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Neurontin.... I am so scared right now


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This is my first post after lurking for quite a while here.

 

I did a rapid 6 week taper off 2 mg. Klonopin with my last dose on January 1.  Like so many here I have been through complete hell.  My anxiety has been unbearable and most nights I only manage 2 hours of sleep. I have also been suffering from severe nerve pain. On occasion I may sleep 5 hours or so.  I have tried the usual drugs for sleep like Trazadone, Seroquel, etc. and I can't tolerate any of them.

 

I've lost 40 pounds since last year.... approximately half of that within the last 6 months.  I am small boned  5'9" and down to about 119 pounds.

 

I have been having to have all sorts of medical tests run.  Prior to a cystoscopy last week I was in a severe state of DP/DR and ended up in psychiatric hospital for 3 days.  i have been having all sorts of symptoms that point to something seriously wrong... not just benzo withdrawal.  The doctor there put me on Buspar, Remeron and Neurontin. When I left the hospital I decided not to take any of the drugs as I felt they weren't working and due to the fact my resting pulse was between 95 and 105.

 

The first few nights home from the hospital I slept about 6 hours and then the next night I had a horrible hallucinaginac (sp?) type sleep.  The next few nights I was back to sleeping about 2 hours and anxiety was back through the roof and I was feeling extremely suicidal. The anxiety I have felt has been pretty much unrelenting. I went for about a week with the fast resting heart rate, horrible nerve pain, noise sensitivity and then realized (from posts here) I was probably having Neurontin withdrawal. So anyway, on Friday night I started back on the Neurontin. All through the weekend and up until tonight I seemed to be calming down a bit, altho still not sleeping.  Today the pain, noise sensitivity and extreme anxiety are back  worse than ever.

 

I am wondering should I go ahead and up my dose? By the time I left the hospital I was on 200 mg. in the morning, 300 mg. in the afternoon and then I didn't take the last dose 300 mg. that night. (The doctor had planned to put me on 300 mg. 3 times a day).  I have only been taking 200 mg. 3 times a day since I restarted.  If I up my dosage will I get some relief?

 

I've also got a kidney stone that is lodged in my kidney and will probably have to have lithotripsy done soon.  In addition, the other symptoms I'm having point to something serious like cancer. (No, this isn't a case of benzo hypochondria) I'm having classic symptoms of leukemia and I'm so scared, but will have to have a bone biopsy.  My benzo withdrawal has been extremely rough but I attributed all the symptoms I have been having to withdrawal. What a big mistake that's been.

 

Anyway, I don't have a doctor who understands benzo withdrawal, yet I have to get some relief in order to deal with all these medical procedures I have to have done.  I am nothing but skin and bones and my body is in constant pain.  I have resolved that I am dying. Yet I desperately need relief.

 

Again, should I go ahead and up the dosage of Neurontin to what the doctor wanted me on? ANY sort of guidance would be appreciated.

 

 

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SusieQ, I'm sorry you are feeling so badly, it does sound like you have a lot going on right now. I don't know about others, but when I did a 5 day taper off of Xanax, I ended up at 120 and I'm 5'10". I felt like skin and bones too.

 

I am curious about your nerve pain. I had to take neurotin too, for a few months, due to herniated discs in my neck, but I couldn't handle a high dose. I always wondered whether it was withdrawal symptoms or my neck. They were electric shocks. I had brain zaps, definitely from w/d, but sometimes I had other electric shocks too. Does your doctor have an explanation for your nerve pains?

 

I couldn't tolerate seroquel or trazadone either, I threw them away. Some people are highly sensitive to drugs, maybe you are one of them.

 

I can't answer what you should do, but my feeling is that sometimes when a doctor doesn't know what to do, they start throwing meds at people and this can throw their body into all kinds of symptoms that are directly related to the meds...but I am not a doctor, I don't know your test results, but I would definitely have them do all the tests they are planning on doing, but I would also get a second opinion.

 

I hope you feel better soon, and other BB's will come along shortly to give their views. Welcome to BB.

