Gabapentin, Lyrica, Neurotin
AnonymousOctober 30, 2008 at 8:13 pm
I wanted to get a few opinions regarding the medications listed above. Thanks to the people on this website, it dawned on me that I should probably see a Neurologist, especially as I haven’t been to one since 1992 (yikes).
My appointment with the Neurologist is next week and I wanted to mention these medications.
I googled Neurotin and one of the possible side effects was swelling of the feet and ankles. That would be a big problem for me as I’m already having swelling issues (my internist hasn’t been able to pinpoint the reason and I’ve had numerous tests).
Has anyone had swelling issues with Lyrica or Gabapentin?
I’m aware that the side effects can vary per person, but honest to Pete, every time I take medication and it has “may cause weight gain” or swelling of feet and ankles, those are the two side effects I get. 🙁
Any information you guys can share would be greatly appreciated.
AnonymousOctober 30, 2008 at 10:17 pm
Hi Tina, you are right meds react differently with everybody. Neurontin and Gabapentin are the same drug, Gabapentin is the generic form of neurontin. Lyrica is a sister drug to neurontin. These meds are good for nerve pain. I use gabapentin, and I have no side effects to it, which is totally out of the ordinary for me-I react to everything usually. So it really is an individual thing. I have swelling of unknown causes, but I’ve had it long before I was put on gabapentin. My swelling is different everyday. just one of those things you live with. It is wise to talk it over with your dr.Take care.
AnonymousOctober 31, 2008 at 4:24 am
I have taken Gabapentin (Neuronton)for years!! 1600 3200g per day…………..and no problem at all (makes me a little sleepy sometimes), but that is not a bad thing.
And, like everyone else has said………..everyone reacts differently. I haven’t really heard too much about it causing swelling of feet,etc.
My neurologist encourages me to take more Neuronton, and less Vicodin.
So she must not be concerned with any negative side effects of Neurontin.
Check with you neurologist next week. Sounds like you have a good Dr.:)
AnonymousOctober 31, 2008 at 7:53 pm
Thank you guys so much for responding. I may be putting the cart before the horse as this will be my first visit with the Neurologist. Hopefully he can give me something to relieve the burning knee pain as well as the back pain. I walk quite a bit at work and the pain is beginning to take a toll.
I can ask my employer to accomodate me, but I’m trying to hold off as the pain is not only affecting me at work, but I’ve seriously curtailed events outside of work. I’m very boring these days. 🙁
Hope everyone has a great, pain free weekend!!
AnonymousNovember 1, 2008 at 12:41 am
Tina, I tried Gabapentin and although it did work for the pain, my hands and feet were swelling so badly I could barely put my shoes on! I also found it cause me to gain weight (16 lbs in 3 months) so I have gone off it and am trying to manage the pain in other ways.
AnonymousNovember 1, 2008 at 3:36 pm
[QUOTE=jan’83]Tina, I tried Gabapentin and although it did work for the pain, my hands and feet were swelling so badly I could barely put my shoes on! I also found it cause me to gain weight (16 lbs in 3 months) so I have gone off it and am trying to manage the pain in other ways.[/QUOTE]
Ahhh….that’s what I’m afraid of. Thanks for the “warning”, Jan.
My feet and ankles have been swollen for months (I believe the swelling was a side affect of Celexa and then Klonopin which my doctor prescribed as I had a sudden unexpected loss in my family and had problems coping). I weaned myself off these meds as my feet were so swollen (especially the left foot) and made sure I had Valium available to deal with the other “issues”.
My doctor sent me for quite a few tests (Echo, EKG, kidney function as I only have one kidney). She even upped my diuretic, but the swelling and weight gain is still here.
I finally realized that I was going to have to buy shoes, 1/2 size larger, which I did earlier today. What a relief!! But, I still want the swelling to go away.
If I may ask, can you share some of the other ways you’re managing your pain? If you want to post them, pm me or decline, I absolutely understand.
AnonymousNovember 1, 2008 at 8:12 pm
I have been taking neurotin for 3 years now…..even before getting GBS I have had no side effects except it does make me alittle sleepy sometimes. It is a life saver. I have tried to not take it and there is such a big difference. My suggestion is to give it a try. I call it “the wonder drug”
AnonymousNovember 1, 2008 at 8:48 pm
Sherry [QUOTE=Well this is my second post and I don’t know if it is normal to be so depressed with this GBS,It has been about 8 weeks since I got GBS. I am walking with a walker and it is hard to get around. I don’t drive but do have a great friend that tries to get me out on the week-ends. Is there anyone that can tell me how to get out of this “funk” that I am in. I know it can and could be worse…..I don’t like feeling sorry for myself. It is such an odd syndrome. ANY IDEAS? “[/QUOTE]
Thank you for sharing your Neurontin experience. I’m sure I may have to try a few different medications before I find one without horrid side effects.
