Short term low dosage Gabapentin still experiencing significant withdrawal symptoms

Treatment and medication
41

Keith

just wondered if your symptoms have improved. I am struggling to get off gabapentin too, although I was on it for a longer time (5 months). I was worked up to 900 over a period of 2 months but couldn't tolerate it so tried to come off it. I have tried to come off it 3 times now but the withdrawal effects are horrible. The withdrawal effects are numerous and can be very debilitating. My skin on my arms and face feels like it is crawling, kind of itchy and prickly. I wake up with waves and waves of heat, which is continuous. I feel woozy and lightheaded. I wish I had never gone on this drug. I have gotten down to 200 again but the withdrawal effects have gotten worse so I have gone back up to 300 with now relief. Did you succeed in getting off this drug?

42

I've been on 200 MG at bed for awhile and yesterday my dr and I thought we'd like to see if this could be one drug we could eliminate. So for the next 3 days I'm only to take 100mg. But this morning, the reason I've been on this on it, pain in leg and pelvic area is much worse and feels like my other medications are nonexistent! Withdrawal or needed drug? Thanks for any help.

43

I just found this thread. I've been active on the forums both in Shingles and PHN. I first got shingles back in October 2016, so now I'm 10 months out. At my highest dose, I was on 2700 mg per day. Now I look back and wish I had never done that. But the pain was bad, the doctor kept increasing so eventually I could function better. I've been slowly tapering since January, but reducing 100 mg per month isn't helping much. I'm now on 1700 mg, after my last reduction and having a lot more depression, confusion and memory issues. Heather, thanks for the info, I read that also, but couldn't find it. When I did a Google search, it was funny to have this pop up. It's so sad how little good info there is out there for us and how misunderstood our condition is and the meds they offer us. Thanks (I guess???) for confirming what I'm slowly figuring out. I've had some good days, but generally I'm just down and numb.

44

Hi my name is Terry I’m having side effects from these pills how long did you have anxiety and depression

45

Hi Terry, I'm not sure if you mean me or a previous poster. I have had only a little anxiety with the Gab, but I've had an occasional brief panicky feeling. I've had a lot of problems with depression and still have since this post 3 months ago. I'm now down to 1500 mgs/day. I was dropping 100 every month, but as my husband was facing a knee replacement, I didn't want to add the problems I get as I taper onto that. Well, that didn't work. The stress and lack of sleep from the whole experience (there were problems diagnosed on his pre-op work and we went down the Bad Medical Hole) caused an increase in my memory issues, pain and depression. I'm finally doing better and did drop two days ago to 1400. I figure I couldn't possibly feel any worse than I have the last 6 weeks, right?

This drug is awful! But when they have nothing else to offer you for pain, what else can you do? I'll also tell you that there are multiple manufacturers of the drug. I normally get it from Aurorobindo, which I tolerate better than others. When they switched the supplier I had worse side effects, FYI.

46

I need advice,I was prescribed 100 mg gabapentin for nerve damage, I took it for two days ,one at night before realising that the drug was making me feel even worse so I stopped taking it. I have been feeling weak and tired but that is about it 

47

I'm not a doctor, but have been dealing with this for 15 months and have done a lot of research. I have a medical secretary background which helps me understand what I read but I am NOT a medical professional, got it? However, 100 mg is a low dose of Gab. Do you mean per day or multiple times a day? Often doctors start at 100 3 times a day or even 300 3 times a day. The meds can also take several days to be effective and they often need to give an increasing dosage to determine the correct amount to relief the pain.  Yes, the gab causes confusion, fatigue,  mental fogginess and other odd symptoms. I have a love/hate relationship with it. It did help me function better and decreased the pain, but I'll be glad when I'm done with it.

What else can you tell us? Do you have shingles or PHN? When did it start? What over meds are you one? Shingles alone can cause feeling of fatigue, headaches, nausea and other symptoms. It IS a virus so you will likely feel ill in addition to the pain or itching problems associated with it.

48

I'm glad someone revived this thread. Here's another update from me. I'm now down to 1200 mg/day. I found that I did need to take at least 30 days before my next taper. I did and do have side effects, just like others, as I decrease. But the good news for anyone new to this is that as I dropped to 1400 mgs, I felt a change. The fog lessened, and short term memory got a bit better and my cognitive and processing skills improved too. I could list about 20 more things this darn drug does to me, but it did help with the pain. I did skip a taper, twice since I wrote this. Once during a vacation (I have problems when my body adjusts) and when my husband had surgery. I needed to be as stable as possible. I've had increased depression during the period that my body adjusted to the lower level. I've been tempted to speed up the process by a pharmacist said I shouldn't. I seem to be very sensitive to it (or maybe we ALL are and no-one knows it.)

49

Hi Benjamin, I also only took two consecutive doses of 300 mg, but it caused an adverse reaction resulting in an uncontrollable movement disorder. 

