Gabapentin Withdrawal Horror

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.

 

get to 100 Terry.  Get on Remag or CBT magnesium.  Give it a week then off.  Give it a go worked for me I am a new man.

I really need some sound advice.  In December of last year I had open heart surgery to repair an aneurysm and replace my aortic valve. After about five months the pain from the surgery finally improved, but my incision remained so sensitive that it hurt to even take a shower.  My regular doctor, who had been monitoring my blood pressure and progress, prescribed Gabapentin and Meloxicam.  The Gabapentin was slowly increased to a total of 1800 mg.a day. Three weeks ago I realized that my scar didn’t hurt anymore but just felt “tight” so I started to eliminate the midday 600 mg. of Gabapentin.  I told my doctor that I was coming off it and he said “Good!”. He never warned me about withdrawal or suggested tapering so I stopped the nighttime 600 mg. too.  Boy did I get sick.  I think I had every possible withdrawal symptom!  He told me to take 100 mg. twice a day. I tried that and the nausea and headaches were terrible, so I tried 100 mg. three times a day (300mg. In total).  That’s where I am now and for the last week and I am still horribly nauseated pretty much all day except for a few random hours.  

Should I keep tapering or should I just stop?  I understand now that I shouldn’t have come off of the drug so quickly, but I’m wondering if I should just get it over with now.  Any advice would be greatly appreciated.  Thank you.

Jennifer please please don’t quit the remainder cold turkey. I was taking the same amount, 100 x3 and had to quit cold turkey. The nightmare that ensued, was like repeated death everyday for 4-5 months. On many occasions, I would stop breathing, so please don’t. It may take a bit longer but much better and safer to taper. 

Keep going and make sure to be taking at least 2.5ltrs of water per day. I added fresh fruit juices (home made) to my diet three times a day plus sucking on oranges and a watermelon everyday which got rid of jelly legs, burning, nausea, tremors etc. It may not work for everyone but I’ve stuck to adding everything natural in what I’m eating/drinking and so far it’s working. A lot of people also mention pelvic spams quite often too. At first, I tried a pinch of salt which did help but not that much until I started adding salt to water and works perfectly every time. I don’t even have pelvic spasms anymore. 

You will get through it, keep persevering. All the best....

Thank you so much for responding!  Do you think that I should take more than the 300 mg. so that the nausea might go away?  I know that I'm not drinking much of anything right now because I'm so nauseated.  I will try harder.  I'm just so miserable.

My pleasure. I honestly don’t think that increasing your dose will help. It only prolongs the withdrawal and continues to add the poison in your body. But that’s my experience and my opinion, only you know best how you feel and how you’d like to proceed. However, as someone who has and still is going through this, I sincerely would advise against raising your dose. 

It’s the gabapentin that makes you feel like a zombie living in some parallel universe. I didn’t realise it was making me feel that way until I came off it. Please try and drink plenty of water, have lots of fruit... if you can’t digest it, just suck the juice. Believe me, not only will it give you the vitamins your body needs right now, it WILL get rid of the nausea. This damned drug drys out every nerve in the body and that causes heat. When u start adding ample water and fruit, your nerves and esp your stomach will begin to relax, it will also reduce the acid being produced in your gut from the withdrawal. The nausea will subside. Try this for 48-72hrs before you decide to up your dose. What do you have to lose?

No dr will ever admit that acid rises to your head and that causes the nausea. It does! And because gaba in a neural drug, that acid spreads in every nerve of the body. I have managed this withdrawal for 9 months now by water fruits and veg. I tak everything that helps to keep my body/blood cool. It works. Give it a go?? 

Jennifer, I see you are on Meloxicam

I am too. Are you feeling any side effects

My eyesight is not as good as it should be. I read one of the side effect is blurred vision. I would like to go off it but am afraid of the pain in legs, feet, tingling, numbness etc that I'm feeling. I was weaned off Gaba 8 weeks ago.

Thanks, Leenz.  You've convinced me.  I just bought freshly squeezed orange juice and watermelon.  I will try to stick with the 300mg.

Hi, Marie

I just stopped taking Meloxicam because it was causing my blood pressure to be too high.  I didn't notice any blurred vision.  I have problems with my knees and I think it really helped.  How did you get off Gaba?

