Neurontin-- Please read :-(

Discussion in 'Fibromyalgia Main Forum' started by Cyndi40, Jan 14, 2006.

  1. Cyndi40

    Cyndi40 New Member

    **Oh my goodness, I looked back over this post and I need to apologize for writing a novel haha! Please read, though, if you don't mind... I really need some help. Please also look over any spelling or grammatical errors I've made as I am sure there are some here...

    Ok, so yeah I'm sitting here, up at just a bit past 5:30am, wide awake with a headache that I've fought with on and off all day yesterday and through the night and now into this morning. But that's not all, my legs have been aching and cramping again SO bad (like creepy crawly feelings in them ugh!). A few months ago I was so excited that my doctor placed me on a drug that seemed to help within literally like 3 or 4 days, maybe sooner. It helped with the leg pain and weird sensations, but it also has nearly stopped my migraines up until the headache I've had over the past couple of days. It is called Neurontin. The two huge problems I am facing with this is that I have put on a significant amount of weight (but I'm keeping in mind that I, like everyone else, has probably gained a little during the holidays)... the other thing I've noticed is that he (my doc) keeps having to "up" the dose. Ok, so how much do I want to keep going up with this stuff? And keep gaining weight? And not just going up on this drug, but all the others that I'm on? :( I know this is a situation that I really have to ultimately discuss with him, but I was hoping to get input before I visit him again. I was so healthy before this hit me a little over two years ago. I would hit the gym several times a week and on occasion, twice a day (early morning and late evening sometimes). I managed to be super-mom running around doing things with my son and working 8 hours a day, and doing so many other activities, very involved in my church and singing and playing for church and weddings, etc... and now I can barely walk around my neighborhood? I am SO frustrated. I am on so many meds right now that I honestly don't know how ANYTHING ON MY BODY could possibly be hurting, yet it does. I don't even know how I could be walking around to be honest. I wish I could just detox it all out, all the prescription meds...all the things that shouldn't be in my body... and get started on something natural that has helped so many people (like many of the wonderful natural supplements on this site... and no, I don't own the supplements and I'm not trying to endorse anything for my own good, but if you haven't taken a look-see over there where the supplements are, you really should take the time because they have some great products at unreal prices and I believe it goes to a good cause.

    Anyway... I just don't know how to go about getting off these meds without the very serious, damaging effects. I have done some research about rehab clinics, but you know the stigma and disgrace that goes along with that, not to mention the cost! WOAH! (Please know that anyone who is reading this that has gone through the rehab, or is planning to, that I am NOT putting you down and I totally understand how you must feel... I am speaking of those who do not understand what we go through, so please don't think I am trying to put anyone down... that would break my heart to think someone would read these words and misunderstand what I'm writing.. ok so enough rambling about the explanation.. ha, can you tell I'm very fragile and exhausted tonight?) I have two sons and I am divorced. They are grown, 22 and 17, but their father and I have had so many problems over the years that if he or a family member of his got ahold of the fact that I went to a place like that, they'd most likely put me down to my boys. Maybe I am paranoid. Even though my ex and I get along just fine now, I just don't want them to get the wrong idea of what their mother is going through, ya know? I guess I still have some trust issues that go deep. Just another thing to deal with (oh joy!) I do realize these places/clinics are confidential, but if I were to *disappear* for awhile, people would most definitely wonder where in the world I was...

    So on that note, the other thing I thought about doing was trying to taper myself off these meds, on my own... but some of the prescriptions are powdered capsules... I'm also on fentanyl (duragesic) patches that can't be cut in half...I'm on a muscle relaxer 3x a day, phenergan for nausea that is caused mostly by the other meds, paxil twice a day for depression and xanax when needed and at night to help me sleep and for anxiety /panic attacks. So, I know for sure that I can't go off these things cold turkey. I also read where it's very dangerous to do so, even leading to death if not done properly. YIKES! That is scary! I've read about ways that a person can do this in the privacy of their home, but someone needs to be with them to keep a check on your blood pressure, etc. I also have heard of a prescription that a doctor can write to help you do this at home. I am afraid no matter what I do. I wish that I never had started these meds if you want the honest truth. The pain was just so bad that I was truly in very serious need of relief. And on the other hand, I really do need to give credit where credit is due. I, like many of you, have been in serious, debilitating pain and we have had no choice at times but to take these meds. I believe also that God provides doctors and medications to help us, so I am not "downing" the meds or anyone who has to take them. I may be taking them for the rest of my life, who knows? I've been taking percocet (for a long time now) and I asked my doctor to let me try hydrocodone in it's place, knowing it's a less strong med. Well, it's apparently giving me these headaches, which I think are called "rebound" headaches. I also have two types of migraines, so it's possible that these headaches past couple of days have nothing to do cwith the hydrocodones, but I have a sneaking suspicion that it does. *SIGH*