 

 

 

 

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SusieQ, I'm so sorry you're not feeling well right now, I wish I had an answer for you. Was the Neurontin given to you for the benzo withdrawal? I think you should seek professional help on your questions. You can possibly call a nurse hotline at your nearest hospital and see what they suggest and/or ask your doctor. Your symptoms could be from other things unrelated to benzos so I'm not sure how to answer you. I'm sorry you're feeling so bad  :therethere: 
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Hi SusieQ,

 

I was on both Klonopin and neurontin and I can tell you that once I tapered off of klonopin (too quickly) I also had terrible nerve pain.  I still had the neurontin "on board" but I did discover that it seemed to "mess" with my withdrawal in some way.  Another buddy here kept gently telling me that it would only prolong my recovery, and I could tell that was happening.  The pain that would just drive me almost crazy was this burning nerve pain in my back and the neurontin would help with that, but I had to keep upping my dose to get any relief.  I SO understand what you are going through with the decision about what to do.

 

Is your doctor sympathetic to what you are experiencing in terms of klonopin withdrawal?

 

Also, can you tell us what sort of symptoms you are having that point towards leukemia?  I, like you, have been given a diagnosis of something other than benzo withdrawal and so am having to be SO careful not only in watching my body and my symptoms but also in posting to others questions, as I don't want to mislead in any way.

 

I am terribly sorry about the kidney stone.  I have had one before, and it is one of the most painful things I have ever experienced.  I don't know how I would handle THAT pain along with withdrawal.  I hope that you will keep posting here, as you go through all your testing.  You are wise to have the tests done, and I hope and pray that they come back negative.

 

~Leena :smitten:

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I am on 2400 mg of gabapentin (neurontin) per day for a spinal cord injury, and it does help my pain. I tried to taper off it a few months ago (although much too quickly) and decided since it was helping my pain to stay on it for awhile. I can tell when I'm overdue for a dose though, because of some of the symptoms you describe. Like the others, I can't say whether you should updose or not...that's going to have to be your decision. Personally, I was only on 1200mg/day when I tapered a few months ago (which I took all in one nightly dose), but when I realized it was helping me I decided to take it during the day as well (so I now take 600 am, 600 afternoon, 1200 bedtime). If it is actually helping you (or was helping you at the higher dose), then it might be worth it to updose. If not, and you're just thinking about increasing the dose to minimize withdrawal symptoms from it, then maybe it would be better to stay at the lower dose (after all, if you updose that's just a longer taper you'll have to undertake at some point).

 

Hope this helps and please keep us posted.

 

Libby

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  • 2 weeks later...

Hi - I have been having a real tough time and went back to my psychiatrist who says she is an addictions specialist - she just put me on neurontin - 100 mg.  it has only been a few days. after reading so much on here about it i feel really bad but the anxiety has been so terrible.  my aa sponsor is a complete health freak - eats only raw vegetables; very knowledgeable on meds - she was on neurontin and her naturalist advised her it was ok.  she said she was only on it a couple months and that she got off easy.  she did say it made her feel "flat".  i felt that too but it is sometimes better than the complete intensity of this w/d. 

i feel like a failure that i filled the script but i have felt sort of desperate to have help i guess. 

appreciate any feedback.

thanks so much

panther

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Hi Pan,

 

I can so sympathize with you, wondering if you are doing the right thing regarding the neurontin.  I posted a little further back in this thread about my experience, but would never tell anyone NOT to do something based on my experience alone.  100 mg. is the smallest dose you can take of neurontin, I believe.

 

Can you tell me the symptoms that the doctor gave you the neurontin for?

 

~Leena :smitten:

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Hi - I have been having a real tough time and went back to my psychiatrist who says she is an addictions specialist - she just put me on neurontin - 100 mg.  it has only been a few days. after reading so much on here about it i feel really bad but the anxiety has been so terrible.  my aa sponsor is a complete health freak - eats only raw vegetables; very knowledgeable on meds - she was on neurontin and her naturalist advised her it was ok.  she said she was only on it a couple months and that she got off easy.  she did say it made her feel "flat".  i felt that too but it is sometimes better than the complete intensity of this w/d. 

i feel like a failure that i filled the script but i have felt sort of desperate to have help i guess. 

appreciate any feedback.

thanks so much

panther

for

 

Pan,

 

First, congratulations for being benzo-free.  :yippee:

 

I think it's really hard to say what to do. You just jumped so from what I have gleaned from people tapering and then going off, at first they have some stronger symptoms and then they have longer and longer windows.

