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Neurontin, Meds and Just Really Needing to Vent!

legalonellegalone Posts: 39
edited 06/11/2012 - 8:26 AM in Lower Back Pain
Please forgive this long post and move on if you wish. I saw an OS before Christmas and have been so depressed, I just need to write someone.

I have been taking Neurontin for almost 8 years due to a small stroke I had and it helps the left side of my face not feel cold and hard, plus the feeling of a few other sensations, like just having gone to the dentist and received an injection! Neurontin really helps me there.

After taking it for about 4 years, I told my pain management doctor I just wanted to try something else, so after titrating down, we tried Lyrica, which I couldn't take at all, Cymbalta, Tegrenol, and a few other medications, but nothing worked for me and that is when I realized how much the Neurontin really did help me.

I had back pain for about 5 years prior to my stroke, however, my pain has really turned for the worse the last 4 years, and I've had everything from PT to Sacroiliac Injections, Selective Nerve Root Injections, Epidurals, to Facet Injections. I have annular tears, Scoliosis, and had a discogram done which indicated the painful bad discs; MRI's, a Laser CT Scan,and X-Rays showing herniated discs at L3-4, and L4-5. And, some tests have shown nothing.



I was going to a pain management clinic until it closed down (at St. Louis University) and my doctor, who was an anestheologist and Professor of Pain there relocated and is no longer prescribing medications. My Neurologist of 15 years has retired, but is still seeing me at his home office because of the pain I am in and doctors not wanting to touch me due to the stroke I had. He really wants to help me, he is a wonderful doctor and well known in the area.

After I have a bone density test done, he plans to write a letter and send me back to the OS that he referred me the first time and explain to him I am not high risk because of the stroke. (Not the OS I just saw recently). He knows the first OS very well, and that he didn't want to do the surgery because of the stroke. He sees this as no problem and thinks surgery would help get my life back in order and this is why he wants me to see him again.

I do not go anywhere because of the pain, I can't walk very far and use ice and a heating pad to get thru the day. I'm not sure surgery will help, however, I've seen 2 NS, the OS my neurologist first referred me to and more recently, this OS who thinks I'm a junnkie, but each after finding out about the stroke, change their minds about any type of surgery.

Right before Christmas, this Orthopedic Surgeon who told me I was on too many drugs, treated me like a real street druggie, I've never been treated like this before and left in tears with my husband trying to explain to him the medications were for my stroke and that I only take one narcotic for my back and then only take it when I can't take anymore. He didn't care to listen.

I take the generic for Dilaudid? (Hydromorphone) and only a few of them a day when I can't take anymore, I've never really taken a lot of medications, and this is the only narcotic ever and I put off taking it, even though my pain management doctor at the clinic wanted to prescribe it for me long before I gave in and took anything, and it was exactly just because of doctors who think like this and the stigma they put these medications, plus my own fear of taking this type of medication.

My neurologist told me this doctor was a SOB and not to worry, no way was I a junkie on the meds I take and the reason I take them is because I am in pain and need surgery, not because I want to take drugs!

I still live in tremendous pain each day and anything I do, or try to do, only makes my pain worse. So, here are the meds I take: Neurontin, Zanaflex (muscle relaxer) for the spasticity in my arm, a very mild fluid pill because the Neurontin causes me to retain water, a 0.5 Xanax that I take throughout the day, half of one in morning, the other half in the afternoon and a half (or whole one) at night, to help me sleep, which is a joke. I'm still up every 2 hours, and I take Topamax to help with the nerve pain, plus for headaches, having titrating down on the dosage quite sometime ago because of a lot of "brain fog". And, I also take a BP pill for preventative measures, I never had high BP pre-stroke - they never came up with a reason for my stroke, except "silent hypertension", but strokes do run in my family, however, it was quite a surprise to me, the attorneys I worked for, my family and friends when at 53 years of age, I had this stroke and walked around for 4 days thinking I had the flu! And, I was relatively healthy.

Anyway, my point in rambling some of this off to you (sorry) other than venting about that OS (lol), is that I read a post about some of you taking Neurontin and asking if it had caused weight gain. It has put weight on me, but when I was taking the Topamax the first time (a higher dosage), it really kept the weight off, but I was so frustrated because when I talked to people, I would just go blank when trying to think of a word - it was like always having the word on the tip of my tongue, but it wouldn't come to me. And, I didn't do this after the stroke either. Since titrating down on the Topamax dosage, that has helped me tremendously, so at least we know it was the medication. Perhaps the combination of the Neurontin and the Topamax, but I'm much better now.

