Gabapentin Withdrawal Horror
Posted , 180 users are following.
I want to start by giving an apology for my doubts towards patients who posted about problems with gabapentin withdrawal. How hard could it be? It has a short half life. It is not an opioid.
My plan was to write about my extremely painful and unexpected withdrawal experience after I felt better, but it has been FIFTEEN months.
I was on 1800-3600 mg /day for 20 years. My physician put me on a six day weaning schedule. The day I took my last dose my pain skyrocketed, but the pain has changed from low back to toes pain, to pain mostly to my anterior legs below my knees. Unfortunately, it is a very slow process. The internal nerve shaking that accompanies the pain is beyond annoying.
I often read patients on forums stating they have no problem with gabapentin. I did not think my problems were that terrible before I went off the drug. They all come with cautions and potential problems. I wish I had known of how difficult this drug was to discontinue before I had ever taken the first pill. I wish someone had warned me.
Good luck to everyone trying to discontinue gabapentin. I hope your experience is easier than mine.
18 likes, 1046 replies
heather55448 G.Allyn
Posted
Let me not get started on this damn drug. My doctor prescribed it to me in 2015 for lower back pain and at the time it wasnt a controlled substance, it is now a controlled 2 right up there with vicodin and with percocets now and its part of our opiod crisis. Anyways, I am a licensed pharmacy tech so i knew the dangers of opiod addiction and i wanted to avoid that so doc prescribed me this drug, I tapered myself off the highest dose of 3200 mg ( anything over 1800 mg doesnt work anyways) after a year and a half and i got myself down to 1800 and couldnt go any farther without having suicidal thoughts and amnesia in the middle of my living room. I had to get help so i went to a psychiatrist on base to see if they could help me wean off, hell, he tapered me off of 1800 mg in 5 days! I knew it was way too fast as you are to taper 100 mg a month, my poor mind and body starting detoxing and going through hell. For about a year and a half, i suffered every day, all day these symptoms..., nausea, diarrhea,, stomach pain, joint and muscle pain, stabbing migraines that moved location in my head every 3 days, blurred vision, double vision, 3-d vision for 5 months, pancreatitis, akathisia, memory loss, cognitive impairment, amnesia, dementia, manic episodes, severe depression, anger, aggression, panic attacks, rapid heart beat and palpitations, dizziness, loss of balance, dystonia, tardive dyskinesia, insomnia, trigeminal neuralgia,fatigue, pre-diabetes, high cholesterol, anxiety, sadness, hallucinations for the first couple of days coming off of it, ( my brain wouldn't shut down for 4 days and i was delirious from lack of sleep) i also had paranoia, lost muscle mass, and control of my bowels, everything felt like it was on fire at times, and i had severe muscle spasms all over my body, i had major sensitivity to touch and to hot and cold also for about a year before that let up and the list goes on and on. Drug half life of this drug is 5-7 hours, it quitting working for me after about 12 month of use and i felt like crap on it, thus why i wanted to get off for a better life style and the drug made me gain weight and crave carbs and sugar like you wouldn't believe, the water weight was also pretty bad while on it. I used essential oils such as sweet marjoram for the panic attacks, lavender for the anxiety and to help with muscle spasms and sleep, i used peppermint oil for the muscl spasms, headaches and nausea, and i didnt take any other drugs to help with the side effects of coming off because my nervous system needed healing and it was so sensitive to anything i put in my body. I was too scared to put any other medications due to side effects, i was already going through so much, Here i am a little over 2 years later, I am doing ok, and about 95% of the way there, doing better and better, but unfortunately, I am still suffering with pretty mad neuralgia now with restless leg syndrome, i still have muscle spasms and every day headaches but im praying that these are not permanent. It doesn't matter your dose or how long you've been on it, most people will struggle coming off of Gabapentin, ( aka Neurontin or Lyric- the big brother) It is a seizure med and it is made to shut down activity on the brain and body for seizures, so it when taking it it sort of "relaxes" everything, hence why there are issues when coming off of it, it somehow physiologically changes your body. I walked through this damn drug withdrawal and it was a B***H, i dont care what providers say or anyone else says.. I hear the " oh you havent been on this in a long time, so your issues arent from the gabapentin" i just have to laugh because they have no IDEA ( especially if they dont take it or never have) they cant see the nausea, headaches etc, its all internally and the psychological crap you have to go through coming off of this drug because while your on it, it shuts down your receptors for fight or flight etc, all hell breaks loose once you try to get your life back and gett off this drug. Anyways, sorry for the long rant, i DESPISE this drug because it is ruining lives as we speak and it needs to be taken off the market, Gabapentin only works for a while until it doesnt then we are left with the aftermath and the damage it causes. I pray that you dont have any lasting damage from this med..
MrModdy heather55448
Posted
Hi heather55448
We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.
If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.
Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.
If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.
Kindest regards
Patient
babs99203 heather55448
Posted
Oh Heather, your horror story is why I keep warning people about the drug, but also encouraging them that it WILL get better. As you know, that psychiatrist's ridiculous schedule threw you into PAWS, Prolonged Acute Withdrawal Syndrome. As you know, that can take years to get over. Please be careful with any alcohol, medications or even OTC drugs. I know people who had severe side effects if they used any of these, even in small doses after PAWS.
