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Neurontin?


Shanti
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I'm having debilitating pain. Possibly Spinal Stenonis. I'm going to be having a nerve conductor test soon. In the meantime, the pain is too much to live with. It paralyzes me. Not to mention the nervous system pain from it, numbness, painful tingling etc. Vicodin doesn't work anymore. I take Naproxin twice a day. It only worked the first two days. I went in to the doctor today and she prescribed me Neurotin. She tested my legs and found my left leg very weak. I was prescribed a cane too. I'm desperate to relieve this pain, but a little scared of the Neurotin. Does anyone know if this is a hard drug to get off of? Any experience with it?

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

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Very sorry to hear of this, Shanti. Healing beams to you.

 

Yep, like all other neurologically active drugs, Neurontin has withdrawal issues.

 

If I were you, I'd take the lowest effective dose for you, which may be lower than what your doctor prescribed. Back to the digital scale....

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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Just this morning I looked at my scale and thought I should give it away to someone here that might need it. Then I thought "No, I'd better hold onto it a bit longer just in case". lol Okay, I'll try low dose. I took one and for the first time in a long time I have some relief from the pain. I'm going to go for it but just be careful.

 

Thanks for the healing beams :)

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

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They usually prescribe neurontin in high doses for pain ... I've seem people taking 2400 mg a day or more for pain, usually dosed multiple times a day and I've heard that it works well on pain.

 

I was put on it as a stabilizer for depression (I think one of those off label things the pharma got in trouble for). I was on 200 mg AM and 200 mg PM. It was easy for me to drop the 200 AM, but I will be weaning off of the last 200 mg just like I'm weaning off of Effexor. I think Rhi said she found that the taper is very linear meaning that you might experience some withdrawal symptoms, but they pass after a few days and they don't come back.

 

I am also sending you healing energy.

 

Karma

2007 @ 375 mg Effexor - 11/29/2011 - 43.75 mg Effexor (regular) & .625 mg Xanax

200 mg Gabapentin 2/27/21 - 194.5 mg, 5/28/21 - 183 mg, 8/2/21 - 170 mg, 11/28/21 - 150 mg, 4/19/22 - 122 mg; 8//7/22 - 100 mg
Xanax taper: 3/11/12 - 0.9375 mg, 3/25/12 - 0.875 mg, 4/6/12 - 0.8125 mg, 4/18/12 - 0.75 mg; 1/16 0.6875 mg; at some point 0.625 mg
Effexor taper: 1/29/12 - 40.625 mg, 4/29/12 - 39.875 mg, 5/11/12 - Switched to liquid Effexor, 5/25/12 - 38 mg, 7/6/12 - 35 mg, 8/17/12 - 32 mg, 9/14/12 - 30 mg, 10/19/12 - 28 mg, 11/9/12 - 26 mg, 11/30/12 - 24 mg, 01/14/13 - 22 mg. 02/25/13 - 20.8 mg, 03/18/13 - 19.2 mg, 4/15/13 - 17.6 mg, 8/10/13 - 16.4 mg, 9/7/13 - 15.2 mg, 10/19/13 - 14 mg, 1/15/14 - 13.2 mg, 3/1/2014 - 12.6 mg, 5/4/14 - 12 mg, 8/1/14 - 11.4 mg, 8/29/14 - 10.8 mg; 10/14/14 - 10.2 mg; 12/15/14 - 10 mg, 1/11/15 - 9.5 mg, 2/8/15 - 9 mg, 3/21/15 - 8.5 mg, 5/1/15 - 8 mg, 6/9/15 - 7.5 mg, 7/8/15 - 7 mg, 8/22/15 - 6.5 mg, 10/4/15 - 6 mg; 1/1/16 - 5.6 mg; 2/6/16 - 5.2 mg; 4/9 - 4.8 mg; 7/7 4.5 mg; 10/7 4.25 mg; 11/4 4.0 mg; 11/25 3.8 mg; 4/24 3.6 mg; 5/27 3.4 mg; 7/8 3.2 mg ... 10/18 2.8 mg; 1/18 2.6 mg; 4/7 2.4 mg; 5/26 2.15mg; 8/18 1.85 mg; 10/7 1.7 mg; 12/1 1.45 mg; 3/2 1.2 mg; 5/4 0.90 mg; 6/1 0.80 mg; 6/22 0.65 mg; 08/03 0.50 mg, 08/10 0.45 mg, 10/05 0.325 mg, 11/23 0.2 mg, 12/14 0.15 mg, 12/21 0.125 mg, 02/28 0.03125 mg, 2/15 0.015625 mg, 2/29/20 0.00 mg - OFF Effexor


I am not a medical professional - this is not medical advice. My suggestions are based on personal experience, reading, observation and anecdotal information posted by other sufferers

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Good to hear you're feeling better, Shanti.

