Hi all! I’m on my 3rd try of meds and would love some feedback!!! If you’ve ever taken neurontin please let me know 1. If it worked for you and your dosage. 2. How long it took to work/kick in your system. 3. If you got “used” to it and didn’t make you drowsy- and how long that took?
Thank you!!!
I've been on it for about 2 months. 1st week 300 mg, 2nd week 2/day, 3rd to present 3 - 300 mg per day. Crazy zombie tired and floaty at first. Slept a ton 1st week! Really took a month to get used to for me - but others haven't had as many issues. GPN symptoms decreased considerably but are now are making a comeback. Doc said some people take up to 3000 mg per day, so there's still room to increase. Hate the zombie feeling so have been hesitant to increase and go through adjustment period again, but GPN symptoms are more miserable so the trade off is worth it.
Thank you! I definitely can relate to the zombie effect!!! That is what I’m experiencing right now.
Gabapentin was one of the meds I tried. It made me very zombie like too. I felt like I lost a lot of IQ and couldn't do math or programming.
The weirdest thing about it was it tended to affect my mood towards being easily angered more than any other medication.
I didn't notice huge improvement while on the medication, but when stopping it I immediately had an attack so I think it may have had some kind of effect, just not ones I wanted.
Hi
I take 2100mg Gabapentin daily ( generic neurontin) of course through out the day and sometimes supplement with 2 -50mg Tramadol 3 times daily. It makes me lethargic, slow thinking and cannot concentrate especially on anything complex. You have to keep a continuous supply of Gabapentin in your system for it to dull your pain. Gabapentin starts loosing its effectiveness at about 6hrs. I have had 2 MVD surgeries 7 yrs apart without resolving my pain issue. This forced me to retire in January at 61 yrs old. It is always good to put on a happy face but most people don’t understand or don’t want to understand the pain associated with this medical condition. I think this forum are the only ones that have some empathy for people that have this condition because it is a rare problem. You will over time have to up your dosage to get the same pain reduction. Sorry to be rambling on, hope this information is helpful.
Ed
No you are not rambling Ed!!! I can feel your frustration. I know exactly what you are talking about/ referring to. Thank you. Why do they say MVD didn’t work for you?? I’m in so much pain right now. I am a teacher and only have 10 more days of school until I have summer break!!! I’m finally seeing the light at the end of the tunnel!!! I am beginning to get pain under my tongue. I am also noticing the pain is more intense. This worries me. Is this normal- for the pain to get worse over time???
Hang in there. We will get through this. I am determined to be a part of finding some sort of cure for us!!
I tried Gabapentin in 2009-2010. I don’t remember the dosage, but know that it was started very low before bumping up the dosage. I was on it for 4-5 months. Ultimately I did not tolerate it well and ceased taking it. The zombie effect was bad and I had small children at home. It also caused drowsiness which was different than the zombie feeling. It did not help my symptoms at all.
Good luck!
Kelleyst
The docs don’t have a definitive answer why the 2 MVD’s did not resolve my pain. Both neurosurgeons one in Charlotte NC the other in Pittsburgh PA did the usual stuff, pad the compressing blood vessel against the 9th, 10th & 11th nerve. My compression was substantial and I think the myelin protective sheathing surrounding the individual nerves was damaged? Well I tried twice with no success. The first surgery paralyzed my left vocal cord and the 2nd surgery damaged my hearing, 24% in my left ear and 74% in my right. Also now have problem swallowing solid food. Pain with talking, hearing and swallowing affected on left side surgery entry site. All of our symptoms are very different but have a common denominator, SUBSTANTIAL PAIN, COGNITIVE & PHYSICAL STAMINA AFFECTS FROM MEDS. Sharing our stories lets us all feel we are not alone with this malady. Wish I had a happier story to share. We all can never give up and keep doing our best each day. My 18 month old grandson is the light of my life. That keeps me going to see him grow up.
Take care
Ed
Gabapentin has worked well for me. I've had GPN for six months, was lucky enough to have it diagnosed within a week, and once the drugs kicked in I have been under control (with the exception of a ramp-down experiment that failed). I ramped up fast on gabapentin because I was in so much pain, so the zombie factor was big for a while, but it has faded a lot. I was on 2600 mg of gabapentin per day before I switched to Gralise (branded, timed-release form of gabapentin).
