Tired of taking narcotics. Anyone ever hear of or take Benfotiamine? Had back surgery 9 weeks ago and this darn nerve pain is the only thing slowing me down!
It is basicially a version (supposedly a fat soluble form) of thiamine (Vitamin B1). “Regular” thiamine is water soluble so you can take a lot and the excess gets flushed out.
Evidence is just anecdotal but heck, I guess it would be worth a try to take 300-500mg thiamine per day and see if it helps.
A bottle of 100mg tablets would cost about $3-5. I don’t think I would bother with the expensive stuff although some of the “nerve” supplements do have other vitamins and alpha lipoic acid.
It shouldn’t hurt you if you want to try it.
Susan
Gabapentin
I take gabapentin for nerve pain. It’s perscribed off label. I believe it was originally marketed as an anti seizure drug. I consider it a miracle drug. My nerve pain is almost completely gone. Though i do occassionally have flair ups when i over do work around the barn or house.
I also take gabapentin, I love it! Doesn’t make me feel nauseous or give me tummy aches, gets rid of even the worst migranes in under half an hour, and it does a much better job of relieving pain than other medication I’ve been given. I also have a lot of medication allergies, so it was amazing to find something effective that I’m not allergic to. On top of my allergies, I’m on other medication for another condition (that will be required for the rest of my life, ugh) that has a lot of “do not mix with” drugs, so it took a lot of searching to find something that didn’t cause an allergic reaction but also doesn’t have a bad reaction with my other meds.
I should add that it’s definitely ONLY for nerve pain. It does nothing for the tendonitis in my elbow. For those flare-ups, mineral ice is my best friend, haha
For those of you on Gabapentin: Did you have to start on a very low dose (100mg) and work your way up to a therapeutic dose? I ask, because I was on Gabapentin 12 years ago and initially started on 300mg. I was so dizzy I couldn’t walk without holding on the wall or furniture. The doctor changed the dose to 100mg, and then over almost a year, I got up to 3,000mg and it worked…no more neuropathic pain. Over the next 6 months I dropped the dose, little by little, to 300mg. I came off the drug completely after a total of almost 20 months. I’m now in a bad way because I had to come off Voltarol because of heart questions. I’m thinking of going back on Gabapentin, but I’m worried I’ll be tired most of the time. One wants to be sharp as a tack when working around horses, especially Shire horses.
I love Gabapentin! It was my miracle drug when my nerve pain was so bad I couldn’t get out of bed. After 2 doses I was walking around like nothing had happened. I will have to try it for migraines!
Now I only use it when I need it.
Interesting comments about the migraines. I have not suffered from them since taking Gabapentin. I’m on 2400mg/day and still have terrible nerve pain, hence the question of the Benfotiamine, which hasn’t helped yet but it’s only been 1 week.
When I started, I was prescribed 200mg gabapentin 3x/day. worked my way up to 600mg 3x/day, and after 2 years I’m now down to 400mg 2x/day. I never had any dizziness or drowsiness, still don’t. I do, however, have a tremor, but I’m not certain if it’s the gabapentin’s fault or if it’s from one of my other meds.
I was also able to stop taking my other mood stabelizers/anti depressants/psychiatric meds (I have issues with depression, anxiety, PTSD, and it’s thought I may be bipolar OR borderline but it’s undiagnosed at this point in time) since taking the gabapentin. I still feel all of the emotions and moods, but the gabapentin takes the edge off just enough so I can develop healthy coping skills without risking spiraling into a really bad place. It’s nice to feel somewhat normal, instead of always feeling stoned (seroquel), being able to do nothing but sleep (ativan), dealing with seizures (zoloft), and making the mood issues worse (paxil).
I take 300mg Gabapentin 2 times a day and it helps. I started taking it back about 5 months ago. Just had surgery and I will be on this for a while.
I have the beginnings of complex regional pain syndrome, and was prescribed Lyrica for the nerve pain. I started on a loading dose and gradually increased to a therapeutic dose. I was fine at first, but once I got to the therapeutic dose I couldn’t handle it. I’m also a big wimp when it comes to meds, so that’s probably why. I have a few friends who take it and it works wonders for them. It’s also a seizure med. One other that I’ve taken in the past that worked is amytriptilline. It’s a tricyclic antidepressant. It’s great if you can’t sleep too. It’s about $3 a month versus $40 for the Lyrica with my insurance. Hope that helps!
I believe Lyrica is in the same class of drugs as gabapentin (which started life as an anti-epilepsy drug). Amitriptyline, in low doses, is used to relax and aid sleep, especially in patients with neuropathic pain. I’ve been on 10mg every night for years.