    Ok, I suppose if you have read this far, that I should thank you from the bottom of my heart for doing so. I am so, so frustrated right now. I hope no one thinks I'm a nut case... It just seems like my body is just falling apart. My left hand has carpal tunnel and I've had to stop typing this post several times just to let it get the feeling back so I could type. So now I have to get surgery on the hand or I could have some nerve damage. What else?? I have cried and cried and cried... I've even begged God for help (which I know I don't have to beg Him, just asking should suffice as He has provided for me so much during all this time)...I just have a hard time wondering why those prayers haven't been answered quite yet...but I know that God will heal me, and if not on earth, the ultimate healing will be in heaven one day. I just feel as though my head is going to explode. I have to make some decisions and I realize I need to make them fast, otherwise I don't know how to cope anymore.

    Please, if anyone has read this, any and I mean ANY ideas you can send my way would be so appreciated. I feel like I'm at the end of my rope and beginning to wonder why I am even alive at the moment. No worries, I won't hurt myself... I hurt so much that I can't add to that!! I also couldn't do so because of my religious beliefs. I just need some serious help, some relief, some comfort, some joy, some peace... the things that this awful illness has stolen from me. God bless you all is my prayer. I hate for anyone to have to suffer from this. Please, if you don't mind, say a prayer for me when you pray.


    **Note: Please know that I am not trying to get anyone to conform to what I'm writing about... ie: trying to stop your meds, etc... I just wish to do so because I still am finding very little relief with these very strong meds and would like to detox my body and start over, with natural supplements this time and no prescription meds. You see, if those would help me (and they do provide a bit of relief for a short time, like applying a bandaid to cover the symptoms up here and there, but not really curing or healing the problem, if that makes sense!)... if those would help me, I would want to continue taking them, but it's not working unfortunately :(
    [This Message was Edited on 01/15/2006]
  2. jakeg

    jakeg New Member

    I know with neurontin you need to back down slowly pretty much as you did when icreasing the dosage. I was taken it and it was working great, it cut my pain level from a constant 10 to a 3,4 but unfortunatly I had stop taken it cold turkey because I developed a horrible skin rash after about 4 months. The sudden stopage was horrible. So right now I'm back to where I started constant 10 on the pain scale with very few breaks in between. I do take vicodin almost every day but it is starting to be less effective. Some times I just sleep all day to get away from the pain and the meds, but I can't do that all the time though, so I really don't have much of a choice. I know about pain managment I try to cope with the pain as best I can, but sometimes it just really gets to me and them the pain meds start disappearing from the bottle. I guess at my next visit to the rhuemy I'm going to mention this as he said previuosly you should be taking something stronger as because when you're in constant pain things usually just get worse then what they already are. He has wanted to prescribe something stronger now for the last 2 months as he sees the reflection of pain in my face on every visit. I don't take the pain meds when I know I have to drive some where, but the new one he was thinking of may stop me from being able to drive anymore. I don't know if I could handle that, its nice to get out every now and then since I've been pretty much house bound since my dx.

    Jake
  3. guardianangel54166

    guardianangel54166 New Member

    I was just reading through the past postings on Neurontin and came across your article. I had a Doctor ask me this question once when I didn't want to start a medication he felt I would be on for life. "I you were diabetic would you deny yourself insulin just because you have to take it daily?"
    Work on it one script at a time. I myself have been divorced and know your concerns. However, as the years have gone on and other family members have been diagnosed, I am viewed differantly than before. The best (and saddest ) day of my life was when my 25 year old daughter said "mom I take back everything I ever said about you when we were kids". She now suffers from fibro also. It has brought new understanding to the family, but as her mother I wish I could spare her the pain. My mother has since been diagnosed also. It turned out that my mother started seeing the same doctor as my daughter when they retired and moved. It didn't take long for the doctor to put it together (she already knew about me through my daughter). Arthritis does not explain away the diverse symptoms that fibro brings. Mom had been treated badly by some doctors and made to feel like such a whiner that she was afraid to speak out about her pain. That should never happen to anyone!
    So now I'm rambling.
    Take it slow, don't deny yourself, and don't give up hope!
  4. sharon5650

    sharon5650 New Member

    Hi there, I put on loads of weight with Neurontin, and since I went off of it, lost all the weight. I think I lost about 30lbs not long after, now I am on topomax, which helps to loose weight. I will never take Neurontin again, I swell up especially my hands in the morning, gaining weight really depressing me too.....forget that!!!lol...sharon5650
  5. trixxi

    trixxi New Member

    I'M LIVING A NIGHTMARE. I,TOO, FEEL SO VERY ALONE. AND IT WAS 10 MINUTES AGO THAT I HAD NO HOPE. I CAN SEE MY FUTURE. I THINK AFTER I E-MAILED MY CHRISTIAN ATTORNEY,"PRAY FOR US" I SWEAR A LITTLE PEACE AND HOPE JUST LIGHTLY FELL UPON ME.

