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!