A major news item has been reported today about a study in Denmark which posits that the bacterium that causes acne can infect spinal discs and cause back pain. The study suggests that 40% of back pain sufferers might benefit by a 100 day course of antibiotic for relief. The reason for such a long antibiotic course is that discs have a limited blood supply and it takes that long for the antibiotic to get to and work on the infection. More information about this story is coming out this morning. My fear is that one could suffer antibiotic resistance in future, but, good news, with a pain-free back!
Gabapentin, Amitriptyline, Topamax - none of them work for me. Topamax was scary as hell.
I’m on maxed out doses of Gaba and Amitriptyline but still have to take a large amount of narcotics. I wish the other stuff worked better for me.
GotGait, I feel for you. Is it nerve pain? If this Benfotiamine works, I’ll let you know. I also am still taking narcotics on top of the Gaba.
[QUOTE=sign of Grace;6977077]
GotGait, I feel for you. Is it nerve pain? If this Benfotiamine works, I’ll let you know. I also am still taking narcotics on top of the Gaba.[/QUOTE]
Yes, it’s so bad, I am “officially” disabled now. 
I feel for you guys, though i have RA and migraines i know how it feels, right now i feel trapped it hurts but because im young they wont prescribe heavier meds, i cannot tolerate nsaids so popping t1s and still not functional!
Oh gets better my neuro wont help me apply for disability even though i have more than 10 migraine days a month really thats not disabling?
Hopefully my rheumy can come up with a management system and is helping me apply for disability
Its hard emotionally, and being 23 people think im exaggerating love getting dirty looks from seniors because i have a disabled parking pass
Sorry for the hijack i needed to vent to peeps who get it
Vent away…I have so much more empathy (and sympathy!) ever since my wreck (motorcycle accident in 2010, 9 various surgeries later). Up until that, I had been perfectly healthy (nothing major anyway).
Sidenote for you Teddy. Maybe ask your neuro about Gabapentin for migraines? I certainly was/am NO where near your days of migraines per month, but since I’ve been on the Gaba, I’ve had zero. Just a thought…
Thanks! Will look into it! I get to do genetic testing now to see just how special i am! They want to connect the dots, right now all they know is i have 41 anomilies in my dna,
Its nice to have people who understand to talk to, zero migraines eh? Sounds awesome!
Wow - timely thread for me. And I surely hope all of you who are still having issues find the right combination of stuff sooner rather than later…
I had surgery about a year and a half ago to remove a large tumor (the surgeon even called it “impressive” so you know it was big) from my right jaw bone. The surgery was mostly a success, but there’s still a bit of the tumor in there he couldn’t get to.
I’ve had some pain on and off which the Dr says is typical neuropathy after this kind of surgery, and until recently, I was able to just take the Vicodin I’d been prescribed when it got unbearable. But this past weekend, I experienced pain like I’ve never had it before. The Vicodin did nothing and I was in excruciating pain for days. The pain has subsided (not entirely gone) and now my chin and lower lip on that side are numb and tingly.
I have an appointment on the 21st with the surgeon to talk about it. I’m not sure if something else is going on or if he’s just going to give me a nerve-pain medication like you guys are describing. Either way, it’s good to be informed, so thanks so much for posting all of this information up! I’ll have at least a few talking points with the Doc if he goes in this direction.
[QUOTE=RutlandH2O;6974276]
For those of you on Gabapentin: Did you have to start on a very low dose (100mg) and work your way up to a therapeutic dose?[/QUOTE]
I started taking 300mg at bedtime, and then started taking it in the day as well as soon as I didn’t feel like I was so drowsy I had no choice but to fall asleep after taking it. So I started out drowsy at first, but it wasn’t very long at all before I adjusted to it, and it was no longer a problem.
Tricyclics turned me into a complete zombie, and they didn’t leave my body in an even vaguely normal time frame, so I ended up having an overdose reaction while taking a normal dose (can’t recall exactly how much, though, since it was a long time ago, and it was so bad I’m not ever planning on trying them again).
My aunt takes Lyrica and is very happy with it, but I’ve never tried it myself.
Topamax actually gave me more nerve pain in places I hadn’t had it before.
Good luck to everyone here. I hope we can all either get our issues resolved, or at least find a way to manage them.
Wayside, Thanks for your reply. When I first started Gabapentin, the doctor prescribed 300mg. I took it at night, right before bed. The next morning I was spinning. I could barely make it down the stairs and my husband was away. I could just about feed the animals, much less wobble down to the stables. I gave up on it for a few months, then started, again, on 100mg. There was a big difference starting on the lower dose. I thought I might try Lyrica this time around.
Sign of Grace: I certainly don’t mean to hijack your thread. I have never heard of benfotiamine. I will be looking online for information about it and its efficacy.
