Pain management GTR of T11-T12 - Lyrica dosage

[cyclingbob]

Hi to All,



This is my first post. I am also a member of the BORG : Brain Trust (BORG) - Bruce Blount Facilitator where I

post frequently.



Details of my tx below:



Bob

Spinal Cord Ependymoma (Intramedullary) T11/T12 with Rosenthal Fibers Grade II.

Operated at Boston MGH 7/30/12 - Laminectomy - Gross Total Resection.

Tracy Batchelor Neuro Oncologist - Executive Director Pappas Center for Neuro-Oncology

John H. Shin Attending/Instructor Neurosurgery

Lumbar MRI 5/6/16 shows stable. Next MRI 5/9/17 Lumbar and Thoracic. I will bring a lunch

Balance issues. Bilateral foot neuropathy/pain at 6-8 of 10 since Feb, 2016. Prior pain 5+ of 10.

Pain at the gluteus medius/piriformis. Bilateral piriformis syndrome. Lyrica started 1/16/17

Active with Tai Chi, stretching, pistol and rifle shooting, walking now limited. Retired October, 2016.

Boston MGH: I am very thankful for everyone’s expertise, anticipation of problems, and cheerfulness





I am coming up on 5 year anniversary with no recurrence - great news.



My question - Pain management. Not so good.



I have tried everything: Acupuncture, reflexology, cannabis, PT etc. You name it and I have

probably tried it. I did try gabapentin in year 1 but no benefit.



The last hurrah has been big pharma - Lyrica started 1/16/17. Now at 100mg at night and 75 day. Still working on dosage.

Pain still runs 7+ and worse at night. Titration has been modest so little or no side effects. No weight gain.

I hate the idea of big pharma but no other option.



Pain docs at Mercy Hospital Pain Ctr in Portland Me don't have anything more in the pain arsenal.



Any one have experience with Lyrica and dosage?

Has anyone had any success reducing neuropathic pain?



My expectations - I will just have to gut it out.



Cheers,



Thanks.

[lk]

I have been taking lyrica for a several years, 200mg 2 x daily. I also take tramadol 100 mg 3
x daily. This has made the pain somewhat bearable for me.

[cyclingbob]

lk

Thanks.

I was not finding any benefit at 100 mg 2x/day and noticed weight gain about 5-7 pounds.

I have dropped back to 100mg 5/4/17 at night and will discuss with pain Doc
6/1/17. Pain still runs 7+ with or without lyrica.

Will report back if any better options after meeeting with Doc on 6/1/17.

[billanschell]

I'm taking 450 mg per day/night. I find it helps somewhat and is worth it to me even though it's definitely made me gain weight. I ramped off of it for an experimental procedure (which was worthless) and lost eight pounds in three days. One thing I learned: Ramping off of high doses of Lyrica should be done VERY gradually.

[kathyb]

More wordy than thought, but I kept getting more frustrated!!!!! I have issues from shoulders down but the worst is forearm and hand pain. I enjoy working with my hands so it is very difficult to manage, plus type all day at work, and I like my job to so am fighting staying off disability. Call me crazy?

Long acting tramadol and oxy worked best for me but my nurse practitioner freaked even though he rx all my meds, long story. They all ways want to increase Lyrica. 7 years on 150 mg tid, Increased to qid and I felt foggy headed and numb. I find Lyrica does help with twitchy, jumpy, tingly, restless legs type feelings. I have gained about 25-30# past 7 yrs which I would be okay with if it worked more on pain itself. I have titrated down to 150 bid and feel it is a fair balance, so far, no weight loss. I am curious to try plain gabapenten as it is so much less expensive but am afraid to change things around. I can't get what works so have pieced together some things, which all help some. Cymbalta 60mg/d works well for deep nerve pain between ulnar/radial bones, clonidine and or ativian for really bad days and super restless legs, diclofenac topical cream works well until I need to wash my hands, which I do all day and it is difficult to keep those big tubes in a pocket. I have done yoga, which helps if I can get out of bed, acupuncture, etc.......but nothing works like the two long acting. Very frustrated and discouraged. I want to yell at these "pain clinics". I had one pain management RNP say that when he was in pain he only took OTC's. I just smiled and said thank you. What I wanted to say was, good for you! I'm so glad OTC's work for you. I wish they worked for me so I wouldn't have to come see you. Maybe if you lost 100# you may not have any pain? You know, I bet you dont even know what pain is you insensitive......and so forth. I have you find your therapy and you get relief,
Kathy
Ependymoma C2/3-C6/7
February 2010

[Anniebogangles]

I like gabepentin. It’s basically the same as lyrica with a few tweaks. I’ve been doing counterstrain and that has really helped with the pain. C2 1994.

[cyclingbob]

Annie...
Thanks.

I stopped all meds June 1, 2017. Continuing the search for the Holy Grail of pain relief is past. No doc appointments since June, 2017 and no wasted time chasing the Holy Grail of pain relief.

I am convinced after trying a variety of treatments/meds I am not missing out on anything. Mercy pain center in Portland worked at helping me and I thank them for the effort. It is what it is. No whining.

Yes some days are better than others but keeping physically active works for me. Stretching, tai chi, partnering with my wife to keep an attractive yard, walking, shooting sports, reloading etc. I have stopped cycling and skiing. Best not to look back on what I cannot do but what I can do. I can keep my weight under control so a huge positive.

Most important for me is to continue the lifelong learning challenge.

Cheers

Bob