Starting the big Neurontin leap--doc says it works for tonic clonics?

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kirsten

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I saw the neurologist today and he thinks we're headed in the right direction. I did get better before I moved and I'm starting to recover again 15 days after the move, save one TC, and here I am, typing fine without gibberish, so something's certainly going well. My clients are paying me bonuses over their agreed upon fees, so that is a good sign too. So we are moving up slowly from 1200 to 3600mg Neurontin. It sounds crazy--1200mg three times daily. But there you go. He says that after six months we might be able to try eliminating the Epilim and Phenytoin, and stay on Neurontin as monotherapy. I told him that I was concerned about that because Neurontin doesn't treat tonic clonics. He said no, it does. Now I don't know, but everywhere I've read it says Neurontin is indicated only for partials and absence seizures. It's largely taken care of my tonic seizures, and no med has ever been able to do that ever, so would it follow that Neurontin will take care of my tonic clonics? He says the neurontin is doing it's job, but it's not at a good dose yet. I'll be moving up from tomorrow.

That's my update. I've been feeling happy living in my new home because I've been in touch with old friends every single day. It's been great. And the people here are so much more open, and more my scene--my old suburb was Snob Central. This morning I went to the station and landed up in an hour long conversation with two strangers who had also just met each other there. Then today I was standing on my balcony and I looked around and, on the balcony neighbouring my neighbour, was an old friend from a town I moved away from five years ago! She lives almost next door to me, so I actually have a friend right in my block. How excellent is that?
 
That's my update. I've been feeling happy living in my new home because I've been in touch with old friends every single day. It's been great. Then today I was standing on my balcony and I looked around and, on the balcony neighbouring my neighbour, was an old friend from a town I moved away from five years ago! She lives almost next door to me, so I actually have a friend right in my block. How excellent is that?

Very excellent!! I'm glad to hear it's making you feel happy. Moving back to my small town made a huge difference in my health.

/huggs
 
Eli, that's why I moved here. I'm still in a big city, but there are a lot of small town type suburbs in Cape Town, and this is one of them. I have no idea why these pockets of Cape Town take on the small town aspect, but they do. And because I lived here only a little more than a year back, I already know a lot of people in the area.
 
I took Neurontin once but because of the side effects I got I'd never try it again plus it didn't work.It made me gain 40pounds and I was suicidal.
 
Hi, Kirsten
I am so happy that things are headed in a positive direction for you :)
It is odd about the Neurontin choice for generalized seizures, but a few research articles have claimed to see some benefit from using Neurontin as an add-on for generalized tonic-clonic seizures. Maybe the fact that it has helped so much with the tonic seizures, which are also a generalized seizure, was the clue for your neurologist to suspect that Neurontin may also be the answer for you for the tonic-clonic? I hope it does the job without too many side effects. Keep us posted!
 
I didn't know tonic seizures were generalised. I thought they were relatively minor. Good to know. My personal feeling, if I haven't expressed it before, is that the neurontin has increased my phenytoin levels (as it does) and that is the source of my improvement, not the direct effect of the neurontin itself. Aaaanyway...I'll carry on for a while and see what happens with the increase.

Belinda, have you had issues with suicidality with any of the other anticonvulsants or just the neurontin? I haven't had depression issues with any anticonvulsants but I have switched into really bad depressions since I started the neurontin.
 
Kirsten -
I'm glad to hear that you are doing well on Neurontin & good luck with the medication increase.

I was on Neurontin from November 2009 - November 2010, it gave me the worse side effects out of all the meds I've tried since my seizures returned.
When I was on Neurontin I was constantly tired, very moody/emotional & I'm sure it affected my memory.

I had to go see local neurologist in July 2010 to get some paperwork filled out, he asked me how I was going on the Neurontin. I told him all the side effects & my Mum even told him how it affected my mood so he increased the Neurontin which made things worse.
At the time I was about to go through pre surgery tests to see if I was a candidate for surgery so I stuck with the Neurontin until I saw the specialists in the city. I had my VEEG in November 2010 & I had mentioned to the epiologists/Neurologists that the Neurontin wasn't helping so they took me straight of it & I've been of it since.
 
Sorry to report I also did not have a good Neurontin experience. My neuro gave it to me to help me sleep but said it was not a good seizure med. I was taking 600-900 mg a night and it gave me (or at least exacerbated, still not sure which) myclonic like jerking, verging on convulsions, off and on all night. Doctor thought it was the Neurontin as it does that in some people. Could be a good med for some, but did not work for me.
 
One of the things I never had luck with was that tonic seizures never got better with any of my meds. They have stopped since I began the Neurontin but for two nights in a row I've had...maybe myoclonics or maybe a less severe sort of tonic, where only part of my body has this short convulsion, I feel an electric charge going through me and I cry out. The worst of it is that I'm alert when it happens. I know I cry out during TC seizures because people have told me but then I have no awareness. Now I'm alert, and the whole thing leaves me feeling as though I just walked into a wall.

Oh my god. I just posted that in a work discussion. Deleted it. Hopefully nobody saw it! Talk about embarrassing. When using CWE forums, never have other sites open. Duh. Luckily I went back to reread it and noticed that the format looked odd.
 
Sorry to report I also did not have a good Neurontin experience. My neuro gave it to me to help me sleep but said it was not a good seizure med. I was taking 600-900 mg a night and it gave me (or at least exacerbated, still not sure which) myclonic like jerking, verging on convulsions, off and on all night. Doctor thought it was the Neurontin as it does that in some people. Could be a good med for some, but did not work for me.

