Gabapentin for Neuropathy
 

Is there anyone, here, who has used Gabapentin for neuropathy? My neurologist has said that he would prescribe this for me if needed, i.e., if I feel that my neuropathy is more than a "nuisance"! If just a nuisance, I may want to consider NOT taking a medication that can have undesirable side effects. I would just like to know from any of you who have taken...are taking Gabapentin whether or not it has been helpful...whether or not the side effects were not tolerable. I understand that each of us is different...what "works"for one may not "work"for another...but, with some input, here, I might be able to make a wise decision about taking Gabapentin.

Thank you...I would appreciated any information that you might be able to give me to help with my decision.

Virginia Therese

I have been on it for five years. I have severe pain and weakness, hereditary neuropathy, so it is not my only pain medication. It helps with the burning and electrical zapping feeling, and it helps me sleep. I am on 600 mg. x 3.
I have not had the weight gain or brain fog that many experience, but I have had some blurring of my vision, for me the benefits outweigh the drawbacks. I do notice if I miss a dose. Many people have trouble with it.
Are your symptoms more than a nuisance? If not, you may want to put this one off for now.

Just read your other posts- if you are experiencing pain rather than burning Gabapentin may not offer any relief.

gabapentin has actually helped my pain and burning quite a bit. 1800 milligrams a day but it does make you hungry so drink lots of water

Gabapentin relieved my pain, but the dose had to be increased every month or two, as I quickly grew tolerant of it. By the time I was at 600mg x 4 daily, I was cranky and walking around in a cloud and spaced out feeling. I'm presently taking a low dose of Nortriptyline, (anti-depressant) which I've been able to tolerate better. That too, hasn't helped with the pain part much. Your Neuro should give you no problems prescribing it, if you want to try it out. Also been using a Capsaicin cream on the bal of my feet, which helps, but some are saying now, that it may prevent healing. Dr has been trying me out on Tramadol, up to 50mg x 3 daily. I've only been taking 1 - 50 mg pill 3 x a week and does a pretty fair job of relieving the pain for up to 10 hours for me, during the day. Only trouble with Tramadol is that it can become habit-forming, so am hesitant to use daily. At least I know I can pretty much count on decent days when I take one. I have almost no pain or discomfort at night, so far, thankfully, which may be due to the Nortriptyline. I "came down" with Neuropathy about 3 1/2 years ago, but didn't get diagnosed or take meds for it for more than a year. I got tired of the "folded sock" feeling

my Nortriptyline side effects: A bit of constipation, sweat more easily, some nervousness, initially. Tramadol side effects at one daily: a bit lightheaded initially, but not so much after having taken it a half dozen times or so.

what the heck is it with gabapentin and getting use to it no time. I get an increase and I feel better and then a few weeks later I need an increase. Oh well.

Good morning Virginia :)
 

You will find many folks here on Gabapentin. It is the go-to drug for Neurologists. I was on 1800mg/day but found the constipation intolerable. I switched to Gralise, an extended daily release.

If your pain is at the nuisance level, you may only need a small amount, such as 100mg/day. At that level the side-effects are minimal, but increase as you increase dose. You will likely be started on that dose anyway.

Most folks find they need to increase the dose as the effects stop working. Eventually they find a plateau that works. Empirical evidence is most folks here plateau at 1800mg. I think there is a study measuring and concluding that.

I used to and now like dac122 I also take Gralise. My only side affects from the gabepentin was the foggy feeling. Now that I only take it once a day and before bed I no longer have that feeling. Rarely if needed I take a gabepentin in the evening if I'm having a bad day.

The highest dose I was on was 1,800mg now I am on 1,200 mg.

Good Luck

Have been diagnosed with Fibromyalgia & have been prescribed Gababentin, slowly upping the dose per doctor's recommendation......take now 2400mg at night....sleep like a baby.
take Duloxetine in the AM. Don't like taking this stuff but will see how it goes long term.

chloecasey

Neurotin
 

I take as my dr says a baby dose since I started it and maybe don't really need it yet I don't want to go off as my body is used to it I take 2-100 pills at night I have tried to go to 300 I just can't get out of bed with too much fatigue if take that much my dr wants me to go up to 600 and take during the day... no way...I can get used to it I am drug sensitive so those taking as much as they do they are lucky as when I get bad pain with this I don't know what I will do.

