Gabapentin withdrawls while preparing for neurology tests

That sounds very challenging. I am on similar dosing and it works for me. Coming off of it for a couple would or could be tough. My pain has been similar to your but not so severe. We just added baclofen to the gabapentin and it seems helpful. Keep this in mind talking to the docs.

Good evening @ferfer5. It is great that you have received an appointment at Mayo Clinic. Have you had a chance to inquire about your withdrawal concerns with the department you will be visiting? Please contact the Neurology Department for assistance.

I have been withdrawing from gabapentin very gradually for several months. Each time I dropped another 100 mg of gabapentin, I replaced it with a medical cannabis tincture of CBD and THC. That has been working well for me. I am down to 200 mg of Gabapentin every night from a start of 2400 mg.

Please post your response from the Neurologist. That information will be very important to others facing the same situation. You are going to learn a lot about your condition and be able to share in the decision-making for pain control. That's how we all learn on this forum......by sharing.

Good luck with your appointment. I will be waiting anxiously to hear from you.

May you be free of suffering and the causes of suffering.
Chris

I’ve been taking 800mg 3x a day for about 7 years. I’ve never been asked to stop that particular medication before any tests or procedures, so never planned for possible withdrawal. However, I once had a simple outpatient procedure done at a Medical University hospital that went awry with anesthesia reaction and caused me to be admitted for 4 days. They had my list of medications but for some reason they couldn’t get the Gabapentin to me until the 3rd day, some weekend issues or something to get it ordered and cleared, or availability. I wouldn’t call the absence “withdrawal” in the medical sense that I had DTs , or extraordinary mental or physical reaction, except that I realized how well Gabapentin helped mask my pain and wasn’t a cure for PN. My team tried to give me Tylenol and other things to help make me more comfortable and get occasional sleep, but it was rough as it didn’t get to the deep nerve pain in the legs. My husband finally brought my Gabapentin from home, and the hospital allowed me to take my own since they weren’t able to get it. They were actually happy to learn how Gabapentin helped a patient with PN in their care, so I’m glad I helped them learn though my part was uncomfortable - but I learned about Gabapentin for me in this experiment too. Like Chris said, it’s important to keep the dialog open with your Mayo team. In my case there wasn’t a medical need to stop my Gabapentin, but your doctors know what’s needed for the tests to be accurate, and you want certain diagnosis & don’t want to have to repeat the exercise! I was fortunate to have been admitted and have an on-site care team though their expertise was cardiology; if you’re not admitted, do you have a team to call if any bumps along the way while you’re stopping the meds those few days? Like Chris said, I hope you share your experience and outcome for all to learn. Best wishes on getting answers and relief!!

Thanks for this discussion. I spent two nights in a hospital for an intestinal blockage and had a tube inserted through my nose into my stomach. I had been taking 100mg of Gabapentin three times a day for TN. Of course, I couldn't take anything orally so I was unable to take the Gaba. Initially, my TN did not start up and I resumed my dosage when I left the hospital after 36 hours without any Gaba(the nurse gave me some Gaba in the hospital when the stomach tube was removed). Two days later, I started having TN issues again and it took some time to get control of my symptoms. Perhaps there is an amount of Gaba that builds up and takes time to dissipate and build back up again?

I will also react to the comment about finding a neurologist who wants to deal with these issues. Good luck finding one!

Can you tell me how long it took you to get into to the Mayo Clinic? Did it have to be the one in Rochester Minnesota? I am having a nasty time trying to get into the University of Boston. The neurologist mentioned spelled the doctors last name off by two letters (Outlander vs Oaklander). The University of Boston did not care to call me or anything. They make you get a patient number and then fill out all the paperwork through the portal. They had my medical records and everything. They sent the referral back to my doctor. The doctor did not know they sent it back. My neurologist passed away and the other neurologist just do not care. The neurologist said just come see when you want your medications filled. I have gone from seeing a neurologist every month to every six months. When something goes wrong send her somewhere else. When we did the mri on my foot to find out it felt I was walking on nails come to find out foot atrophy due to the neuropathy. It is the most frustrating experience I have ever had. I live in Dallas Texas but when you log into the neurology data base only one doctor in Texas treats it in Houston.

I had been on Gabapentin 1200mg daily for awhile, and then last Nov I had a small tear in my intestine and required emergency surgery.
I also became septic after staples were removed and had 2 more surgeries to clean infection out.
They had to leave my wound open, and it took from Nov to June using a wound vacuum for it to heal.
It was a nightmare!
What I wanted to mention was while I was very sick and in the hospital for 3 weeks, they never gave me my Gabapentin.
I guess you’d say I went off cold turkey, and didn’t feel anything when it was stopped,so I didn’t ask them to restart it.
I really questioned whether it helped my neuropathy at all.
I still has pins and needles in my feet and legs, and nerve pain on and off.
Felt like I was getting stabbed with a knife.

I worry too about whether my Gaba dosage is the explanation for my current remission. I'm going to start reducing the dosage as an experiment to try and find out. Right now I'm taking 400mg at 6AM and 400mg at 6PM. I'm thinking of doing 300mg at 6AM and continue 400mg at 6PM for about a week and, if that's not a problem, going 300mg at night for week. I've been told by two doctors that I should feel free to experiment.

I started taking gabapentin but it didn’t work for me and I felt worse from side effects. I’m now on Baclofen 10 mg am and 20 mg bedtime. Works well for me and allows me to get deeper sleep now that I’m taking 20 mg at night. I also have fibromyalgia with pain in upper arms and shoulders as well as the nerve pain from neuropathy. The Baclofen is a muscle/nerve relaxer. I don’t have any side effects from it. I’m feeling so much better with more sleep!

Someone else mentioned baclofen so I will definitely look into that and ask my doctor about it. I guess I am not sure if gabapentin is working or not to be honest? I still have pain but it's definitely better than it was a few months ago when I was hospitalized/diagnosed. So either I am getting better or the gabapentin is helping or both. But I would like something thatg controls the pain more, especially at night!

It was actually the neurology department at Mayo who said I needed to be off gabapentin and all pain medications and sleeping pills for 48 hours prior to the tests. I had called to inquire about the gabapentin specifically and a woman called back after talking to the doctor I will be seeing. I told her "you guys might see a very ugly me for the few days I'm down there!" I hope that won't be the case but a week from now I will know for sure. I do plan to talk to him about gabapentin to see if that is the best medication for me to be on or if there are other options. I will post more once I learn more! I'm hoping for a diagnosis of some sort since my original diagnosis from my current neurologist seems to be wrong. Fingers crossed. I'm glad you have found a combination of medications that work for you!