cindylou: Gabapentin (Neurontin) Taper

[cindys]

I am new here, and need advice on tapering Gabapentin, which was prescribed for neuropathic pain, as a result of benzo cold turkey. After 2.5 months use of neurontin (gaba) at 900-1200mg I started to taper 100mg every 10-14 days. I have been tapering for the past 2.5 months, and now at 400mg. I realize you recommend 10% tapers but if I tapered at that rate, my taper would extend months more than I was on neurontin. I have noticed that during the last few cuts there has been an increase with anxiety, crying and tinntitus.

 

My questions are, should a taper period last longer than the time one was actually taking the full dose? 

I understand many say to listen to your body, and if you are experiencing WDs from taperng to hold until WDs subside, but sometimes WDs sxs do not subside ir one may not stabilize t the reduced dose, at that point, isn't it best just to push on with the taper, because one may not stabilize until off the drug?

 

Thank you so much for your help.

 

[Petunia]

Welcome cindys, thank you for posting.  I'm sorry to hear that you have been feeling unwell.

 

It would be helpful if you could provide details about your previous benzo use, you may actually be experiencing withdrawal from that, which the Gabapentin was masking.  Was the Gabapentin helping?  Were you having any other symptoms from your CT off a benzo?

 

Please put your drug and withdrawal history in your signature.  Putting a short version of your drug and tapering history in your signature helps people understand your context, it appears below each of your posts.  Here are instructions for how to do it:

 

http://survivinganti...your-signature/

 

To answer your questions.  In general, a taper from a drug shouldn't last longer that the actual time spent on the drug, but in your situation, you went on Gabapenin to stop withdrawal symptoms from another drug, so you may need to take into consideration the amount of time you were on both drugs combined.

 

Once you get back to us with more details about your drug history, we will be in a better position to offer support and suggestions.  I'm glad you found us.

 

Petu.

[cindys]

I updated my signature line, could someone please provide advice. Thank you so much

[mammaP]

Hi Cindys, thank you for updating your signature.  

 

I see that you  started to feel worse when you got below the 600 mark.  It seems that it was helping until that point

so you might do well to updose a little, maybe try 450 and see if it makes any difference.  It can take a few days

for an updose to take effect. If that does not help then another slight increase might help, until you are back at the

600 that was helping.  Once you have found the right dose I would hold there for a few weeks or even months  for

your nervous system to stabilise.  

 

I really feel for you because you did what you thought was best and now you are suffering withdrawal from yet

another drug   . I'm sorry you are going through this.  Let us know how you get on if you increase the dose. 

 

I am not advising you to go straight back to 600 because it is quite a large jump and could destabilise you further. 

Plus if you settle on 450 it will be less to taper later. 

 

I hope you feel better very soon, withdrawal is an absolute nightmare for some. 

[Cberg]

Hi Cindy,

 

I must be lucky because I was able to stop both Neurontin and Lyrica within a week without trouble. I wanted to ask you, however, do you mind telling me what causes your neuropathy? What do you plan to use to control it when you are off the meds?

 

 

 

Cbergens

[cindys]

Cberg, my neuropathic pain is a WD symptom of the ambien. Many who go thru benzo/z-drug WDs suffer from neuropathic pain which usually diminishes over time. Some going thru benzos WDs have benefitted from using neurontin others have not. There are mixed reviews regarding neurontin. I feel neurontin helped me with sleep and may of taken the edge off the neuropathic pain. But during month 1 and 2 after CT I suffered extreme total neuropathic pain (torso, limbs, head, buttocks, saddle region, eye...everywhere) it was at a pain level of a 10 for 6-10 hours a day. Now since tapering off the neurontin, after 100mg cuts, I have noticed an increase with anxiety, crying, and neuropathic pain. But the neuropathic pain is not as bad as it was.

 

So I do not plan to use anything more meds after i complete the neurontin taper. The only real healer from benzo/z-drug WDs is time. Smeimes additional meds complicate things. But it really is an individul decision, what works for one may or may not wok for another. 

 

I support taper of all meds now, and would never do a CT again.

[cindys]

mammap, thank you so much for your response. I am so anxious to get off the neurontin But I want to do it safely. I have concerns neurontin may hinder my recovery from benzos WDs, although current research suggest this is not true. I just do not trust the pharma companies regarding their reseacrh, and this drug has some controversy.

 

My concern is one may never stabilize even if you hold on a dose, so would it be best to push thru, since when one is off the drug you may suffer from WDs anyway? I know I have to weigh the pros and cons for myself. But at this point it is hard to determine which symptoms are caused by ambien WDs, neurontin taper or both?

