I am currently taking 300 mg/twice a day for general body pain. I sleep better and it puts me at medium. I have manic-depression. So far I am very pleased.
@ubelinda It very well could be. Gaba affe ta everyone very differently, based upon tolerance. I used to work with a girl who would be put to sleep by only 100mg/day, whereas I was taking 2400mg/day and could fully function w/o being the least bit drowsy. Gaba is such a catch-22 drug, honestly...it's a constant love-hate relationship for me 🙂
I've been taking 3200mg per day of gabapentin and the maximum dose is 3600mg per day for at least 15 years. I just turned 61 (I had seizure in June 2011 that required me to be on a ventilator for 3 days and lost my memory of the beginning of 2011). My point is that I was started gabapentin because it can treat many conditions like seizures,neuropathy, fibromyalgia, pain, and other conditions. They increased my dose to prevent further seizures (which I haven't had another one since) which stumped the doctors- they ran every test possible - but they never could give me definitive answer; they suspected a drug overdose which it was not.
I understand that as we age memories, forgetfulness happen but I was always told that it was a safe drug. I had aphasia, speech,and profound loss of memory that I attributed to the seizure, but over time these symptoms have gotten worse and when I started researching what can cause aphasia, and drugs that can cause increased symptoms above AND DEMENTIA as well as other psychiatric and physical side effects. Now I'm not saying you shouldn't stay on it but make you let your doctor knows all the medications/conditions you have (because other medications mixed with gabapentin can possibly cause problems -I take 13+ different medications and since I've been on gabapentin for such a long time, I want talk to my doctor about it my medications more closely)don't stop taking cold turkey because it can cause some dangerous reactions. This is MY experience and I just chalked up my symptoms to the seizure 15 years ago. I'm not a doctor -I have asthma and my daughter was born with asthma and the medications I was taking was different than her medications. Since I was not comfortable with my 6 week infant's drug regimen and so I went to college and became a respiratory therapist. Doctors treated me differently once I told them I was respiratory therapist; they felt more at ease to discuss her condition.
I'm sorry if I drifted into places that didn't seem to relate to neuropathy and gabapentin but I wanted to tell you or anybody that reads this is to be your own patient advocate - ask questions and make sure the doctor gives you all answers you need to feel educated about medications or conditions.
I have a pain pump but I'm considering a SCS (spinal cord stimulator as well.
@blazer6I5 I am currently on lyrica which is even stronger than gabapentin and it has side effects that affect the bladder. So I am trying to go off of it and switch to LDN which has low side effects, Check out LDN or called Naltrexone. Not all docs are familiar with it but it is worth a try, good luck!
I've been taking 3200mg per day of gabapentin and the maximum dose is 3600mg per day for at least 15 years. I just turned 61 (I had seizure in June 2011 that required me to be on a ventilator for 3 days and lost my memory of the beginning of 2011). My point is that I was started gabapentin because it can treat many conditions like seizures,neuropathy, fibromyalgia, pain, and other conditions. They increased my dose to prevent further seizures (which I haven't had another one since) which stumped the doctors- they ran every test possible - but they never could give me definitive answer; they suspected a drug overdose which it was not.
I understand that as we age memories, forgetfulness happen but I was always told that it was a safe drug. I had aphasia, speech,and profound loss of memory that I attributed to the seizure, but over time these symptoms have gotten worse and when I started researching what can cause aphasia, and drugs that can cause increased symptoms above AND DEMENTIA as well as other psychiatric and physical side effects. Now I'm not saying you shouldn't stay on it but make you let your doctor knows all the medications/conditions you have (because other medications mixed with gabapentin can possibly cause problems -I take 13+ different medications and since I've been on gabapentin for such a long time, I want talk to my doctor about it my medications more closely)don't stop taking cold turkey because it can cause some dangerous reactions. This is MY experience and I just chalked up my symptoms to the seizure 15 years ago. I'm not a doctor -I have asthma and my daughter was born with asthma and the medications I was taking was different than her medications. Since I was not comfortable with my 6 week infant's drug regimen and so I went to college and became a respiratory therapist. Doctors treated me differently once I told them I was respiratory therapist; they felt more at ease to discuss her condition.
