[Mdazzle5]

Hi everyone,

To give you guys the scoop behind the reasoning for taking for Gabapentin, I was diagnosed with Thoracic Outlet Syndrome in March this year (left shoulder). It wasn't until April that I was prescribed Gabapentin. I gradually started taking 300 mg at first, then 600 mg, then 900 mg, 1200, and was ultimately put on 1800mg in June.

Each time I went to the doctor's, I was explaining to him that I didn't see any benefit from the medication. It made me drowsy, emotional, and it certainly wasn't helping out with the pain. Instead of taking me off of the medication, he insisted to wait it out and have me keep increasing.

At 1800mg (600mg 3x a day), the pain was still there. I felt like Ibuprofen and physical therapy were more effective than anything else. I continued my regimen of taking my medicine (Gabapentin, Zoloft, Turmeric, Omega 3, and Multivitamins) until there was one day I was out with my friends and missed two doses of my Gabapentin (only taking 600 mg). Literally, the day after, I had chills, hypersensitivity on skin, constipation, teeth grinding, increased back pain, insomnia, change in temperature perception (had the water on high heat for my bath and didn't feel the warmth at all), tingling in places other than my nerve compression, numbness, and tight leg muscles. The doctors couldn't believe how sensitive I was to the medication, but they told me to basically put back what I missed into my system- so I went back to taking the 1800mg and my body just still wasn't having it. When I continued taking it, I didn't feel any better.

At this point, my nerve compression was no longer even there. So, I talked with my doctors about weaning off of the medication completely. In short, here are the three weaning schedules I was given since the end of June:


from neurologist: wean 100mg every day, done with medication in 18 days
from Children's Hospital Sports Medicine Doctor: wean 100mg every 3 days
from Children's Hospital Pain Management Facility: wean 200mg every 2 days, then once at 500, decrease 100mg every 2 days

As you can see, I have reached out to many of my different specialists trying to figure out what the hell I can do to escape this misery. Since getting back on the medication and withdrawing from it, the side effects have included: chills, conspitation, hypersensitivity, teeth grinding, muscle twitching in legs, random muscle pains, numbness, terrible headaches, and surprisingly not even an increase of pain in my left shoulder (where my compression was) - which makes me wonder if I was right all along that the drug never worked for me. That being said, I know some people who have raved that this drug is a miracle drug- so I'm glad it has worked for some people- just clearly not the drug for me.

Anyways, right now, I am at 300mg (100mg 3x a day). Honestly, I feel as if my whole weaning schedule has been whack this whole entire time because of the lack of communication with my doctors. When it came to the point when I finally convinced my doctor that hey this isn't working and it's also interfering with Zoloft (I have acid reflux as well- so medications furthering my GI problems), they all seemed to finally piece together that I should have never been on Gabapentin and Zoloft together.

It's been a hell of a frustrating process and what makes it even more frustrating is that taking the drug makes me feel bad and withdrawing from it makes me feel bad, which comes in a trickier dilemma. I know that Gabapentin is supposed to be weaned off slowly because it can have severe withdrawal effects, but god I feel like I've been through the worst two months of my life withdrawing from this drug. It's taken me away from physical therapy, the gym, social events, etc.

Anyways, I'm only 20 years old and in two weeks, I move back for my senior year of college (August 22nd, to be exact). Ideally, I would love to just get this medicine out of my system, so I guess my question to you former and current Neurontin users- If I decreased by 100mg every 2 days and just got it out of my system completely on the 16th- would that be okay given my situation? Also, once it is out of my system, how long would the withdrawal continue for?

Ah, I understand that this is a very long and confusing story. Trust me, I've been on an emotional and physical roller coaster, too. I appreciate you all reading this over and giving me your input.

[Mdazzle5]

another note to add- this all was a really quick withdrawal and looking at other posts, i've seen people take a couple of months to withdraw from such a high dose, but since I had only been taking it for 2 months, my doctors were thinking it wouldn't be as bad. any insight on that at all?

haha i apologize for firing away all the questions- just in need of help and curious as well

[tamiloo]

I had been on Neurontin 300mg three times a day for over three years. It made me feel like a zombie all the time. I started using it before a surgery I had in 2011. Things I noticed over time was my memory became very short, I felt like I would stutter or stammer with my speech. I was somewhat dizzy, tripping over things. I was a mess. I wanted to get off of it for quite a while but was afraid of the pain it was helping me with. I also had the shakes all the time. My family felt as I did that it was something that needed to done also because I needed to be there in every since of the word.

I took the pills in the morning, late afternoon and at bedtime. At first I took away my afternoon dose all together because most of the time I would forget to take it. I then did every other day with the evening dose and then the same with my morning dose. I went of very faster than I probably should have but I had to do it. I am a full-time caregiver for husband who has MS so I needed to good for him. Also more dependable for my children and grandchildren.

