugs harmed you. This type of behavior is what drug cartels do.
    I’m currently going through antipsychotic withdrawal (I was coerced on it with an injection). The first month and a half of tapering was fine but I went down another level. This drop and withdrawal paradoxically has worsened my akinesia (restlessness, agitation etc). I tried Benadryl (anticholigeneric) because it is supposed to help with akinesia but I found it worsened my akinesia while making me drowsy. I’m of the theory that all the benefit of anticholgentics for akinesia is due to active placebo effect and sedation. A study found B6 helps with akinesia so I’m eating lots of peas, spinach, and bananas.
    I remind myself that withdrawal does even if very slowly get better over time. That withdrawal is evidence the drug does harm. That using the drugs only worsens my life even if I suffer withdrawal. But I can’t shake the fear that the drug induced damage will be with me forever.

  2. Thanks Linda,

    You’ve really been through the wringer – but you made it!

    You had to figure it out for yourself. I remember a doctor friend of mine telling me that these drugs are one of the most dangerous drugs a person can take (we were discussing Ketogenic diet and epilepsy).

    This article is very informative and very helpful.

  3. Thanks Linda.
    Since neither psychiatry or big pharma or even doctors have “drug knowledge”, we cannot rely on them for information.
    That is why the availability of user information is so beneficial.
    Not so long ago, a guy with a script pad simply said that everything you experience is exaggerated.
    Now it has become frustrating for the scripters, because the evidence is against them and their drugs and the only thing left in their arsenal is to get the patient alone with a bunch of them, and harass us that way.
    But even that tactic is becoming known and I believe more lawyers will eventually be interested in how to make more money.
    Perhaps one day lawyers will beg for a job.

  4. Thank you so much for sharing your story. Every time I read one such as yours at MiA, I feel great compassion and also anger / frustration that people are so gravely harmed by the doctors and professions that are supposed to heal. Your story mirrors my own in many ways, especially as relates to more drugs being piled on to deal with side effects of original drug. The drugs caused so many more issues and horrors than anything I was dealing with before being put on them. I am so sorry for all that you have been through and glad to hear that you are healing.

  5. First of all, 4800mg is way over the maximum daily dose, which is 3600 in divided doses. So, whoever put you on that was giving you a dose that was much too high. Secondly, it calmed you down because one of the main side effects of neurontin is drowsiness. Yes, side effects can also include tripping over words and some memory problems. These are all listed under “common side effects”, and I am sure included in the handout that came with the pills when you received them.

    All drugs have side effects and they are prescribed because generally the benefits outweigh the drawbacks or side effects.
    I have been on neurontin for 5 years due to nerve pain from a stroke. I am a relatively young woman (early 60’s), and I can tell you that I have had to taper up over the years due to developing a natural tolerance.

    My final thought is that I would not be able to stop crying or walk if it were not for neurontin. So, don’t bash a drug that benefits a lot of people. Doctors prescribe, but you also have a responsibility to read about the drugs you elect to take, and to read about the benefits and the possible side effects.

  6. Thank you so much for sharing your story Linda. My mum had the same zapping from Paxil and has recently used Gabapentin for various reasons, so this article is a real and direct help, for so many more reasons than just that though.

    The effects of memory loss and cognitive impairment are so subtle… we blame things… we dissociate from it and blow it off. By the very nature of experiencing it we disregard or forget its symptoms and impacts. If there is one thing that is the most under reported, acknowledged and identified in terms of side effects, i would say that is it although it can be a lot easier to deal with in some cases than other side effects. I would venture to guess as a culture we would be much more productive and even good willed if impacts to cognition were taken more seriously and measured in a stricter manner.

    Most doctors are self important dirtbags as well, unopen to learning and accepting that inevitably the ideas of others will be much better than their own. So they value their own thoughts and opinions above all others, let alone the patients that know themselves far greater than a doctor could ever hope to.

    I hope you feel better and find peace, best wishes.

    • Bekki,

      I believe Gabapentin is indicated for Neurological pain, seizures, and convulsions. Gabapentin is not indicated as a psych drug, however since it slows neurological activity doctors are using it for that. Peter Gotzsche’s book ‘Deadly Medicines and Organized Crime’ details how rampant the off label use of drugs has become. So while in your case it may be being used correctly… if it is being used as a psych drug it means it has not been tested for such use and has no scientific basis for that type of use, so it is simply doctors experimenting on their patients.

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