I think it’s normal to be depressed as GBS can be a life altering event. It’s like your whole “routine” has to change to accommodate your limitations and that can be very depressing. I would suggest you speak with a therapist or social worker. My doctor prescribed Elavil as it helped with the nerve pain as well as the depression (I’m sure they probably have other medications these days as I had GBS in 1991).
I want to congratulate you on using a walker 8 weeks after GBS. That is a blessing.
This forum is such an inspiration as well and everyone is very helpful.
Remember, take it one day at a time, which is all we really can do. Smile whenever you do something that you couldn’t do the previous day, week, or month.
AnonymousNovember 5, 2008 at 3:48 pm
I’ve attempted all three medications at one point or another.
Currently I’m only taking a low dosage of Oxycontin for pain.
My neuro and I meet every 60 days and discuss options, and I have attempted several times to wean off and try something else, however I am still trying that to this day occasionaly.
When I miss a dosage, I definatly know about it, even subconsciously in a couple of hours, feet start getting hotter, and warm up. Tingling starts and throbbing ensues shortly thereafter.
AnonymousNovember 7, 2008 at 10:09 am
Thank you for the encouragement. It is hard for me because my partner seems to think I should be better and I feel like I am letting her down at times. She also has some health issues but I cannot help like I did before. I think that adds to my stress. I will talk to the Dr. about all of this. Thanks everyone!
AnonymousNovember 7, 2008 at 10:13 am
I am on methadone and do not like to take it either. I have tried not to use it and the pain is just to much. My legs feel like I have a steam roller going over them at times. I am thankful for each breath I take ……but at times wish that things would progress faster. Not good at the waiting process but then maybe there is a lesson to be learned there.
AnonymousNovember 7, 2008 at 11:06 am
It is very normal for anyone that goes through a life changing experience
to go through depression. Many of us take medication that helps us. I am just over a year with GBS and still taking paxil for my depression. Doctor said he may start weaning me off of it my next appt. in March.
If you are not taking anything, you should talk to your Dr. about your depression, see if Dr. will give you medication for depression. If you are on medication for depression, the Dr. may need to increase dose or change medication for you. It is important that you talk to your Dr.
You are so new to GBS and that is when depression got to most of us, in the early stages.
Read “The spoon Theory”, But You don’t Look Sick?
go to – [url]www.butyoudontlooksick.com[/url]
good luck to you
AnonymousNovember 7, 2008 at 8:31 pm
I had my appointment with a Neurologist on Wednesday and he seemed very knowledgeable. He prescribed Lyrica (egads, that stuff is expensive). I’m also scheduled to have an EMG (sob) within the next week.
For those who use Lyrica, how long does it normally take to feel the effects? I decided to wait until tomorrow to try them as I don’t have to work this weekend and didn’t know how they would make me feel.
Have a great weekend!!
AnonymousNovember 10, 2008 at 10:48 am
Strictly from my experience, as medication affects everyone differently, I believe I had to “ramp-up” my lyrica, and started on a low dose and increased slowly to a level my neuro had instructed me to achieve.
I stopped taking Lyrica because of side effects that it had on me. I gave it only a “Small” chance of working properly. I have no position one way or another on how well it worked, as I discontinued use after a short time of the achieved dosage.
I will also agree that it was rather expensive. I can’t recall how much per prescription, but it was up there.
AnonymousNovember 10, 2008 at 9:17 pm
Although I’m only on my third day of Lyrica, I haven’t yet had any adverse affects (I doubt that issues will occur that quickly).
The pain hasn’t yet lessened, but I feel a bit “happier”. I’m not sure if the feeling of happiness is in my mind or because of the Lyrica, but either way, I’ll take it!! 🙂
Thanks again for the responses.
