Down to 300mg/day Neurontin

[Maria]

I have to come back and post about this because I never thought I'd be on this little Neurontin. As I've mentioned previously I started taking Neurontin back in '98 and actually before that I was on Elavil from 92-97 due to failed discectomy on L4 and really horrible neuropaties bilaterally lower extremities for 5 years afterwards.

Eventually the need for Elavil seemed to wear off but about a year later was still having some neuropathies in weird places so was put on Neurontin 2400mg/day and worked myself down to a comfortable 1800mg/day until just recently when I started to feel very odd as tho my mind would be scrambled for hours and I couldn't hardly do anything for those periods of time.

I have been told by surgeons in the past that were offering ADR surgery and/or fusion that I would likely be on Gabapentin (Neurontin) forever because of what was going on in my spine.

So imagine how pleased I am to find that my neuropathies are gone it seems or at least so far and/or are not constant/chronic like they once were.

I'm so happy to be able to think again and especially to read again! I feel like my mind is a big playground and I've just been given the key to get in and use it again!

Wow! How absolutely amazing. I'm still thinking this has to be related to the dessication of L5S1 and the autofusion in that area as this was my worst disc level on discograms.

The other day I sat in the hairdressers chair and was actually comfortable the whole time with no figiting and sliding around or impatience to get up and move as my back or bumm was NOT bothering me. That was 2 solid hours and then came home and sat at the computer for a pretty good amount of time.

The following day I had some stiffness in my spine tho nothing bad and no neuropathies in my legs. Used to be even doing part of that amount of sitting would have made my buttocks and legs burn so badly I'd feel like I was being tortured. The back pain would have laid me out for at least a week or longer in past years.

Next to see how continuing at 300mg of Neurontin will do me and if I can afford to be off it period and then also what will happen if I flare myself up riding my bike and how long will it take to get over that? It's experimentation time!

[dshobbies]

Maria,

Experiment away. Personally, I found the brain fog from these drugs too difficult to live with and am choosing a life of pain instead. When it gets too bad, I take Norco or ???? but I must admit there are times I reconsider my decision.

Aside from the very negative impact on my vision, N&L took away my desires and as you said, even my interest in reading. A life without wanting is just as bad as one zoned out on drugs.

Currently my pain is high but today I'll do something I love and hopefully, it will take my mind someplace else. After all, isn't life nothing but a series of trade-offs?

My best to you and good luck, Dale

And by the way - on a personal note, we added a new baby girl to our family this past Monday - joyful times! Makenzie Ann is keeping her mother up at night but that's the way it's supposed to be!!!!!

[steve55]

I love your story as far as the pain and neuropathy going away on its own. This offers me and others hope that such things are not always permanent. Interesting about neurontin. We all know its primarily a anti convulsant drug. Ive been on it well before my back problems started as I take it for mood stabilization for my bipolar 2 diagnosis. Neurontin is a miracle/wonder drug for me as it was the only drug of many I tried that was 100% effective in treating my severe agitated depressive states. Just this week my physiatrist recommended neurontin for my new T1 or T2 pain(we suspect adjacent level degeneration only 1 year after my 3 level fusion (sigh), had CT scan w/ contrast yesterday to see). ANyways, so, I will try to up the neurontin for this additional purpose. Ive had no side effects ever from neurontin (max 1200 mgs)and it makes me feel really relaxed and calm. I love it. So, its good for me in that I can take it for both my bipolar and now for my neuropathy also. Kind of nice to knock out two birdies with one stone. Question is, will it work for my nerve pain. I feel my pain is more nerve than physical. I even get nauseated from it and I feel weird sensations below my waist. To me that's nerve pain.

[Maria]

Dale,
While my neuropathies were bad enough to warrent the use of a medication that helped as well as Neurontin did I had to choose function over some brain fog and esp. in the last 6 years that I've lived alone. Congratulations on the new addition to the family with Makenzie Ann! What a nice name! Are you a bit flared up picking her up? I bet you cannot resist!!