 

These neuroactive drugs are often prescribed in doses higher than needed by a sensitive nervous system. Everyone's optimal dosage is different. So if you have the opportunity, go for lowest effective dose -- start very low and titrate up if necessary.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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My dose is 900 mg a day. I talked to my Pharmacist and he thought that was too high to start with and told me I should only take one a day and titrate up. I'll just keep it at that and see if it works well enough. This is why we have to be researchers about all these meds. I don't just simply pick up a drug at the pharmacy and take it. I question the pharmacist and then research when I get home.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

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Of all the meds I'm tapering, Neurontin is the easiest and most straightforward to taper. It's water soluble, too, which is great for liquid titrating.

 

My main problem with Neurontin was the cognitive side effects--it really trashed my ability to learn and remember new things, and I came very close to losing a previous job because of that. This job I have now was a last chance for me and I couldn't risk it.

 

I was taking it, at most, at 1800 a day, but was at 1200 a day when I was trying to learn the new job that I almost got fired from.

 

Otherwise, I would say that Neurontin is probably the least toxic-feeling of the meds I'm on. It clears out through your kidneys and your liver doesn't really have to mess with it.

 

It's prescribed for lots of stuff that it doesn't really work for, but nerve type pain like you're having is one of the things it does work for sometimes. If it's working for you, it's probably less toxic than many of the other options for pain control. I think I've read that it can cause some suicidality, which is a huge issue for me, and when I tried to c/t the 1200 mg I became extremely depressed and suicidal.

 

But tapering it has not been too bad. I think this might be a situation where a pharmaceutical medication actually IS justified. And if it stops working for you, and you're taking 600 mg a day or less, you will be able to taper off, as long as you do a realistic slow taper. Yes, you will experience withdrawal symptoms, but if you take it slow it won't be a nightmare and they do seem to pass quickly.

Started on Prozac and Xanax in 1992 for PTSD after an assault. One drug led to more, the usual story. Got sicker and sicker, but believed I needed the drugs for my "underlying disease". Long story...lost everything. Life savings, home, physical and mental health, relationships, friendships, ability to work, everything. Amitryptiline, Prozac, bupropion, buspirone, flurazepam, diazepam, alprazolam, Paxil, citalopram, lamotrigine, gabapentin...probably more I've forgotten. 

Started multidrug taper in Feb 2010.  Doing a very slow microtaper, down to low doses now and feeling SO much better, getting my old personality and my brain back! Able to work full time, have a full social life, and cope with stress better than ever. Not perfect, but much better. After 23 lost years. Big Pharma has a lot to answer for. And "medicine for profit" is just not a great idea.

 

Feb 15 2010:  300 mg Neurontin  200 Lamictal   10 Celexa      0.65 Xanax   and 5 mg Ambien 

Feb 10 2014:   62 Lamictal    1.1 Celexa         0.135 Xanax    1.8 Valium

Feb 10 2015:   50 Lamictal      0.875 Celexa    0.11 Xanax      1.5 Valium

Feb 15 2016:   47.5 Lamictal   0.75 Celexa      0.0875 Xanax    1.42 Valium    

2/12/20             12                       0.045               0.007                   1 

May 2021            7                       0.01                  0.0037                1

Feb 2022            6                      0!!!                     0.00167               0.98                2.5 mg Ambien

Oct 2022       4.5 mg Lamictal    (off Celexa, off Xanax)   0.95 Valium    Ambien, 1/4 to 1/2 of a 5 mg tablet 

 

I'm not a doctor. Any advice I give is just my civilian opinion.

