Small Fiber Neuropathy discouraged

@graysea When I was taking a ridiculous amount of gabapentin pills each night I asked my doctor what the limit on dosage was for gabapentin as I felt taking over 15 pills at one time was a high amount. It also was not resolving my medical issue. He told me there is no limit on gabapentin, they can just keep prescribing until it works. I am so glad I didn't listen to him or I would be suffering the withdrawals you are. I am so sorry you are in this position.

Im glad you listened carefully to your body and logic. I was on 1200 mg for one year and a month. I don't understand the "more is better" philosophy with gabapentin. I do not see this cavalier attitude with other medications. Can anyone help me with this concept? I do know in my heart of hearts that this medication works for others. It is just a tough journey for me when Im in a the shadow of a medication that is
doled out to many.

I'm so sorry you are having these problems. Please feel free to talk to me about any stuff for SFN as I'm on my 3rd year (I think it has been building up my whole life). I may not have an answer, but can totally relate.
I had migraines so bad, for so many years in my 20s into my 30s..I was diagnosed with pseudo tumor cerebri. I would have to go to the doc each time I had a migraine, with a driver of course, get a cocktail shot then go home and sleep anywhere from 5 to 8 hours. I would wake with no headache. I've seen several neurologists over the years. I have been diagnosed with so many things that overlap including; Graves disease, endometriosis, EBV, carpal tunnel, fibromyalgia, osteoarthritis then also, finally in 2020, I was diagnosed with small fiber neuropathy; after a punch/skin hole biopsy. I have also had a bowel obstruction, then a colon torsion 3 months later. I've had a fundipolocation - twice. I also had to have a c-section to give birth to my beautiful twin girls. I'm typing this right now with terrible pain in my right eye/migraine pain that I've had for more than 24 hours (give or take an hour or two) due to chronic uveitis...this week or month's "flare up" choice location. I had plans today. Instead, I lay in my dark bedroom with an ice pack over my right eye and temple and sent my hubby off to the party on his own.
Does anyone out there have terrible eye pain associated with their SFN? ...OR just so much pain that you cannot go out ?? It is,indeed, very discouraging

I agree with you. Gabapentin has never worked for me. Only my current two neurologists listened to me and did not "try again" with gabapentin at a higher dose. More is not better with neuropathy meds.

In have come to think of insomnia, as an old acquaintance. Last night I was thinking, hmmmm. When I wrote care plans, they were ,"moving forward". Not stagnate. Im have never been close to having the cognitive ability of a physician. However, I was prescribed prednisone and gabapentin with no plan of ever taking me off of these medications. What happened if they didn't work? What happened if my body rejected the medications? Nope this was never discussed or planned. How very cruel. I took the medications as prescribed. Then the same doctor was over his head. I had to find another doctor to help me off of those medications that didn't help and that I was having an adverse reaction. It will take a year and a half out of my life. Plus, I still will battle small fiber neuropathy. I have been weakened by these medications. What a cruel cruel practioner.

From my notes. The ringing in my ears and ear pain, was not neauropathy. It was gabapentin. My swollen gums. My dentist told me was a side of gabapentin. My trouble walking, went away after I started the gabapentin tapor. I can read again after decreasing gabapentin. My endocrinology doctor ordered tests to make sure gabapentin did not hurt my liver or pancreas after one year. And I was unlucky. I stopped sleeping. Gabapentin was suppose to help me sleep. Nope, I guess in some patients it aggregates sleep. Im assured after the tapor my sleep may get better. Oh, and the stress of withdrawal from gabapentin actually worsened pain.

My gabapentin tapor is going very poorly. Nausea/vomiting, I rarely sleep, very jittery, I have no appetite, if I have energy I pace. I am ill enough I do not leave my home. Why was this medication so important that the doctor said I have little other choice for pain. I was desperate. I would have taken poison. It was prescribed off of my allergy list

I was on Gabapentin 1200 for over a year. I was tapored off of this medication in six weeks. It was a horrifying time. Two weeks ago I felt the urge to rock, pace, and sway. I could not sit down for long due to the pacing. This happened to me one other time and was placed on propranolol for withdrawal akathisia. This time is very distressing abd I can't sleep and have to stand to eat. I have gotten no education on why this happens to my body. Im so very tired and feel weak . I am to take a low dose propranolol again for this movement

How very lonely to have something happen to my body that no one understands. I had little information about gabapentin withdrawal. So why does my body get this movement disorder when taken off of gabapentin? The first time I was taken off of a sleeping med and the same thing happened. I dont sleep and Im rocking when I write this slip. This isn't a med side effect it came when a med is withdrawn.

From what I have read, few have troubles taporing from gabapentin. The taper schedules seem brief. No articles on ill effects. I was on 1200mg for a year. I tapored off in 6 weeks. It was a nightmare. I apologize for taking peoples time. I didn't realize that I was an odd duck. I am only on 3 med now, Ill go off of prednisone then be on two. I guess Im on another brefly for a withdrawal movement disorder. My situation was bad but I can't find evidence that this is common. I thought someone else would have gone through what I have gone through but that is rare.