On low dose of Gabapentin but want to come off it

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Hi I was prescribed 100mg Gabapentin 3 X day - which is a low dose compared to some on here. It was for neuropathic pain which I no longer have. Whether it has gone completely or whether it might come back if I quit the gabapentin, I don't know but I want to try. The thing is I feel my breathing is being affected - ie blocked nose and tight chest (both listed as possible side effects). This is unfortunate as I am also being treated for a lung condition. I was putting these symptoms down to the lung condition per se but these things only started after starting Gabapentin. I have only been on it for 3 weeks so wondered if I could safely taper on my own. Not sure if it comes in strengths less than 100mg or if I can split a tablet. Otherwise the only way I can see of tapering would be to start by reducing the dose to 2x day. Just wondered if anyone had any experience of coming off a low dose.

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  • Posted

    Hi Chris,

    My advise, don't try to taper down on Gabapentin by yourself. It could lead to fatal result. The best thing to do is to work it out with your GP. Unfortunately, most GPs don't even have a plan or know how to do it successfully. I have a PDF plan I downloaded over the internet and could forward same to you if I have your email. Inbox me at *********. Cheers.

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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  • Posted

    There isn't a lower dose that I'm aware of, but this is an international support group, so it may be different where you are, I'm in the US. Many of us use capsules and some dissolve the capsules to create a liquid and then titrate (decrease the milliliters). It's a bit of a process but you can find more info on line. The other option is to get liquid gab and decrease that way. I doubt if the capsule can be easily cut, but you could try.

    I'm part of a group that supports a growing view of how to taper from any similar drug by decreasing by 10% or less over 4 weeks or more. At your dose, it's hard to do that, so the logical way would be to drop one dose, and wait 4 weeks or longer to see if you get withdrawal symptoms. If you do, wait until you feel better. It takes me 8 weeks between tapers. But I've gone from 2700 to 500 mg. over the last two years. I found the longer I took, the better I felt. I'm doing SO much better, it was worth the tapers.

    You may also not get any withdrawal symptoms, but no-one can predict. Some people don't. For some 300 is a very low dose, for others, it's enough to cause real problems. Did you have side effects like dizziness, confusion, depression, tremors, memory loss, trouble walking etc. when you started gab? For those who had a lot of side effects, if we drop too fast and too much we have worse tapers. Are you on other meds? If you're on other meds like for anti-depressants or anti-anxiety, you may have more withdrawal symptoms.

    I'm sorry there is no easy answer. I'd say more likely, that you'll have an easier taper, but who knows? For those who taper too quickly and too much from much higher doses, when they get down to 300, they may just stop taking it, accept they'll be miserable, but know it's the last time they'll have to deal with it.

    I planned on stopping at 300 also, but as I'm finding my tapers are a bit easier (less pain, less confusion etc.) as I'm now taking so long, I think I'll go to 300, then maybe 100. I want to be off, but I want to feel as good as I can when I'm tapering. It's still not easy, some days I'm fine, others not so much, but it's not the misery I had when I did it at two or four weeks.

    Congratulations on wanting to get off! You may have absolutely no problem.

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  • Posted

    For what it's worth, which isn't much since we all react differently to meds, i was just taken off 300 mg 2x daily with no problem. I had just been bumped up to 400 when my PCP decided it was affecting my kidney function negatively and told me to come off entirely. After all I'd read, i was afraid to just stop, so she gave me a week to wean off. It took two days. I had no after effects other than a return of the pain for which it was originally prescribed. That's not a small thing, but it certainly isn't the reaction I was worried about. She gave me other alternatives, and so far I'm doing fine until I can resolve all of my other health issues and start again on my stenosis pain.

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    • Posted

      Yes I always try to bear in mind that it's nearly always people who have had bad experiences who post. I was in terror of a particular procedure after I read online comments and it was a breeze!

      But no harm in taking things slowly just in case. Not been able to speak to the doctor yet so for the moment I'm cutting the daily dose from 3 to 2. Will trial that for a week then go down to 1.