I have a low dose (100 mg capsules) on hand, and I might use them if I hadn't had such good luck/results with R-Lipoic Acid and B5. If you've tried all the supplements to no avail, it may be worth trying. I also feel doctors tend to prescribe it (initially) at too high a dose (on the recommendations of BIG PHARMA).

Be aware that it may address some types of PN pain, but not others, and only helps about 30% of patients who try it. It will do nothing for the numbness.

Doc

I don't know how the pharmaceutical execs sleep at night. I read an article in a very reputable paper that they pay people in india next to nothing to be guinea pigs for the drugs before they get to us here. many have died or worse. no way to sue because of signed contract and no arrests. I don't want to feel better from a drug at someone else's expense. but unfortunately I guess I am.

Consider the alternative—taking a new drug without benefit of human trials. You would BE the human trial. It's going to happen sooner or later. As long as patients are fully informed of potential risks, I think it's a necessary evil. The real crime is if they're testing on people unknowingly or without full disclosure—e.g. MKUltra, et al.

Never mind India— Unethical human experimentation in the United States

Doc

I'm reading about mkultra now. it's horrifying. I get the suspicious feeling that pharma probably does things we don't know about but it is what it is. life has never been fair I guess. thanks for the good read

Neurontin was tested off label on millions
Of patients off label for pain and bipolar.

Pfizer paid a huge fine over this experiment.
The sales reps even sat in on patient cosultations
To help doctors choose candidates for this
Illegal activity.

You can find many Google sites discussing
This.

Today the results of this experiment reveals
that only about 30% of pain patients find
Effectiveness with Neutonin/gabapentin.

Morning Dr. Smith :)
 

I've been using Gabapentin for my Neuropathy for about 3 years now. I am on 3600M a day. Always in a Fog, have had the weight gain, and other side effects.. but better than the pain. Message me for more info if you want.
(Started at 800 a day) those were the days.

Gabapentin or not
 

Thanks to all of you who responded to my request related to Gabapentin. I have always been extremely reluctant to take ANY medication...and this one is no exception...and, in fact, I actually am fearful about taking it. From what I was able to determine from your responses, it's a question of getting some relief with the possible issue of uncertain and unpleasant side effects...something that I'll have to wrestle with. Susanne C...if symptoms seem to be just a nuisance, I may want to put Gaba off for a while. I discussed this with my new internist this past Tuesday, and she more or less agreed w/this...even suggested that I start w/Tramadol for pain (but, to be very careful about constipation). I was given Tramadol when I was in the hospital in January for a broken hip so that wouldn't be new to me and I just might feel more comfortable using something more familiar to me than the Gaba. Groucho...you mentioned Tramadol, too. How does that "work"for you? You also mentioned "decent days"...that's exactly how I would describe my days at this point, Groucho...so thankful for "decent days"...just wondering if I should consider these to be just "nuisance days"...but, then, when I do have the burning, pain and stiffness, I probably should consider trying the Gaba. Maybe I'll just start using the Tramadol to start. As you can see, I have a dilemma. Dac122 and Mike K. switched to Gralise...had been taking Gaba...how would you compare it to Gaba? Effectiveness? Side effects?

Again, thank you to all...Susanne C, Markneil 1212, Groucho, Debi, Dac 122, Mike K, Cholecasey and IllPn (hope I didn't omit anyone)...I appreciate the input from all of you...now, I just have to decide what I should do. If the pain and burning becomes intolerable, I guess I will just have to opt to try the Gaba. I have been suffering with this for 2 years...had an internist who did nothing to pursue it...told me it was arthritis...and, when I asked if it could be Neuropathy, his response was: "Yes..it could be, but there's nothing you can do about that." I should have moved on to another internist at that time. I just hope this hasn't gotten such a "hold"on me that there will be very little that can be done for me. I have read that if/when this is "caught"early, the chances for getting relief are better. Hopefully, I will still be able to get some relief. I also hope that all of you will get the relief you need.