Steve,
It's good to hear that the Neurontin works for you for one condition and hopefully as you said it will knock out two birds w/one stone and that'd be GREAT! I do hope you get the relief I did w/Neurontin as it made an incredible difference for me re neuropathies.

I don't know how long this will last and if it will so I'm just enjoying it while I can.

The posterior tibial tendonitis I have in my feet is really a drag as otherwise I'd be out and about all over the place. As it is I was able to clean with mopping, vacumning, going out during day and evening yesterday and not notice any neuropathies however my feet did kick in at the end of the night with pain! Bubble buster!

Oh well.. just glad for some progress in the spinal arena at least

[Bluecanoe]

I am also on a fairly high dose of Neurontin, I have been unable to walk or drive much because of pain from posterior tibialis/Achilles tendon pain. What have you tried for this condition? I've been gong to PT, exercises seem to make the pain worse. I've gotten new orthotics, but nothing has really helped. I use ice, night splints, ankle wraps, but I don't seem to be seeing any improvement. How long have you had this problem, and does anything help to improve it? Thanks in advance, I'm new here.

[Maria]

BlueCanoe,
I've now had this condition 2 years and the flare ups aren't quite as frequent but they stop me dead from activity when happening. I don't do anything but rest really because that's what helps the most. I don't want to increase the tearing in the tendon necessitating surgery as I think then my back and whole body would be in revolt so just try to avoid walking at all when the tendonitis kicks in. It's not easy!

I use an insert in my shoes as well (Sole) that I get at Runner's High (running shoe store) even tho I don't run tho I walk a lot. Orthotics in the past have aggravated sciatica for me so I don't use them even tho one Podiatrist told me that wasn't possible and I was "faking it" if I'd continue to say that happens. Of course I dropped him right away!

Sometimes I wrap my feet/ankles/lower legs with ace bandage just while inside at home because it makes me feel better (more supported in the anke area) tho doubt it's helping at all..

Elevate legs/feet at night to sleep when hurting the most.

Good luck and don't expect this condition to go away easily tho try to take care of yourself and minimize damage to the involved tendon.

[Bluecanoe]

Thank you for the reply; I am not able to walk much at all, except around the house. Driving to appointments is hard because we live in a rural area, and it is a 45 minute drive just to get to physical therapy. I use an ankle wrap, but walking anywhere around where we live is on uneven surfaces; trails or fields or uneven gravel, which is hard on the ankle. I used to walk a mile or two daily with my dog, and now it is a struggle to even get anywhere. Did you do PT? Did ultrasound help? I wear night splints when I am in bed, until the pain makes me rip them off. I have been struggling with foot pain for years, but I never had ankle problems like this. Walking was about the only exercise I could do, and now I am housebound. I have to get to the chiropractor twice a week to manage my neck pain/headaches, upper and lower back pain, so I have to be able to drive.

[Maria]

Hi BlueCanoe,
Yes w/i the first year I had some treatment w/UTZ and PT however the PT tho because I had Plantar Fasciitis (sp) as well as PTT but it was too much of a hassle as the PT and UTZ aggravated the tendonitis it seemed so staying off my feet during acute episodes worked out the best.

I too have a dog tho live in the city so sometimes have to have friends walk her for me or she has to suffer very short walks (during acute episode).

Uneven ground is pretty much unmanagable for me when the episode is acute as I feel like I have no stability which I think is pretty much true when that tendon is inflammed.

I walked on the beach barefoot for about an hour several days ago and was pleased not to have a flareup as I wasn't on packed sand all the time tho felt it better to walk w/o shoes at this point than with.

During the first year I experienced this problem I was off my feet for periods of nearly 2 and 3 months at a time except inside to get to the bathroom, kitchen etc and even then using a cane at night and early a.m.

Isn't just amazing what stuff can go on with our bodies?? I wonder how the cave man lived such an undomesticated life?! Didn't live to be 50 plus that's for sure!