    WE, ALL THAT ARE READING THESE POSTS, KNOW EXACTLY WHAT YOU ARE TALKING ABOUT. WE ALL FEEL LIKE ADDICTS BUT TAKE THEM AWAY AND YOU WOULDN'T BE ABLE TO FUNCTION AT ALL. STOP BEATING YOURSELF UP! [ BECAUSE I'VE BEEN DOING IT TO MYSELF ALL DAY] I NEVER DREAMED I'D BE MAKING THIS SUGAR-EE
    KIND OF STATEMENT.

    I HAD A TERRIBLE EXPERIENCE WITH DRUG INTERACTION AND NEURONTIN AND I'M NOT SURE WHAT BUT I QUIT TAKING THE NEURONTIN. ALTHOUGH, 1-2 DAYS AFTER I STARTED IT, I,TOO, FELT A SURGE OF 'FEELS SO GOOD TO FEEL SO GOOD' BUT AFTER THE EXPERIENCE OF BEING ASLEEP AND AWAKE AT THE SAME TIME....A CANTATONIC IN MOTION....IT SCARED THE POOP OUT OF ME.

    I HAVE 2 BOYS,27 AND 37 AND A DAUGHTER,30 W/LUPUS,LIVING W/ME. MY BOYS BELIEVE IT'S A 'ALL IN MY HEAD' THING. I'VE OUT OF SPACE. GOD BLESS.
  6. trixxi

    trixxi New Member

    CONTINUED.......MY 2 ADULT SONS,ALTHOUGH, THEY LIVED WITH MY ILLNESS,STILL THINK IT'S A HEAD THING. THE YOUNGEST,27, HAS BEEN ABLE TO LISTEN AND GIVE A HEART-FELT WORD OF ENCOURAGEMENT. THE OLDEST, 37, IS DEALING WITH HIS OWN PERSONAL DEMONS....AGE 40 IS 6 MONTHS AWAY AND HE IS GOING INTO 'PANIC MODE'AS OF HIS LAST BIRTHDAY IN AUGUST.

    I HAVE ABSOLUTELY NO FAMILY SUPPORT. PERIOD. AND MY BROTHER IS A PHARMACIST. MY SISTER SAID TO SAY 'SAY IT ISN'T SO' REPEAT AFTER ME 'I AM NOT SICK' 'I AM NOT SICK' WHEN THAT HAPPENED I BLOCKED MY SISTER FROM E-MAIL CONNECTION...AND IT FELT SO GOOD TO HAVE SOME 'CONTROL' OVER SOMETHING IN MY LIFE. MY BROTHER IS WORSE. SO, I DON'T EVEN GO THERE. WE LIVE ABOUT 9-10 HOURS FROM BRO. AND 14 HRS. FROM MY SISTER. THEY ARE ALL DOWN HERE IN SOUTH TEXAS AS OF MONDAY....I DECIDED SINCE THEY STRESS ME OUT SO MUCH, WHY FEEL GUILTY FOR BEING ILL? IGNORE THEIR PHONE CALLS AND E-MAIL. IT DOESN'T HURT THEM ONE I-O-TA. I DID FINALLY ANSWER THIS EVENING AND TOLD MY SIS THAT I DON'T FEEL LIKE BEING SOCIAL [BECAUSE THEY KNOW I'VE BEEN VERY ILL SINCE THANKSGIVING] THAT I WILL CALL THEM WHEN I AM FEELING BETTER AND TO QUIT CALLING. WHEN WE DO VISIT, I AM NOT ALLOWED TO SAY ANYTHING ABOUT FEELING BAD. THEY ARE VERY AGGRESSIVE AND FLAT OUT UNLOVING AND RUDE. MY FATHER HAS BEEN ILL AND THEY ARE HERE TO SEE HIM. I DON'T WANT THEIR INSULTING PRESENCE. IF THERE WERE ANY SUPPORT FROM THEM, IT WOULD DO WONDERS FOR ME. BUT THEY SAY I AM OVERTLY DRAMATIC. AND WOULD YOU BELIEVE I READ THAT WE WITH THE ILLNESS AT TIMES ARE MORE DRAMATIC.