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  • Posted

    For what it's worth, which isn't much since we all react differently to meds, i was just taken off 300 mg 2x daily with no problem. I had just been bumped up to 400 when my PCP decided it was affecting my kidney function negatively and told me to come off entirely. After all I'd read, i was afraid to just stop, so she gave me a week to wean off. It took two days. I had no after effects other than a return of the pain for which it was originally prescribed. That's not a small thing, but it certainly isn't the reaction I was worried about. She gave me other alternatives, and so far I'm doing fine until I can resolve all of my other health issues and start again on my stenosis pain.

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  • Posted

    That stuff was a nightmare, my surgeon wanted me to build up to 300mg 3x a day, but after the 100mg 3x a day no way was I stepping up dosage.

    I'd recommend sticking to 100mg 3x daily at most and taper off ASAP, that drug should not be legal.

    Good luck with your recovery!

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    • Posted

      Again, I understand that idiosyncratic drug reactions are more common than we know, but I was surprised at how quickly my body acclimated to the 100, then 200, then 300, and finally 400 mg 2x daily (which is the renal dosage for those of us with kidney issues) and given a chance to try it again, I will do so. The combo of Gabapentin, tylenol, and the occaisional Ultracet really did a fine job of reducing my near-crippling pain. I didn't realize how much until I stopped.

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    • Posted

      Absolutely. The pain returned to the level it had reached prior to starting Gabapentin. I'd found a good combination of Gab with Ultracet and X-strength Tylenol. The three together did a fine job of reducing the pain to a manageable level. Without the Gab, the other two don't come close to masking the pain. They do take the edge off, but I'd be lying if I said it was in any way predictable or manageable.

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    • Posted

      Both USRider and I are correct. His pain went back to the old level, mine got better with each taper. However, we all have different conditions causing our pain. I have nerve damage from shingles called PHN. My condition is slowly improving, but the gab masked that improvement. When I'm totally off it, I don't know what my level of pain will be, but every 8 weeks, when I start a new taper, I have less pain than I did before. My sister's had several spinal fusions and was on multiple drugs, including gab and is now off all of them due to health reasons, and only takes some Tylenol or half a pain pill a week. For others, it will be a challenge to find other treatments or medications.

      Also, for me, it's more predictable as to what causes my pain. Certain activities and materials (I have allodynia, extreme reaction to touch) set off my pain. But that's very different from having a crushed leg or injured spine. We can't predict, but for many of us, the side effects make the drug intolerable.

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    • Posted

      is it true that low doses of gab do very little and you have to keep going up until you get to level that may work. the dr said she wanted to put me on a low dose but i assume if the low dose dosent help i would quickly be raised.

      currently not sure if its my neck pain causing all my issues but im having massive internal tremors/ buzzing in my legs arms along with burning in my legs, arms and a feeling if my muscles tightening even around my face. the strange thing is when i walk i dont feel alot if this. any suggestions?

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    • Posted

      Many people mention internal tremors, which I've never had. The other issue is probably also from the gab. Some people get movement disorders or neuropathy. My only suggestion is if it bothers you, get off the drug. It's common that so doctors start at a low dose and want to increase it..

      Partly because they want to see how the patient tolerates it. I don't know if it's accurate that you need a higher dose for it to be more effective. So much about the drug is inaccurate, some people sat on low doses of 300 or a bit more. Other times docs go to 3600 or more. The only real dosing recommendations pertain to epilepsy, PHN or diabetic nerve pain. Then it's usually suggested that 1800 is the maximum effective dose. Beyond that level the side effects increase, but not pain control.

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    • Posted

      babs,

      might be confusion, i havent started gab yet, but my current symptoms include internal tremors. are you saying people get those from gab?

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    • Posted

      Yea, gab can cause that. I'm sorry i got that wrong, I'm following several threads now. It was the OP who has been on gab. Other similar drugs like amytriptiline can cause that too. I've come across that phrase so often, and as I never had it I asked someone to explain it to me. It's such a specific, descriptive phrase.

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    • Posted

      As Babs said, we're all dealing with different pain sources. She seems to have the shingles pain for which Gab was created. I don't. I have congenital back issues including several herniated discs, stenosis, sciatica, and disc dessication. The pain had been easy to deal with over the years (it's all congenital and age-appropriate) with NSAIDS, but while the docs are sorting out my unrelated kidney blockage I can't take those. Fortunately I'll eventually be able to go the epidural shot route, but not until yet other unrelated issue--a DVT in my lower leg--is solved and I can get off the blood thinner Xarelto.