I was able to adjust with my pain. I lost 20 pounds which made the difference with pain and getting around better. I have a really messed up back so I knew the weight loss was going to benefit me a lot. I did all of this in July and I am amazed at how much better I am doing

Hope all is well for you...look forward to hearing from you!

[McKenzie]

I took Lyrica and Gabapentin together for many many years. The only way I believe is to taper slowly and listen to your body. For me dropping the dose by 25mg of Lyrica every 2 weeks was as much as I could handle. Without realising these drugs had a withdrawal syndrome, I cut out the 1200mg Gabapentin suddenly. I was a mess for 4-6 months before I worked out what was going on. Slow and steady will win the race. If you go too fast you may fall in a heap and miss out on some important milestones at college.

[seriousc]

Just new, so didn't mean to quote the whole thing I was replying to...

I am 66 years old. Diabetic since age 35. Healthy until age 50. Many, varied, progressive problems since 50. Seems they 'must' be related but no one, including me, has identified how. Except that they are mostly auto-immune diseases. I have never been identified as having a psycho related illness, though I have seen psychiatrists, psychotherapists, in addition to MANY doctors of all persuasions.

Medication

So, medication is my current big issue (not identified in the list in the profile).

I used to take Tramadol for RLS and pain. It worked for 10 years, then stopped working 4 years ago. About one and half years ago I was prescribed gabapentin. In one year I gained 30 pounds. The following 6 months, I gained another 20 pounds. !!! I have never been overweight. Never even thought about my weight. And the gabapentin didn't even work for pain that well. My doctor doesn't seem to have a clue as to what else I can take. Any suggestions?

Also, I have fibromyalgia. Also perscribed gabapentin for that. It's not working. What else?

Your site, as well as others, states that gabapentin is the same as neurotin. My doctor says it is not. What? Is my doctor that bad?

side question: how come this site doesn't have drug names in SpellCheck?

Another drug problem: I take Celexa and Cymbalta to try to help with insomnia. After almost two years with a sleep therapist, a CPAP machine, etc., that is better but not great.

Are these meds fighting each other?
What are new, current, drugs to help me?
__________________________________________________
__________________________________________________

Originally Posted by Mdazzle5

Hi everyone,

To give you guys the scoop behind the reasoning for taking for Gabapentin, I was diagnosed with Thoracic Outlet Syndrome in March this year (left shoulder). It wasn't until April that I was prescribed Gabapentin. I gradually started taking 300 mg at first, then 600 mg, then 900 mg, 1200, and was ultimately put on 1800mg in June.

Each time I went to the doctor's, I was explaining to him that I didn't see any benefit from the medication. It made me drowsy, emotional, and it certainly wasn't helping out with the pain. Instead of taking me off of the medication, he insisted to wait it out and have me keep increasing.

At 1800mg (600mg 3x a day), the pain was still there. I felt like Ibuprofen and physical therapy were more effective than anything else. I continued my regimen of taking my medicine (Gabapentin, Zoloft, Turmeric, Omega 3, and Multivitamins) until there was one day I was out with my friends and missed two doses of my Gabapentin (only taking 600 mg). Literally, the day after, I had chills, hypersensitivity on skin, constipation, teeth grinding, increased back pain, insomnia, change in temperature perception (had the water on high heat for my bath and didn't feel the warmth at all), tingling in places other than my nerve compression, numbness, and tight leg muscles. The doctors couldn't believe how sensitive I was to the medication, but they told me to basically put back what I missed into my system- so I went back to taking the 1800mg and my body just still wasn't having it. When I continued taking it, I didn't feel any better.

At this point, my nerve compression was no longer even there. So, I talked with my doctors about weaning off of the medication completely. In short, here are the three weaning schedules I was given since the end of June:


from neurologist: wean 100mg every day, done with medication in 18 days
from Children's Hospital Sports Medicine Doctor: wean 100mg every 3 days
from Children's Hospital Pain Management Facility: wean 200mg every 2 days, then once at 500, decrease 100mg every 2 days

As you can see, I have reached out to many of my different specialists trying to figure out what the hell I can do to escape this misery. Since getting back on the medication and withdrawing from it, the side effects have included: chills, conspitation, hypersensitivity, teeth grinding, muscle twitching in legs, random muscle pains, numbness, terrible headaches, and surprisingly not even an increase of pain in my left shoulder (where my compression was) - which makes me wonder if I was right all along that the drug never worked for me. That being said, I know some people who have raved that this drug is a miracle drug- so I'm glad it has worked for some people- just clearly not the drug for me.