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Thank you Rhi! That was very helpful to hear your experience. I really hope this works. Do you know how long it takes before it really kicks in? I had relief last night after I took it, but I think that was a fluke. I am pretty drowsy today too. I also noticed the cognitive thing today. I was having trouble remembering words as I was talking to my mom. I wasn't sure why I was doing that.

 

Yours and Karmas reply was so encouraging.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

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Hey Shanti ~

I'm weighing in late here ~hope all is ok •

I took Neurontin back in the 90s for pain ~not sure of dose but 1800 rings a bell • it had me so fogged out cognitively I didn't stay on long and probably CTd as I did with most meds back then • the brain fog is what I recall

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Hey Shanti ~

I'm weighing in late here ~hope all is ok •

I took Neurontin back in the 90s for pain ~not sure of dose but 1800 rings a bell • it had me so fogged out cognitively I didn't stay on long and probably CTd as I did with most meds back then • the brain fog is what I recall

 

 

Well I'm glad to hear you don't have memorable withdrawals. It doesn't seem to effect my mind at all. Not that I've noticed anyway lol.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

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What dosage are you taking, Shanti?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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What dosage are you taking, Shanti?

 

900 mg. 300 three times a day.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

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Shanti ~

Q: Did you try acupuncture

 

Sorry if posting in wrong area

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Shanti ~

Q: Did you try acupuncture

 

Sorry if posting in wrong area

 

No, not yet. I'm waiting until after I have the nerve conductivity test.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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I would taper. I believe it comes in a liquid, or you can have one made.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I would taper. I believe it comes in a liquid, or you can have one made.

 

I'm going to do a quick taper off the Neurontin. I'm going to try more natural things. I'm going to quickly taper as I wasn't on it that long. I also see that Neurotin has a side effect of weight gain and I am so tired of the weight gain! I'm off the antipsychotics and almost off the Paxil, and then I can finally lose this weight. I really feel like I'm starting to get my life back.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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YEAH (and the crowd goes wild ;)

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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Wait, Shanti, what about the pain?

 

It makes more sense to find the lowest effective dose for your pain. You might try lowering it a bit, wait a couple of weeks. Keep on doing that to see if you can get by with less.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi Shanti;

 

Pain is a big part of my story... my frustration in getting anywhere with pain docs is as frustrating as it has been with shrinks... what to do?

 

Not sure what you pain issues are, but mine were severe and constant pain starting in the neck and spreading to the head. The only time I cold turkey of ADs was in 2001, after seeing the "Professor" at a big teaching hospital's Pain Clinic...who after multiple investigations declared there was nothing there and left me with no options for seeking further treatment or investigations (maybe pride means they don't know how to refer, when they think they are the top of their local tree???)... But I was insane with pain.. and decided... well, these drugs don't work anyway... so I might as well dump them... Within two months, the perception of pain reach 12 out of 10!!!!!! And with no other options, started on Effexor for the first time... after about four more months, the pain became fairly tolerable... and I was back at work and within a year, travelling the world!!!!!

 

But pain broke through again in 2005... and after being bounced from referral to referral..and trying much hocus pocus (wouldn't care if any of it worked..)... finally I met a doctor with the humilty to say... "I dont' know, but you must see a doctor who has been trained at a particular university 150 kms away" They just happen to be world leaders in understanding pain... This group, if you have exactly what they treat, then take on their patients and stick with them until successfully treated... so much different to the conveyor belt medicine we have here... I don't know how often I have heard, "this works for 70% of people, sorry, you must the 30%... " and just leave me there stranded...again...

 

..and unnecessary and further debilitating surgery must to orthopaedics what inappropriate medication is to psychiatry.

 

Life can be a minefield... but having successfully beaten the odds in the field of pain... I feel I can access a certain amount of judgement and control over my own medical needs.

 

The only source of pain they could not treat was at the top of the neck because it is too close to the brain... but my pain perception dropped by 90%...

 

And this groups take on pain and it relationship to depression is instructive. They believe that chronic pain accompanied by depression is totally relived with the cessation of pain...100% of the time... and have the studies to prove it...

 

So my pain doc said... with the pain under control..." time to look at the Effexor...and by the way... you aren't depressed... it was the pain".