You have so much to share, I hope you'll continue to post either in this thread or start a new one. It's easy to lose track in this one, as it's so long. I was at 2700 mg 2.5 years ago due to shingles, and it's aftermath, down to 500. I take 8 weeks to taper, and even then, I have problems. But we can recover. You're a brave, strong woman.
michele51746 heather55448
Posted
Your story is my story. Every word of it. All 5 branches of the military has now BANNED this nasty crap they call medicine. January I had my one year anniversary of being off this drug. I only wish i could do more to help others. I have warned many. One person i know was prescribed this but chose not to take it for whatever reason. When he heard what i went through he was so glad he didnt fill the rx. Now he will warn others. Even if people dont seem interested in hearing our warnings, it may make a difference sometime in their future. Like you Im still at about 90-95%. Whenever I go through anything such trauma from a surgery, or rapid change in a different med dose, boom,,, the symptoms return. Fortunately they dont remain. God bless all who are suffering here and everywhere. The only thing that truly helped me was my faith. Although i had trouble focusing on a tv program, i had no trouble reading the Scriptures. My God sustained me daily. No doubt. Still does everyday. So I put my hope in God not in anyone else.
linda88918 heather55448
Posted
I can relate to so much you are saying! It is an evil drug! I've experienced much of the same things you've experienced and entered a psych hospital because I was feeling suicidal during withdrawal. I'm just thankful that 5 1/2 months after my last dose, my symptoms lessened enough that I could manage my life again. Unfortunately for me, I was re-traumatized by a very uninformed psychiatrist at the hospital that said my symptoms were imagined. (The drug was out of my system and withdrawal only lasts a few weeks, he continued to inform me -- while apparently having no exposure to the thousands of people who've posted how it has damaged their body, the damaging effects lasting months and years after the last dose.) I survived the Gabapentin withdrawal and him!! I still have issues, but at least I can enjoy my life now and assume the symptoms will continue to improve over time.
michele51746 linda88918
Posted
Strong woman. Glad you overcame this horror. Now you can survive anything!
babs99203 linda88918
Posted
Yes they will continue to improve. There may be setbacks, as for many taking any kind of drug or alcohol can make them pop up, but maybe not. I hope not for your sake, but I mention that so if it happens, you don't get too thrown by it. It will be temporary.
heather55448 michele51746
Posted
Michelle our stories are almost identical. The only thing that pretty much got me through it was Faith in Scripture. I remember God same keep your eyes on me and that’s pretty much the only thing that kept me moving forward and the faith in the hope that it was going to get better because my withdrawal was so long it took me about a year and a half coming off of a high dose before the symptoms let up. I am so glad that a lot of these military bases and doctors quit giving this site and drag out because everywhere I go awls I hear is that this person is taking gabapentin of this person is taking gabapentin and it just frustrates the hell out of me. I’m so glad that at least some providers are no longer prescribing it, I try to get the words out as much as possible to anybody that will listen that this is a Staten drug and they need to quit prescribing it I tell so many providers and doctors about this drug and the with drawl that I went through and that they really need to stop giving it out to people because they don’t know what they’re doing to him. Thank the good Lord has brought us both through it and he will continue to bring anybody going through with drawls from this horrible drug. God bless you have a great day
beth47873 heather55448
Posted
I for one, along with others, appreciate your candor. I think you are a strong person to endure through all of these Neuro-rotten induced issues. Your brain still might recover over time, so don't give up, It might surprise you that Gabapentin, gave me a movement disorder after the 2nd consecutive 300 mg dose. Even though my doctor was informed by phone, I should have had my husband take me to his office and shouted, "Look at what you did to me!" He wrote in my records that "She perceived that Neurontin made her hand tremor increase so she stopped taking it, and she's upset." Later he changed course, and told doctors that my psychological problem had become a physical problem. At one appointment with a Movement Disorders specialist, she brought a diagnostic leaflet titled, "What are Functional Movement Disorders?" She explained it by telling me, "Your movements are being caused by a psychological problem and if you stop thinking about your idea that Gabapentin caused this, they would go away." I didn't get mad, but I brought information from a Neurology book I bought on line. . She put the name of the Neurology Professor, Kapil D. Sethi in my records and said that his book claimed Gabapentin was one potential drug for causing movement disorders. So she had the gall to disagree with a "foreign" Neurology Professor, who teaches in Atlanta, Georgia. My faith also helps me endure.
linda88918 babs99203
Posted
Yes, Bab. I'm very aware of that. I'm quite an expert on this medication and its effects these days. I only said, "I assume" because I never like to set up expectations for myself. Some people never get total relief from all symptoms, but as long as I can enjoy my life, I'm not going to worry about it. I have had "flare ups," since I'm sensitive to things I didn't used to be, but I just deal with it. It has never been as bad as the intense withdrawal! But, thanks for the warning. It's always better to be over-prepared for things than to be blindsided!! Hope your recovery is going well.
heather55448 MrModdy
Posted
thank you but i never stated that i wanted to harm myself, i am doing well as of now. what i stated in my previous post was referencing while i was going through the drug induced suicidal thoughts back in 2016, i am fine but thank you for your concern.
heather55448 babs99203
Posted
thank you BABS99203
babs99203 heather55448
Posted
You're welcome Heather. I've learned that the moderator/bot here is very sensitive to a reference even remotely related to harming ourselves. So there are key words that I don't ever list in a post. I laughed one time as I got moderated and maybe it was a misspelled word, or something like that. Or maybe I said something like I'd K+@l to have a dog like that or whatever. You get what I'm saying.
It's good they do that, but sometimes we have NO idea why posts don't go through. For long posts, I've started copy/pasting them in case they get held up. Then I review them to see if something made Mr. Mod unhappy.
michele51746 heather55448
Posted
in a nutshell ... coming off opiods is a walk in the park compared to wding from gaba. opiods is very uncomfortable but its over in a week or two. gaba takes years to wean and then a couple of years after that is the nightmare.
michele51746 G.Allyn
Posted
Very kind words of encouragement bring healing too. Your kind words are very important.