 

If it were me, if there was no medical reason for the neurotin (gabapentin), I would not use it...but then again, I don't know your situation. I had to take it for several months because my medial branch nerves were in severe nerve pain due to herniated discs in my neck. I went off of it because it didn't stop the nerves from pinching, it just stopped me from feeling it...in any case I didn't have a problem coming off, but I wouldn't start something if I could possibly help it.  

 

I hope you aa sponsor eats more than raw veggies, you have to have a balanced diet. :)

 

I would start a new thread too, if I were you, because of all the people on here experiencing problems due to gabapentin, you will probably get a wide variety of feedback on others experience with this.

 

I hope you feel better soon and how wonderful you are off the benzos.  :thumbsup:

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Thanks so much for writing to me.  it means a lot to me.  feel so lost and alone during this.  the psychiatrist says she has helped people off benzos for years and said this is what she used for w/d.  she also said i was not n enough to have w/d sympthoms so that makes a statement about her true expertise. 

i do not feel good about taking it;  i researched it a lot.  i do not like how it flattens me but it feels better than the mania kind of feeling i have from getting thru these days alone.  but i do have my 2 dogs a cat and a rabbit and friends.  truthfully, we are never alone so i should stop saying that.  it gets me all into the victim being single baloney that is silliness and negative.

i want to go back to work for the distraction but that is my big fear - that i can't handle it yet.  it would be so hard for the high school to start the year off with a sub.  i guess things like that do happen.  i guess it would be an interim teacher.  i want to much to try but this crying thing and the anxiety...i just don't know...

the neurontin was just a shot at seeing if i could get stable enough to make it back to work in a couple of weeks.  i guess i could get more healed by then. 

i should start a blog.  any ideas on what to name it. 

i am going to not get all into the neurontin thing with a blog.  i am afraid it will scare me.  i am going to try not to take it..maybe i will blog it.  i am so darned scared.  wish i had a time machine...smile.

you are so kind to write to me.  here i am with the self esteem of an amoeba...

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[8d...]

I was C/T'ed from 3mg of K, 1mg of X and 10mg of Ambien in October 2010. I was put on 300mg of Neurontin 3x/day in rehab to "help" w/ the w/d symptoms. I'm not sure how much it helped b/c I was pretty messed up for the 4 months after C/T and I was still on the 900mg/d of Neurontin. I STILL had the nerve pain, the skin burning/tingling, ALL of it...the Neurontin did little to stop that.

 

I reinstated to 1.25mg of K in Feb to taper and stayed on the Neurontin for fear that stopping it would make things way worse. So, I'm going to worry about finishing out my taper of K first and then taper the Neurontin after that. I can't say that the Neurontin has really helped/hindered my recovery. I don't know b/c I was put on it the very first day that I was C/T'ed.

 

I do know that it's water soluble and can be tapered slowly just like the Benzos. You can use a syringe and just toss a small amount each day in order to get off.

 

It's up to you whether or not you want to stay on this drug, but it's not really proven to help w/ w/d all that much. It might take a very, very small edge off- I don't know...it is just another drug that we'll have to taper off of down the line. I wish you the best with your decision. Ultimately, we'll still have to suffer through the w/d and get to the other side- Neurontin or not.

 

Hang in there. You will heal. Much love, Nicole

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Hi Pan,

 

First of all, this experience brings many of us to our knees...and it IS so hard because the ones who usually help when we are not feeling well (doctors) are generally not very helpful when it comes to drug withdrawal.  What they will usually offer is another prescription.

 

I like what Nicolette said...about the neurontin not helping her nerve problem...it just helped not to FEEL it.  That was also true in my case...it helped me not to feel my nerve pain, but then it took increasingly larger doses to do the same job.  And there were a lot of negative trade offs (it made me depressed, it raised my blood sugar, made me just feel "out of it").

 

What about the idea of subbing for a year?  Would that jeopardize your full time teaching job?   I was a kindergarten teacher for a few years (not NEARLY as pressure packed as teaching high school) and I know that I could not have taught full time during my first months off of klonopin.  I agree that distraction is really important...but you don't want to put yourself in such a stressful situation that you find it even harder to cope.

 

I have seen so many other buddies benefit greatly from exercise, in terms of getting their spirits up.  Have you felt like you can get out and walk? (and walk and walk...)?

