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03/13/2012 11:57 PM

Anyone with bad side affects from Gabapentin?

Peace77
Peace77  
Posts: 9471
VIP Member

When first diagnosed in 4 of'08' my PMD gave me Gaba, in very low doses and gradually increased. I got very ill on it , I think 2 years later. I had head rushes like petty mall seizures..dizziness never went away. I was walking sort of like leaning like to the left side when walking.

Dr. says I cant work anymore, I can see why. Lost weight in the lower limbs..no fat or muscle. I will try to build them back this summer swimming.

Whenever I tell my Rheumy ...he says no Gabapentin is good for you...maybe for some, but not for me. I read in Wikipedia how it really does mess with the CNS..and that scares me, my head has been beat too many times. I'm weaning off if this week..and I cant believe, I was able to vacuum and dust and use the dust mop on the walls and fixtures without falling from looking up..so I really do think for me, I cant take this med...Anyone else out there with bad affects from it? Any thoughts on a different med? They tried Norco and I am doing very well with it, still take the anti-spasmatic med too..but not too much...

Any thoughts would help..

PattyErmm

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03/14/2012 12:29 AM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
VIP Member
I'm an Advocate

Hi Patty

I just switched from Neurontin/Gabapentin to Zonegran. The Gaba was causing me after so long on it and up to 3,600 a day (down to 1,800) the last few months to do weird things, say weird things, talk about things I couldn't remember, want to eat to stop the mind fog, and things like that, but otherwise it helped my burning pain.

So I just weaned off Gabapentin to 100mg of Zonegran/Zonisamide twice a day and then next month to 200mgs once a day.

My only problem is the I'm high risk for Kidney stones and have had them several times including hospitalization to surgically implant a stent in me and this can cause kidney stones. I ask for it back since I took it back in 2003. It was the very first anti seizure med I had ever taken. I went off it too soon back then and didn't give it a chance to work. So I'm drinking lots of water as is recommended and keeping my fingers crossed because the med is helping for much less dosage than the other.

I'm so sorry you've been having such a hard time Patty

Hope you feel better soon

Hugs,

~Twinkle

If you don't have problems with kidney stones talk with your doc about it and see what he/she says. It is an alternative.


03/14/2012 12:30 AM
maddiesgram
maddiesgram  
Posts: 2432
Senior Member

Hey Patty,

I'm on Gabapentin and do have side effects, but not as many or as severe as the ones I had on Lyrica, it's "cousin" drug. My pain doctor is similar to yours in believing that I need to be on one of them and it's due to the fact of it being more effective on neuropathic pain. But, if you can't take it, you can't take it, in my opinion. And, only you can decide what is best for you. I think another reason that my painn doctor likes Gabapentin is that frankly it is not an opiate medication and he will not have to worry about it for many reasons like the DEA. I'm not sure, but if I was unwilling to take the Gabapentin I'm not sure that my doctor would be comfortable or willing to prescribe something "stronger" like a narcotic medication. That's my guess from things that he has said. Your doctor might not think like that.

I think Gabapentin gives me foggy thinking and also effected my memory. But, they say that RSD causes memory problems, so who knows? I know it also can make you hungry. On Lyrica I gained a lot of weight. On Gabapentin it's not been as bad, but I do think it makes me more hungry than I normally would be. The mental cloudiness is the worst for me. I've only been dizzy a few times on it and don't even know if it's the medication that has caused it, so I don't have any issues like falling over or anything. I do feel safe taking it. Just not as "bright" as I once felt.

I've taken different opiate medications and they do not make me feel bad like Gabapentin does. But, when I tapered off of Lyrica, before going up on Gabapenin, the burning nerve pain was much worse. It does seem to really help with that. I still have it, but it's not terrible and it has been before. I just think all of us will be on very different paths regarding medications. Some can no longer take medications that once did and I'm just so grateful to have something that helps some that I want to paint poppies all over my house- lol! For all who think that was a "red flag" I was just kidding!

I hope you can find what will give you a good amount of relief with few side effects. I'm still trying to find the best thing for me. Take care, Patty, and know we are here for you!

Hugs,

gail


03/14/2012 05:35 PM
pjs
pjs  
Posts: 241
Member

Hi Patty;

i was on gabapentin for approx 5 years. at the firs the side effects were where i really could not function. But i have to tell after 1-2 wks that really kind of went away and I adjusted.

what i did not like and the doctors never told me this is that gabapentin is known to make people gain weight.

i am off gabapentin now but basically that was because it stopped working for me

best of luck


03/14/2012 11:04 PM
Peace77
Peace77  
Posts: 9471
VIP Member

Smile Thank you for your responses. All your symptoms are very close to mine. Except one, I lost 20 pounds in the last winter, could have to do with other stressful things in my life though, not sure.

I really can't tolerate this med anymore, I know my Doc will get mad Nothing I can do for him, thats his choice..LOL.

I cant stand the head rushes, feels like I'm having a petty maul seizure and I just hold my head until it stops..freaky..huh? Yes the dizziness I got use to, but then I started walking to the left instead of straight , now that really woke me up.