Thank you...Virginia Therese

has increased my appetite very much and has made me drowsy but it certainly worth it to not wake up and horrifying burning pain. But that is my situation thank you

I didn't tolerate neurontin well. I take Lyrica right now, though would gladly swap to someting else if it offered close to 3/4 of the relief. The side effects are tolerable for me with how bad the electric nebulas (how I think of them) randomly zapping in my legs, light burning sensation (compared to what others have documented) can be.

I continue to gravitate toward any potential natural or OTC relief I can find. But a full time job and two kids under 10= find something that enables better function with minimal side effects. Thankfully for me Lyrica is not the horror show of side effects it is for others. I take tramadol as needed, which lately is more than I care for.

As always, results may and probably will, vary.

Jon

past injustice this is done by the makers of gabapentin were wrong. But what only matters now if it if it works for you or not. It doesn't make sense to look back on what the company should have done or should not have done. It works really for me

Still Debating
 

Even with all of the great replies from all of you, I am still debating using Gabapentin...what a chicken I am!!! Yesterday, I was really tempted to try it because my pain was quite severe...definitely, not just a "nuisance"...but, I got through the day w/out resorting to asking for the Gaba. Today, started with a lot of pain and stiffness, but, as I continued to move around, I felt much better...so, once again...I declined asking for the Gaba. I do have the Tramadol for pain, but, I am reluctant to take that, too, because of the constipation aspect. I had such a terrible experience with constipation while in the hospital after my surgery for a fractured hip that I can't seem to bring myself to take it. The constipation was so extreme that I eventually had to see my gastroenterologist to try to get some relief...once again, what a chicken I am! At this point, you must be thinking...the pain must not be too severe if she can resist taking something that could help her. I've always had a high level of pain tolerance, although, I beginning to think that this is changing for me. Thanks to all, again, for doing what you could to help me. Oh...just one more thing...a few of you "switched"from the Gaba to Gralise (sp?) I had asked what difference you felt...both related to effectiveness and side effects. Thanks, again...hope all are finding some relief...

Virginia Therese

No one here thinks that you are a "chicken". Most small fiber neuropathies are extremely painful and large fiber ones can be crippling- everyone here suffers. The medication is a trade off. Most people would never want to think about spending twenty-five or thirty years on opiate therapy but that is what I fully expect to do, short of a breakthrough in pain management. The pain would destroy any quality of life I could have otherwise, and hereditary neuropathy is progressive and incurable.
I understand about the fear of constipation. I have had a lifelong battle with it, resulting in such severe fissures that I was writhing in pain, spending half the day sitting on ice packs. The nastiest doctor I ever met, a gastroenterologist, finally said that I should take miralax regularly and although it took eight months the fissures finally healed, which just shows that you can learn from anyone.I have had to increase the dosage somewhat over the past five years but I have not had any recurrence of the pain even with my medication.
It is a very personal decision, but you can always stop taking the Gabapentin if it disagrees or you find it of limited benefit. If the tramadol helps you should use it. A fear of medication or treatable side effects like constipation can result in a decreased quality of life if carried too far.

It all depends on where you stand (or sit ir recline, I suppose) Virginia, but chicken? I'd say strong, in many ways.

For quite some time I was waiting to take tramadol on bad days to 'see if it gets better.' Many of those days by the time I took tramadol it offered little to no relief. I couldn't 'catch up' to where the pain went.

I don't share this in an attempt to push ingesting medication, rather to highlight the time and place aspect.

I wish you the best of luck.

Jon of the KN variety

yeah.. youre a real chicken. you should do what I have done for 30 years. take every pill handed to me haphazardly, survive three brutal interactions that have left me a mess and then take new pills to combat the results of those iteractions when I was never really sick in the first place lol
you are the smart one. gabapentin might be one of the more harmless drugs. but I admire your smarts in being careful

Gabapentin Dilemma
 

Many thanks to those of you who are still attempting to help me. Susanne...I found your statement, "a fear of medication or treatable side effects like constipation can result in a decreased quality of life if carried too far"...so well stated...so logical...and even helpful...thanks...

and KnowNothing...your title doesn't "fit"you very well...you offer some sage advice as do all of you. I will try not to bother all of

you anymore until I've made a decision. I'd better work fast, though, because I will see my new internist in a few weeks, and she will certainly ask me about my decision...Gabapentin or not...and, too...whether I have taken the Tramadol for pain...I HAVEN'T!!! I AM SO A CHICKEN!!!

