Gabapentin, Lyrica, Neurotin

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.

Hi tina,
I’ve taken all three at one point or another and didn’t have any swelling issues but that doesn’t mean that you wouldn’t. Definitely mention that to your doctor.

Good luck

Tina,

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.:)

Take Care,

Perry

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.

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”

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.

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!

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.

Sherry,
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
Shirley

Tina,

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.

Tina,
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
Shirley

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

Tina,
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.
Take care

i took neurotin and lyrica for nerve pain didnt seem to have any side effects. Lyrica worked well for me. Now i dont take anything. jojo

Tina,

I had swelling with Lyrica for the first couple of weeks, but it graduallymwent away. I’m taking 150 mg twice a day.

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!

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!
good luck

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.

best wishes

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
Linda H

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!
Linda H

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!

Jeff