      The pain is very difficult to manage. My docs, knowing this is all part of a larger puzzle, are happy with my long-term use of tylenol and Ultracet. I also found some relief with flexiril, a muscle relaxant I happened to have lying around from another problem several years ago. But I'm learning to plan ahead. I know I'll be driving for over an hour tomorrow, so tonight I'll pass on my usual dance class so that I won't be sobbing in my car tomorrow. I have a couple of really good back braces and a closet full of stick-on heat patches and a freezer full of cold packs. It's a minute-by-minute effort, unfortunately. My back pain should lessen over time with the shots and with more rest than I've been able to achieve. But the periodic surgical procedures for my kidney throw my careful planning into disarray.

      Ironically, the hospital gurney is the most comfortable bed I've come across yet! LOL

      I hope you're finding a path to less pain!

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    • Posted

      USRider, totally OT, but I have to ask. "Dance class"?? Do you do ballroom dancing? I just had another competition yesterday. I feel my dancing has helped me as much, or more actually, emotionally and physically as has a doctor or any drug. Wow, a DVT on top of this? Wow. Will you need to take breaks on that one hour drive?

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    • Posted

      Actually it's country line dancing! I did ballroom for years then switched over as ballroom really demands a partner, and mine lost interest. Line dancing is solo, so I'm in!

      And you are right on point when you say that dancing is very helpful with all sorts of problems, not the least of which is balance and the emotional bonus of social interaction and lots of laughing (there's more laughing in line dancing, in case you're interested). I've been a dancer most of my life, from ballet as a small child through competitive roller dancing (yes, on skates) and repeated rounds of ballroom and line dancing. I was even a go-go dancer for a brief period in grad school. All of it was great exercise and kept my mind on things other than my health issues.

      Thanks for your kind concern. No, I don't need a break during an hour drive. My DVT is nearly resolved. I'm on a six-month Xarelto regimen that will end in about 6 more weeks. I'll be happy when that's over! Naked, I look like a mugging victim! The alternative to the bruising is that clot breaking free and killing me, so I'm fine with wearing compression socks and pants. LOL Ain't life grand? Mine has truly been a perfect storm of crap this past year.

      [I'm a 71-year-old woman, by the way, and until July was also a competitive equestrian.]

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    • Posted

      Well, I guess you're not the 47 year old, male, Harley rider than I pictured! We've done country two step and I like country music, but haven't really done line dancing. (Or maybe I have years ago, gab brain.) Years ago my husband and I did disco, then when our daughter got married 7 years ago, we tried ballroom. Despite really struggling, I loved it and after three years, I started taking private lessons, just to improve. That lead to a few simple competitions. There are only 2 or three within an hour of us that I want to do, I don't want to get to the 4 day Dancesport events, too cut-throat and expensive. I didn't really take it up until I was 58 (now you know) and I was just making some progress when I got the shingles. I had to stop lessons for about 4 months, then had to go slowly. Between the pain and the memory issues, it was a struggle. However, I love smooth, and that frame (as long as I don't over do the CBMP) is OK. Rhythm/Latin is more problematic. Dancing has helped me heal as much or more than anything.

      I don't know why there, I can continue to learn, make progress and retain information, when I struggle at times to add 5+8 or remember something 4 seconds later, literally. The gab has caused serious cognitive and memory issues for me. But on the dance floor I can smile, laugh and feel whole again.

      I'm familiar with DVT. My sister had a DVT after knee surgery. As I worked in radiology, when she told me the symptoms I got alarmed and told her she had to see a doctor NOW, not next week. She resisted at first, but thank heavens went in as they also agreed she needed an ultrasound ASAP. I think she was on treatments for 3-6 months, she was very lucky, as one had broken off and was working it's way up. My husband had to take those darn injections after his knee surgery, as he was diagnosed with A-fib right before the surgery and needed a bridge medication. Wow, you have definitely had a horrible year. I'm glad you can still dance. It's been nice getting to know you.

      Sorry everyone else, but I've had a REALLY bad two days, so I appreciate this break. USRider, I'll send you a message on your email system here.

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