Anyways, right now, I am at 300mg (100mg 3x a day). Honestly, I feel as if my whole weaning schedule has been whack this whole entire time because of the lack of communication with my doctors. When it came to the point when I finally convinced my doctor that hey this isn't working and it's also interfering with Zoloft (I have acid reflux as well- so medications furthering my GI problems), they all seemed to finally piece together that I should have never been on Gabapentin and Zoloft together.

It's been a hell of a frustrating process and what makes it even more frustrating is that taking the drug makes me feel bad and withdrawing from it makes me feel bad, which comes in a trickier dilemma. I know that Gabapentin is supposed to be weaned off slowly because it can have severe withdrawal effects, but god I feel like I've been through the worst two months of my life withdrawing from this drug. It's taken me away from physical therapy, the gym, social events, etc.

Anyways, I'm only 20 years old and in two weeks, I move back for my senior year of college (August 22nd, to be exact). Ideally, I would love to just get this medicine out of my system, so I guess my question to you former and current Neurontin users- If I decreased by 100mg every 2 days and just got it out of my system completely on the 16th- would that be okay given my situation? Also, once it is out of my system, how long would the withdrawal continue for?

Ah, I understand that this is a very long and confusing story. Trust me, I've been on an emotional and physical roller coaster, too. I appreciate you all reading this over and giving me your input.

[seriousc]

First, when I complained that the gabapentin was not working for pain (fibro) and RLS control, my doctor said I was on a minimal dose (300 x 3/day) and I should double it. (This, in spite of gaining 45 pounds in 18 months and stiff/rigid leg muscles. Also, my eyes hurt and watered but didn't realize that may be due to the gaba. Also, I had complained about loss of balance, tripping and falling, but neither he nor I connected those. Of course, the normal side effects don't list these.

Now, he has agreed to lower the gaba back to the 300 x 2/day, then twice a day for one week, 1/day for one week, THEN gradually onto Tramadol. (I took Tramadol for about 10 years for Restless Leg and it was great. It suddenly stopped working about 3 years ago. So, we're trying it again, though my doctor was reluctant since it's a [very low level] narcotic.) p.s.: I had NO trouble coming off tramadol 3 years ago.

My question: what am I supposed to do in the meantime? for pain? RLS?
OTC Tylanol seems to help the most. Really??

[Dr. Smith]

Hi seriousc, welcome.

Originally Posted by seriousc

What are new, current, drugs to help me?

Do they have to be drugs?

About one and half years ago I was prescribed gabapentin. In one year I gained 30 pounds. The following 6 months, I gained another 20 pounds. !!! I have never been overweight. Never even thought about my weight. And the gabapentin didn't even work for pain that well. My doctor doesn't seem to have a clue as to what else I can take. Any suggestions?

Weight gain is a well-known side effect of gabapentin. Unfortunately, it's also a side effect of one of the more common alternative medications—Lyrica (pregabalin)

Also, I have fibromyalgia. Also perscribed gabapentin for that. It's not working. What else?

While there are many medications that are often prescribed for RLS and fibro, I know several people who are getting better results with both conditions by identifying food triggers and/or vitamin deficiencies, and taking supplements or adjusting their diets accordingly. This can take a little more effort than prescribing/popping a pill, and it doesn't always work for everyone, but IMO it's worth a try.

Your site, as well as others, states that gabapentin is the same as neurotin. My doctor says it is not. What? Is my doctor that bad?

Neurontin is a brand name for the generic drug gabapentin. Lyrica/pregabalin is not the same as Neurontin/gabapentin. Was there possibly some confusion about this?

Another drug problem: I take Celexa and Cymbalta to try to help with insomnia. After almost two years with a sleep therapist, a CPAP machine, etc., that is better but not great.

Are these meds fighting each other?

On the contrary, they're very similar drugs in that they both inhibit the reuptake of serotonin. These two drugs are not generally prescribed together, as it can be potentially very dangerous—possibly life-threatening—resulting in serotonin syndrome or neuroleptic malignant syndrome or other serious side effects.

Tramadol also has serotonin-norepinephrine reuptake-inhibiting effects.

You can verify/check this out yourself with any drug interaction checker. This doctor should be monitoring you very carefully.

These drugs can also be difficult for some people to get off of. A safer alternative might be to talk to your doctor, get off of these drugs, and boost your serotonin levels with a supplement (e.g. L-Tryptophan or 5-HTP). DO NOT take one of those supplements while you're still taking the Celexa or Cymbalta, as that could result in the same serotonin syndrome. Be sure to do this under a doctor's supervision.

Originally Posted by seriousc

I took Tramadol and Tylanol for 10 years for Restless Leg and insomnia, and then for RLS, insomnia, and fibromyalgia.

That may not be a good combination either. Tramadol is often combined with acetaminophen (Tylenol). If that is the type of tramadol you were taking, you may have been getting an overdose of acetaminophen/Tylenol.