AnonymousNovember 11, 2008 at 9:42 am
I was taking 100mg 3xdaily that is low dose compared to what most people take. My only side effect was a lot of sleeping. Now I am taking 100mg
2xdaily and sleep a lot less through the day. Don’t know how long it took to take effect as the nurses gave me my meds, I took them and didn’t ask what they were until at least two weeks after I had been on the meds and my mind cleared enough to ask questions. I am still taking it a year later. Never thought about it making me “happier”, maybe that is why I act silly at times and do laugh a lot.:D
Good luck and stay happy
November 12, 2008 at 6:26 pm
Im on neurotin 3600mg but I found out other way to ease my pain in my feet and hands, I take Calm from [URL=”http://www.petergillham.com/product-line/peter-gillhams-natural-calm.php”]http://www.petergillham.com/product-line/peter-gillhams-natural-calm.php[/URL]
this have had a wonderful affect on my pain, speacialy in the evening when Im so tierd and my hands and feet hurts like hell. I learn this from a guy that lost his finger and he has constant nerv pain like us. It is like the magnesium has good affect on this, if Im bad I take 3 tsp but I try to take one in the middle of the day to make my live little better when Im working.
Hope this can help some one
AnonymousDecember 2, 2008 at 8:43 am
Just thought I’d send an update regarding my experience with Lyrica. I’m taking 75mg twice daily and it has helped tremendously with the pain and burning sensations I have in my feet.
Unfortunately, I’m starting to experience edema (feet and ankles). 🙁 If anyone else has experienced this, can you please advise if the edema will eventually go away as my body adjusts to this medication?
Thanks so much and have a great day!!
AnonymousDecember 2, 2008 at 9:38 am
I had the edema in both feet and ankles very bad the first three months. I
would lay on the sofa and prop my feet up and wiggle the toes several times a day at least a 1/2 or more each time, this helped the swelling go down.
I have no swelling in the left foot and very little in the right foot.
I had forgotten about this side effect and how bad the swelling was in the beginning.
AnonymousDecember 2, 2008 at 11:42 am
Thanks so much, Shirley!!
If there’s a light at the end of the tunnel, I can definitely deal with the swelling.
I sit a lot at work, however, I’m up and down so I’m not sure what I could use to prop my feet up that won’t get in the way. I’ve tried boxes before….hmmm. Perhaps I’ll give them another shot.
I love this forum and hope everyone is having the best day possible!! 🙂
AnonymousDecember 15, 2008 at 11:54 am
More Lyrica questions. I’ve read all the info included from the pharmacist as well as online but I’m not sure how to determine if what I’m experiencing are side effects or totally unrelated to Lyrica.
I’ve suffered with back pain for a while now, but nothing as excruciating as what I’ve experienced for the past week. I recently had an MRI of the back and everything is fine, so I’m wondering if it could be the Lyrica? Also, there is this tiredness in my lower back as well as my hips. It’s not easy to explain and I have no idea how to relay that information to a doctor.
I’ve been taking Motrin approx. 3 times a day since last Wednesday, but no relief; the back pain has me close to tears. Vicodin no longer helps and is not an option as it only makes me feel sick to the stomach.
If anyone has experienced what these issues, please tell me how things were resolved.
As always, any information or support is greatly appreciated.
Have a wonderful and hopefully pain free day!!
AnonymousDecember 19, 2008 at 10:29 am
Well, I’m no longer taking Lyrica. I’ve had so many issues lately and as I’m not sure if they were caused by Lyrica, I decided to stop taking it for now. Yes, my neurologist is aware of my decision as we need to determine what’s causing these problems.
I’m not looking forward to the return of the burning knee and foot pain, but I have to admit, the things I’ve experienced recently was much worse.
Not sure if anyone else taking Lyrica has experienced almost debilitating back pain, tiredness in the back, hips and legs, but if you have, please let me know. The tired feeling was just as bad as the pain as I was almost shuffling to get around. Shuffling really doesn’t work if you already have foot drop. 🙁
Take care and be well!!
AnonymousDecember 21, 2008 at 4:23 pm
Tina – thanks for sharing your experience on Lyrica. I have been considering trying it. I have taken the other meds and almost think about getting back on neurontin… What you mention on how Lyrica made you feel is how I feel everyday. Thanks for putting some words to these feelings! Now if I could only find a decent neuro that understands these invisible problems.
Mattyrae – Wow! What a great website you shared on ‘but you don’t look sick’. This gives me lots of good reading and will for some time 🙂
Take care everyone!
AnonymousDecember 22, 2008 at 1:00 pm
I’m not sure if my particular issues are directly related to Lyrica. As medication effects everyone differently, I wouldn’t want you miss out on the benefits as I’ve read that Lyrica has helped many.
My neurologist didn’t quite “get” what I meant when I explained the physical issues so don’t despair. I’ve realized that people don’t really understand unless they’ve experienced these things firsthand. 🙂
I wish you the best in finding a good neuro!!
