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Almost in hell only 24 hours after my last dose of neurontin

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:32 AM in Pain Management
I was told to stop taking neurontin yesterday after having symptoms severe enough to put me in the hospital for 24 hours. I asked if there was anything else I could do for the pain (hoping they would up my appointment), only to be told not really. They had given me tramadol that I've not taken because I may as well be taking nothing.

Yesterday I was fine, I suppose the drug was still in my system, and I felt ok when I woke up this morning, so I took my walk. Of course, big mistake, my hip was absolutely tearing me a new one halfway around, and I was almost in tears. So I'm home now, icing my back and left hip, and took some tylenol. I just now decided to try a tramadol as well.

My appt. with my PM is not until the 13th, and since I have called them 3 times in the last week (and they make it very clear calls and suprise visits won't be tolerated), on tope of the fact they told me yesterday there was nothing else they could do for the pain prior to the appt., I'm afraid to call them back.

I was hoping, (not beyond all hope I pray) that someone out there has some suggestions on what I can do until the 13th, besides the old stand-bys of ice and heat and rest. (I can't lie on my back, and if my hips hurting, that leaves my right side. It's only a matter of time before my neck pain and headaches return, which will make it hard to lay on my right side as well.

Any suggestiions will be appreciated.



  • Wow, this sounds awful. I know that there are a few other nerve pain meds (Lyrica, Cymbalta) that you could try but you've got a long wait with the pain you're in.

    How about your PCP? Can you call them and explain that you really need something until your PM appointment?


    PS I remember you as Jusserfinn. :-)
  • What a pickle you're in! I feel for you in a big way. I can't believe the ER doc wouldn't give you something. Why don't you want to take the tramadol? What mg do you have? Since the tramadol isn't an antiinflamatory you have take alleve or advil with it -- that's what I do and it helps.

    I would dump your PM doc for another one (if you can)-- how dare they tell you phone calls and surpise visits won't be tolerated -- my god, the people who go there are in pain and they treat you like a leper! What happened to COMPASSION!

    Another thing you might try is a walk-in clinic. I was in severe pain one day and nothing worked -- I went to a Centra Care clinic at the front of my neighborhood and the female doctor I saw was great and gave me a shot of something (sorry can't remember what it was) but it helped. I know it's expensive to keep going to doctors but sometimes it's worth it because you run into a doctor who is compassionate and will try to help you.

    What about muscle relaxers, sedatives (valium), or sleeping pills to help you get some sleep or take the edge of the pain.

    So sorry your 4th of July is sucking -- Most of my holidays since the fall have been spent in bed trying to ease pain so I understand.

    Let me know if you find some relief and I'm sending you healing and comforting thoughts.


  • Giving a call to your family doctor is a great idea, and I'm sure they will do something for you. Those urgent care clinics that Judy mentioned is another great idea too. I hope it doesn't get bad enough to go to the ER, but if the pain worsens over the weekend you should see a doctor. My weekend has gone bust too. Anyway, I hope your pain gets under control and I'm sorry you're going through this. Take care
  • Dear Kat,

    So sorry to hear of all you are going through. Not fun!

    I agree with the rest of the gang... giving your PCP a call is a really good idea. You are an established patient and they will probably point you in the right direction.

    Good luck with finding relief, Kat!

    Best wishes for your pain to get more tolerable.... real soon.

    Tammy >:D<

    P.S. Meydey... I love your new picture!! Brought a HUGE smile to my face! TOOO CUTE!!! I might be homebound too this weekend. The Monsoons are going strong here, so the pressure is falling like a yo-yo. You've got the pain pump to look forward to... real soon. Yay! :D Best wishes to all for a nice 4th!
  • sorry it came to this.
    lyrica is in the same family of drugs and may give you less side effects....oops thats right i forgot your cheap ins. co. doesnt pay for it! =(( =(( =((
  • Geez. There's nothing they can do for you before your appointment. Then, I would guess there's nothing they can do for you AT your appointment. I would start looking for another PM doc. I would try your PCP before the ER. I had a really bad experience going to the ER --being treated like a drug seeker. I've since been told that if you go you should take your meds with you. But why are you not using the Tramadol. That should help, especially, as was suggested, as some Advil. Susan
  • Thanks all. I appreciate the suggestions, but unfortunately:

    1. What would I ask for that I've not already taken that I can take? I'm really not sure there is anything they can give me that will work for the kind of pain I'm in (nerve dmg and mechanical) (even narcotics) but I'm not sure, and when I go to a doctor and say this is how I feel, it seems lately they want ME to decide what I want.
    2. My PM still believes I'm hyperalgesic, so you may be right, I may end up taking the 2 hours bus ride and spend 5 minutes with him telling me (again) "here is what we can do for you" and make me choose. It's really hard for me to choose what I know to be my next step: back on narcotics. Even on the Neurontin I've felt more "here" than I have in the last 10 years being on narcotic pain meds.
    3. My PCP is very difficult to get a hold of. (best doctor in the area and all) The clinic I go to actually lost all of their doctors, exept mine, in the last 2 years, so they mainly use "traveling" doctors, so again, it's tough to get in to see another doctor, exept if its an emergncy.
    4. I can't really go anywhere when I'm in pain, nobody to take me, and no WAY I'm going to take a bus when I feel like this. So, when I feel a bit better, the stupid side of my brain says "you don't need to go to the ER or Urgent care. Plus, I find it hard to "get up and go" there even when I KNOW I need to. The only reson I endd up there last time was my NCS was right next to it, and because she told me I needed to go. If not for that I would have been thinking the same thing I thought when I got the manic reaction to the Effexor: "eh, i'll be ok in a few hours"
    5. Ultram is like taking sugar pills. I could take them, but the most they do is .. oh right, they don't do anything. :(
    6. I have been strictly forbidden to take NSAIDS since I have no bone growth even after 6 months.
    Sorry this is long, but ya, I feel depressed and feeling sorry for myself to have found something that workd so weel that i can't even take how.
  • you mentioned they pulled you off neurontin and in the 24 hours before they pulled you off you were in bad shape. what were those symptoms?????
  • I'm sorry you're in such a tough situation and that you don't have anybody to take you to a doctor. Is there chance that family or friends can help out? As far as the Tramadol, it doesn't help at all? I wish you could call the answering service to get a hold of your doctor so he could call something in for you. It sounds like you'll have to go back to taking narcotics; I know that you don't really want to, but you need to get your pain under control. You can also do some research on narcotic meds so that you can reach an informed decision when your PM doc asks you what you want to do. Just think of it as a temporary measure- surely you don't want to go on with this pain. Please let us know how you feel; take care >:D<

    PS Thanks Tammy, that's my 5 year old "baby" girl who is super spoiled but very loveable. She's so cute she gets away with it all :X
  • Read you last post and I just wanted to say that I totally commiserate with you about getting up and going to a doctor when you're in so much pain. I am very lucky that the walk-in clinic and the hospital (ER) or just blocks away from my house. I actually picked my doctors based on how close they were to my house.

    The farthest that I drove for months was to work and back. The grocery store and Wal mart are very close also. If Keith hadn't been here to feed me during the really painful months, I would have lived on peanut butter and water.

    Do you have someone who can help you out with driving? I know if you're like me you just hate asking anyone for help.

    Hopefully, you can get on Lyrica (although with my prescription plan with United Health care, it's $60 a bottle - Ugh!)

    Take care and I really hope you get some relief somehow real soon.

  • What where your symptoms on the neurontin that made you have to stop taking?
    What was your dose of neurontin?

    hope you have gotten some relief.
  • Thanks guys. RE: symptoms I had is in another thread as well as what they did at the hospital (i think) called "sorry, need advice" if you want the details (don't want to repeat them sorry), but the dr's in the er first said it was neurontin, then a tia, then neurontin, then tia, but during the entire 24 hr stay, they kept giving me the neruonitn. @) :O :? The discharge is on a tia sheet, but it says diagnosis "mental status changes" and hypertension, but then the follow up with another dr at my PCP's office said neurontin, but also gave me Augmentin to take 875mg 3 times per day. My pm took me off the neurontin the day after the hospital.