 

I saw a post where one believed phenibut and neurontin may act the same in benzos WDs, and phenibut has been known to delay complete healing from benzos. I am concerned staying on neurontin long term may interfere with my healing from benzo/z-drug WDs.

 

Also the side effects of neurontin, concern me, I had swelling in my hands and feet at 1200mg, I currently have dry mouth and dry eyes. My other concern is neurontin does help me sleep, and although that may be a blessing, taking a pill that helped me sleep got me into this mess. (ambien 2.5 years 10 mg nightly), I just wnt my body to be chemically free, and heal naturally, BUT I may be causing myself more pain, and anxiety by tapering neurontin now. I just hate my body and mind and CNS controlled by chemicals.

 

Sorry, I have rambled on, I am so happy to have found this forum, I am active on the BB foru, but this thread is more helpful regarding tapering. Thank you so much for your insight, cindy

[Cberg]

Cyndy.

 

Well let me share a crazy story with you. I have had 9 back surgeries for neuropathy caused by 'disc compression of a nerve'. Supposedly, they released the nerve but the neuropathy never went away. This neuropathy started 3 weeks after I began Paxil. I have always thought in the way, way back of my mind, 'could this neuropathy not be from my back at all, but rather from taking Paxil?" Every 3 to six months I go for an epidural and or caudal injection into my spine and half the time it seems to work like magic and takes the horrible intense burning away, and the other half of the time it does nothing. I'm wondering, if it were coming from Paxil, would the epidurals take the pain away? I suppose, since pain usually has inflammation at it's root, I suppose it's possible. But this neuropathy became so horrendous that two years ago I hd two medical devices implanted in me to control the pain. They have brought me back to a functional life, but wouldn't that be a kicker if all the time it was from PAXIL? I've been withdrawing from Paxil for almost a year and I don't notice any difference in the neuropathy one way or the other. My neuropathy is an intense burning from the knees down although much worse on the left side. I also have intense pins and needles sensation. Does this sound anything at all like your experience - or anyone elses? I know that Paxil wd is said to cause 'neuropathic pain' but my pain started 3 weeks after I started Paxil.

[cindys]

cberg, I can not comment specifically about paxil because I never took it. But it would not surprise me at all if the paxil was the cause of your neuropathy and pins and needles sensations. I was in tolernce WD while taking ambien, and had symptoms of neuropathic pain, pins and needles, back pain/right houlder blade pain and vibrations. I finally figured out what was wrong with me, and the cause was ambien WDs. No doctor I have been to including 2 neurologists, 2 PCPs, 2 psychiatrists, 1 rheumatologist recognizes my symptoms as ambien WDs. It can be as bad as a benzo and recognized w/i benzo/z-drug forums. I even had my gallbladder removed because the doctor thought my pain was due to a small gallstone, but after surgery the pain was worse. That is because the anthesia contained a benzo!

 

So , yes I believe that is it quite possible that your neuropathic pain and the pins and needles sensation will go away or diminish shortly after you complete your taper. I hope that is the case for you. Keep me posted, cindy 

[cindys]

Please help me, I feel so lost w/o any medical support. I CT from ambien 5 months ago, and continue to suffer harsh physical WDs (neuropathic pain, vibrations, tinntitus) and mental WDs (anxiety, crying, panic). I have been tapering off of gaba after 2.5 months use from 1200mg now down to 300mg, gaba was prescribed for neuropathic pain, but my doctor does not believe in ambien (z-drugs) WDs. I was concerned with being on the gabapentin for longer than a few moths, and thought it would be best to heal drug free. But now at 300mg (100am, 100, pm 100 nightly) of gaba, my sxs seems to be getting worse, especially the anxiety and uncontrollable crying. Should I slow down the taper? Should I hold? If I increase would kindling be a problem? Is the the right time to taper off gabapentin or should I wait until the z-drug WDs subside more?

 

Thank you so much for your help. cindy

[bubble]

Hello Cindys,

 

I have merged your new post with your original thread because we have one thread per person policy here. In this way it's easier for all of us to follow what is going on and whenever you want to post a new question you just find your thread and post it there.

 

I'm sorry you are still suffering and I understand your dilemma. I personally don't have experience with Ambien nor Gabapentin but if I were you I would stop tapering Gabapentin now until withdrawal from cold turkeying Ambien subsidies as you wrote. None of us would like to stay on these drugs but the problem is they cause even more damage when they leave the system  so this is actually a harm reduction approach. I totally understand your reluctance to stay on one more drug and then go through a slow (and long) taper but your CNS who is the main authority in this process doesn't seem to agree with any other plan. On 19 August MammaP suggested going up to 450 mg to ease the withdrawal symptoms but if you stayed on the lower dose, I wouldn't touch it now and would just hold. When we make our CNS raw with CT, our best bet is to provide it with a stable environment and avoid any changes. As you yourself wrote, only patience over time helps us heal. All other interventions cause more damage.