A note about Gralise for glossopharyngeal neuralgia -- it's GREAT. Really freeing to avoid having to wake up at 4am to take meds to spare myself breakthrough pain. It's not labeled for GPN but many neurologists are using it that way. The mg conversion is different -- 2600 mg of gabapentin translated into 1800 mg of Gralise. I was worried about the "take with a full meal at the same time every night" instructions (who eats a full meal at the same time every night?), but you can vary taking the meds by a few hours without incident and it does not have to be a full meal -- just a few bites will do the trick.
I tried ramping down the Gralise to see if I could tolerate a lower dose, and unfortunately, so far I have not. I am a bit groggy in the morning, I will admit, but it's truly wonderful not to have to remember meds at exactly four hour intervals every day and so far it is working for me.
Use your phone alarm to remind you to take whatever you're taking -- the iPhone has an "every day" setting which is how I remember to take my Gralise. If I'm not eating when the alarm goes off, I just set another alarm for a time in the near future when I will have food. Good luck!
Thank you Ed!
I appreciate your advice!
That was the first one we tried (well, generic - gabapentin), which helped some, but didn't get rid of all the pain. Back then, I thought the "baseline" pain was TMJ (but it isn't - the TMJ was all on my other side) - I get times when I get "bonus" pain when I inhale (yeah, weird, I know), and it dialed that down at first. I was on 900 mg a day (300 three times a day) and later added another 300 mg at night for a total of 1200. But that was when I realized that a lot of my pain (deep in my ear) was not TMJ. Didn't seem to do anything.
I don't remember how long it took to start helping. But I do remember each dose knocked my socks off (as in: I would fall asleep 30-45 minutes after taking it) initially, but I think within a week, I got used to it.
So I ended up weaning off it. BTW, try NOT to ever skip any night doses. The one night I forgot, I didn't sleep. Not at all. It was around 6am when I realized, duh, I forgot my nighttime dose. I didn't forget that again! (Weaning off was not too bad, ironically. I took melatonin to help sleep then, too.)
Hi- My name is Tracey- diagnosed with GPN about a month ago now. Doc put me on Gabapentin - 300 mg 1x per day for 4 days, then 300mg 2x per day for 4 days, then 300 mg 3x per day for 4 days. I'm supposed to be increasing my dosage until I hit 2700 mg per day but I REALLY don't want to do that.
Before the gaba I was trying to control the pain with all different rotating NSAIDS with little to no pain relief, as I'm sure you know. I was also on xanax daily because anxiety of not knowing WTF and ambien to help me sleep. The first and only prescription med I've taken so far for this condition is Gabapentin. After the first day on gaba I felt like a changed person. literally, I was smiling for real in the first time in a long time. After I'd finally increased to 900 mg a day I felt really good and tried to go back down to 600. That didn't work- pain broke through, so I'm back to 900 mg a day but I'm going to try really hard not to increase it any further to keep side effects to a minimum. I've also gone completely off the xanax and ambien.
I should mention my GPN is atypical from what I've been told- I have pain in the right throat, under the right ear, into the right jaw, and a metallic taste/sensation on the right side of my mouth. I don't have the sharp shooting electric types of pain- it's constant- unrelenting. The gaba has really helped, I'd say my pain relief waivers between 90%-80%. I'll take that and try to keep my dosage down so I can explore options and think clearly about this diagnosis for once.
I have experienced some side effects: mostly a dizzy fuzzy head- difficulty finding words from time to time- some unpleasant digestive experiences in the bathroom at first (this has quelled). Im about a month in and I'm still feeling the dizziness, though less. I'm still struggling with a little bit of memory compromises- but to be honest- I had a little of that before anyway because I was so distracted by my pain I was functioning at a very compromised level anyway- couldn't remember shit because I could only do the minimum to get through the day and I was losing site of little things left and right. I'm a yoga teacher and I meditate and have a practice, so I try to use that in my day and force myself to remember things and stay focused and create clarity in my head when it's foggy. That has worked for me quite well so far, and I'm going to keep it up. I talk to myself outloud now when I'm thinking- it helps me to remember what I'm doing, what I intend to do, what I need to do etc. I can hear myself, I can repeat things to myself, and I can also sit in silence and focus my head and get clarity when needed. I guess the drowsies happen, waking up is hard but it always has been. I had been on xanax daily so I was sort of used to feeling a bit funny to feel normal when I started this regimen. However, I've also been trying to get back into daily walking which helps lift energy. and I fight it. I fight it like mad because i've lost a bunch of life trying for a year to get this diagnosis and relief that i'm going to fight a good game to function normally again to the best of my ability.
