Gabapentin Withdrawal Horror

I hope tomorrow is much better. It’s hard to remember that it can improve.

Nerve pain sucks. 

I had a similar problem with a bone spur in my back short circuited my brain communicating with my legs. Surgery helped. 

What I can say is gaba just turns us down a notch or more. Dulls the nerves. 

But all meds in the end reverse what they were supposed to help. 

I have neuropathy. But I’ve been able to deal with it.  It’s a shock at first.  Anytime we have changes in our bodies it takes time to adapt. 

 Ow I know to not let my feet get too cold. Or it’s. Hard to recover them. 

Stay warm. On a sunny day go outside barefoot. Touch the ground  fresh air sun. 

Give yourself proper nutrition. 

I will probably have to always take a couple of aleve a day. But I don’t want anything like gaba turning my brain down anymore. 

With the changes I’ve made I have been able to improve my neuropathy by about 75 percent. A lot of pain and numbness is actually in the mind.  Don’t let gab ahold of you. Stay strong and don’t accept. 

I tell pain “you are not welcome in my body. “. It works for me. 

But you have to believe. 

I stay stronger then the pain.  It’s sounds crazy but try it. 

We have more power the. We think. 

Go for it 💪

You’ve got so much good information here and good advice. But i disagree,it doesn’t numb the nerves, it numbs and damages the brain. Neurons are destroyed.

Hi Richard, After 3 really bad days, today was ok. Still have the tingling but not as bad as it was. The pain I used to have in my legs seems to be gone. At least I haven't fell it in a few days. It was good for me to read your E mail again, good reminder to tell the pain, begone. Your not welcome here.

Take care Richard.

Marie

Hi Lori, im sorry you too are suffering so much. Saying many prayers for you and everyone here. I also had something similar with taste and burning. Oh boy was that painful. It lasted for about 1 month then it was gone! My toungue, my GUMS, and i couldnt stand that pain. I went to the dentist and he checked everything, found nothing. I lost my sense of taste too. But the pain was more than i could bare also. Out of all the side effects thay one was def the worst. Your not alone.

Thank you. I started the gabapentin again because I think the withdrawal was making my burning mouth and tongue symptoms so much worse. Ihave known severe pain in my life before, but this was- and still is to a large extent- unbelievable agony. I truly felt it was more than I could bear. I think the nerves in my mouth were just screaming and all mixed up even more than before. The pain is marginally better, but at least that slight difference is preferable - I’m not sure how I’m going to bear this burning mouth syndrome, but stopping the gaba is not the answer for me. I was also so crazed with such profound anxiety and depression - which is bad enough usually anyway. Not sure where tho turn now. Was hoping that getting off the gaba would be the answer. 

Im sorry you are going thru horrible pain. I stopped the gaba and 2 months later the burning in my mouth started

Yes its the nerves. I know that pain. Thr good news is it DOES stop. It was the worst pain i endured also. Relentless. What i found helped, didnt stop it, but i went to cvs, i bought a few diff mouth washes. One had aloe, others were natural etc. It soothed the mouth. I know this sounds horrible but i didnt brush 2x day. When i did brush it hurt and then it increased the pain 10 fold. It did stop after about 1 1/2-2 months. Foods with acid set the pain off like certain high acidic fruit. I also switched to sensodyne toothpaste which stops toothache pain. Helped a little also. I used antiseptics washes. Go to cvs and look in the mouthwash area, preferably all natural.

I’m so confused. You seem to confirm that the gaba is needed for the burning in my mouth because it is nerve disfunction - you said the burning started for you after you stopped the gaba.  But you told Nathan not to start the gaba again.  After starting the gaba again (back to my usual dose for peripheral neuropathy in my legs of 900 mg total per day) for a day or two now - and the burning is pretty much the same -not quite as unbearable but I can feel it building up this morning and it usually gets worse and worse as the day goes on. I have been using natural mouthwashes and toothpastes and eliminating virtually all acids, citric acid, spice, etc etc etc, for weeks now. Does this thing just disappear? The reported research doesn’t provide much hope for that. Doctors and scientists seem mystified by what to do. Oh God, this is so horrible. I sometimes feel that I can’t live like this. I’ve never felt like this before, so hopeless and feeling that I literally can’t handle this burning.  I thought my rheumatoid arthritis was bad, then I thought the Sjogrens dryness was bad, the the peripheral neuropathy, then acid reflux started suddenly with no warning whatsoever and now this burning in my mouth, which is worse than everything else - and nothing,  nothing, nothing helps.Sorry to sound so desperate.

 

Lori,

The burning is from acid rising into your gastric tract. This is a classic withdrawal symptom and it will pass. Add liver detoxing fruits and vegs to your diet, it will eventually pass. I did the same. Good luck! 