 

I also had to accept the fact that I would stay on a very high dose of benzo to stabilise but I simply had no choice. That was the only way to not only avoid pain but also to avoid prolonging healing. It seems to me that your main problem at the moment is to accept the fact that you will stay on Gabapentin longer than you wanted and expected. But I fear that attempts to shorten that time will make the whole healing process not only more painful but also longer. 

 

The only supplements we found to help with anxiety and other WD symptoms without causing side effects are Omega-3 fish oil

http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/ and Magnesium

http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

 

Have you tried taking them?

 

In the symptoms and self-care section here there are loads of tips on how to find a relief from these awful symptoms. 

 

I hope you feel better soon. Keep us posted.

 

best,

bubble

[Rhiannon]

Hi--

 

Just want to add, we don't really agree here with that whole "push through it" thing, and all the worries about "kindling" and getting worse with holds. There's a lot of that on the benzo boards. In our members-only benzo area you can find the discussion process we have gone through under the topic of "tolerance withdrawal."

 

Your brain has been changed by the drugs, and now it needs time to change itself back. Please be gentle with it!

 

I had classic withdrawal symptoms, much like you are describing, when I came off gabapentin too fast. I highly recommend you hold right where you are and give your brain a chance to stabilize and heal. You may need to hold for many months. It won't harm you to hold for longer than you used the drug at the highest doses; your brain has already been changed by the drug, and you're at a much lower dose now, so holding will give your brain a chance to work on normalizing its chemistry without having the rug pulled out from it completely.

 

It's always a dance, between the harmful effects of the drugs and the harmful effects of coming off them too fast. Right now it sounds like the coming off is doing more harm than the drug, especially at just 300 mg a day. I'd advise you to hold where you are until your symptoms seem to settle down, even if it takes a few months.

 

Meanwhile we have a LOT of good information here. Check out the Tapering section, read the topics at the top and the stuff linked to in those topics.

 

Oh, and also: I know you know that Ambien withdrawal is a real thing, but I just wanted to give you more support for that. It's highly variable in different people. Some people seem to have little problem with it, but I've met others who had a terrible time.

[cindys]

Bubble and Rhi, thank you both so much for your advice. I am so grateful. It makes so much sense to me now, and I intend to hold at the 300mg now and reevaluate in  2-3 months. Going thru harsh WDs from the ambien (z-drug), I do not always think clearly, and  I now realize I must only make decisions when I am not in the anxiety and panic. Your explanations to me make complete sense, and now I am comfortable with my plan to hold for awhile, I do not need to do myself any more harm. I was so focused on the drug to me harm, not taking into consideration "pushing thru" the taper may do more harm.

 

Thank you again, I so much appreciate your sound , logical, and rational advice. Hugs, cindy

[bubble]

Dear Cindy,

 

I'm happy for you that you don't have major problems accepting the fact that it might take a little longer than you hoped. This is a big thing that we are all struggling with.

 

Alos check the post from 17 June on this thread:  http://survivingantidepressants.org/index.php?/topic/6447-best-of-sa/

 

A very clear and logic way in which Rhi described the basic neuroscience behind the drugs we are/were taking helped me tremendously to be at peace with the process. The focus is not on getting the drug out of the system (which only increases the trauma our CNS has been through) but growing a new brain. When you look at this proces from that perspective, it becomes a lot easier. This also means that we don't operate with fixed dates but more with very broad timeframes as you said. Maybe it will take less than 2-3 months but maybe it will take longer. In any case, you will feel it when you are ready. Just tune in with your CNS and listen to what it is saying through the symptoms.

 

I hope the symptoms ease soon and that you will find ideas that work for you in Symptoms and self-care section.

Also, when in doubt or anything, just write here

 

hugs,

bubble

[cindys]

I need your help. I am having a bad side effect from the gabapentin. I have been holding my dose at 300mg for the past month after tapering down from 1200mg. I have been having pressure pain with urination, and thought I had a UTI. But today a urine test was done at by my Urologist which showed significant blood in my urine, and they are sending it out to do a culture. I forgot to tell them that I am taking gabapentin, which according to my research gaba can interfere with urine tests. ( So I will call them tommorrow and let them know).

 

However, it looks like gabapentin is the cause of this blood in my urine. I called my neurologist who prescribed the gabapentin, and explained the situation, and he told me to stop the gabapentin immediately because of the blood in the urine, and since I am at 300mg it should be no problem, to stop now, or just reduce by 100mg each day, the next 3 days.