Good luck!
Neurontin didn’t work flor me
I’ve had results with accupuncture and Baclofen 20 mg.
I took Neurontin years ago at the max dose . On two sep occ. I left pots on the stove and they burned up . One day I went out to my car to go shopping ..I went back inside my house to get something and 3 hours later I looked out and saw my purse sitting on the front seat of my car with the door open and the purse facing the street. I totally forgot I had meant to go shopping. The thing that finally made me give up the Neurontin was I became dysarthric. I could not remember words and my speech was slurred. Recently though the meds I have been using for pain control are causing some severe side--effects so we are going to re-try some prior meds. As I wean off the current meds we added Neurontin at 300 three times a day and now are adding in Tegretol. I still use topicals like EMLA for ear pain. For some reason the topical meds like Lidocaine give me added relief . I reluctantly tried Cymbalta again and it gave me electric shocks down both arms and made the left side of my body just HURT . After that I was willing to try the Neuontin .
I don't want to be insulting. but i'm curious to know if you've tried meditation or any kind of techniques to help you focus and get a handle on the memory side effects. i'm just beginning neuontin, and noticing some stuff, and hoping i can stay on top of it through memory aid techniques- it's still new to me and i'm really curious what others have tried to combat the memory related side effects
Former Medica said:
I took Neurontin years ago at the max dose . On two sep occ. I left pots on the stove and they burned up . One day I went out to my car to go shopping ..I went back inside my house to get something and 3 hours later I looked out and saw my purse sitting on the front seat of my car with the door open and the purse facing the street. I totally forgot I had meant to go shopping. The thing that finally made me give up the Neurontin was I became dysarthric. I could not remember words and my speech was slurred. Recently though the meds I have been using for pain control are causing some severe side--effects so we are going to re-try some prior meds. As I wean off the current meds we added Neurontin at 300 three times a day and now are adding in Tegretol. I still use topicals like EMLA for ear pain. For some reason the topical meds like Lidocaine give me added relief . I reluctantly tried Cymbalta again and it gave me electric shocks down both arms and made the left side of my body just HURT . After that I was willing to try the Neuontin .
I would love to hear any advice re: memory issues . My neurologist tells me that my Prior-to-Neurontin memory issues are due to severe pain. That makes sense to me..that being in pain keeps items from going from short term memory to long term memory . IF any one has any advice to help memory loss please speak up !
hey- i have no advice- but i can share what's been working for me. i *think*
I'm a yoga teacher, so I have a background in meditation. I also have special training in helping others deal with anxiety- which was of very little use to me when i had anxiety issues due to severe pain btw- lols.... kind of.
eeeniway- when i'm trying to focus on tasks- i speak outloud to myself. if that's awkward- i speak inside to myself. i repeat what i am working on, focusing on, to myself. and if i get out on a tangent, i ask myself, what am i trying to accomplish here? what are my goals for my day?
i'm also spending time meditating- the metta meditation is my favorite. with the first phrase i connect my thumb to my big finger and say it internally, then with each consecutive phrase i connect my thumb to the next finger and the next. it may seem silly, that something like that can help, but it's helping me. taking time to make your mind focus on something specific at one point in the day seems to make it easier to find focus later in the day when you really need it. so when i get on a task like making yogurt or cleaning the kitchen, or whatever, i make myself check in and ask- what are you doing? and i answer- you are making yogurt, you are cleaning your room, you are doing such and such. it helps me avoid the wandering and remain present when my tendency is to stray. in the gpn group and another that i've entered, i've not found many people who mention techniques they employ to actually combat the memory loss problem, but i'm trying hard to find a way and like i said, i think it's working for me. have you ever meditated? it might be a good thing to try. even 10 minutes a day, and i'm serious about this. it's not woo woo, it's science. not only does it help with being present, but it helps undo stress in our bodies, and if you have gpn, you've had a LOT of stress. anyway, if you want to know more, i'm willing to chat, but don't want to preach or take over this group conversation with my little experiments. i'd love to hear if others have tried conscious active techniques.... it would be awesome to have more info!
Hi Kelleyest,
I've only been on Carbamazepine (Tegretol) it seems to be the go to drug for GPN. I've been up to 900mg at it's peak and then it gradually comes down to 0...I'm currently at 800mg and about to come down to 700 and I'm also starting Accupuncture today for 2 sessions a week where I was off all meds in about 2 months.Hopefully I get the same results as last year !! Wishing you the best !
Rick