I'm sorry if I drifted into places that didn't seem to relate to neuropathy and gabapentin but I wanted to tell you or anybody that reads this is to be your own patient advocate - ask questions and make sure the doctor gives you all answers you need to feel educated about medications or conditions.
I have a pain pump but I'm considering a SCS (spinal cord stimulator as well.
@blazer65
I was reading your post and wanted to tell you a bit about my experience in case it helps. I have also had SFN, for me about 20 years now. I have been on Gababpentin since nearly the very beginnig, starting with a mild dose and titrating up to 3000mg a day at one point. I have since dropped the dosage to 1800 a day and hope to keep decreasing it. That drug has been a real lifesaver for me but I really wasn't aware of the link to dementia etc until relatively recently. This is why I really want to cut down even further because I am functioning pretty well on the current dose. Yes I'm more tired than I once was and I definitely have some of the cognitive delays and aphasia but it is better at 1800 than it was at 3000!
I also have some miserable spine issues too and in the past 4 years have developed an intense pain on my rt inner thigh and groin. I've had injections which really helped but they're not lasting very long anymore. I also had a total hip replacement after the doctors thought that the torn labrum and arthritis might be responsible for the pain. It didn't help at all 🙁
So. I had an Abbot SCS implanted on 12/12 hoping it would help. When I had the trial it didn't help the neuropathic pain in my feet/legs etc but I did get some relief from the groin pain. Now that I have the permanent one the opposite has been the case for me. There are quite a few settings and I'm not necessarily giving up hope yet. If it helps the neuropathy then I will consider it a win even though I'm back to square one so far with the groin pain (the thought is that the obturator is compressed/damaged somehow so I guess that's the next thing to try. Or acupuncture. Or Myofascial release. I'll try anything, really).
That's really all I wanted to tell you. Sometimes the SCS can really make a difference, I've heard many stories of mixed results and my experience didn't go at all the way I expected either. I hope this was helpful!
@ubelinda It very well could be. Gaba affe ta everyone very differently, based upon tolerance. I used to work with a girl who would be put to sleep by only 100mg/day, whereas I was taking 2400mg/day and could fully function w/o being the least bit drowsy. Gaba is such a catch-22 drug, honestly...it's a constant love-hate relationship for me 🙂
@ubelinda My only questions for you would be first: 1) How long have you been at 600mg/day? And, 2) Did you jump from 0-600, or gradually go up? Only reason I ask - it shouldn't be a problem - is that Gaba comes with withdrawals w/o weaning off properly. Additionally, you have to be really careful with rapid acceleration / deceleration. However, I've found personally (and heard this affirmed from many others) that if you haven't been taking it very long and are under a certain mg (usually ~800) that there should be little-no withdrawals at all. Early in my days of taking it, this was true for me. But, as I sustained higher mg's for longer periods, I now have to go *very slow* to come down on it. This is my 3rd attempt at coming down off it, and even now, I have to go doubly slow (originally, it was 200mg/2wks and now, 200mg/4wks). I ran into ugly withdrawals the first few times simply bc I was spacey and would forget to take it, but later it was because of this very reason. I thought rapid deceleration wouldn't be a problem, but it was. (And, I'm talking "rapid decel" as in X number of mg over a 24-hr period, not all at once) I hope this makes sense ... Good luck to you, regardless!! 🙂 YW!
I am taking Gabapentin for notalgia paresthetica (itching in scapular, shoulder, upper arms and rib area from neuropathy (spinal stenosis, cervical fusion C5-70). I am not up to 400mg. 3x/day for 1 month and can't go any higher as it cause me to have hyponatremia (low sodium). I have tried all of the treatments, Massage, TENS, PT,etc. Does anyone have experience with this?
Thanks.
Connect
Connect
Like
Helpful
Hug
I am currently taking 300 mg/twice a day for general body pain. I sleep better and it puts me at medium. I have manic-depression. So far I am very pleased.
