It has been a while since i have posted here. I am not sure where to start. Suffice it to say that it has been ■■■■ for 2 and a half years, and it continues. i tried to come off this horrible drug two years ago this past December. i went from 900mg to nothing in just 4 weeks. As soon as i started to drop the dosage, i had immediate withdrawal symptoms. waking every morning with horrible burning and heat on my face and arms. When i got down to 200mg, my skin on my arms and face felt like it was crawling but I just thought eventually my body would get back to normal. It didn’t happen. Everything just intensified, so I thought that if I I gradually went back up on it again, my symptoms would disappear. THAT DID NOT HAPPEN! Someone on this sight said that if you go off too quickly, your symptoms may be permanent. I thought that person must be wrong, but I am living proof. I even went up to 1200mg which was higher than what i was on to see if that would get rid of this daily suffering but it didn’t help. I am now back to 900mg and still suffering. I still wake up every morning with horrible heat and burning face which lasts until I can drag myself out of bed at which point it eases somewhat. Then the skin crawling begins and sometimes the burning face and arms comes back as well. Wearing long sleeves just intensifies all that. I still have the pressure and pain in my eyes and temples that I was started on the GABAPENTIN for! I struggle just to get through the day so I can go to bed and sleep and get a break from it all. I try to get out and do the odd thing but it is a struggle. Because I look OK and sound fine, people assume I am exaggerating and that things cant be that bad. Doctors and other people say it can’t be the withdrawal since I am back on it but it was the only thing I changed when it all started. I just want my life back. Two and a half years of ■■■■ and I see no end to it. Any suggestions would be greatly appreciated.
THANK YOU
hi lynne
hi lynn, I must be one of the more fortunate ones on this horrid drug. I was on 3600mg daily for back pain way over a year ago. I went through some horrible side effects trying to come off it,including chronic depression, sleeplessness ,crawling skin etc. thank God ive pushed through it and finally free. bab 's on here was on it at the same time as me,and would be good to ask advice from . All I can say,is I hope you do find a way off it. its not easy at all,but I did wean myself down to halving and halving again over months ,until I was on 1/4 capsule daily. Thats when my struggle began . However having said that ,the hell was worth it,and i'm free. I have refused to go back on it from the Dr. So far,so good. Good luck x
lynn,
what other meds would you consider?
stop dwelling on the internet and start being positive. i came off this drug super easy! people on the internet are the ones caising withdrawal symtoms not the drug!
KMJ, please don't assume everyone is like you. You were lucky, others aren't.
I am so sorry Lynn, I don't know if I were the one warning that if you drop to quickly (or by too large an amount) the problems may last or in some rare cases, permanent. However, this is accurate. The condition is caused PAWS, Prolonged Acute Withdrawal Syndrome. I hope you realize in your heart that it IS the drug which caused these problems. Nobody here (except for a few "unhelpful" people) would question this. I'm active in several support groups and I've heard of other stories, just like yours. The good news is, that you CAN heal and recover, but it takes time and patience.
Here's a little background. When you're off the drug, the changes it's caused to your brain with it's neurons and synapses take a while to heal. Think about if you're on chemo, if you're not taking chemo that day, it doesn't mean the drug doesn't affect you, right? Many doctors are ignorant of the problems these drugs cause, but more and more are starting to understand. You just got one of them who spoke from arrogance, not information. Technically, I suppose, it's not withdrawal, but it's the damage to your body and brain from taking the drug. It's silly of a doctor to argue regarding that. Drugs cause side effects, known fact. Not all side effects disappear.
The best way to get off gab (or benzoids) is to drop 10% or less over at least 4 weeks. The brain needs to recover and heal before another drop. Adding back the drug, doesn't heal the brain, only time can do that. It can just increase the problems. Not everyone is as sensitive to this drug as you, I and many others are. But when you add other similar drugs, or go up and down on the gab, it worsens or prolongs the problems.
However, if can safely get off this drug and start to recover. You have to go VERY slowly, which may be hard, I know. I now take 10 weeks to taper 100 mg. I was at 2700 mg 2.5 years ago, now down to 500 mg. You just didn't realize that your body would react that way. I was lucky, I worked in healthcare for 30 years, so I had some idea of how to work through this, but like almost everybody, I still went too quickly and had a hard time.
If you're on Facebook, there's a terrific group called Gabapentin Awareness, check them out for support and information. Also look at the internet for groups like Inner Compass and The Withdrawal Project or Benzo Buddies. Theses are legit, helpful groups. You can do this!!
When you're ready, you can start dropping by 100 mg over multiple weeks. Yes you may have some withdrawal, but if you go very slowly it will be easier than before. And you WILL eventually get off the drug and heal. It's not a race. You're trying to do the best thing for you.
HI Lynn 72382 I Too have been very much the same as yourself. I Was on 3600 mg a day for back problems and severe nerve damage. I Tried to come off them becauase of all the side effects i was getting,but it caused me to have a nervous breakdown, i went down from 3600 to 900 a day. My Doctor told me to go back to the 3600 a day it has taken 6 weeks for them to get back in my system and i am feeling better, the side effects are back but they are helping with my pain. I Supose i will have to put up with the side effects, Hope this helps you .