No, the burning was so severe, almost as much so, weeks before I attempted withdrawal, and it’s getting almost as severe today and I have been back at my peripheral neuropathy dose of 900 mg per days for several days now. The burning also pre-existed any issue of acid reflux. But thank you for trying to help me.

Lori, I'm so very sorry if I confused you. I know how frustrated you are and with good reason. Im so sorry that your going thru such a hard time too. I can relate to ALL of it. Thats why im still here, ONLY to help others through this. This a very hard time for so many people. Remember this,,, that there are many people out there who dont know about this forum, they have no clue whats happening to them, and that its from the gaba wd. Its a very hard thing they're going through. That must be incredibly frightening. 1st, the burning in my mouth started AFTER I stopped the gaba. The burning started about 2 months after I completely stopped. From my own experience, as well as some others is... dont go back on gaba once you have stopped, or, if your still taking gaba, dont raise the dose. The symptoms from the wd will not disappear or go away. It MAY help for a day or two but thats it. It only starts again. It will be a set back, but its a minor one. Many people have raised the dose and have re-started again. If you went back on gaba after stopping, to relieve wd symptoms, please dont stress over it. DONT!! MANY people have gone back and with good reason, its just too darn hard! Only people who are going through this can understand it. Just begin again and go very slowly. Now you have a better idea of what to expect. That dosent make it any easier physically, but it does mentally. The burning is a horrible horrible thing. Probably the hardest symtom I had to endure. You are the only other person, other than myself, that ive heard that has had this burning in the mouth. It DID stop for me. I didnt think it would ever end but it DID! It did take a good 6 weeks at least. If I had to go through this all over again, and knowing what I do know today, I would do it exactly the same way I did it. I sucked it all up and never went backwards. Its the hardest thing I have ever endured and Im so sorry that you too are going through this, it breaks my heart. The only reason im still here on this forum, is because I want only to encourage others. I stopped coming here for a while because I was feeling better. Then I remembered how many people that were on here that never came back to say they were feeling better! I really would have liked to have heard more success stories as well as the hardships when I was going thru the hardest part. Its so important to lift one another, to let others know that everything is going to be ok again. This is a aweful drug. You WILL be fine, you WILL be great again. Please dont hesitate to send me any questions if you want to at any time. If i confused you, let me know please. I want only to help you. I hope this was helpful for you. May God bless you, heal you, and give you His peace. M

Also try warm salt water. Not cold. Warm worked better for me

But the burning started months before I ever tried to withdraw from the gaba. So I can’t think it had anything to do with withdrawal. That’s why I’m so upset - I can’t figure out why it’s happening or whether it will ever end. I know my Sjogrens predisposes me to such a thing, as does my anorexia I suppose because the nerves have been so malnourished for so many many years. I’m so afraid this will last forever, and I truly believe, when the pain and the searing metal taste is at its worst, that I can’t go on. I never thought I’d hear myself say those words and I’m scared. I know no one can help me.

Oh Lori... big hug! I’m so sorry to hear you feel this way. I too often feel like this, especially when you can’t find the solution to a problem. But there is always one. I believe in God, and I know that for every illness/symptom that exists, God created a cure too. You WILL find one, it’s only a matter of time and I’m sure that between all of us on here, we can start to come up with a solution. I truly believe this. 

Now that you’ve explained a little more. I’d like to share my experience also, if I may....

Before starting gabapentin, I was down to 5stone in weight. All bones I was.  My nerves too, were extremely dry and malnourished for 3yrs. That was until I was prescribed forceval soluble to help nourish my nerves. It’s a food supplement. Do you take any supplements at all?? 

Besides the forceval, I met a herbalist and im a great believer in natural healing. He told me about oyster shell water. You can research this online if you have the energy. Oyster shell water is an old Chinese remedy where you crush the shell and boil it in a cloth in water. This releases all the natural vitamins from the shell... it’s super rich in calcium and other minerals that we don’t get in our daily diet. I started taking a teaspoon of this water literally every few hours in the day and slowly I began regaining my appetite as it nourished my body. I’m now a very healthy 60kg even during withdrawal.

I don’t know if it’s something you’d like to try.... or even consider trying? It worked for me and I still take it daily. 

Either way, I know this isn’t a quick solution for you but it certainly will add the goodness in your body that it needs in order to start digesting heavier foods. It does take time, but it helped me a lot. I’ve been through heck of a withdrawal from having to quit cold turkey and still haven’t lost any weight from the daily minerals this water gives me. 

It may also be worth checking your cortisol levels? Mine always showed up normal in bloods until I decided to see a nutritionist and she Explained that an imbalance in cortisol makes us gain or lose weight, particularly during withdrawal.

I do hope some of this info helps you. Or at least gives you some hope.....