    Judy: unfortunately my kids never learned to drive (could never afford the insurance) and our car isn't fully insured right now anyway (only for sitting there right now)

    I'm alternating hot and cold, which helps a little bit, but the worst thing is the pinching like feeling I'm getting in my LP right now. I think the biggest prob. is that for over a week, I found out how good next to no pain feels, and now it's hitting me like a mac truck. Maybe I will get in a better frame of mind after being like this a few days? Who knows. If it doesn't let up enough Monday, I'll go to my PCP and tell them I have to see someone.

    Thanks for your well-wishes, it really does help!
  • I have a question, totally unrelated to this thread, but I think people are tired of hearing my bitching and long-winded posts about myself (I know I am!) =)) So I'm just adding on instead of starting a thread, since I kinda doubt anyone can answer, but I'm hoping someone knows something about "lobes" in the body.

    In the hospital they did a ct angio w/wo contrast, and I just was going through all the papers they gave me, and I think the results got stuck in there by mistake, and being the idiot that I am, I was reading it. :P

    The ct was on head and neck, but they mention "patchy ground-glass opacity within the bilateral upper lobes, likely atelectasis. Some curvilinear density withing the right upper lobe, likely representing an area of calcification, presumably granuloma"

    Only thing is, this sounds like lungs, anyone know if that's right? :?

  • It has to be the brain since it has lobes too, and the ct was for the head and neck. But as far as I know, you do get actelectasis and granulomas in the lungs. It's kind of confusing; what did the doctor say to you about all this?
  • Yes, Meydey, it's very confusing, and they didn't say anything, so I know it must not be important, but the fact that it doesn't make sense has me confused. I suppose I could call the radiology department and ask them, but I don't know if they would even talk to me about it, since I don't think it was supposed to be in my papers.

    EDIT: LOL, nope, it was not supposed to be in my papers. =)) But the PA on duty was kind enough to explain that it was my lungs, not my brain, but they follow the veins down that low. The Radiologists just report everything they see :p
  • To address your original question, have you thought about a hot bath with some good old fashioned ebson salt to soak in? When my SI joints flare up it helps me to get inflammation down (I'm allergic to NSAIDs). Just make sure that you put a couple of folded towels down in the bottom of the tub for cushion and can get back out.

    I really feel for you. I have so much trouble with medication side effects and allergies as well. I WISH I could take Neurontin, it helped me so much for the 2 days I was actually able to hold it down before the swelling in my face began. My only nerve med now is Cymbalta and while it helps a little it's nothing compared to neurontin.

    I wish you some relief soon.

  • I'd fire that PM doctor. That is just cruel and ridiculous that they won't reschedule you earlier or give you advice/prescription, do something to help you control your pain until your appointment. They just expect you to suffer for nearly two weeks??? That's just wrong.

    Like you I have weird body chemistry. 10 people will say, this is what worked for me...and I'll be the one saying, but it didn't work for me, and vice versa. It's hard to find the right combination of meds and treatments for us. I do know that one thing that is helping is something called voltaren gel, it's diclofenac. If you haven't tried that yet and your doctor asks for suggestions, you could mention that one. It did seem to work best for me while I was on vicodin though, I was at a 7 on the pain scale and took a vicodin and had my husband put the voltaren on my back and I zipped right down to about a 3 on the pain scale within an hour. I'm not taking vicodin anymore though and with the ms contin it just budges my pain a little, maybe like a half a point on the pain scale. Anyway, your doctor or pharmacist should be able to tell you if it's something you could tolerate or similar to other meds you have taken that have given you bad reactions and veto the idea. I know it's not a narcotic anyway.
  • Finally, a sympathetic ear! I called the appointment line today for my PM asking if there were any cancellations. There weren't, but I found the courage to ask if this is how they treat all their patients when something happens through no fault of their own (being told there was nothing that could be done before my next appointment, and being left with only tylenol/hot/cold to help with the pain). The receptionist listened, and then double booked me for tomorrow at 3:15! Thank God! I would rather sit around the office for a few hours than sit crying at home for a week! <:P

    I actually will have to restrain myself from walking out however, if he asks me "how are you doing on the Effexor and the Neurontin"... 8} maybe I should bring in a tape recorder? (not sure if I mentioned this before, but every single follow up I've had with him, he neglected to recognize that my treatment had changed in between, ON HIS RECOMMENDATIONS!) :O

    Thanks for listening.

