My boyfriend has TN and is taking lyrica. I notice he seems very weird- almost zombie like and it is really hard to keep a conversation with him, either because he gets too easily distracted or he just zones out. he also gets in this mode a few hours before we go to bed where he is so drowsy he can hardly talk and I am finding it really difficult to even have a normal conversation with him or feel any sense of companionship. I hope this doesn't sound like a selfish concern, I do understand that anything is better than the pain he was experiencing, but I am just curious as to if this goes away after a little, or if this new personality is here to stay and I have to make the best of it? right now he is taking about 600 mgs a day, at 150 mgs per dose. I miss my best friend and I am wondering if it is something I can do to get that little bit of him back to reality, even if it is just for 30 minutes.
Hi Laura Ann,
Often times, a medication starts out with strong side effects and then they subside to some degree. However, if they don't he might need to try something else. I went through many medications until I found a "cocktail" that worked ok and made me less loopy. I still get very loopy at bedtime but I take it right before I go to bed and 12 hours later so I do have a very loopy part of my day. It just isn't as bad as some others. One medication I took didn't allow me to ever drive. There was another that kicked in and I explained it as going into an immediate coma. Then some caused me to have sever double vision. Many people haven't had any issues with those medications so everyone is different. If he doesn't have any good time of day and has been on it for awhile, he could definitely call the doctor for advice.
I am on Lyrica as well, it made me loopy and still does, I only take 50 mg twice a day. I cannot drive either, but just lately I have been feeling better on it, I seem to have more energy. I also took Carbamazapine and that sucked, I completely lost my personality on it, and I have a very large personality. It seems to be a game of testing different meds until one works best, but I cant say any have really let me be the person I was before this. Hopefully he will find something that works better, Wendy
I took Tegretol and was so foggy it was very hard to work. I am also on nortriptyline but I only take that at bedtime because it makes me VERY sleepy. Now I switched to Trileptal and I get double vision for about 15 minutes shortly after I take it. I'm also kind of tired for a couple of hours but it's not really bad, especially if I'm really really busy and active. For the first 3 months I also got quite nauseated but my neurologist is just finding out that my sodium levels were fluctuating, sometimes down to 129 and probably even lower. Normal is around 135. I was very fatigued and weak and nauseated when it was low. Now I drink a 12 oz can of V-8 every day and it's coming back up - up to 132 now. I have alot more energy and feel better than I have since this started. It really took me a long time to get used to the meds too. I take 1800 mg of Trileptal and 25 mg of Nortriptyline.
And I agree, I wouldn't live with being a total zombie. He should talk to his doctor if he's been on it for a few weeks and hasn't improved. It took me 3 months to adjust but I wasn't that bad.....
I take 300 mg Lyrica/day, have been on it for about a year. I"m not Zombie like, but I do have difficulty finding the right words and putting sentences together. This is a constant the entire time. I can only hope this changes. Good luck to your boyfriend and you too. ANYTHING is better than the pain.
I will have to tell you - to be honest -- most people cannot say once they've started their TN journey -- that they are ever the same person - pain/side-effects -- so many losses. Lyrica made me "high" I would laugh through my govt. job training courses like they were SNL skits! Every med - takes few weeks for side effects to lessen..... is there a support group for TN or chronic pain in your area so you can help himself and you through this?
I'm sorry, the side affects of these drugs can be rough on everyone. I never even thought how my side affects on others around me (like my hubby), so thank you for that perspective. Did he taper up to that dose or was that his starting dose? When I was on Lyrica and first started the dose was really small at only 75mg a day, it took about three to four months for me to get to 400mg a day. Even with the small dose at the start I was sleepy, felt drunk (as if I been to a frat party), had a hard time with balance, and was a bit foggy. These side affects were really bad for two weeks from the first starting of this medication. After that they were minimal but still there. He (or you) may need to speak with the doctor about different dosing. If you want to see the recommended dosing and starting dose for Lyrica see the link below from Pfizer scroll to the very bottom and you can see the full prescribing information for Lyrica (I hope that is okay to post this links). Hope that helps in some way. Hang in there
When we take medicine to block the pain in the nerve it blocks all our nerves causing everything to dumb down. I have had two MVD's with no pain relief, but could not face going back on the drugs that leave me sitting on the couch in a stupor. The best solution for me was face cream compounded by a pharmacy. 10% Ketamine 10% Ketoprofen and 10% Lidocain. I apply it 3 times a day. It doesn't take away pain it takes the edge off the pain which is enough to let me read a book, drive and keep myself distracted from the pain so I can enjoy life. It also gave me my personality back. I still have bad days. When that happens I take 1 nucytna pill just to get a few hours pain free not as a continuous doze. I have been on Tegretol, Neurontin, trilepital, amytriptlyne, lyrica and now the face cream for the last a year and a half. The face cream period has been my best as far as quality of life. My neurosurgeon prescribes it.
I have had pretty good luck with Lyrica. I take the majority of my dose at bedtime (literally 20 minutes before I turn out the light to sleep). And I take much smaller amounts spaced throughout the day. It makes me a little spacy, and when I increase my dose I get the dopey behavior that you're describing, but of all the drugs the side effects are the least noticeable. It's different for everyone. My doctor is very open to having me experiment with the timing, so he could call to discuss with them but probably they'd be ok with it.