Does anyone suffer from post TBI neurological pain?

Hi everyone! I had a TBI over 2 years ago and am still suffering with terrible pins and needles type pain on the right side of my body. Sometimes the pain is a burning feeling especially on my legs. The Dr.'s said it is from one of two strokes that I had during surgery. I currently am taking 2800 mg of Gabupentin a day and it provides only slight relief. I have tried Carbamazepine and had a highly toxic reaction to it. Does anyone have any suggestions for this type of pain relief? I can't take anything with Coedine in it and OTC pain relievers are pretty useless. Have a great day!

After reading your post, I have to say that I'm in a similar situation. I have some "spots," that radiate pain in a similar manner. No one's pain is exactly the same. I take Mobic, or Meloxicam. It's in the NSAID class but am allergic to both meds you mentioned and pain killers do nothing. The only thing that ever helped was something they have ceased producing, "TALWIN," due to the most enjoyable (in all seriousness) hallucinations one could ever have that made me laugh, loudly! Demerol makes me wimpy and thankful, I'd rather laugh. I take Arthritis Strength Tylenol, 650mg (2 caps BID). With the realization that "Most" medications already contain high amounts of aceteminophen. (sp?) Have you asked for PT, and self-advocating for OT, that can deal with proper stretching and such? I was told by a Zale Lipshy TBI doc that I needed intensive stretching of the muscles. Every time I do it myself, I end up cramped up with serious muscle crampings and tingling. Also, this doc gave me a temp supply of Cyclobenzaprine, which is a muscle relaxer, but it's effects after this first 30-days are becoming non-existent. I understand and if it's neuro-pain, have you thought about therapy for PTSD strictly? Sometime neuro pain is a PTSD reaction not yet known, and talk therapy along with PT can help. That's what they do in rehab.

Thanks for your input Trams. I was just at my Neurologists office yesterday and all he did was amp up the Gabupentin I've been taking for 2 years. I will look into all that you suggested as absolutely none of this was ever discussed with me. I did have a therapist come to my house and help me learn to navigate (I have peripheral vision blindness in both my eyes) and do some exercises but no muscle stretching. I'm sure glad I asked and welcome any input out there. Obviously I need to learn more. Thanks again, One Mom

I know my husband has this problem after his accident and it is hard for him to move at times. We have gone to doctors and they think he just wants pain drugs and not for pain. We are still trying to find out where and how to get help.

Yes, disabilitating pain, mostly head pain ('migraine-like' symptoms) as well as neck and body pain for almost full two years after the worst of my injuries (I have been in three accidents involving multiple TBI unfortunately) and was not getting a workable pain management regime until I was finally referred to a psiatrist. For the past 5 years, it has been a matter of sampling different meds and seeking the best pain 'cocktail' to allow me to function for part of every day. Nothing else helped the migraine-like pain. I am seldom without pain, but found quite surprisingly that while accupuncture did nothing for my head pain, it helped with pain in my injured leg (got up to 36 hours of relief post-treatment) and the "FLOAT tank' just opened near my home allows me to come out feeling less neck and back pain and considerably more energized. Costs about $50 but is worth the temporary relief of pain!

I’m on my smartphone and it’s not that smart. I can’t see what I wrote to you, but my mom MADE me go to a Chiropractor. And I had a ganglion cyst that popped up in my wrist removed and also, I saw a podiatrist who said my ligaments and tendons in my feet “are weak.” So, this one physical therapy place is seeing me for the wrist and core. I am not yet more stable, but the stretching out of my legs, and the chiropractor keeping my back in alignment is providing relief. I cannot do this one balance machine at PT, it’s weird computerized balancing where you mean a bit and keep this ball inside a circle. Well, my brain goes the opposite direction of this empty ball and I get really dizzy and get disoriented, confused, lost, thank goodness for NAV in my truck! I also have a CPAP and nap with it, even. If my mood gets out of whack, I sleep and waer the CPAP. WE can never get enough oxygen. I’ve noticed more spasms and pain with less sleep, as well. I’ve also gotten some massages and that feels very good and helps stretch the muscles.

I do suffer from several different types of "pain in my brain." For the 1st year my entire body hurt so badly: I'd been hit by a truck with such force that it virtually liquefied my muscles and soft tissues in every part of my body. Tendons and ligaments were stretched, twisted and torn. The broken bones hurt, and especially the botched surgery to repair the bones in my leg.