Much love xxx

Lori, sweetie listen, you ARE going to be fine again!! You arent where you need to be yet, where you want to be yet,,,but, you arent where you were! Look how far you have come already! There IS a plan for your life. A GOOD PLAN. This IS NOT how you are going to stay. Its not. Its a passing season. Period. Yes, you have and are going through a very very difficult time. Honestly, at one point, I didnt think I was going to survive this either. I also said to myself I cant do this anymore, it just too much, its too hard! I have so many issues, permanent injuries, and hoorible crippling pain that i didnt see how anyone could live like this. But,,once the gaba thoughts stopped, EVERYTHING changed. Gaba totally messes with our thought process. (thats what gaba DOES) those thoughts WILL stop, its the gaba receptors. REMEMBER....keep telling YOURSELF ITS THE GABA! IT WILL STOP. I PROMISE IT WILL STOP. Once that passes, you wont have that to tend with those thoughts and you will be able to deal with ANYTHING that comes your way! You must remember this!! Believe it. I came back here on this forum because I remembered how frightened i was too while going through everything. I remembered how much pain and side effects gaba caused me while on it and off it. I would have done much better if there were just a few people that remained here that got through this to tell us that there IS A END POINT. Im still in pain. Still need more surgeries, and its hard. But once the gaba crap passed it was so much EASIER. Please trust my words. I dont lie. When my mouth burned, nothing tasted right or good. Im thinking its one of the other meds your on thats causing the metalic taste. Have you gone online to research other peoples stories on those other meds your taking? Dont look at the manufacturer only, look at peoples stories. You may find others have the same issue. It may be 2 meds that dont agree??

Thank you so much for your kind words. I have been severely anorexic for more then 20 years and I do blame myself for so much of the nerve issues. I will try anything at this point to stop the pain and to finally finally gain weight before I die of this horrible disease. This isn’t the right forum for this discussion, I know, but thank you for listening and sharing your experiences.

Hi Michele, good to see you on line. I'm vdoing so much since stopping PT and now seeing Chiro. I'm about 6 wks of Gaba and most of the side effects are gone. Chiro said pt was aggrevating the nerves where I had surgery. Gaba tingling in legs still there somewhat. Not near as bad as it was. Sometimes I even forget it's there. Am resting now as I saw chiro today.

Take care of yourselve.

Marie

Supposed to say I'm doing so much better since stopping PT. (Silly phone)

Lori, this forum is for everyone and anyone thats hurting. We are all in this together. We all have issues and not one person is perfect. NONE. We live in a broken world. Its not your fault. Stop condemning yourself. Im serious. The culture has made all of us messy. Hollywood has played a huge part in this mess and on purpose too. They portray as being perfect and its wrong. They have been purposely been playing roles of violence, drugs, sex, divorce, etc. and they make it all glamorous and ok. Its not ok. Its wrong. Look around, you see it. Been going on for decades! The country is NOW finally being awakened to this dark culture change, and the people are being told what has really been going on. Now were starting to fight back. Fighting for ourselves, our children, and our families that are also broken from these effects. The drugs too. Illegal or legal. Govt knew what was going with drugs for a long time and they could have stopped that too. But they didnt.They get paid a lot of money, their greedy. Money is more important to them than people. Sad. You and me, people like us, have to fight back by pulling ourselves up and out of the mess THEY created, not us, they pushed this on us. Thats how we fight back by helping each other. Encourage, help, and lift one another. They want to keep us down and were not going to be kept down. Were going to get our lives back no matter how long it takes. We deserve it. Dont ever feel like you cant chat here, its for anyone who is hurting for one reason or another. We should always be able to go anywhere for support. Humanity. Gods love. We shouldnt have to go it alone. We all need people. May I ask where you live? Are you in the states?

Thats was so kind Leenz! See Lori, when we talk is when we find things in common and sometimes a solution or better, a good friend! Were all hurting inside, hearts have been broke too. But were all in this together! God blessed you Leenz. You know the TRUTH, you know the LORD! Thats why we are all a mess, from the evil one. We have to help others. Be a light in a dark world. Its what we are called to do. Prayers for all people here! Love. XX

Thats good news Marie! I could see pt aggravating the nerves, it did to me too terribly. Its good your starting to see good days! Now you will be able to exhale! I still have moments sometimes days too. But there are more good than bad now. I lowered xanax a bit more 2 weeks ago. I did fine, but this week i also lowered the opiod as well, had a couple of so so days. I didnt feel the opiod wd but it was the gaba feeling again. But it didnt last. Glad your doing better! Pt hurt me bad!!

Lori please don’t feel you can’t share on here just because it’s gaba related. Please do share, you need to be able to. No one will mind I’m sure. 