It's so good to be here with all of you.

VT

Please don't ever think that you are bothering anyone! Those of us who read the forums regularly do so with the hope that we can help someone whose experience resonates with ours. We represent a wide range of conditions and severities. Neuropathy is a disease that is often elusive of diagnosis and treatment, sometimes incurable, progressive, and crippling. We get less support from doctors and are in more pain than many other chronic illnesses. Forums like this one help each of us to feel less alone. I have learned a lot from this forum over the years, and it has helped me understand what is going on and to plan for the future.
Don't stop asking questions and keep us informed. Honestly ask yourself if there are things that you are missing out on in life because of the pain, things that you otherwise have the strength to do. Quality of life is the whole purpose of pain management. Do not limit yourself to the things that you feel obligated to do. Things that you enjoy most should come first even if they never have before.
Good luck.

I recently started on gabapentin because of constant abdominal/flank pain, discomfort or nuisance, Im not even sure what to call it cuz it feels so vague and deep, I cant even describe even though Im analyzing my pain every min of the day. because it feels really deep and slight sensation of burning which makes me think maybe its nerves. So I got prescription for gabapentin from walk in, if it would help with pain then I can confirm its nerve pain since my doctors cant tell me and also saying there is no test for it.
So far I dont find it working for me. I even took 3 capsules twice but still the discomfort and mild burning is still there, the only thing I find after 3 capsules is slightly sleepy and dizzy and not wanting to care about pain. But im not sure my pain is nerve related yet, it could be kidney since I had surgery done on it, only thing helps is percocept.
Anyone knows if opiates help nerve pain?

I created the user name during a viewing of Game of Thrones. While the show brought me to the novels, the novels are what I prefer. Jon Snow is one of the characters. Another character chides him constantly with "You know nothing, Jon Snow". Viola.

He is my 4th favorite character at best in A Song of Ice and Fire. But I share a spelling. So I registered as such.

It is certainly more true than the opposite. ;)

Jon

Very Sage Advice
 

Susanne...thank you for your always encouraging words. How true it is of me NOT to seek what makes me happy...always just "fighting my way" through life. I've been told so many times that I "think too much"...and so it is...I think too much and much too deeply. I find myself going beyond what the "ordinary"person would think...a blessing, at times in that I seem to be able to foresee things "down the road"that others never think about and have been able to avoid undesirable issues...for me and for others. I think I'm digressing, now...just wanted to give you some idea of the kind of person I am. I have been a perfectionist all my life...neither good for me nor others in my life. I think this follows through in my interaction with doctors. For the most part, they just don't satisfy my questioning mind. For example...right now...I'm kind of "treating"myself with the neuropathy, i.e., experimenting and discovering what "works"for me...even to the point where I've been fairly successful in using ice bag "treatments"for the pain and discomfort...just not wanting to use medication if I can function w/out it. As I think I've mentioned, I would NOT want to be MY doctor...I'm a very difficult patient in that respect. To date, I have taken no medication that my new internist prescribed...should be a "fun"visit next time!!! The newest thing with me is the waking up at night with my entire body burning...now, I've almost succumbed to taking pain medication for that...but, not yet. At my last visit with the internist, she more or less implied that many people with PN feel the most pain at night. That had not been the case with me...until very recently...since I saw her...so, I will mention this to her. I am happy to say that I've had a few more "good days"recently...and, I've wondered if the B/12 injections factor into this...I've had just two. I wonder if it's even possible that this has helped within such a short space of time and only 2 injections...although, the internist had asked me to call her w/in 2 weeks of the first injection to let her know if I felt better. I thought that might be an indication that, yes, it COULD "work"that quickly. We'll see. I will keep you updated on my "saga"...and believe me...I never intended to go on and on at such great length with this reply...but, it just may give you some insight into who I am and what makes me "tick". Thank you, again, Susanne for your caring and support. I am happy to have found this forum...and you.