This drug is dangerous for many, then my prescribing doctor decided I didn’t need to know what my brain MRI results showed, and the doctor who ordered it, didn’t inform the radiologist that my main symptoms were twitching and jerking. So he concluded that I had a 5 mm lesion on my hypothalamus gland which was most consistent with a hamartoma, meaning I was born with it. 

10 years later, my newest MRI called it a cyst, and they want me to have a brain MRI every year. No treatment, just that expensive test with a dangerous contrast material. I think I had an infarction that caused a movement disorder called Ballism. 

You’re fortunate that it didn’t cause permanent damage.

This Drug is becoming  the replacement for opioids given before and after surgery and many pain symptoms. 

50

I really wish I could ask these doctors why they don’t prescribe a lower type of GABA drug called, Gabitril since it’s lowest dose is 2 mg. 

Doctors keep denying all the bad side effects, and I wouldn’t have developed a permanent uncontrollable movement disorder if the dose wasn’t so high. Only two consecutive 300 mg doses ruined my nervous system.

I found another lady who only took it for 2 weeks before developing a movement disorder on another group question about if anyone else had developed  uncontrollable eye movements. 

I also found online information that Pfizer is distributing to doctors, that includes warning about different side effects, including movement disorders.

I didn’t push the “I’m a US doctor,” but when I pushed print, it gave me 23 pages that’s approved by the FDA. 

51

Hi Keith, I just got to see this thread. Now that your post is a year old, hope you are feeling better.

After my double lung transplant, I was on GP 100 mg for more than a year. (apart from a pile of other meds Then I had my lobectomy about 8 months ago and I was on 500 mg GP for about 3 months. Then I tapered it and stopped as per the doctor 's advice and since then from last 3-4 months) I get severe muscle twitching in legs every single night which forces me to get up and then when I go to the bathroom it stops only for an hour or two to wake me up again. This results in disrupted and non refreshing sleep. Surprisingly I don't feel it during the day (may be I am walking or am active or that I don't notice it) This feeling of twitching is not possible to put in exact words to explain to the doctor Apart from it sometimes I feel chills and suddenly hot also some mood fluctuations too. I hope to hear if you are better now. Best wishes!

52

I took 1 300mg last night and now after reading all of these posts I wish I wouldn’t have.

 Do I need to taper off of just the one pill?  

God old bless all of you

53

I took 1 300mg last night and now after reading all of these posts I wish I wouldn’t have.

 Do I need to taper off of just the one pill?  

God old bless all of you

54

Different people have different reactions. Gab has helped countless people with the extreme pain of shingles and and improved quality of life. I have a love/hate relationship with the drug as I'm tapering off. But I was eventually at 2700 mgs! I assume you were given the med to help with shingles pain. If so, I'd follow your doctors directions for dosage. It may take a few days to help and you'll likely have side effects. How bad is your pain? Talk to your doctor about not taking it, that's your choice. I would have had NO quality of life at all without the drug. There's also some research showing that Gab can decrease the risk of developing PHN.

If you do want to stop, you can't "taper" unless you got a new prescription for 100 mg pills and decrease that way. But there's no need to do that. If you want to stop, tell your doctor and he'll tell you to discontinue it.

If I were you I'd give it several days or weeks to see if it helps and what the side effects are.

55

I’m taking it for undiagnosed pins and needles. It can become painful if I sit too long but I don’t have a lot of pain but the pins and needles along with the waves of goosebumps on my bum are driving me crazy. This has been going on for awhile. I go numb when I sit. I took the 300mg and I think it was just too much for me. I woke up dizzy and there is no way I could drive safely. It is letting up but I’m still groggy. I called the Doc and asked to be lowered to 100mg. But I’m scared of not being able to get off of this if I start since there’s not a lower does available. 

56

I also didn’t want to go beyond the first 300 mg capsule because the first dose made my hands tremor bad, but it resolved by morning. My husband didn’t think I had given it a chance to help my lumbar nerve pain, so I took one more. 

I wish I had thought about getting a small bottle with a graduated dropper, and dissolved the contents of the capsule, then put a small amount in water and drink it. How else can we test for sensitivity?  I felt like 300 mg was too large  a dose for me. They even make a liquid form, but most doctors prescribe the capsules which I discovered reach maximum strength within an hour. 

I’m only telling you how cautious we have to be, because I failed miserably on this drug after the 2nd dose, and it  caused a rapid onset of my movement disorder which is mainly twitching and jerking all over my body, and it’s difficult to live with.

Doctors protect this drug. After 4 years my neurologist finally sent me to a movement disorder specialist. I returned after a neck and brain MRI and she asked if I remembered to bring the MRI disc. When I got it out of my purse, I asked if she would give me an MRI review. She grabbed it from my hand and took off, and since my balance is bad, I couldn’t follow her. She returned and said, “the mass is the same size, it’s benign, it’s nothing.” Then she asked me the same question 3 times in a row, “ What about your neck?”  I told her that I wear heavy neck scarves, because it reduces the pain from the neck jerks. After the third repetitious question, I pursed my lips, and she said, “Your movements just changed, you’re Psychogenic.”  I was insulted, and told her she had been a waste of my time, and grabbed my cane and left.  Her diagnosis follows me around, and the 5 mm x 6 mm white mass at the entrance to my pituitary stalk, means nothing to other doctors.  

