Neurontin (gabapentin)

[daisy.girl]

Well....just back from my Neuro's office. I had a recent allergic reaction to Lamictal, so today they decided on Neurontin.

I also, just completed an MRI of my lumbar spine....So I found out I have 3 herniated discs, one with an annular tear. I've been having severe pain down my left leg....it wakes me and keeps me up at night....not to mention I also have 2 herniated discs in my neck. No wonder I have a sleep disturbance!!

I just finished reading the thread about pain...and several people posted about not having good success with the Neurontin.. I think my Neuro is trying to kill two birds with one stone. Control my seizures and treat the nerve pain.

Did the Neurontin help with anyone's seizures or nerve pain??

 

[Rae1889]

First off, I have one question. What is the cause of your E? Have they given you an answer? If not have you thought about the damage to your spinal nerves due to the herniated discs causing the seizures.

I know that since taking Gabapentin, my restless legs at night have gone away. but thats about it. It hasnt done alot for me. i'd like to switch it up after my one week vEEG.

but who knows, you may have great success with it. I think that he needs to look into fixing the discs as well to help with that pain. maybe some physio or sugery depending on the severity.

 

[RobinN]

What I remember about Gabapentin, was an increse in Rebecca's seizures, and a severe suicidal tendency.

 

[daisy.girl]

First off, I have one question. What is the cause of your E? Have they given you an answer? If not have you thought about the damage to your spinal nerves due to the herniated discs causing the seizure?

I do not know the cause of my seizures. I do have MS too. One of my EEG's was normal and the other one showed a Grade 2 dysrhythmia with spikes in the left partial lobe.

I didn't know that damaged spinal nerves could cause seizures?

Is there anyone here that takes Neurontin for their seizures?

 

[Endless]

Hi, Daisygirl,

About a week ago my epi added 600mg of Gabapentin (Neurontin) to my 200mg of Lamictal. He's trying to kill 3 birds with one stone: treat the pain and insomnia that is a side effect of the lamictal, and also increased seizure control. It is definitely helping with the pain. I notice a huge difference. I'm not sure about the insomnia. Time will tell.

I was on 300mg of neurontin for nerve pain for about 7 years before I was diagnosed for seizures. I really think that low dose of neurontin increased my seizures, not decreased them. No way to tell because I had no idea what was going on back then. I have the same suspicion of increased seizures for the 600mg that I'm on now.

BUT I think a higher dose, as you would get for monotherapy for seizures, might do a lot for you. Try it and see. Neurontin is one of the more benign of the AEDs. Lots of people get along very well with it. It's definitely worth a try.

 

[daisy.girl]

I really think that low dose of neurontin increased my seizures, not decreased them. No way to tell because I had no idea what was going on back then. I have the same suspicion of increased seizures for the 600mg that I'm on now.

As I am sure you know, and with many AEDs, increased seizures is listed as a side effect of Neurontin.

I sure hope this one works too....I have so much going on with my health, that I think my neuro is overwhelmed with how to best treat me. I get copies of office visit notes. He writes....'decision making in this patient's case is of high complexity'

 

[Endless]

laughing.... (I've gotta laugh or cry. I take the laugh)

Yes, I think my doc gets a little frustrated over how my body reacts to drugs. Nothing seems to be straightforward. And drugs combine in my body do weird stuff together. Kind of unpredictable. So I try to keep the drugs I'm taking minimal. I'm having mixed results with that.

 

[RobinN]

FYI:
http://paleodiet.com/ms/

***link works now

 

[daisy.girl]

thanks Robin for the link...
It is very interesting, I also have Pernicious Anemia, due to decreased ability of my intestinal tract to absorb the nutrients I need. I have been reading a lot about it.....and believe it or not, it seems to be related to gluten sensitivity and celiac disease.
I also have a Vit D deficiency and iron deficiency....due to the absorbtion issues. I did not know that the MS could be due to the same problem....so thanks again, I will be looking into it in further detail. Not sure how gluten/casein sensitivity causes demyelination....but definitely worth looking into.

 

[daisy.girl]

Well it has been 2 months on the Neurontin for me.....and No reaction!! I almost cannot believe it after being allergic to topamax, zonegran, keppra and lamictal. It has helped to control my seizures although I still have a simple or complex partial once or twice a week. It also helps a little with the nerve pain I have from the MS.

My main concern at this time is not to gain weight on it. About three years ago I lost 35 pounds....I have gained 7 or 8 pounds back, but that was prior to the Neurontin.

 

[Endless]

I am so glad the neurontin is working for you, and that you are tolerating it! Neurontin has had little or no side effects for me, either, when I've been on it. i'm back on it again at a very low dose for nerve pain.

Are you up to your full dose yet?

 

[Mamakatster]

Hi my daughter is 13 and had awful side effects with Keppra (became psychotic and suicidal) and lamictal (rash sent us to ER, luckily it's resolving). Her seizures are only at night and the peds neuro seemed pretty sure of a diagnosis of Benign Rolandic after her first seizure so we didn't use meds then. Her EEG was consistent and we hoped it wouldn't happen again. But she's had one every nine days for the last month and right before that, two in one day with a totally normal EEG this time. Definitely related to sleep cycle, she is always asleep and we think it's related to her upcoming menstrual cycle as well. Now we make sure she gets plenty of sleep each night and doesn't stay awake for too many hours (more than 13). But after the rash scare, the doctor is recommending Gabapentin QD at bedtime. Glad to hear it worked at least for someone. Everyone is so different, I hate putting her through this, but we never know how someone will react. Thanks everyone.

K.

 

[Nakamova]

Hi Mamakatster, welcome to CWE!

Keep us posted on how your daughter does on the Gabapentin.

Best,
Nakamova

 

[Mamakatster]

Thanks everyone! Eek, this is scary, the neuro wants her on a gigantic dosage! 1200 3 x per day. I've read this is the range for monotherapy for a kid, but won't she be a zombie? She's very sensitive to drugs. Plus she is supposed to be going out of state this summer, by herself for the first time and it's been indefinitely delayed. That alone is making her so miserable. I keep reading about kids becoming suicidal on the neurontin, but with everything she's going through, it'll be hard to discern situational/hormonal depression from clinical depression....trying to keep her morale up to the best of our ability, but we both work full-time. Luckily her grandmother, brother, uncle and several friends have been trying to keep her occupied.

Sorry to ramble, off to work....waiting to pick up the nasty meds. I've kept her sleep cycle very tightly controlled for the past 9 days, given her Melatonin at bed and no seizures for 9 days. I just don't know yet.

K.

 

[Nakamova]

If your daughter is generally sensitive to drugs, you should ask the neurologist about doing a very slow ramp up on the neurontin, in small increments. This can help her brain adjust at each interval, and will you also allow you to gauge how well the med is working in terms of seizure control and side effects. You may find that she does fine at a lower dose, and may not need to increase to the level the neurologist is suggesting.

 

[Mamakatster]

Thanks, she is increasing her gradually, just saw her instructions. Hopefully this will work.

Her seizures aren't that frequent but they are grand mal. Very scary looking but lasting only 1 to 3 minutes.

I'm grateful for this forum!

K.:hugs: