Gabapentin withdrawal horrors
Posted , 9 users are following.
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 hell 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 HELL and I see no end to it. Any suggestions would be greatly appreciated.
THANK YOU
1 like, 41 replies
babs99203 lynn72382
Posted
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.
lynn72382 babs99203
Posted
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.
changejobs lynn72382
Posted
lynn what are the side effects that are so horrible ?
babs99203 lynn72382
Posted
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.
babs99203 lynn72382
Posted
We can't post links here, but if you look up "what is happening to your brain?" and Benzo buddies you'll find a blog that I think is incredibly helpful. It's an easy read which explains how the chemicals in the brain work and what meds do to it. Understanding this is the first part of healing as it reduces the fear of the unknown. Then he's also reassuring about the symptoms we get, explaining that it's healing. Benzos (anti-anxiety drugs etc.), opioids and gab/Lyrica have similar affects on the brain so what you read in those support groups are guidelines everyone can follow as they try to get off drugs that affect the brain.
There's also now an awareness world wide that anti-depressants also require careful tapering. The UK is way ahead of the US in understanding this, but the NY Times recently had several articles about it.
lynn72382 changejobs
Posted
Sorry for the delay in answering your question. I wake up in the morning with horrible burning heat on my face and arms that is continuous. I toss and turn but it doesnt go away until I am up for a bit. Then it goes to arms and face feeling prickly, skin crawling. This can vary from tolerable to very intense and I just want to get out of my body, I dont know what to do with myself. Sometimes during the day my face and arms get the burning heat back and it can last for the rest of the day until i go to sleep. Sleep is the only break I get from it all.
changejobs lynn72382
Posted
omg. im so sorry. i get things like that now and cant believe how much the medicines can make it worse,
JohnAk lynn72382
Posted
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 .
babs99203 JohnAk
Posted
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.
Deki lynn72382
Posted
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.
babs99203 Deki
Posted
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.
G.Allyn lynn72382
Posted
You are not alone. There are other patients out there who are struggling through the same type of problems.
Initially, my physician had me on 3600 mg per day, decreased to 1800 mg/day and placed on a 6 day wean off the 1800 mg. I took my last dose July 2016 and still having problems. I do not know how others feel, but I wish I had never taken that first dose.
I wish my physician had given me the information to make an informed choice or I would not have taken the first dose of gabapentin.
babs99203 G.Allyn
Posted
I really liked my doctor, one of the best at our clinic. But last night I wanted to call him up and say, "YOU did this to me! What the heck is the matter with you people!" Even thinking of doing that made me feel better. And yes, today I am better, but these ups and downs are killers.
G.Allyn lynn72382
Posted
Lynn, I may have missed some of your story, but I was wondering if you are on any other medication for pain.
I discontinued gabapentin in July 2016 and continued to have terrible pain. I was on percocet maximum of 10 mg per day. I took 2.5 mg every six hours. Two and a half years later and I was still miserable.
It ended up, I thought some of my symptoms were possibly systemic and I ended up discontinuing all medication. It is 14 weeks later and I am just beginning to feel better.
The point I am badly trying to make, is I do not know if gabapentin and the small dose of opioid was causing some symptoms, or possibly one of them causing the other medication to potentiate the other medications side effects. My solution was to discontinue all medication and try to get by with acupuncture.
I am not trying to overstep, but wanted to explain what I have been through. Who knew both medications could cause so many problems. With both systemic and working on your central nervous system, who knows where the problems with one medication starts and where things end.
I wish my physician could provide the answers, but he seems more inclined to disbelieve the patient and put the blame on the patient. I would change physicians, but without any prescriptions I see him less and less.
lynn72382 G.Allyn
Posted
Thank you for your reply. Please do not feel like you are overstepping, any information is greatly appreciated. I am only on 10mg of Amitriptyline at nighttime. The other meds I take are for digestive issues (reflux and gastroparesis), thyroid, and estrogen and progesterone for menopause. Some days the pressure and pain in my head is bearable but the burning, skin crawling, prickly almost itchy feeling on my face and arms is so intense and unbearable I don't know what to do with myself. Sleep is my break from it all. I usually get between 6 and 7 hours before I wake up with the intense burning and heat on my face and arms. When I eventually force myself to get up the heat and burning eases and I am left with the skin crawling. Sometimes the heat comes back during the day, those days are the worst as it seems to increase the pain and pressure in my head.
THANK YOU AGAIN FOR YOUR REPLY?
babs99203 lynn72382
Posted
Lynn, could the other meds contribute to this problem? My husband's drug for his BP/Afib causes itching.
lynn72382 babs99203
Posted
Thanks Babs. I didn't have the burning, itching and skin crawling until i started to come off the gabapentin and i haven't added any new meds so it cannot be that. The intensity of it varies from day to day which is good as some days it is so intense that I don't know what to do with myself.
babs99203 lynn72382
Posted
I'm lucky that mine has been confined to just my head. I'm on it from shingles/post shingles pain, but I never had itching from the shingles and it was on my back. So my itching is definitely gab related. However it's been decreasing over the months. I never scratch it and try to just block it out. But same here, some days it's worse than others.
lynn72382 babs99203
Posted
Are you completely off the gabapentin? There are time when I feel so horrible I want to just stop all my meds, I figure I can't feel any worse than I do now. If you are off it completely, how long has it been?
babs99203 lynn72382
Posted
No Lynne, I'm still at 500 mg of gab. I'm taking 10 weeks between tapers, or longer. PLEASE do not stop them all. It CAN GET MUCH WORSE! Going cold turkey from gab, opioids, benzos and anti-depressants can cause serious, even life-threatening symptoms. There's a condition called PAWS which is when the healing takes months and even years. Prolonged Acute Withdrawal Syndrome can occur then, but even if you don't develop that, the withdrawal will be horrible.
Just because you're off one of these drugs, doesn't meant the side effects go away. There have been changes and damage to the brain. It takes time to heal, just like other injuries. I will be slowly tapering for months yet, maybe it will be October or longer before I'm off. But I know that I may not feel totally healed until months after that.
babs99203 lynn72382
Posted
I've asked about advice in one of the other groups I'm in. I didn't use any identifying information, just that it was someone in a different group I'm in. I hadn't come across the combination of symptoms you mention, but as many of us have had problems not routinely listened in the warnings, it would make sense it's from the gab.
Have you had any relief lately? I know my taper/WD side effects are much worse when I have a lot of stress in my life. If that's a part of it, I hope it improves or you an find some distractions or support.