 

I know how awful this is for you...but it WILL get better and better

 

Much love,

Leena

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Subbing is really tough here and i could not live on what it pays.  i do have disability ins and could take a 3 month medical leave - i did that last year but the days here were tough.  there is so little i feel like doing so the days are long.  it may be what i have to do. and so be it i guess.  i guess i have to face that.

you are right about the neurontin.  i am so ashamed that i took it.  or am taking it.  i do not like the depression from it.  any drug right now is not a good idea.  as a recovering aa person i sure do know that. darn it all.

i put my little dog in the bike basket and ride to the park a lot and swim and things.  i know it would be better to do more.  i can see how the nurontin is taking that away - so that is an excellent point against it that i just realized while typing this.

are the days hard to face for you? they are so intense.  i guess that is what i needed a break from - the terrible intensity...

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Hi Pan,

 

Please do not feel guilty or beat yourself up about taking the neurontin.  When you are feeling so bad, and you think there is something that will help, it is the natural thing to do to try it.  During my early days off of klonopin, I would try and try to hold out...and it was the days where I just felt like I could not function that I would take the neurontin.  And like I said, it only took a couple of days before I would need more. 

 

Yes....the days felt very long.  I had a couple of things that were going on, though, that helped somewhat to take my mind off of "it".  Two young women had come to our church, that were really in need of transportation and other help, and somehow that fell right into my lap!  I know that it was a provision from God for not only the girls, but also for me.  SO...that might be another thing to think about.  Is there somewhere that you could volunteer some time, with the gifts that you have, to help someone else in need (tutoring, maybe)?

 

I am glad that you can see that the neurontin dulled your desires to get out.  If you can just push past that for a few days, until it sort of becomes "habit" to get out.  You won't always feel like it, but doing it as much as possible can only help on so many fronts.  I am thinking about Real Deal (Pam) who found exercise VERY beneficial.

 

These days are not meaningless or purposeless, Pan.  I think you will eventually see that what you are enduring is working for good.

 

Much love,

Leena :smitten:

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Hi Pan,

 

Please do not feel guilty or beat yourself up about taking the neurontin.  When you are feeling so bad, and you think there is something that will help, it is the natural thing to do to try it.  During my early days off of klonopin, I would try and try to hold out...and it was the days where I just felt like I could not function that I would take the neurontin.  And like I said, it only took a couple of days before I would need more. 

 

Yes....the days felt very long.  I had a couple of things that were going on, though, that helped somewhat to take my mind off of "it".  Two young women had come to our church, that were really in need of transportation and other help, and somehow that fell right into my lap!  I know that it was a provision from God for not only the girls, but also for me.  SO...that might be another thing to think about.  Is there somewhere that you could volunteer some time, with the gifts that you have, to help someone else in need (tutoring, maybe)?

 

I am glad that you can see that the neurontin dulled your desires to get out.  If you can just push past that for a few days, until it sort of becomes "habit" to get out.  You won't always feel like it, but doing it as much as possible can only help on so many fronts.  I am thinking about Real Deal (Pam) who found exercise VERY beneficial.

 

These days are not meaningless or purposeless, Pan.  I think you will eventually see that what you are enduring is working for good.

 

Much love,

Leena :smitten:

 

Pan,

 

Leena has some very good ideas for you. :thumbsup: Perhaps if you are not ready for school yet and take the 3 month leave you could do some volunteering which would help you get out amongst people to 'practise' being around them while you are adjusting to being benzo free.

 

As far as the neurotin, don't feel guilty, but think about what you can handle. If it were me, I would think of taking the 3 month leave and not take the neurotin if you think that the reason to take it is to hurry up and be okay for school in 2 weeks. Do a risk/benefit analysis. If you go back to teaching and take the neurotin, what if you have problems with tapering the neurotin later? Can you ask your addiction specialist if you can take a smaller dose?

I would try to look at the big picture and do what would you think would be better for you in the long run.