 

So now is the time... and my first drop of 25% in two weeks was disastrous (and the small amount of remaining pain, again went through the roof...)

 

So as of three weeks ago, I have reinstated the 300mg, joined this group... and now understand and am resigned to a very, very long taper... which I accept, if that is what is needed to go forward again...

 

So Shanti; I have found the pain world as big a minefield as psychiatry...and I have had to rely on my inner knowledge and growing wisdom to anticipates the traps and to find the good docs...

 

Hope your search is productive...

 

Regards

Gerard

 

 

 

PS turns out that Professor 1 is in an intellectual turf war with Professor 2, which I couldn't careless about, except that the suffer continues to suffer...and Prof 2 was correct all the way along!!! What to do???

Ativan: quite 1990

96-2001: Aropax (Paxil), Luvox. two CTs (bad)

2001-2012: 300 Effexor

Nov 2011: 25%, 2 week reduction (v bad)

Dec:2011" reinstate to 300mg

(Chronic pain condition, well managed)

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Hi Gerard. I can really relate. I just don't know what to do. It's so easy for me to say right now that I'm not going to take the Neurotin because I was just prescribed Percoset which is working, for now. But I know that will eventually stop too. I'm getting into a pain clinic sometime this month or next. The doc at the Rancheria said I have to wait for the new pain doc to arrive then he'll refer me there. I'm hoping I can get pain shots or something.

 

As far as a diagnosis, that is driving me CRAZY. All I know is that I have scoliosis and spinal arthritis. A lot of my symptoms are like Spinal Stenosis which I believe comes from the arthritis. All my pain is clearly neurological as I get zaps and electrical surges, Lhermitte's Sign, which is an electrical shooting down the spinal cord when you bend your neck forward. A lot of this is just like MS, but no lesions on my brain. My physical therapist and chiropractor both told me I really need to push to see a neurologist. I'm having the same ego issue with my doctor. She became rude with me last time I saw her. She said "Ya know, I have pain too, I wake up with pain but then when I move around it goes away. All of us have pain". It made me so mad! It this were that kind of pain it'd be no big deal to me. I've had pain like that before in the past and sure, take a couple of advil and walk around and it's manageable. But this pain brings me to tears and even walking 2 blocks makes me so much worse. She's starting to belittle my complaints and it infuriates me. Fortunately, she already referred me to a neurologist to have a nerve conductivity test, back when she was taking me seriously. She also said I'd have a spinal MRI. I hope she remembers that she said that! If she doesn't, then I'm taking all this to the new doc at the Rancheria and never going back to her again.

 

Alto, I just really didn't want to take the Neurotin because I'm so sick of these meds that cause weight gain. I don't feel it's working good enough to make it worth it. If it was making the pain bearable, I'd keep taking it. Idk what I'm going to do. Just have to wait for the tests and referrals now.

 

I do know my pain and not knowing what is wrong with me was a huge factor in my depression as well.

Taper from Cymbalta, Paxil, Prozac & Antipsychotics finished June 2012.

Xanax 5% Taper - (8/12 - .5 mg) - (9/12 - .45) - (10/12 - .43) - (11/12 - .41) - (12/12 - .38)

My Paxil Website

My Intro

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I do know my pain and not knowing what is wrong with me was a huge factor in my depression as well.

Of course it is, Shanti, and that's entirely understandable. Most people would react the same way.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

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Pain is the greatest evil to me ~im unable to think of any future ~the pain takes over my thinking (especially migraines and headaches) ~it's scary because I feel so helpless and hopeless

I never had tests show anything for me ~ I think its been muscle tension in neck leading to migraines

I went thru rhe opiates for years and then found a great chiro and acupuncturist who broke the cycle • I feel very fortunate although I still go through some flareups

I dont know all of the testing used now but thete are many interventional procedures to try before considering surgery

Shanti ~if you can find an anesthesia pain management specialist or Physical Med and Rehabilitation MD they tend to have alot of options

Glad to hear the Percoset is working for you ~fentanyl is another one that may help

Don't recall if you've tried tramadol but please be careful with that one• just found out it is structurally similar to Effexor and is an opiate ~many docs think it is NOT an opiate and safer because it is lime an antidepressant

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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