Thank you for taking the time to reply. I will definitely look at the sites you mentioned. I was hoping to try and go down 100 mg each month but will have to see how that goes. I just want off this horrible drug and I know the longer I am on it the harder that will be too. Someone suggested 10% every 4 weeks as a guideline. I did try magnesium and I take an epsom salts bath each night but nothing seems to help. Again, I really appreciate you taking the time to reply.
Thank you for your reply. Babs has replied and given me some sites to look at. I am hoping to cut back 100mg every 4 weeks but will see how it goes. I should have tried to stick it out when I first cut back as things didn't get better when I went back on it. If only I had known what I know now. Again, thanks for taking the time to respond, I really appreciate it.
lynn what are the side effects that are so horrible ?
JUST BECAUSE IT WAS SUPER EASY FOR YOU TO COME OFF THE DRUG, DOESN'T MEAN IT IS SUPER EASY FOR EVERYONE. IF EVERYONE WAS THE SAME, ALL DRUGS WOULD WORK THE SAME FOR EVERYONE. The internet has nothing to do with withdrawal symptoms. Do not presume that all people are the same and will respond the same to all drugs or withdrawing from drugs.
Not sure what you mean by other drugs to consider? To help with the withdrawal symptoms?
YOU ARE A WARRIOR!! I know of your chronic nerve pain as I HAVE IT MYSELF. I WAS ON 4500mg for 10 years. it took me 6 'months to get off of GABAPENTIN . I then experienced several weeks of amazing energy, less chronic pain, only to find that I had become manic and spun out of control. It landed me in the hospital for 16 days. THEY NOW list GAPAPENTIN as an allergic reaction. The Lithium they put me on has caused parathyroid tumors. I just had surgery FEB. 4th. MOST tumors are 20mm to 40mm. Mine was 660mm. THANKFULLY NOT CANCER.
Deki, are you aware now that the likely cause of your episode was the rapid drop of the gabapentin? I'm so sorry that, like many of us, you or your doctors weren't aware how carefully we have to get off these drugs. You weren't allergic, it was the way your body responded to the meds. Also, there is no "maximum dose" for gab, but most research states that over 1800 mg any benefits from the drug are far outweighed by the harm. I hope and expect you to continue to heal as time goes on.
It's a struggle and there will be good and bad days, but hang on for the better days. As I've said, my tapers are not the hell that others have gone thru, but the last few weeks, I too was struggling with pain and low mood (don't want to trigger Mr. Moddy, but you get it). Then yesterday I realized I cracked a joke. That was the signal that for now, the worst is over. But EVERY taper I have to remind myself, it WILL get better, you've been through this before. Then I compare how I was a year ago and feel grateful.
I make short notes (or if you wish, journal) to remind myself when the good and bad days are. That's how I found the pattern, and also references to know what to expect. The good and bad part of gab brain and memory issues is I forget that the bad part was that bad during a taper but that also the good part is the NORMAL part, when I'm me again. You can do this, don't feed the trolls and know that you are in the same boat as thousands of others around the world and we're all pulling for each other.
JohnAk, what a shame you went through this. For the many who have problems with the drug, a safe, easier drop from 3600 could have taken two years or more. I doubt if that's what the doctor did. If you wish to come off the drug, please consider that 10% rule. In the beginning, you could drop 400 mg every month as that's a bit more than 10%, or you could go slower until you see how your body reacts. Some can do it more quickly, but as you had such a reaction, you may still be healing.
Please be careful adding ANY other drugs. For many who had such a severe problem during tapering, any drugs such as MJ, benzos, opioids or other meds can cause something called kindling, meaning it will re-ignite those symptoms all over again. The truth is that MAT Medication Assisted Treatment or adding other meds won't help, the body and brain need to heal. Some feel they're helped by CBD, which doesn't have the active ingredient of THC, it seems to help some, but after what I've been through, the strongest I take is Tylenol.
Lynn, sorry for all the responses, but I want to give you enough info to make good decisions. If you look at some of those websites, you'll see that you should listen to your body. As you've had such a reaction, you may want to go slower. I've learned not to cut my dosage again until I feel much better. I'm an outlier, as it takes weeks for my worst symptoms to appear, for some it's within 24 hours. But looking back, I can tell, that if I'm just a bit better, then drop again, each taper will be more problematic. Recovery is not linear, i.e. you don't start to feel better and every day gets better. It will be a gradual improvement, so I wait until I've had several days in a row, maybe even a week before I drop again, so it can be 8 to 10 weeks. It can take a week to realize how lousy I was a week ago as any improvement feels so good.
I tell people, I'd rather have several good weeks out of the 6 or 8 weeks before I got thru hell again. But that's my choice, others may way, others will chose months of hell to get off the drug faster. But once the bad times start, all the helps is time, distraction, patience and optimism.
sorry,
i ment to hurt with overall nerve pain. Im at a point i have to try something new. ive been on tca(immipramine) plus a small amount of cymbalta for years. getting massive body pains and burns. was mentioned neurontin or lyyrica, but side effects sound horrible as does coming off. however, like all of you im in a lace i need something.