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.
Aw, maan.. I was on 2400 mg for 6 weeks for nerve pain after a snowboard accident. Quit 6 months ago and I feel these pills ruined my life.
A few years back I was on 60-100 mg oxycontin a day for half a year after a car accident. When I quit that cold turkey I suffered horrible withdrawals: Diarrhea, vomiting and chills for a week and a little down the next week as well. But these pills are just so much worse for me. Horrible physical and psychological symptoms for weeks and deep deep depression with no end in sight..
Good luck to you too! I just hope it´s possible to become normal again after this s**t
Wow! Six days, twenty years and up ton3600 mg per day. My Prayers are with You. Please take care trying to withdrawal that amount! I can't imagine! Please keep us updated. Take care! Sherri
Thanks for posting. Just to let you know that you are not alone. When doctors tell you to stop taking a drug, they should be made to look at the withdrawal effects. Most have no idea what a person will experience. I have been trying to come off gabapentin for many months. It is horrible. I was trying to persevere. I got down to 100 twice but ended up going back higher both times because the withdrawal effects were so debilitating. My skin crawls, my arms and face feel like they're burning and tingling. I wake up every morning with waves and waves of hot flashes even though I am on Hormone replacement therapy. I went back up to 300 and have been there for 6 weeks and still I am suffering and wondering if I should go back up to 600. I understand your pain, you are not alone. I was put on gabapentin for headaches but it didn't help. Now the headaches are still bad but on top of that I am dealing with these awful withdrawal effects. Wish I had never started this drug. I wasn't on a high dose, only 900 but obviously it was enough to get my brain addicted to it. From what I have read, you should only decrease by 100 every 4 weeks. I wish I had known that when I first tried to get off this drug.
I was on 300mg X 3 per day (900 total) for 11 years for deep nerve pain related to a fall which led to a C5-7 cervical fusion. Gabapentin is a very strange drug which is extremely difficult to discontinue. I was able to cut back to 500 mg over a 6 month period with limited issues. When I tried to go to 400 mg I had to go to the pain specialist for help. I was unable to sleep for 4-5 days at a time. I felt like a total zombie with severe depression and constant fatigue. The doctor had me use a drug called trazadone 100mg at bedtime with 15mg of melatonin. After two weeks I was able to cut back the trazadone to 50mg and 15mg of melatonin. At the one month mark I cut back the melatonin to 10mg. Two weeks later I dropped the melatonin by another 5mg. I'm now fine at taking 100mg of Gabapentin mid-day, 300mg at bedtime. The change in my mood and personality has been noticed by friends and family. I feel so much lighter as if a giant boulder has been removed from my body.
After 11 surgeries in 10 years which were all related to the fall, I was able to withdraw from Fentynl patches, oxycontin, soma and suboxone with very little difficulty. The withdrawal from Gabapentin was far worse than any of the other drugs. I plan to try to cut back to 300mg in a few months. I must say that just the thought is terrifying. I was never warned or informed about the horrors of getting off of Gabapentin.
Search for a pain specialist that listens to your concerns and is "on your side" when trying to get off this awful drug. It may be wonderful for some patients but be very careful when higher doses are recommended.
I can honestly say that there are worse drugs than opioids and Gabapentin certainly is one of them!
Thanks! Terry, I agree with you. I think gabapentin causes far more problems than people realize. My blame is on the drug company that started the whole off-label use in the mid-1990's. Shame on the money grubbers.
I wonder how many patients started taking opioids because gabapetin increased their nerve pain. I think gabapentin, at least in a percentage of cases, has added to the opioid crisis. It certainly has made patients suffer.
Every single day for the last 15 months I have kicked myself. Why did I do this to myself? Any pain relief benefits were negligible from the beginning. Unfortunately, I had a work related accident and I was made to feel "uncooperative" if I did not follow all suggested medical interventions.
What I didn't mention in the beginning is I am an RN. Why the heck didn't I question this more? As a group nurses dislike being the "pain in the a$$" patient and are far too compliant. You would never believe after what I have been through, that I supposedly have half a brain in my head. I worked at the #1 cardio-thoracic ICU in the country. Did I leave my brain at home when I walked in the doctor's office?
At least I stuck to my guns. My current physician disagreed with my decision to go off this drug.
I wonder how much evidence it will take before physicians stop prescribing this medication in such huge numbers and when they will understand patients need a slower tapering schedule. I guess the old physician saying, that a patient is a liar until proven otherwise, still stands.
Thank you for all of your advice.
Me too! I wish I had never started on gabapentin. My physician stated it "changes" nerve endings. I think it really means gabapentin damages the nerve endings. What ever happened to *first do no harm*?
As for the idea of going back on gabapentin- I completely understand. I did give that a try with a tiny dose after being off gabapentin for almost a year. I did not help at all and I felt I was in a terrible fog. It seemed dangerous to be so out of it. This time I was smart enough to go off immediately.
I do not think there would be any circumstances to convince me to take even one more gabapentin pill. This drug is a misery from start to long recovery.
Take care. I appreciate hearing from you.
Thank you for your kind prayers. I really need them. Hope you are having a good day and not too miserable with pain and medical issues.