 

There is no way, I can reduce that fast, I continue to suffer from harsh ambien WDs, neuropathic pain is intense, and anxiety, panic and crying. So I am now forced to stop the gabapentin as quickly and safely as possible. Please can anyone give me any suggestions, How to taper now under this situation, these doctors are of no help! Thank you

[crazykatie]

Cindys hugs! I took gaba after a year full of fractures. Broke my hip in March then almost finished with pt for the hip n was in a bad car accident. That resulted in two fractures in my pelvis in addition to a few broken vertebrae. Anyhow my pain management doc kept saying I shouldn't have pain, I'm like I do!! He just kept insisting that I shouldn't. Anyhow, long story short a small about of pain meds n was put on Gaba.

 

I just want to let you know, from someone who did quit ct. It sucked for me. It made me suicidal terribly. Good news it lasted for 3 days n I was done with it. However, I do have to admit that I only took it occasionally. I don't like the following morning drugged feeling that it gave me which seroquel does the same to me. Hang in there sweets. You have people here supporting you!

[Altostrata]

Hello, cindy.

 

How do you know the gabapentin is causing the blood in urine? Do you have a kidney problem?

 

Please put ALL the drugs you take in the Drug Interactions Checker http://www.drugs.com/drug_interactions.html and post the results in this topic.
 

[cindylou]

I am confused how to post on this site. I previously registered as cindys on this site but had password issues and now registered as cindylou. I need some advice, and am not sure I am in the right area.

 

I have tapered off of gabapentin after 2.5 months use at 1200mg, I tapered off over 6 months, and jump at 75mg on 11/24/14. I am also 8 months CT from ambien and continue to suffer harsh WDs from ambien. Gabapentin was prescribed after I CT ambien because of neuropathic pain (intense body burning) from ambien WD. The body burning is all over torso, limbs, head,back, saddle region. But I never thought the gaba was of any benefit with the neuropathic pain, but it did help me sleep, especially at the higher doses. But gaba made me groggy and caused dental problems, cavities, and stained my teeth. So I wanted to get off of it.

 

Since, I jumped off gabapentin at 75mg 1 week ago, for the past 3 days, I have had increased anxiety, and night sweats, PJs and sheets are soaked, and there seems to be an increase with the neuropathic pain. During my last few months of tapering off gaba, I cut 25mg a week, and never noticed any gaba WDs of any significance, But it more be difficult to determine what is gaba WD and what is ambien WD.

 

My questions: Since my sxs of neuropathic pain, sweating, and anxiety increased when I jump at 75mg, should I reinstate at 75mg, and taper from there?

Would it reduce my gaba WDs to reinstate at 75mg?

Or since I am a week off from the jump, should I just wait it out?

How long does gabapentin WDs last?

 

I don't want to shock my CNS too much or confuse it again, since I already CT ambien and still have very harsh WDs.

 

Thanks so much for your help, cindylou

[cindylou]

* post moved from tapering forum

 

How long does gabapentin WD last? I tapered off of 1200mg after 2.5 months use. I tapered over 6 months and jumped at 75mg. Since the jump off at 75mg a week ago, I have had an increase in neuropathic, intense body burning pain, night sweats, heart palps, anxiety and no sleep for the past 3 nights. I do not know if I should of jumped at 25 instead of 75mg? If I should reinstate on gaba? Or since it was over a week ago since jump should I just try to hold out another week and see if things settle down?

 

I am 8 months CT from ambien and suffer harsh physical and mental ambien WDs.

Edited December 2, 2014 by Petu
added note

[mammaP]

Hi Cindy, I found your original thread and merged your latest post so that they are both together. I've also changed the 

name on the topic title so everyone knows it is still your thread. You can stick with Cindylou if you can't access CindiS,

it will be fine. 

 

As it is only 1 week since you stopped neurontin  I would reinstate ASAP, a smaller dose might be ok, maybe 60mg

will help the withdrawal symptoms. It is hard when a drug causes side effects because often withdrawal can be worse

than the side effects as you have discovered.  Waiting it out is never a good idea, as withdrawal is unpredictable and 

could get even worse.  I hope that you feel better and stabilise very soon.

[Rhiannon]

Did the hematuria go away or are you still having blood in your urine? Did you ever see a kidney doc about that?