But, what bothers me more than anything is that OS I saw and how he treated me, he even wrote on his report that I was on Narcotics and Opiods....Neurontin is not a narcotic, it is used for nerve pain......and I only take one medication that would be clssified as a narcotic, the hydromorphone". I know people who take much more pain meds than I do, in fact, I'm in so much pain, I actually wish I had something else to help with my back pain, but after seeing this doctor, I feel like a "junkie". He said my Scolosis had worsened in 2 years, but to come back in 2 years and we would see how it was - yeah right, Doc, I'll be 2 years older and in more pain from the herniated discs.
If he had stayed longer in the room, I would have told him I wasn't there for drug rehab (lol).

Since I don't see the pain management doctor anymore, I am in the process of looking for another PM doctor in the St. Louis area, but just haven't found one yet. After having the same PM doctor for 8 years, I don't know where to start.

I know this may not make much sense, but I sure feel better and thanks so much for listening anyway.....

Happy New Year Everyone!
Sandy
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Comments

  • Welcome to Spine Health. You can vent all you want here and you have more than enough reasons to. I'm sorry you had a stroke, and now you have to deal with back pain and a rude doctor. You're not the only one being mistreated like that, and it really burns me to hear it happen. It goes on too much. You have 2 herniated discs and need surgery - You are not a druggie. If Neurontin helps you out, I hope it will be prescribed again. Many of us have to take strong medications just to get by, but unfortunately, stigma can be a part of the package. Don't let anyone treat you badly or make you feel guilty for needing them. It's the same as a diabetic needs insulin, and no one can say they're addicted. Studies show that patients that take narcotics on a regular basis for legitimate chronic pain have a very slim chance of abusing their medications. We are simply trying to get our pain under control.
    Sandy, I hope you find a good pain management clinic to take care of you, because your needs are complex. However, there must be something that can be done for you. If your doctor decides on surgery, please research it carefully and consider a second opinion because it's major surgery and there is no 100% guarantee that it will take all the pain away. I speak of my experience, but there are people here who have had good outcomes from their surgery. Whatever you do, I wish you the best. Take care
  • :) you have come to the best place ever for support and understanding. =D> it is hard to realize that some uninformed people call us junkies and other derogatory terms. but you and i know better. and so does a good pain support team. once you have a new pm you will feel more balanced and back in step with your life. >:D< this is indeed an inconvenience of the worst kind. being in pain and expanding the energy needed to find a good fit is very difficult. i wish you lots of luck and know the right pm will come your way. :) we are always here to listen and if you want to go off anytime, drop by the forum. your blood pressure will go down, your heart rate will slow and you will have a smile on your face before you log out. :) that is my hope for you!! Jenny =D>
  • Sorry that you are having a tough time of it. The doc should never had made you feel like a junkie ... That's just unprofessional beyond belief.

    I take Neurontin and have for somewhere around 10 years. I take Tegretol as well for the concomitant way it works with the Neurontin. I also take Zanaflex and Celebrex. Now that I don't use opioids of any sort, the docs just breeze through the meds list and treat me like someone who might be taking simple blood pressure or high cholesterol meds.

    I don't know why this guy would have treated you like he did just because of the Dilaudid. Well it's a good thing that you still have the neurologist taking care of you.

    I hope you are able to get someone to help you now instead of a year or two later.

    Take care and vent when you need to.

    "C"
  • I tried Neurontin but I couldn't get up to a dose that would have any impact on my pain withotu suffering from side effects I couldn't live with. Still, I agree with the other posters; Neurontin is not an opiate, and if you have a doc who wants to treat you like a junkie, switch now. I am lucky in that I go to a decent pain management clinic, but out in the rest of the medical community, I get alot of judgemental looks when I list my meds.
  • I know it's hard but don't let one Dr. interrupt how you feel about yourself and how we also perceive you as a person in pain on medication to live. Because without it it's unbearable. I had to go to my Primary Dr. and inform her my med was only working for only 4 hours and the pain was still too high. And she increased my medication. Even then it was uncomfortable to tell her but the pain was awful. So right now the first important thing is that you're comfortable and not in pain. I'm hoping you'll find another Dr. that cares and doesn't judge you. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • for your very kind responses. When you are in pain and treated so badly, it hurts even more. I definitely will not be going back to see him, he was referred to me and I just wanted to know what he thought about my lower back. I knew he didn't prescribe medications, and didn't mention meds at all to him, he just went off on me when he saw those I had listed on the form.