Been on it 4 years now with 1 12 week break, I just had to, then started them again.

Twinkles?? Do you remember me complaining about my eyes and face swelling? I finally found it on Wikipedia-updated...causes swelling in extremities and face, eyes get swollen and double vision, light sensitivity...it all falls into place for me. Mostly also stomach problems, have IBS, Diverticular disease too.

DAMN I HATE GETTING OLD... Shocked Laughing


03/15/2012 12:35 AM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
VIP Member
I'm an Advocate

Hi Patty

Yes I do! Obviously this is not the med for you. I hope your doc understands and doesn't try to force something on you that you cannot tolerate and that gives you adverse side effects. It just wouldn't be right for your sake or his/hers.

Hugs,

~Twinkle


03/15/2012 01:06 PM
luckyduck

Hi Patty,

I just started Gabapentin a few weeks back and the doc started me at 400mg. Well, I was so dizzy I was holding onto the walls and even laying down I would feel like I was spinning. I had terrible nausea as well. He lowered it to 100mg and I'm to work my way up slowly. Yesterday I worked up to 300mg. for the day with no severe side effects. I did have a very strange severe headache that felt unusual two days ago with sharp stabbing pains in my left ear on and off. (it's hard for me to say it's from the gaba)

I've noticed I am still getting weird pains in my ear ever so often today but no more headache. So far it feels like it is helping the pain killer medicine (oxycodone) to work better and longer some days. I started Baclofen the same time as the Gabapentin which is helping the spasms but that medicine also causes dizziness and nausea as well for me. There are other medications that your doc can try.

Lyrica started at small doses 25mg. am and pm is one I've read about that some claim helps. Other medicines I've read that are tried are Tramadol (Ultram), Elavil, Cymbalta, Lidoderm, Gabapentin/Nortriptylene combination(some claim good relief), and Amitriptylene.

Those are what I've been able to look up. I'm sure there's more. Maybe some old posts here in the forum can give you suggestions to ask your doc about. Keep looking and asking. Getting the best pain relief possible is so important to our quality of life. Take care. hugs, Lucky

Post edited by: luckyduck, at: 03/15/2012 01:07 PM

Post edited by: luckyduck, at: 03/15/2012 01:08 PM


03/15/2012 03:03 PM
maddiesgram
maddiesgram  
Posts: 2432
Senior Member

Hi Lucky,

Good point that you started taking the Baclofen the same day which makes figuring out which side effects are from a single medication almost impossible. I realized several years ago that this created problems for me and now will tell my doctor to please only change one medication at a time. This, of course, does not apply to something urgently requiring more than one. It's just been a practice that has helped me after a bad experience years ago when a doctor started me on 5 meds at once and I had not only no idea which medication caused which side effects, but practically no idea what was going on! Lucky, I hope you figure out what will help you the most, also, with an acceptable level of side effects.

Everyone, I was prescribed a "new" form of Gabapentin yesterday and was wondering if anyone else has used it. It is a time-released Gabapentin that you can take once a day and is called Gralise. I was doing fine on the Gabapentin that I had been taking for several years, but my doctor REALLY pushed me to change to this one which always makes me a bit uncomfortable. He didn't exactly make me feel like I had much of a choice, which also makes me uncomfortable, but I didn't speak up like I probably should have. The "good" thing he said about it was that besides only taking it once per day, he said that the results have been good and people can take less mgs. to get the same results. I've been on 3200 mg. for over 2 years and he's taking me down to 2400 mg with this new format. Has anyone used Gralise? It IS Gabapentin, and says so on the packet I was given, it's just a different way of taking it. I can't imagine how a lower dose will give me the same benefit as I was getting from the other, but need to read up on it. I'd love to know if anyone has taken it!

Thanks!

gail


03/15/2012 11:55 PM
Peace77
Peace77  
Posts: 9471
VIP Member

Hi Gail

I never heard of it being in extended release form, but that sounds great.

Most Dr.s start XR meds at a lower dose in the beginning to see how your system breaks it down and how fast. I would keep a chart (just something little) to see if you feel worse or better at different times through the day. Also if any part of the day it really releases a lot , write that down as well. Don't want to get to dizzy...LOL...maybe then if you feel its not working at that dose, you can ask your doc to increase it a little.

Good Luck with it!

Patty


03/16/2012 01:10 AM
maddiesgram
maddiesgram  
Posts: 2432
Senior Member

Thanks, Patty! I haven't started it yet, but when I do the idea of a chart of at least good record of how it does and when is a great idea. I'm hoping it does a great job, as I had been fairly happy with the Gabapentin I was on but tonight my feet are on fire. I don't know why. I sure will let everyone know how it goes and if it works well. I'm not very sensitive to medications and really have only had trouble with Lyrica which might have been nothing more than being on way too much. So, even if I do well on this someone else might have more side effects than I do. I'll let everyone know. Probably will start Monday, but possibly sooner. Thanks!

gail

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