Oh I’m so glad! You will definitely begin to feel the difference, as your body temp cools down, the nausea will disappear. Mine always does... if I forget to have watermelon on any day, the next day I have so much nausea and can’t eat but if I keep taking it, I eat like a horse.  If you find the fruit hard to digest, just take its juice, right now the juice is what you need most. Watermelon is the most important fruit that detoxes the liver so it will work. 

Please remember, natural is key in anything that you eat/drink. Anything processed will cause a flare up. Keep us posted on how you get on, there’s always a way.... keep fighting the good fight! 

Oh... yoghurt will help too. I usually buy Greek (onken) yoghurt. It’s probiotic so again, it will help rebuild your gut. To that I add a bit of banana and berries. It’s a great snack, it’s cooling, and berries are rich in vitamin c! 

Best of luck ☺️

Thanks for the info im sure gonna try this!

Hi, G. Allyn. I want to reply to your last statement, "I guess the old physician saying, that a patient is a liar until proven otherwise, still stands." - I developed a permanent movement disorder after only taking two consecutive 300 mg doses of Gabapentin on 03/27/08. It is probably a rare side effect, or doctors aren't documenting it - Later I signed for my records and I believe all the History researchers prefer going by a normal neurological exam conducted 82 days before my adverse reaction. I didn't go to the ER since my doctor's nurse assured me that side effects always wear off, and humiliation also held me back. - My doctor tried to have me detained at the PSYCH ward, but the ER doctor said I wasn't detainable, so I would have to agree to it, but I didn't want that on my record. I didn't realize that my doctor would become a false witness in my records. The neurosurgeon who ordered a brain MRI only told the radiologist, "Neck stiffness, and r/o a brain mass."

Then he told me at the follow up appointment, "Your results aren't in yet, but I'm sure you didn't have a stroke." I didn't have any head pain, but I had extreme burning in my left hand, that flapped rapidly, and I had a visual disturbance of seeing colorful pinpoints of lights, and uncontrollable laughing spells that didn't fit the situation, before uncontrollable movements took over my body.

They had no intention of telling me I had a 5 mm hypothalamic lesion. Recently I found that a person will have Thalamus Pain Syndrome during a stroke that causes a movement disorder with one sided burning, and sudden mood changes.

My medical records are filled with lies, like claiming I have a normal arm swing while walking. No, I don't!

One movement disorder specialist didn't follow the radiologist who put "Clinical Correlation advised," on my 3rd MRI results. Those tests were completed at another clinic that required an expensive trip. I found another lady who developed Dystonic Storms from Gabapentin. Doctors gave her the same diagnosis as me, "Functional Neurological Syndrome," that means there isn't any damage to the brain, and it can be reversed. That doctor told me, "Your movements will stop if you stop thinking about your idea that Gabapentin caused this." She evidently didn't find the 2016 update meant for physicians that had FDA approval, that included "Nervous system problems - movement disorders."

I feel like I should report how people are treated if they "Failed on Gabapentin," that was mentioned one time in my doctor's clinical notes.

Beth, your response helps explain why there are no easy answers to gab. Someone says, "I was on a low dose" or "I wasn't on it long", it makes no difference. Now that this drug is so widely distributed we're starting (by we, I mean those of us on it) to realize it's damage. Clinical trials of drugs are limited in time, usually less than 12 weeks and to a specific population. Also the bar for being an effective med is quite low, 40% of the people have pain decreased by 50%. This was a small study for PHN (post herpetic neuralgia or pain after shingles, which I have). If you read the FDA studies, you'll see how little they know about these drugs. Yet, our doctors don't even refer to the basic information available to the patients, to understand this drug.

Babs, Yes I know they have flimsy clinical trials and they also cook the books.

I should have asked my prescribing doctor if he was going to report my adverse reaction.

I did tell him I was concerned that many people might be having the same reaction as I did. . He told me,

"There aren't any reports about your type of condition." So the 2nd time, I pulled out a report showing him the FDA had been receiving complaints since 1996, (when Parke Davis went off label) that people developed Myoclonus, muscle jerking. Then I told him I had called MedWatch about finding this report, and their representative told me they hadn't received any well-documented reports and she asked me if I could send them one. So I asked him, "Will you back me up?" He told me to talk to his nurse.

I don't care how busy doctors are, they should report to MedWatch, since they can do it on-line.

You give wonderful answers to people going through Withdrawal. Slow and steady wins the race.

Thanks Beth, I know you were familiar with the things I was saying, but I never know the background of others who come to the group. You know laypeople can also report ADR (adverse drug reactions), but I too am guilty of having not done that.