V

Disagree with your assessment of YOU
 

Jon...I disagree with your Know Nothing assessment...and that certainly it's better than the opposite. You need to stop putting yourself down and discover that you do have something to give...that you DO know something. Now, that's my verbal lashing for now. Please continue to post. I'll let you know if/when I've determined that, indeed, you've earned the title "Know Nothing"!!!

V

Suzann..great post. Virginia..i cant believe you wake up with the burning too!! it sucks!!! the gabapentin has helped with that and my tremors but I really hate waking up burning!!!! I wonder why that happens.

I Wonder, Too
 

Markneil...I will attempt to get an answer to our question about the night burning. Interestingly, at my last visit with my internist, she asked if my discomfort/burning occurred mostly at night...I could tell that she expected me to say "yes"...apparently, many of her patients have had this experience. It's just recently that I've been awakened with the burning...really quite painful...so, will see if the will urge me to take the Gabapentin. I am so bad about taking medications that I haven't even taken the Tramadol that she suggested I try if reluctant to take the Gabapentin. I will say, though, that I was very tempted to take the Tramadol when this burning occurred. I do not have a lot off burning during the day, thankfully...although, I'm not quite sure what my choice might be if I had one...burning during the day or at night. I'll see what she says abaout all this and will get back to you after I see her. I'll add this to my list of questions for discussion.

Have I mentioned, here, that I find sitting on ice seems to help with the pain and discomfort? However, today...one of the ice bags that I had been using leaked...never happened before. It just might be that I sat on it too long. It's a rather large one that seems filled with whatever it is they use in the bags. I probably should use a frozen bag of peas or something of that nature...believe it or not, I have done that when I didn't have an ice bag handy!!!

Take care...V

Do you still have constipation with Gralise? I am thinking of switching to it, but I had the same issue you did with Gabapentin...

Welcome JessRod. :Wave-Hello:

Radioactive iodine for hyperthyroid
 

I'm sorry you had the procedure of radioactive iodine to treat your mother's hyperthyroidism explained to you in such an inappropriate way. Yes, her thyroid would no longer function, that was the object of giving the radioactive iodine. I was practicing in hospitals in the early 60s and I never heard anyone told to never have children because of "deformities". Your mother did not stay radioactive after the treatment. And the short time she was, wouldn't cause any permanent problems. Someone sure did a bad job of informing you. I'm sorry it affected you and your family so much. Maybe your parents were just afraid to have another child and the treatment. If you don't like this, just erase it.

Gaba experience
 

Hi Virginia, I started @ 300mg/d and did not feel any different, went to 900mg/d and still feel no different. I may have increased my appetite some and am starting to,maybe be a little more forgetful, but the pains are still controlled mostly with Hydrocodone-10-325. Good luck as it seems you can get a different story from everybody. Ken in Texas

My Dr. says it is all nerve pain
 

Hi Upjo, I had a car accident and have lumbar pain, hip, knees, muscle wasting plus what I call PN pain. the burning, zapping, tenderness, etc in the knees down area. I feel that the knee and up pain is frome the accident and the knee down stuff is Neurapathy. He says it is all nerve pain and Yes, Opiates help w/ the knee and up pain. I take Hydrocodone 10-325 twice daily. Before I started doing this I could not stay still. I could not tolerate more than 30 miles in a car. I seperated the pains in my mind because they seem so unrelated. One is deep and crippling as the other seems more near the saurface of the body but just as maddening. The pain meds helped me but I needed a regimine for constipation control. After some real misery and help from this forum I settled on two Colase every time I take a pain pill plus Miralax at night. Wish you luck, Ken in Texas

Neurontin definitely helped my head and spine burning and pressure a lot. wen I don't take it the pain returns in a day. I am a big pessimist when it comes to pills, but this is the real deal for me.

bran injury caused all these darn problems, I don't know if the difference in cause of pain matters or not...

Does anyone know about real numbers with Lyrica?
Thank you.