    Hope everyone is feeling well as can be today!

  • Kat
    hope things are getting better 4 u.
    I now take 1500mgs a day of neurontin.
    A few months ago Doc had me increase my dose up to 3600 mgs a day. from 2400 to 3600 over a months x.
    At that x I was taking my meds 4x's a day. by the x I got up to 3600mgs i was having symptoms that got worse everyday about 4th day on the 3600 I also had appointment with my surgeon to c how i was fusing.
    he wanted me to go back down on the dose and even mentioned to quit taking. which surprised me because I do know to increase slow and decrease slow.
    my symptoms where awful twitching uncontrollable, left side of face Novocain numb w/twitching.(this lasted for 8 days)I was very nervy like just a little noise out of the blue would scare me. I was a JERKY turkey.and many more effects....
    I started to decrease amt of neurontin @ that x.
    2 days later I had appointment with my rhuemy,(this was doc. that had me increase dose)He seen the issues going on with me, and said he didn't think these symptoms where coming from neurontin.(I know they where). He sent me to neurologist.(I have seen prolly 6diff.N last 3yrs)this was neuro I seen many x's and actually was the 1st one I had seen many yrs ago.long story short>>haha I am now taking 1500mgs 3x's a day.symptoms r better. He says some issues r the myeolopathy and some are M.S.
    I find it strange that the neuro surgeon said he was positive these new issues where from high dose of neurontin, even said he had seen it many times and that neurontin can cause many different side effects.
    Then rhumey that started me on the neurontin and increased it to max dose of 3600 said not from neurontin.
    Neurologist did not say much about neurontin. by x i seen him effects had gotten better and i was down to 1500mgs.He seemed extremely surprised at how weak I was And how much worse hyper reflexes where.& half sided facial numbness. ordered another brain mri.
    I have vibrations still, (very annoying) mostly in upper thigh area as if i have cell phone in front pocket of jeans. twitching is much better & face numbness is gone.
    Having alot of electric shocks and numbness lately n all limbs.
    That's my story and I'm sticking 2 it.
    sending hugs 2 all..Patsy
    p.s.maybe my words might help someone..
  • Wow, what a horrible experience! So, are you off of the Neurontin altogether now? The numbness was FROM the neurontin, or can't be controlled after? (sorry, I'm a little dense lately). Have you found anything else that's helped?

    I really hope you have, and that you will be feeling a lot better soon!


  • I'm taking 1500mgs of the neurontin now. when I go down to 1200mgs the nerve pain gets unbearable with in just 2 days. so for now I will stay with that dose. neurontin is given to M.S. patients too.
    I take several other meds.. some everyday some prn.


  • But wonder if they ramped Kat up so far so fast it overloaded her system?

    I have a lot of reaction to meds, usually I stay on the low side of most meds as side effects kick my butt.

    When I was placed on Neurontin it was ONE 300mg tab at bedtime for 3 days, then a second in the morning for 3 days, then the 3 for 3 days, I was told to hold at ANY dose if the side effects got to me and wait till they calmed down.

    I got a little spacey, but the loss of short term memory was what stopped me from going up in dose. I would have had to quit my job to continue. I am thankfully off my meds, (and possibly my rocker too!)

    Kat, I can't remember seeing how fast they had you go up in dose? I can't help but wonder if a low dose might still help you without all the side effects?

    I hope your doing better today!
  • Patsy: good than you can take some to help a little at least! I hope today finds you feeling a little better!

    Wrambler: How are you doing today? I read your frustrations, and here, and I'm glad to let you know, you are making perfect sense, and they don't sound dumb at all! :p

    Yes, they had be go all the way up to 1200mg within a 3 day period, BUT, there were no huge side effects for another week. It's still possible that there was a mixture of things that happened all at once: I got a major infection, I got a little stronger side effect, maybe a little dehydrated, and maybe even a TIA (according to some doctors, I did anyway). I still don't think I want to risk it, I know I had a harder time telling when my BP was up because I couldn't feel the headaches it caused. Also, I was having a horrible time sleeping (more than usual). Another thing I found is BECAUSE it so totally wiped out a lot of my pain, much of which I didn't realize I had, I am now finding very difficult to ignore that pain, which I obviously was very good at for a very long time: Hyperalgesic my a$$, I'm a ROCK. =)) =))

    Anyway, after 2 major problems in a 2 week period with meds, I'm almost ready to beg to get to know my old friends again: vicodin and oxycodone. At least with them, I know what they do to me (crappy short-term memory loss), and for me to even notice it took a whopping dose on a regular basis.