I doubt if  you would have side effects to stop after one dose, but your Dr. will probably label you as being non compliant.

When I discovered that there’s a very low dose GABA drug called Gabitril, which starts out at 2 mg, it proves that someone recognizes that starting low, and going slow is a better choice, but the people who developed Neurontin / Gabapentin even stated in an internal voicemail that “Neurontin is the Snake Oil of the 20th century.”  

I hope you make a wise choice. ~ Beth

 

57

I’m sorry to hear that you are having a hard time after stopping after only taking it for two weeks.  

I failed on this drug after only taking two consecutive 300 mg doses.

Neurontin was originally only  approved as an anti-epilepsy drug,

It gave me unrelenting  twitching and jerking all over my body.  It’s been  a living Hell!  We were looking forward to retirement, but it struck me down at age 59, or 10 years ago.

 

Your brain might recover since I found in a medical book that twitching can be caused by “transient circulation between the two sections, (posterior and anterior) of the pituitary gland”. They can see a 5 mm x 6 mm mass at the entrance of my pituitary stalk that looks like a white cloud.

Recently  I tried to take a picture of a moving object and it was blurry. I finally realized that since my brain mass is located in a very excitatory area, I think it’s buzzing and  it won’t enhance, but I’m not telling them.  

I tried to share a list from Drug. com of post-marketing side effects meant for Healthcare Professionals with a neurologist, and she refused to look at it. At least she ordered a combination EEG, and EMG, and they can measure the vibrations under my skin at 12 - 14 Hz. My “Orthostatic tremor “ diagnosis is better than the previous, “Psychogenic,” one but the question is, Can they help me? 

Have you developed a buzzing feeling under your skin yet? Mine didn’t develop immediately. 

I hope you will keep us posted Keith.

 

58

Beth, please tell me about this buzzing feeling. I’m in excruciating pain from unstoppable hard pressure tingling. From my pelvic bottom to my chest. It never stops. I’m trying to lower or taper off the Gabapentin but this has been going on for 5 years!!!  No one believed Me. I went to Soooo many Doctors and it’s all increase the dose. I’m worried about my pituitary gland but honestly afraid to find out. I have wondered how much tingling or movement goes on under skin and had no idea you could test it. I think it would be high. My vision is getting blurrier and I asked My GP for Neurologist I was declined!  Did You have pelvic or abdominal issues!  I’m so sorry this happened to You!  One Doctor admitted to My Parents that with the opiate epidemic their hands are tied on what to do for pain. So I guess that’s the solution!  It’s killing and seriously harming People too!

59

Hi Rener,  

I’m sorry you are going through “hard pressure tingling.”  That’s definitely one way to describe it. Mine started in my back muscles but my shoulders, arms, right hand, neck, gluts and feet bother me the worst.  I think it is coming from my brain stem, but I wasn’t given results from what the EEG showed through that skull cap.

The technician asked if I would sign a release for my EEG / EMG video and results to be used in Mayo Clinic Medical Schools, or maybe more since she said, “to teach doctors.”

I didn’t know at the time that one of their Neurology professors was conducting my testing. (I looked at his YouTube video)  I don’t think they have seen too many people like me. (Yeah, please learn something from this neurological nightmare!)

 Yes I know it hurts, some places worse than others, and makes muscles stiff, but my muscles jerk too. Sometimes I have a nerve zap, so I’m glad that doesn’t happen very often. 

My new primary doctor is pleased that I have a diagnosis based on tests. He was upset that another doctor said, “It’s Psychological.”  I told him, “She walked in the exam room with a diagnostic leaflet attached to her clipboard.”  I didn’t think that was fair.

I understand what it’s like to be passed around from one doctor to another. It’s like they drum up business for one another.

I hope you get better. 

 

60

So, two weeks ago tomorrow, I was prescribed 300 mg of Gabapentin at night for a week, then increase to 600mg/night. I had taken the 600 mg dose for 4 days. I had experienced a severe and insatiable hunger in the short time I was on it. Not to mention the constipation. I decided to stop taking it on the 5th day of the 600 mg. Two days later, I woke up, went to work and felt severely dizzy. Felt nausea, and my body felt heavy and sweaty. It got so bad that I came home and took ome of the 300mg to see if the feeling would subside, as I had school and had to do my midterm today. I started feeling jittery and angry. I came home just to lie down for a few moments and meant to make dinner. I just woke up and the entire area of my chest through to my back feels numb and heavy. My hands are shaking and my lips are numb. I have been asleep for 4 hours and woke up just now disoriented. What the hell is happening? I have come off of so many medications in the last 4 months. Fentanyl,morphine, tramadol, xanax, and ambien. I have had three failed back surgeries. I had been the fentanyl for 20 years. Gabapentin isn't even a narcotic. I don't understand why this is so different after such a short time.