If you are still taking Tylenol regularly, you might look into adding the supplement N-Acetyl-Cysteine to help protect your organs from potential damage from so much Tylenol.

Fibromyalgia and Chronic Fatigue forum

Movement Disorders forum including essential tremor, dystonia and Restless Leg Syndrome (RLS)

Doc

[Kitt]

Welcome seriousc.

[Ruth Jerks a Lot]

I wish I had been given full disclosure on my RX receipt. There was no warning that it could cause permanent harm. How difficult would it be for a prescribing doctor to print out a side effect sheet? I was too trusting, but Gabapentin doesn't even take your weight into consideration. One size fits all, at 300 mg, t.i.d. I failed on the 2nd consecutive dose, and developed a sudden onset of a movement disorder. - Where are the post-marketing side effects? Five years too late I searched and found them on **. "Gabapentin Side Effects- In Detail. Scan down to "For Healthcare Professionals" In the Nervous System section, are the Rare side effects. They claim only 0.1% which = 10,000 per million will develop Movement Disorders, (e.g., Choreoathetosis, dyskinesia, Dystonia.) Ataxia is at 13%. An older neurologist used those terms, plus described my right hand as being hyperextended in an ulnar fashion. Basically my right thumb pulled stiffly over my palm, and my middle finger joints didn't take long to bend backwards. If you find this difficult to believe, I posted several videos on ** under a nickname, "koolhand Boshie." which explains what happened in my brain to make me look abnormal. I also found a group that was answering a lady who wanted to know if anyone else had developed tics in their face and arms. I think it happens more often than they claim, especially at higher doses. Thanks for reading my post.

[Ruth Jerks a Lot]

Originally Posted by seriousc

Just new, so didn't mean to quote the whole thing I was replying to...

I am 66 years old. Diabetic since age 35. Healthy until age 50. Many, varied, progressive problems since 50. Seems they 'must' be related but no one, including me, has identified how. Except that they are mostly auto-immune diseases. I have never been identified as having a psycho related illness, though I have seen psychiatrists, psychotherapists, in addition to MANY doctors of all persuasions.

Medication

So, medication is my current big issue (not identified in the list in the profile).

I used to take Tramadol for RLS and pain. It worked for 10 years, then stopped working 4 years ago. About one and half years ago I was prescribed gabapentin. In one year I gained 30 pounds. The following 6 months, I gained another 20 pounds. !!! I have never been overweight. Never even thought about my weight. And the gabapentin didn't even work for pain that well. My doctor doesn't seem to have a clue as to what else I can take. Any suggestions?

Also, I have fibromyalgia. Also perscribed gabapentin for that. It's not working. What else?

Your site, as well as others, states that gabapentin is the same as neurotin. My doctor says it is not. What? Is my doctor that bad?

side question: how come this site doesn't have drug names in SpellCheck?

Another drug problem: I take Celexa and Cymbalta to try to help with insomnia. After almost two years with a sleep therapist, a CPAP machine, etc., that is better but not great.

Are these meds fighting each other?
What are new, current, drugs to help me?
__________________________________________________
Serious c I don't know if you will receive my message. _____________________________________________

Did you get off Gabapentin successfully? I thought I would find more people in this forum. I am 68, failed on Neurontin at age 59. All of my muscles hurt because Gabapentin gave me an uncontrollable movement disorder, which began in 2008. My doctor sent me to a psychiatrist. I told him that I was thinking about finding an escape hatch from this terrible condition. He gave me Lamotrigine, (another anticonvulsant) which came in a 25 mg pill, but he didn't want me to take that much. He wanted me to cut it into tiny pieces and take the smallest bit, once a day. I had to take this for a week before taking 2 small bits. I didn't know what he was watching for until I started laughing instead of crying. That psychiatrist was wise not to start a patient on what was the recommended starting dose. The point is that Gabapentin is also an anticonvulsant and they make patients start at a ridiculous high dose, not even taking into consideration your weight, or test for sensitivity. My introduction period was only 2 consecutive doses, 300 mg, and I immediately had an onset of a terrible movement disorder within an hour of the 2nd dose, and immediately called the pharmacist and the doctor. The nurse said, "Side effects always wear off." Not in my case. - I found a report from Gabapentin clinical trials that admitted that Gabapentin can cause twitching and choreoathetosis, during the introduction period. (My right hand developed Choreoathetosis within 6 weeks of the movement disorder.) Then they claimed that it would wear off within 10 weeks, after dosage reduction, and said this happened to epileptic patients who had prior brain surgery. I didn't have either problem. - I hope you have found something for your RLS. I stuff a pillow along my right leg which seems to control leg movements at night. I also found that 2.5 mg of Zolpidem, and 0.5 Alprazolam, and 3 mg of Tizanadine, helps me sleep, but nothing helps during the day.