NeuroTalk Support Groups - View Single Post - Long Term use of Anit-seizure Meds

Joselita · 09-29-2007, 01:58 AM

John,
I don’t know anything about Trileptal, as I have never hear of it, let alone taken it. I do, however, know about Neurontin. My experience with it wasn’t a good one.

I understand that this med has been a “life saver” for many others. For me, though...it was just the opposite. I took Neurontin for about 3 years. Those were the worst years of my life. The reason that I kept on taking it, is because the pain doc that I had at the time kept staying that my dosage wasn’t right, and needed to be upped when I would complain about the side effects and how the med wasn’t helping with my pain at all.

Side effects that I suffered were;
HORRIBLE “Brain Fog”. I literally had a hard time thinking and concentrating on ANYTHING. I would know that I knew something, but couldn’t get my brain to work. Elementary school homework escaped me (my kids were in Elementary school when I took this med. They are now in college). I couldn’t drive...or I should say that I refused to, because I knew that I was a danger on the road. I couldn’t concentrate, couldn’t think, had slow reaction time, and was just too distracted to be safe on the roads at all. Basically, I felt completely DRUGGED the whole time that I was on it. Drugged out, messed up, stupid & spaced out, and didn’t feel that I had control over much of anything. NOT how I want to feel. Not at all.

Slurred Speech. I don’t know if this was part of the whole Brain Fog thing, or something else. I just know that it only happened when I was taking Neurontin.

Blurry Vision. This was another reason that I couldn’t/wouldn’t drive. Not only did I have all of that stuff going on that I previously listed, but I also had a hard time focusing on things, even with my glasses on. After I finally weaned myself off of the med, this problem cleared up too (Well...I was back to my regular eye sight level. LOL.)

Depression, Irritability and Mood Swings (DRASTIC ones). My Mood didn’t swing to “good” very often, it was usually swinging around from different levels of hopelessness, irritability and bitchiness, to out right anger...almost rages. NOT a pretty thing at all. It was during this time that I was having some serious suicidal thoughts. I suffer from Chronic Clinical Depression, but NEVER has it ever been as bad as it was during my time with Neurontin. It was....well...a very dark and scary time for me and my family.

Big time, awful, weight gain. I haven’t been able to get rid of all of the weight that Neurontin helped me to pack on. Some of it, yes....but, not all of it.

And, to make all of this even worse, it did not help to relieve ANY of my pain at all. This med was very expensive when I was taking it too. Financially, physically, and mentally, I simply could not even try to continue to justify the cost of this med. Not when it was causing more problems, and not helping with any.

I was put on Neurontin at the peak of it’s hey day. It was being touted as a “Wonder Drug”, and doctors were prescribing it for all sorts of things. I had even heard of it being prescribed to some ladies as a treatment for menopause and it’s symptoms. Because of it being pushed so hard at so many people, and because I had a Pain Doc that didn’t want to prescribe someone of my age (I was in my mid 20's at the time) narcotics....I was told that my dosage needed to be adjusted when I would keep on complaining about the side effects I was experiencing and it not doing anything to help with my pain levels. My dose was UPPED each time, instead of decreased, with my doc saying that when we hit the right dose, it would help me like it was supposed to. He also prescribed other meds to try to help with the side effects that Neurontin was causing me. I think that it was because of my problems with thinking and reasoning, that I allowed this to go on for so long. Even though it didn’t make sense to me. But so many things didn’t...or I had so much trouble with getting them to, that I made the mistake of trusting that doc.

I don’t advocate for ANYONE to take themselves off of any med without their doctor’s supervision or knowledge. But, I do know that that was the best (and only) thing that I could do at the time. I don’t know if I would even be here now if I hadn’t taken matters into my own hands like I did. This doc eventually dropped me from his clinic after he implanted (and then did 3 revisions to in less than 9 months) a Spinal Column Stimulator in my lower back (I have mainly lower body RSD. That is where it started, and that is where it is and always has been worst. I have had some spread upwards though) that failed horribly. I blame this on HIM too, and not necessarily on the device or company. That is a long story that I won’t get into here. I was almost through weaning myself off of this med when he sent me to another PM Doc. I was forthright with him, and explained EVERYTHING, and he agreed that Neurontin wasn’t a drug for me (he also removed my failed SCS, since it also was causing problems instead of helping with them).

I have since tried a couple of other anti-seizure meds. The next one was also another GABA drug. While I didn’t have as many or as awful side effects from it, it also didn’t help to relieve any of my pain. So, I didn’t take it for more than about 6 months or so. (I can’t remember the name of that drug right now. Gabapentin or something like that. Sorry, having a brain fart right now. LOL).

The last anti-seizure med that I have taken is Topamax. It DOES help with my pain...but I could only take a fairly low dose of it, as it could also make my moods tend towards the irritable/angry side. My new PM Doc (the last PM doc I had..the one that removed my SCS, left here to move up to chicago in May...so I am on my 3rd PM doc. I am pretty lucky that I have only had to go through 3 of them in all of these years, with only ONE being...well....pretty awful) has gotten me off of that, at least temporarily. Reason is because it has gotten to where it isn’t relieving as much pain as it was, and I can’t increase my dosage (due to the irritability/anger thing)...AND it has started making my hair fall out in quite astonishing amounts. Right now, we are trying to see if letting it all get out of my system for a while will allow me to take it without having to increase the dosage, and without having my hair fall out like it was. He is also looking into yet another med in the same family as Topamax, but I can’t remember it’s name, other than that it starts with an “M”. I will find out more about it when I see him on the 25th.

I understand that for whatever reasons, your wife is making the decision to not take narcotics at this time. I myself take Oxycontin for my long acting med, and Oxy Ir (Oxycodone Immediate Release) for my break through pain med. I also take Zanaflex to help with the muscle spasms and cramping that I have problems with too. Other than those meds, the only other thing that I take is Welbutrin for my depression. If it wasn’t for my pain meds...I don’t like to think of what condition I woud be in, or what my pain levels would be.

I will say this too, before I wind this up; Neurontin messed me up worse than ANY Narcotic med I have ever taken. IN fact, I haven’t taken a pain med that has messed me up, or made me feel high in anyway whatsoever. Not so with the Neurontin. I didn’t so much feel some kind of enjoyable high (I don’t like that feeling anyway...I don’t like feeling stupid,or spacey in any way, or that I don’t have control of myself)...but I was most definitely “Messed Up” when taking Neurontin. It was like feeling supremely drunk for...well....every day. That stupid. Spacey, unable to concentrate feeling. I haven’t ever gotten that from my pain meds, and I Don’t WANT to either.

I just am saying this, because if it is the idea that narcotics will make her feel like she is spaced out, not able to think or concentrate, or not in control of herself or her situation at all....this is something that OTHER meds can also do.

I agree with everyone here that has said that they think your wife is very lucky to have you. She is! I think that you are a wonderful man to be doing all that you are, and trying o find out as much as you can about RSD and all that goes with it, and about the things used to treat it. I hope that you both are able to find her the kind of help/relief that she needs.

Take Care,
Jose