Sorry to hijack (I did a search for neurontin in the forum) as I have been Rx is for my myoclonus and all I see is people reporting it CAUSED this to happen to them and so I am terrified to begin taking it to "treat" it when it seems to cause it for many people.

Also very scared of more depression or any suicidal thoughts from this drug.
 
It's really hard to say how any drug might affect any one person. I have a tendency to be effected by drugs that can exacerbate or cause myclonics. Neurontin is one such drug and lamictal is another and both have done this to me, and both do that in some people but not all. Both can improve myclonics for some people, but not all. For example, lamictal really helps some people with Juvenile Myclonic Epilepsy but makes it worse for others. It's hard to take one person's experience and know whether you will have that same experience. I know this isn't that helpful :)
 
I have nothing but praise for this drug!!

All I know is that this drug, Gabapentin/Neurontin is wonderful. I've lost 20lbs and i feel great. (the loss may not be directly attributed to this med, more my diet change) I have no depression or any suicidal thoughts. (Never really had any all my life) I've been on it for 2+ yrs and this is the only drug i take for my seizures, i don't believe in mixing drugs for obvious reasons. Also since this med is capsule, it doesn't have any tastes when swallowing.

The best parts of this medicine for me is:

1) It has causes my seizures to occur in the mornings, i think the trick in doing this is to take the medicine 1 hr after i wake. Plus the fact that it only works for 6hrs. Since i've started on Gabapentin i've had 21 out of 23 seizures in the mornings in that time frame. Before they where at any time of the day and normally at the worst time.

2) Gabapentin has reduced my seizures from having one every month, to every 2.5 months. I have nothing but praise for this drug. Granted i'd rather be on no drugs, but if you have seizures, you need some type of control and i have found it in this drug. Hopefully you can too.

I think your dosage maybe a little high, I take 600mg 3x a day. Doc told me that that is the max, not sure why since i've heard of others taking way more.


Cheers,
Zolt


:piano: :pop:
 
I took Neurontin once but because of the side effects I got I'd never try it again plus it didn't work.It made me gain 40pounds and I was suicidal.

I took it for nerve pain before I realized I was having seizures. I absolutely hated the stuff. It made me homicidal and removed any filter I had. I nearly got fired from work because the stuff made me mean.
 
I'm being started on what seems to be a fairly lower dose than most here (as I do not have epilepsy and have been prescribed it for myoclonus)

I am to take 300mg 3 times a day. I haven't started yet, because I am waiting to discuss my fears with my neurologist about the things I have read. They want me to try it for a month before they order a brain MRI.

I am already a bit depressed right now and I really don't want to exacerbate that or kill anyone for annoying me, haha. and I need to lose 40 lbs so I definitely don't want to gain more lol.

MAB, for your nerve pain, do you know what your dosage was?
 
Neurontin has one of the lowest side effect profiles compared to other AEDs, so although you will find people here who have had terrible side effects, there will be fewer incidents of negative side effects for Neurontin than, say, Tegretol or Epilim. Not sure when I started it anymore but I have no side effects whatsoever anymore and I'm at 2000 mg at this point. Statistically, you're less likely to want to kill someone on Neurontin than Keppra, but statistics don't mean much when you're the individual with horrible side effects.

MAB will tell you what her dose was but my mother is also on Neurontin for nerve pain and she's on 900 mg currently and it's helped her enormously.
 
I'm glad to hear you have not had side effects even at this fairly high dosage.
For your mother, was it 900mg a dose, or per day? (I will be doing 900mg per day if I start) I haven't seen a lot about it being indicated for myoclonus so that is what i will discuss when she calls me back tomorrow.
 
She's on 300 mg three times a day. I'm sure she'll be going up--her latest hike was last week and she's on it for cancer pain, so her needs are extreme. Still, the Neurontin has done more for her than Morphine alone could.
 
I see that you had concerns about depression, too. I did sink into a very low depression but it was most likely to have been from being so ill a month or two back. Regardless, my doctor pushed my minuscule prosac dose up to a half tablet a day and I'm fine now. Will feel better once I've had my hair cut today, though ;)
 
I'm being started on what seems to be a fairly lower dose than most here (as I do not have epilepsy and have been prescribed it for myoclonus)

I am to take 300mg 3 times a day. I haven't started yet, because I am waiting to discuss my fears with my neurologist about the things I have read. They want me to try it for a month before they order a brain MRI.

I am already a bit depressed right now and I really don't want to exacerbate that or kill anyone for annoying me, haha. and I need to lose 40 lbs so I definitely don't want to gain more lol.

MAB, for your nerve pain, do you know what your dosage was?

I'ts been over 3 years and my memory isn't good but I think it was 600mg at bedtime. I was eventually suppose to increase to 600mg 3 or 4 times per day.

I kind of think it may be part of the reason my seizures got worse. While I was on it no one realized I had been having partial seizures for a year. When I was ready to have surgery on my back (which helped the nerve pain) they withdrew the Neurotin very quickly. After surgery my partials changed for the worse. They took me off the Neurotin for surgery because it thins your blood and once I was off of the stuff I refused to ever take it again.
 
It has worked on my tonic clonics for years now. It helped stop my status seizures.

It is great for me. Everyone is different.
 
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