    Doesn't he see others who take pain meds for their back, I just didn't understand him at all. I only take one medication for my back, Hydromorphone, which is not a long lasting medication, it only helps for a short time, but it does help to ease the pain a little - I'll take it!

    I have a rare pain syndrome down my left arm as a result of the stroke I had in my thalamus for which there is no cure at this time. My left arm, hand and fingers throb, and are in constant pain, I can't stand cold on that arm and certain materials make wearing clothes a real pain because of the texture of the materials. Only a combination of meds like Neurontin with another nerve type pain medication is prescribed for this type of pain, along with those I listed in my earlier post, but nothing takes this horrific pain away, it's always there, just never goes away.

    And, Narcotics do not help this type of pain anyway, he had no idea what "thalamic pain syndrome" was and like I said, we tried to explain about the medications for it, but he wouldn't listen, he just didn't care.

    So, when this pain in my lower back and left hip (that runs down the back of my leg into my foot) worsened, when it hurt to walk even a short distance, and I started limping when I did, well, this.......along with the "thalamic pain syndrome" seems to be like living with a "double whammy of pain and I'm really under medicated for the pain I am in.

    The last few weeks with the stress of that doctor visit and the holidays, well, the pain has just gotten me down. But, yes, I do hope to find a good PM doctor soon, and perhaps I can try some other medications or add something that might give me more relief.

    I do understand that surgery may not be the answer, and I really don't want surgery. I have done a lot of research and read a lot of stories here, as well as other places also, and surgery would absolutely be a last resort thing for me since I am very afraid to go thru something as drastic as that anyway. So, I definitely will not jump into anything. It's just that I'm in such pain, you know, I have these days when I think "I'll do anything!"

    Also, I do realize there are those of you, so many of you in much worse condition than I am, so please know my thoughts and prayers are with all of you. I've never had anything hurt me or get me down like this back pain, it has completely brought our social life to a halt, and I don't even feel like having family over. I use to take my grandkids everyplace, now it's all I can do to get out of bed to see them, read them stories, play games and enjoy my life like I once did.

    Thanks, again, for writing, you made me feel so much better.

    Take care!
    Sandy
  • The most effective thing I've tried is ICE PACKS I absolutely swear by them they are uncomfortable at first, But when my back is frozen it takes away a lot of my back and leg pain, I don't take any kind of pain meds they make me sick flu/nausea type symptoms, I've tried Neurontin but the most it did for me is feel like I'm going to fall down and very unsteady, Wasn't for me any way, Look into Flexeril or Soma/caprisopridol both have very minor side affects I've found I can stop taking them for weeks without any withdrawals type symptoms, But I always fall back to the ICE PACK
    Hope this helps
    Fellow back/leg pain L4-L5/S1 sufferer
  • Hi MercMike, boy are you right! I use ice packs also, guess I didn't mention it here, but I have in other posts. In fact, I buy mine from a pharmacy, however, the ones I use can be ordered online also, they have a gel-like (more like peanut butter) filling in them and are quite sturdy. I don't have the name in front of me, but I really like this brand. I keep them in the freezer. I have 3 of them and just alternate them as needed, they are fantastic!

    I can't live without them, if I have to go to the store, or be out for awhile, the first thing I do is grab one when I come thru the door and sit down with one and the coldness works better than anything. They really are the best! You are so right, I have one on my back right now and when it is so cold right out of the freezer, it is the only thing that really works to keep us from feeling the pain.

    Thank you for letting me know about the medications, I will definitely look into the Flexeril or Soma/caprisopridol, and talk to my doctor about them. I realize we are all different, and medications work differently for everyone, but it would be so nice to take a medication that worked really well with minor side effects in that it might be possible to be able to go without taking it all the time if needed and not go thru withdrawals. Hopefully they would work as well for me.

    I'm sorry the Neurontin doesn't work for you, as I said, medications work differently on each of us, and it did take awhile to get into my system, but I have taken it for years now and the dosage slowly raised throughout the years to one that works for me.

    Thank you so much for your suggestions, I do appreciate all the advice and I wish you the best.

    Sandy
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