However, the WORST pain by far was the nerve pain that came about 3 years after the accident, as the result of failure by my Neurologist and physicians to do anything about the neck injuries: not even Physical Therapy. So I developed Occipital Neuralgia and other very painful, weird symptoms in my neck and radiating up my spinal column to the axis/atlas joint. That level of pain was INHUMANE. Reluctantly, after countless E.R. visits, I finally had to agree to take Morphine at home. My primary doctor wanted me on it 24/7, and I know she was correct. But Morphine is just too much for me to bear beyond 2-3 days.

I'm so terrified of becoming addicted or allowing anything to further cloud my ability to try to think clearly that I will go to EXTREMES of pain to avoid taking pain medications. Surprisingly, for MOST of my Migraine pain, Excedrin Migraine can take care of it if I take it soon enough. Or Immitrix. When it's really getting bad, I'll take a Norco or two, but only very occasionally. Only when the muscle spasms, trapped nerves, and Occipital Neuralgia, combined with a full-blown Migraine hit at once will I allow myself to take a dose of Morphine, so I've got to be almost out of my mind with pain before I take that (to me) poisonous, toxic medicine. BUT, it takes me several WEEKS to recover from taking any Morphine, so I lose ground no matter what I do.

I've also learned to endure most pain without medication, I did take Chronic Pain Management classes, and I've even been willing to deal with anxiety and sleep deprivation rather than turn to sleeping pills and anxiety meds. After a few years of trial and error, I'll only now take the rare sleeping med or anti-anxiety med, but only as needed. I do take Cymbalta, which has helped me with my pain relief, and Trazedone for sleep at night. I live in California, and the restrictions on ALL pain meds just got much STRICTER on Jan 1. 2015. No prescription containing Hydrocodone (Vicodin) can be issued by telephone, EVER. A visit to the doctor plus a written prescription and a special new form to fill out at the pharmacy are required every time. It's much harder to get the pain medicine, because just making a doctor's appointment can be a big challenge for me, but I'm GLAD they've tightened up restrictions.

I say that primarily because I live (for now) in a very high-crime, bad, and dangerous neighborhood full of drug addicts, gang members and criminals. They'll knock on my door and offer to buy MY pain medication, which to me is offensive and insulting. But their only loyalty is to their addictions, so now I just tell people I don't take any pain medicine. But that's a whole different issue: these are not "functioning" addicts, but the most desperate ones. I just am not so tolerant of the most extreme addicts now after seeing how manipulative they try to be, but I won't go into that.

Pain, more than anything, is the biggest obstacle or challenge between me and returning to work. IF I HAD LISTENED TO WHAT THE DOCTOR'S TOLD ME TO DO, I'D HAVE BEEN DEAD AND AN ADDICT YEARS AGO. SO, I wound up taking MY health out of the hands of the doctors and into my hands completely. I research EVERYTHING in great detail and do second-guess my physician's, especially if it doesn't feel right or make sense to me. Without having done that, I'd still not know about having a genetic Metabolic Disorder that can duplicate the same symptoms of TBI, and leave me in a Hypoglycemic coma. The pituitary gland and my hypothalamus were also injured as the result of the brain injuries, so my Endocrine system and hormones are all out of balance. Insulin, adrenalin and cortisol are hormones that can really mess up one's emotions. I Thank God every day that I'd already had a lot of formal education and knowledge of biology and science before injury. Surviving BAD DOCTORS has been harder for me than surviving the Catastrophic accident.

IF I see someone start to misperceive my issues as mental illness, I literally bolt for the door. Too much ignorance, stereotyping and stigma there for me to allow anymore nonsense by bad medical staff: ER doctors are the WORST, in my humble opinion and experience, and it's BECAUSE my case is especially complex and misleading. But I'm sure the same can be said by many fellow injury patients. Each head injury is very unique. Gosh, sorry this got so long. I guess my typing skills are finally getting better. Best and Bright Wishes to Everyone!

My solution has been NSAIDs, breathing and relaxation practices. There is a physical component and nobody understands it and neither do it. The psychological component is also a mystery but at least I do have some influence on it. That is where I get some relief. When I get upset, it hurts more. When I am relaxed, it doesn’t even hurt.

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