@ubelinda It very well could be. Gaba affe ta everyone very differently, based upon tolerance. I used to work with a girl who would be put to sleep by only 100mg/day, whereas I was taking 2400mg/day and could fully function w/o being the least bit drowsy. Gaba is such a catch-22 drug, honestly...it's a constant love-hate relationship for me 🙂
-
Like -
Helpful -
Hug
3 Reactions@blazer6I5 I am currently on lyrica which is even stronger than gabapentin and it has side effects that affect the bladder. So I am trying to go off of it and switch to LDN which has low side effects, Check out LDN or called Naltrexone. Not all docs are familiar with it but it is worth a try, good luck!
@blazer65
I was reading your post and wanted to tell you a bit about my experience in case it helps. I have also had SFN, for me about 20 years now. I have been on Gababpentin since nearly the very beginnig, starting with a mild dose and titrating up to 3000mg a day at one point. I have since dropped the dosage to 1800 a day and hope to keep decreasing it. That drug has been a real lifesaver for me but I really wasn't aware of the link to dementia etc until relatively recently. This is why I really want to cut down even further because I am functioning pretty well on the current dose. Yes I'm more tired than I once was and I definitely have some of the cognitive delays and aphasia but it is better at 1800 than it was at 3000!
I also have some miserable spine issues too and in the past 4 years have developed an intense pain on my rt inner thigh and groin. I've had injections which really helped but they're not lasting very long anymore. I also had a total hip replacement after the doctors thought that the torn labrum and arthritis might be responsible for the pain. It didn't help at all 🙁
So. I had an Abbot SCS implanted on 12/12 hoping it would help. When I had the trial it didn't help the neuropathic pain in my feet/legs etc but I did get some relief from the groin pain. Now that I have the permanent one the opposite has been the case for me. There are quite a few settings and I'm not necessarily giving up hope yet. If it helps the neuropathy then I will consider it a win even though I'm back to square one so far with the groin pain (the thought is that the obturator is compressed/damaged somehow so I guess that's the next thing to try. Or acupuncture. Or Myofascial release. I'll try anything, really).
That's really all I wanted to tell you. Sometimes the SCS can really make a difference, I've heard many stories of mixed results and my experience didn't go at all the way I expected either. I hope this was helpful!
-
Like -
Helpful -
Hug
1 Reaction@rivermaya34 Thank you for your input! Will try a different less dose.
Blessings.
-
Like -
Helpful -
Hug
3 Reactions@ubelinda My only questions for you would be first: 1) How long have you been at 600mg/day? And, 2) Did you jump from 0-600, or gradually go up? Only reason I ask - it shouldn't be a problem - is that Gaba comes with withdrawals w/o weaning off properly. Additionally, you have to be really careful with rapid acceleration / deceleration. However, I've found personally (and heard this affirmed from many others) that if you haven't been taking it very long and are under a certain mg (usually ~800) that there should be little-no withdrawals at all. Early in my days of taking it, this was true for me. But, as I sustained higher mg's for longer periods, I now have to go *very slow* to come down on it. This is my 3rd attempt at coming down off it, and even now, I have to go doubly slow (originally, it was 200mg/2wks and now, 200mg/4wks). I ran into ugly withdrawals the first few times simply bc I was spacey and would forget to take it, but later it was because of this very reason. I thought rapid deceleration wouldn't be a problem, but it was. (And, I'm talking "rapid decel" as in X number of mg over a 24-hr period, not all at once) I hope this makes sense ... Good luck to you, regardless!! 🙂 YW!
-
Like -
Helpful -
Hug
2 Reactions@mikead63
Did the gabapentin help with symptoms? Thx 🙏
@cbartonsandiego
Gabapentin, now at 1500 mg s day, down from 2400 mg a day, definitely helps my mild diabetic neuropathy, mainly intense tingling in one foot.
The problem is side effects: balance, spaceyness, tiredness. Reducing dosage helped a lot but has not entirely eliminated side effects.
-
Like -
Helpful -
Hug
2 ReactionsI am taking Gabapentin for notalgia paresthetica (itching in scapular, shoulder, upper arms and rib area from neuropathy (spinal stenosis, cervical fusion C5-70). I am not up to 400mg. 3x/day for 1 month and can't go any higher as it cause me to have hyponatremia (low sodium). I have tried all of the treatments, Massage, TENS, PT,etc. Does anyone have experience with this?
Thanks.
@cleveland26 I stopped taking gabapentin recently because it’s said to cause dementia 😫