I went off morphine ER and percocet before I discontinued the gabapentin. Going off gabapentin was 50 times more difficult.
I don't know how long it has been since you discontinued the gabapentin, but hang in there. The only thing keeping me going is knowing how much I go through each day and I try to tell myself I am one day closer to possibly feeling better. Some days do get the best of me. I feel like each gabapentin prescription should come with free coupons for a spa day and cognitive therapy, because after what you go through, you will surely need it.
I can't tell you how much I appreciate the kindness of strangers to respond to my moaning. Someone wrote they were sending prayers my way. Very sweet and thoughtful from someone I never met.
I am trying to get off gabapentin after reading such negative statements.i was put on it on 3rd September this year.
My pain from my pelvic area is/was excruciating to the point of almost passing out.i was put on 2 x300 mg x 3 times a day.the Dr then said to take 3x300mg x 3 times a day which is 2700mg or day. I am down to 2x300mg in morning,1x300mg in afternoon and 2x300 mg at night.what is the next best one to leave off,the morning ones or the night ones.I do have liquid morphine too which I have got down from 4x 2.5 per day down to only taking it when the pain gets unbearable.
I'm more concerned about getting off the gabapentin,which seems to make me very depressed(and I'm not normally),tingling in my fingers,lightheadeness, tired,and very lethargic. I also noticed I've put on about a stone in weight too.
Any ideas appreciated.thankd
I am trying to get off gabapentin after reading such negative statements.i was put on it on 3rd September this year.
My pain from my pelvic area is/was excruciating to the point of almost passing out.i was put on 2 x300 mg x 3 times a day.the Dr then said to take 3x300mg x 3 times a day which is 2700mg or day. I am down to 2x300mg in morning,1x300mg in afternoon and 2x300 mg at night.what is the next best one to leave off,the morning ones or the night ones.I do have liquid morphine too which I have got down from 4x 2.5 per day down to only taking it when the pain gets unbearable.
I'm more concerned about getting off the gabapentin,which seems to make me very depressed(and I'm not normally),tingling in my fingers,lightheadeness, tired,and very lethargic. I also noticed I've put on about a stone in weight too.
Any ideas appreciated.thankd
Hello! If I read your info correctly, it sounds like you have been on gabapentin for a very short period of time. Did I read that right? I suffer from what I call *pain brain* and confuse things.
Are you discontinuing gabapentin due to all the horror stories you have read? All I can do is speak from my personal experience. For me, the pain increased after discontinuing the gabapentin and it was very evident the first 12 hours after taking the last dose. The pain goes on for a long time until it starts to get better.
I am sorry to hear you are suffering so much. I think it gets worse before it gets better. Decrease the medication according to your GP's directive along with a pace you can tolerate. I went completely by my physician's timeline which was far too fast and the pain was unbearable.
I read your symptoms and I can see why you are concerned. The medication is systemic and works on your central nervous system causing many problems. This is why I am so angry about the widespread prescribing of this drug. They don't give patients a clear picture of the pain and symptoms which occur, while on and off the med.
I was lightheaded, dizzy, lethargic, horrible increased pain, painful and red eyes, shaking nerves in my legs, abdomen and forearms, feeling weirdly hot and cold within a few minutes, numbness that one minute is to the right of mid-line and next minute the bottom of my left foot. I cannot say enough bad things about this drug and my experience with it.
All my best to you. I wish I could help more, but I think having different medical problems, on various pain medications and having various "withdrawal" symptoms makes it tough. You do have my sympathy.
G.Allyn
Thank you for taking the time to reply to me, it is always appreciated and it makes me realize that what I am going through is normal for Gabapentin withdrawal, but it doesn't make it any easier. I have been back up at 300 mg for 7 weeks now and still have the same withdrawal symptoms. It has not gotten any better over that time but I don't want to go any higher as the side effects are bad too. I have read that it could take 3 -6 months for your body to start to recover and for the withdrawal symptoms to go away. I am waiting for an appointment with the clinical pharmacist to go over my meds and see what she recommends but she is only working one day a week at the office for 7 doctors so who knows what that will be. My face and top of arms still feel Kind of tingly and crawling and the morning waves of heat and burning on my arms and face still goes on for a couple of hours. It's kind of like hot flashes but without the sweating, and unlike hot flashes it is continuous. These days I just want to go to bed and sleep and not wake up until all the withdrawal symptoms have gone away. I still have the headaches and pressure which the Gabapentin was supposed to help as well. It really sucks right now but knowing I am not the only one going through this is somewhat comforting. I am going to try and hang in there at the 300 for another month and see if there is any improvement. Hopefully by then I will have seen the pharmacist and she has some suggestions.
Thanks again for taking the time to respond.
Lynn
Good luck with your appointment. I was so frustrated with the withdrawal problems I tried to take a small amount of gabapentin per my physician's authorization of 100 mg at bedtime. No change. He suggested 400 mg a day. No better. I gave up. No more neurontin for me. This was at about the 9 month mark of discontinuing gabapentin.
I am currently at about the 15th or so month and things are finally starting to ease up in terms of pain and other symptoms such as nerves "shaking".