 

You do have a purpose Pan, I think starting a blog sounds like a great idea, I would visit you.  :)

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Leena & Nicolette - wow you lady bugs really understand me and have great input -  i did wake up so unc

omfortable that i would take the neurontin and did do it to hurry myself into getting better so i can make it back to work in about a week.  i do not know how that is going to work out.  esp since school starts at 7 am and i have to get up at 5:30.  this means i need to try to start geting to sleep at 9 or 10 or so.  can that be done during this do u think?

i saw a new cardio doc for the hbp - he gave me another beta blocker- lebantol or something. so today when i woke up i took that instead of the neurontin.  and it is 10 am and i was a wreck for a couple of hours and now not so much.  missed church darn it.

i tried to voounteer at church but it did not work out.

i will try to get back to work i think.  i don't know.  that is my big worry - don't want to lose credibility with the kiddos and have them see me losing it with stress or whatever.  thanks so much for writing to me :smitten:

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Leena & Nicolette - wow you lady bugs really understand me and have great input -  i did wake up so unc

omfortable that i would take the neurontin and did do it to hurry myself into getting better so i can make it back to work in about a week.  i do not know how that is going to work out.  esp since school starts at 7 am and i have to get up at 5:30.  this means i need to try to start geting to sleep at 9 or 10 or so.  can that be done during this do u think?

i saw a new cardio doc for the hbp - he gave me another beta blocker- lebantol or something. so today when i woke up i took that instead of the neurontin.  and it is 10 am and i was a wreck for a couple of hours and now not so much.  missed church darn it.

i tried to voounteer at church but it did not work out.

i will try to get back to work i think.  i don't know.  that is my big worry - don't want to lose credibility with the kiddos and have them see me losing it with stress or whatever.  thanks so much for writing to me :smitten:

 

Hi Pan,

 

Oh, it sounds like you miss the kiddos and are anxious (maybe not right word, ha!) to have contact with them. I don't think you will lose credibility with them. I don't know what guidelines are at schools, you can possibly just say you had a bad reaction to a medication that you are working through if someone asks.

 

I bet you are a great teacher and very compassionate and understanding to your students. That will show through having some stress.

 

I would start changing my sleep hours now...but the students will be tired too that first week because I'll bet most of them keep crazy hours now.

 

Hey, let us know how it goes, Pan.  :)

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Hi Pan...was just able to log on for a minute in our motel room.  Husband waiting to go eat, so I will give my thoughts when I return! 

 

Much love,

Leena :smitten:

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ok leena - you are such a doll;  your husband is a lucky man; wish i had a husband.  not a good time to think on that tho.  i have the blog and i just put a bit more on that about the job thing.  xoxoxo
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Hi Pan....please forgive me for continuing to have to put off my reply!  I want it to be thoughtful and not so hurried, but I keep having to hurry here and can't sit to write.  We are having to pack up to leave our motel and husband is tapping his foot  ;)

 

Will try again when we reach our next destination this afternoon.  Just wanted you to know I DO care....

 

Love,

Leena :smitten:

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Geez Leena - just say you had shingles - that is a tough one;  a friend of mine had that. 

don't know if my message about 2 days off neurontin went out?

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Hi Pan,

 

Well, finally I am here!  And by now you may have already made the decision about how to handle your teaching year...whether to go back when school starts or take that month of leave.  First of all, it sounds to me like you are a woman who has some pretty strong self confidence, just by the fact that you are a high school teacher and you look forward to getting back to your "kids".  I could NEVER feel confident in front of high schoolers...in fact, teaching 2nd graders (when I was so used to teaching K) did me in :-[

 

It sounds like you really want to go back (and not just for monetary reasons).  If it seems to you like you would feel much "safer" waiting that extra month, I would not hesitate to do that...IF you don't think you would be coming in at a disadvantage by following a sub that the kids might have gotten used to.  (I may be thinking too much like a kindergarten teacher here...high school kids are probably much more adaptable than 5 year olds ;)

 

I don't think I have seen the post about going 2 days without neurontin.  I will see if I can find it.  But I really see that you are thinking very clearly.  You sound like you have a good handle on the possibilities and I truly believe that you will do well, once you make your decision.

 

Are you still taking an A/D?  I can't tell from your signature.

 

Yes...having the shingles was a pretty awful experience!  I do not know how that has interacted with my withdrawal experience, except that my left leg (where I had the shingles) has suffered more than my right.  I think the shingles left it more vulnerable.

 

Will look forward to hearing what you decide!

 

Love,

Leena :smitten:

 

 

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