    Funny, you wonder if you make sense, I look back at my posts and wonder how I have so much in my head begging to come out... LOL My son used to say I ALWAYS typed walls of text: TLDR (meaning too long, didn't read) Sorry that I go on and on and on and............

    Hugs all, hope your days are filled with love, happiness, and are free from pain!


  • drs are supposed to start you gradual on neurontin and if they stop you that too should be gradual. maybe there is a level that would work for you.
    my brother is a dr. and he told me that 20% of all dr. decisions are wrong!
    sometime i think the % is a lot higher!!
    if you don't watch out for yourself you'll get trampled.
  • Wow....that's very fast.
    I read a website that was for neurontin users and they kept talking about a "window" of like 6-8 or 12 weeks that you have to make it through then the side effects become tolerable.

    Not sure I could ever do it, and sure would not advise Kat to with possible TIA etc, wow. I quit just because of short term memory and work. being hospitalized would end that for me too.

    Sometimes I wonder if docs really know WTF they are doing? We get told so many different things and if you ask they say, "well every case is different"...

    Thanks for saying I am making sense, I sometimes doubt myself all the time :D

  • When I first started taking neurontin (if I remember correctly)
    I took @ bedtime only for couple of days, then eventually worked my way up to 4x's a day then back down-up again-then back down. crazy crazy.

    When I was in about 3or4 days of 3600mgs a day.sumX in beginning of May(3month check up with surgeon) (3hr ride in vehicle to top it off)He seen with his eyes I was A mess. He said i could just stop the neurontin all together all at once as long as I was not on it for seizures.this way we would know if the jerking, extreme nervy and half side Novocaine numbness(face) was just me or the nuerontin. but I choose to take away capsules slowly.(I always try 2 read and get as much information about any new med they start me on be4 I take(I also like meds that have been around for awhile, not much trust in these new drugs they have out)my opinion

    Few days later when I saw Neurologist. he ordered a MRI of brain to look 4 signs of a stroke- TIA, white spots or lesions.
    Someone had posted in this thread earlier to do with neurontin and sleepiness.
    4 most..... neurontin will cause u 2 b a sleepyhead.It never cause me to be tired in fact did the opposite.I even have script for provigil(nuvigil)because of the dose of neurontin and issues with M.S.I don't take the uppers but maybe once a month if even that... because I'm already a nervous wreck and its hard to have so much energy and not have strength enough to use it (makes u go crazy inside) Same with ultram...cant take it after 12 noon, because I will be up all night going bonkers.
    Ultram has been around much longer then I have seen people post. I have been on it for close to 25yrs. started it when I was like 20 for bad shoulders.Over the years I have taken it,(off & on)4 me it is a great booster to take with pain meds.(sum days I take it sum days I don't)
    When I first started ultram they didn't know squat about it(some doc's still don't)I call it my 2 for 1-little pain relief-little antidepressant,happy pill.
    Kat.. We are about the same age, cept my kids are 28 and 26 & grandkids are 6, 5, and another on her way.
    I was always very active.I did all the house work all the yard work. and worked 40plus hours a week (nursing)and So much more! now I can do none of it.(I do a tad bit of home duties.)but little by little things have slipped away..Thankyou Jesus 4 a Wonderful Hubby, Great Kids and My grandbabies.

    From my heart.....
    I wish I had the answer so you could get some relief.
    I do know that a good night sleep can make for a MUCH better day. No matter what pills we take.
    Hugs and more hugs.....Patsy

  • Whyme, I had the exact same reaction to Effexor. I described it as feeling really panicky. It was the middle of the night and I felt so bad, I woke my husband up to be with me. Noone has ever suggested I have bipolar disorder.
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