Isn't this whole thing ridiculous? I wish I knew all this or I never would have taken the first dose. Absolutely did far more harm than good for me.
Good luck!
Again, I want to thank you for responding to my post. Yes, this has done more harm to me than good too. It sounds like that is the case for most people, yet they still keep prescribing it!!!!
i am glad you are finally seeing some relief but 15 months is unacceptable! Someone needs to educate these doctors and not let them be swayed by the drug companies who make these horrible drugs. I realize that epileptics need this medication and that is fine, but all these off label prescriptions need to stop!
I wish you well😍
Lynn I totally agree! G Alyn 15 months is unacceptable. This should have been tested so as Patients We could make informed decisions. Yet I doubt 50 million scripts per year would have been filled if that fact was known! Of course it's not the same for everyone but when you hear of People also taking it for just a few days and still going through bad withdrawals 6 weeks later...it really makes You pause and wonder, is the relief worth it..if You do get relief. I was so out of it, I don't remember. I never would've started it had a top rate addiction Specialist hadn't told Me it was non addictive and safe. Best drug for pain as I have very little nerve pain but pain from a metal on metal full disc replacement. I was prescribed on off label reasons. I had been in ICU about 4x for upper respiratory infection where I almost died from aspirating and not breathing. I went through the 4 meds I had been taking when My health collapsed. The only one I was still taking was gabapentin. Never being decreased but always increased and my pain and health issues increased too! I was withdrawing and doing great and at My Primaries and pain managements almost insistence I had the second attempt of a medtronics pain pump. My Doctor no longer wants to prescribe opiates and only wants to deal with pain pumps and meds like gabapentin, lyrics and oxicarbizapine for Me! Like I said I was doing good, my excruitiating pelvic pain was lessening but not enough to stop opiates. Like an idiot I had pump put in and within a week I was unconscious on a ventilator and had bacterial menegitis. It has in side effects chronic infections which I'm now diagnosed with. My Primary said the test that showed increased WBC count was really just an increase in inflammation. It was a safe operation! He just can't believe that happened. I'm lucky to be alive and He still doesn't understand my insistence of withdrawing of gabapentin. If you find your sodium and electrolytes can't balance it's rare supposedly but another side effect. This drug has deadly side effects and the longer you take it the more your likely to get! No joke have a Person You trust ready to step in and make life decisions for You. My Daughter had to jump right in! I couldn't remember if I even took my meds. Which lead to double dosing at times! I'm going to get better hopefully and will look at any new meds prescribed. It was like well I got this so take this and it has side effects! I went from 4 to 22 meds with all different side effects. Good luck and will keep You in My Prayers! G Alyn I have a special spot for You as My "kindred Spirit"! Sherri
I am trying to get off these tablets.im taking myself off them gradually.i had got it down to x2 in the morning,x1 in afternoon,and x1 at night.
I'm trying as from today to take x1 three times a day for a week,then I'll stop the night one and stretch the afternoon one out until late afternoon-early evening for a week or so.im starting to lose weight already,thank goodness.
Let's hope this works.i don't want to be on these tablets,having read the comments.
Sounds like you have a slow discontinuation plan. I can only tell you my experience. On the last day of my six day wean schedule I felt a serious increase in nerve pain. I thought it would be similar to discontinuing opioids with a 48 hours increase in pain and it would get better.
With my experience the increase in pain lasted too long. Maybe, a slow wean schedule may keep this from happening or limit the pain. I hope so.
My only thought is stopping the night dose may cause increased pain and disruption of sleep overnight. It is something I experienced, but you know your body and how you feel. The short half-life makes skipping a dose pretty miserable. At least it was for me. You didn't ask, but going an extra hour between doses, and doing this for a few days, may make it easier if skipping the night time dose is too difficult.
Good luck and let us know how you are doing after you get off gabapentin.
hi, i am stuck at 300mg gabapentin and feeling horrible anxiety/depression/crying/apathy and emotional hell. was put on them for help with anti-depressant withdrawal. terrified of tapering down as have heard horror stories so what do i do???have you stopped taking them and did you taper? I feel like i will never be normal again....please respond
Hello... sorry to read of all your pain but on the other hand you have confirmed that I am not losing my mind!!!! I have been on 3600 mg Gabapentin for over 5 years. In mid-August I began tapering 300 mg every 10 days. After a month of not knowing what was wrong with me, blood work showed my white cells had risen but there was no sign of infection, only lethargy, non-motivated, depressed, tired, irritable, need I go on? After a double dose of antibiotics my mysterious infection was gone, doctor believes it may have been that my immune system was comprised from the shock of decreasing the Gab so quickly. I waited a month for the next 300 mg reduction and continue to feel crazy.
I hate everybody including my partner who is the most wonderful patient man in the world. Every day I wake up miserable and have no desire to move. The past 2 days I forced myself out for long walks and spent the day reading on the Mediterranean (my happy place). Nothing makes me happy!!!
In finally researching this subject I've realized that this is going to be a very long process. I'm down to 2100 mg and am thinking to open and empty the capsules to begin reducing 150 mg/month. I'm open to hearing all your ideas and especially success stories... Is there life after Gabapentin???