I’m sure you have already but do you think a nutritionist could help? And I strongly believe your cortisol hormone needs to be checked. Hospital bloods will always show it normal but if you are underweight then it will defo be unbalanced and a nutrition can surely help with this.

I know it’s easy for us to say don’t despair, but you will find a way fwd and sooner than you think. I’ve seen a lot of people trying so many different prescription meds through withdrawal and other things and yet the only thing that has actually helped me has been change of diet and eating fruits and vegs that will cool my body down. Aside from reducing inner heat and nourishing dry nerves, fruit (and fruit juices if u can’t eat well) allow your metabolism to build hunger. I couldn’t eat for 3 yrs, I was on a puréed diet. Now I eat a specific but much more varied diet but I’ll say again, all I’ve ever done (apart from taking this vile drug!) is have 2.5 ltrs water everyday, fresh fruit juices, raw veg and nuts and seeds in my diet. These things, more than meds, will replenish your nerves and your body, and therefore your mind. I know all too well how hard it is to mentally come out of the rut your stuck in when there’s not ample food and energy in your body. No matter how long you think it’s been, you CAN come out of this ??

I do believe Michele and I believe in the power of intent. If we keep repeating to our mind that we will get better, then by the law of the universe, we will xx

Hi Leenz! Yes, i do believe that our words matter! A kind word gives healing and unkind word can crush the spirit too. Words mean much. But saying words like ,im healed, thank you that im doing so much better than i was. and words like that DO make all the difference. Thank you. I agree with the foods too. Super foods are better than any medication. Avacado is fattening but its the good fat. Its a super food and probably the healthiest food we can all benefit from. It should easily digested too. I dont know very much about Loris eating issue, but im sute glad you do. I can learn from both of you!

Agreed 😊 being grateful cures a multitude of ills. But with the situation we’re all in, the mind fog  and the never ending symptoms do make it a lot harder. I try n take it one day at a time and since my dietary changes, I do feel more positive.

Yes, we should all be including avocado, beetroot, carrots, houmous, nuts and seeds in our diets. They’re full of energy and most importantly, a potent source of magnesium that we all need. Plus tuna, salmon, mackerel and trout, all high in omega 3,6,9 .  I’ve also been adding 1/2 tsp of organic flaxseed oil to a fruit and veg smoothie at breakfast... that’s also rich in energy. Nature gives us so much that science cannot. I will never touch another pill again. Whilst I’m not feeling perfect, I’m a lot better and I owe it to my nutritionist! Nature wins for me, every time.

Leenz, thats a great diet!! Good for you! I try to do my best with those same foods too. Its does make a difference. Im having a lot of pain today, i totally over did things. Its so nice out and im tired of not being a part of it daily. I do push myself at least 3-4× weekly to walk my dog even if hurts, and usually does. Today i totally over did it, stayed out too long, walked too much and now im paying! The sunshine feeds the body naturally too! Happy endorphines. It was so nice just to see other people and to just talk a bit. So simple right? Something most take for granted. I dont regret it. Hope your having a good day Leenz. Nice talking with you.

Ditto Michele, I tell myself to not overdo it but on the better days, simply cannot help myself! Hope you’ve recovered from your outing I’m finding that the current heatwave in UK isn’t helping me, it’s so draining but my body craves the sunshine. Catch 22. 

I totally understand, it helps so much to get out and socialise but even 8 months later, I’m finding that extremely hard. Most my symptoms have gone but the fatigue is still a killer. Some days I feel it’ll never leave my body but then other days, it’s like I never had it. I just keep praying and telling myself I’ll be running soon! 

Wishing you much peace & joy x

Hi Leenz, yes I did recover! It was worth it. It was a beautiful day. Im in the US states. Dont know if you have ever been here. Im currently in NY. But have a home in Arizona too. Az has sunshine and no humidity everyday. Not so much in NY. NY is damp, snow, high humidity, rain, etc. I want to go back to Az, its better healthwise. Easier for me. Smaller home. But...I cant go anywhere just yet. Cant sit to drive or fly. Flying would be 7 hours plus waiting at gate, checking in, etc. Driving will take about 5-7 days. I will need my car so im wanting to drive. My bff, now husband flew me here into NY on a medical flight. It was great! Layed flat the whole flight, with my little dog between my legs. Problem is the cost is 25grand! One day at a time. The pain pump I just had implanted moved. Its poking out of my tummy and I can see it sticking out, feel it. It dosent hurt but they probably have to either manipulate and try to turn it or go surgically back in again. Im ok with either way. The pump goes in between the skin layers so there no muscle being cut. Surgical pain, recovery is only 3 days. But it takes a few months to form enuf scar tissue to keep it in place. Hope your having a good day. How is the weather where you live? Do have 4 seasons there?