 

I'm inclined to agree with Bubble, maybe reinstate a small dose, 50-75 mg, and just hold that there. Coming off the last bit of the drug is actually the trickiest part and has to be done the most slowly. If you're not having a severe reaction to taking the gabapentin then it's better to hold on a small dose for a while, until you're feeling more stable, then taper off slowly by no more than 10% of your current dose. (So if you were taking 75 mg for example you would cut no more than 7.5 mg; at 50 mg no more than 5 mg; etc.)

 

On the other hand if you're still having blood in your urine and the docs are sure it's the gabapentin causing it, then I'd say just bite the bullet and ride it out.

 

As a rule, if you're not having severe toxicity with a drug, it's better to taper more slowly.

[cindylou]

mamma and rhi, thanks so much for responding. Today does not seem to be as bad as yesterday. But I have not had a good day for 8 months since CT from ambien. The urologist could find no cause for the moderate blood in urine. Whether it is the gaba or not, he is unsure. But I did have other side effects from the gaba, with teeth decay and swollen hands and feet, being groggy. I was a zombie on the gaba. 

 

I understand your reasoning with reinstating at a small dose, I just want to try to hold off for awhile. I am just praying I can handle the burning pain. 

 

How long does gabapentin WD usually last? I have read days, to weeks, months, and years. But I was only on it < 8 months.

 

Thanks so much for your advice, cindy

[Altostrata]

How are you doing now, cindy?

[cindylou]

altostrata, thank you so much for checking in with me. It has been 5 weeks now since I jumped off gabapentin at 75mg. It is difficult to tell what sxs are due to ambien WDs and what may be due to gabapentin WDs. But I believe that the sxs I continue to expereince are due to ambien WDs. I continue to experience harsh physical WDs from ambien CT (neuropathic pain, heart palps, tinntitus, sweating, back pain, intense body burning, head and scalp pins and needles sensations) and anxiety, panic, crying. 

 

The main reason I decided that I needed to taper off the gabapentin was that I realized it did not significantly reduce the neuropathic pain, which it was prescribed for. The neuropathic pain is a WD from ambien. Once, I relized that gabapentin was of no benefit to me, I felt it was best to taper off gaba. What I do know for sure is that gabapentin did help me sleep, and since being off gabapentin, I can only sleep 2-3 nights a week 4-5 hours.

 

Ambein WDs is the most horrific thing I have ever been thru, as you know it is similiar to benzos WDs, so the (Benzos Buddies) BB site has been very helpful.

 

But I want to thank you for all your advice on tapering off gabapentin, I knew I had to taper off safely, and would never CT another drug again after ambien.

None of my doctors recognize ambien WDs, and if I did ot discover BB I would of ended up polydrugged. My doctors have prescribed over the past 6 months (prozac, elavil, lyrica, steroids, xanax), all I refused to take. They have told me I am noncompliant with their treatment plan. 

 

I appreciate so much your advice on tapering gabapentin, and thanks to you all, I am now med free. Gabapentin caused my teeth to decay (3 cavities) and discolored my front teeth. 

 

I just can not believe the damage these drugs can do, and that those in the medical field have no idea how to taper their patients off these drugs safely.

Thank you again for your help, I will always be grateful. I have referred alot of my fellow BBs to your site for help with tapering off their AD.

 

Always, cindy

[Altostrata]

You're welcome, cindy. Please let us know how you're doing.

[cindys]

Altostrata, I wanted to give you an update, you were so kind to me with your advice on my tapering off gabapentin. After 6 weeks use of 1200mg gabapentin, I tapered off over 6 months and completed my gabapentin taper 11/24/14. Looking back, gabapentin was not that difficult tapering compared to my CT from ambien. Gabapentin did cause my teeth to decay, I ended up with 3 cavities. I am so thankful to be off gabapentin, and appreciate your sound advice. Thank you.

 

Unfortunately, I am still experiencing WD after 16 months CT from ambien. However, things are very slowly, and gradually improving. I was able to return to work after being off 1 year. I still suffer from alot of physical  WD sxs (burning, back pain, heart palps, insomnia, tinnitus) but the mental sxs are gone. As painful as the physical sxs were the mental sxs were worse. I never suffered from any mental health issues until my CT from ambien. It was horrific as if my brain was hyjacked, I had very dark depression, uncontrollabe crying, anxiety, fear of being alone....but the good news is the the mental sxs went away after 8 months, and now the physical sxs have lessened in intensity and frequency. I expect it will take me the 2 year mark before i am completely recovered from my ambien CT.

 

Thank you for your help, during my time of despair and hopelessness, I will forever be grateful to you . Always, cindy

[Altostrata]

Thank you, cindy.

 

Please see our Symptoms and Self-care forum for suggestions about how to cope with symptoms http://tinyurl.com/3hq949z

 

And please stop in and let us know how you're doing.