AnonymousJanuary 4, 2009 at 6:02 am
I had the same reaction to Lyrica as you and so did my mom (she has fibromyalgia and neuropathy in her feet) so I switched to gabapentin(neurotin) and had about a week of swelling but now I only swell when I have been in my powerchair too long without moving my legs around (which I have to do by hand since I no longer have feeling or use of them) my mom went on the same and she swells if she overdoes it on her feet too long but other than the first 2 weeks she doesn’t now either. She takes 1800mg daily and I am on 2400mg but may be increased on monday when I see my new neuro.
Everyone is different so I hope you find something to help you soon! I was lucky with my doctor when I explained the tired feeling in my lower back and hips because he is used to my strange descriptions! lol!
AnonymousJanuary 16, 2009 at 8:10 pm
hey im sorry to here u are dealing with gbs it sucks….. i was taking gabapentin for about a year at a very high dose and had no side effects pertaining to weight gain or swelling… i hope u were able to find something that helps i know neuro pain can be soo bad.
AnonymousJanuary 16, 2009 at 9:35 pm
They started me on the name brand Neurontin many years back and I liked it. It actually helped me. Then they switched me to Gabapentin. I could tell the difference in the brands and stopped taking it for the Gabapentin made me feel weird. Then they gave me Lyrica. I could not tolerate the drug. I was like you Tina. I had to stop it! So they tried me on Cymbalta. That drug only lasted a week with me! Even tried Busparine but was taking it like candy. Was too weak of a dose. So I struggled with taking the Gabapentin! It took me a few months to get used to it but it seems to be the drug of choice. Would rather have the Gabapentin now since my body has finally adapted to it! I blew up at first but now it has eased up some! Hope this helps! Hugs
AnonymousJanuary 18, 2009 at 2:54 pm
As much as I hate dealing with the awful burning and other “nerve”pain , I’ve decided to just try to deal with it. I know this is easier said than done, but since I stopped taking Lyrica over a month ago, I’ve noticed the debilitating back pain, weakness and tiredness in my back, hips and thighs has disappeared. I still have a bit of back pain, but it’s much more tolerable and I just plan my day accordingly. I’m too afraid to try any other medication as the side effects are too much for me to handle. 🙁
A lot of people have mentioned the good effects of Neurontin, however, the amount I’d probably have to take concerned me a great deal. I had a left nephrectomy 4 years ago so I try to limit medication I take as I can’t afford to damage my remaining kidney. So…sigh. Guess I’ll try to be a trooper and tough it out. :rolleyes:
Thanks again for all the suggestions and take care,
AnonymousJanuary 19, 2009 at 12:52 am
Hi Tina! OHHH! That is not good having a kidney problem with some of these drugs. Neurontin at times aggitate a kidney problem. But there are other drugs that you could try. Buspar, Elavil, Nortriptiline. A bunch of Anti-Depressants are used for Nerve Damage. Maybe talking with your doctor and seeing which would be the best option for you as far as taking an older made drug that will help. I have to take Zanax alot because my body does the buzzing thing. Gets in my head area and makes me go nuts. Zanax though many doctors now hate giving out but with me they had no choice. It did help ease the crunch and made me sleep better. Then they decided to wean me off Zanax to 0.25 and placed me on Clonazapam 2mgs and Gabapentin up to 1500mgs a day. That helps much better now!
Many years ago before I got sick I barely took anything. Just an aspirin every now and then. And my medicine cabinet was always empty.
I now have a darn pharmacy in my house. A linen closet with no towels in it that is loaded with pills. I take an average of 27 pills a day. I have stopped many times taking them in hopes I would not need that many. But it’s been totally worthless on my part! My body needs those meds to survive on! Stinks taking that many pills. 😡 I wished they could find a way to give me a new body transplant! Cute my head off and transplant my body into a healthy one. Or make me a new body. LOL! I am not a pain tolerant person and hate not feeling good. But I try to deal with it and jusr go on with my life. Not easy doing but I certainly am not giving up on hope either! And will fight every breath I have until this stuff kills me! Hopefully I will live to see the ripe old age of 90 and do okay! Hope you get answers soon and find something that will help the pain. Good luck Tina!
AnonymousJanuary 20, 2009 at 6:55 pm
I take Lyrica and it does help. It makes me somewhat dizzy, but if I quit, my toe nails hurt badly. I now have the double whammy. I was diagnosed with Diabetes after GBS (I wonder if there is a connection?) which further compromizes the nerves. I am still sore in the mornings when I wake up but my doc says the Lyrica helps that too. I would love to get off all these meds. but don’t see it happening soon. But, I am glad to still be here and I KNOW many people got it worse than me. I feel lucky!
You must be logged in to reply to this topic.