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Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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08-27-2009, 12:36 AM | #1 | |||
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I have been on a myriad of pain meds after breaking my neck in an accident which amongst other things caused severe TBI. I am in constant pain and need some help from my fellow folks who've suffered the same thing.
I was on Fentanyl for 2 years until it just stopped working. Now, my doc, who's a surgeon & is well respected for dealing with such trauma. My med list includes the following Fentanyl 2 years, Oxycontin (which, in my opinion is worthless), Dialaudid (works great but VERY short acting), and a host of other meds which I can't remember now. The only thing I have not tried is Morphine. I understand the pills are basically worthless & the way to go is the pump. Any feedback on this would be great!!! Can I get some advice on that. I don't want to go into my surgeons office demanding meds. He think I'm just trying to get one over on him and will loose all respect for me. How do you all suggest I deal with it? What is next after Oxycontin & Fentanyl? Thanks for your help Joe |
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08-27-2009, 02:29 AM | #2 | ||
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"Thanks for this!" says: | Hockey (09-09-2009) |
08-28-2009, 11:48 PM | #3 | ||
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Legendary
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You have to be very disciplined with the Oxy. If you do not follow the exact prescribing time line, it can be VERY addicting. Taking Oxy sooner than scheduled or taking a larger dose than prescribed can set you up for miserable withdrawal when you try to go back to the prescribed dose. You can end up with horrible nausea and stomach/other pain. The Oxy withdrawal will make the pain seem like a day at the beach. It is not uncommon for those who get addicted to need serious anesthesia to deal with the withdrawal symptoms. My BIL wrecked the lives of all around him trying to kick Oxy. He substituted booze and ended up losing his drivers license for quite some time.
I have read studies that say that morphine pumps can be very effective. They limit how often you get your doses. The studies show that most pump users use far less that the allowed amount.
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Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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"Thanks for this!" says: | Hockey (09-09-2009) |
09-06-2009, 12:06 AM | #4 | ||
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Joe, I have suffered from RSD for 7+ years. I have had numerous nerve blocks, Taken many medications (Fentanyl, etc.). I have found a combination of medications that works for me. It mainly includes Morphine Extended Release along with Morphine Immediate Release for breakthrough pain. I don't care what the physicians tell you (I'll been told Morphine does not help nerve pain - that is incorrect) - Morphine, combined with some other drugs allows me to live the best quality of life I have had since being diagnosed with RSD. For What it is worth - Here it is: Morphine Extended Release (work with the dosage until you get one that gives you pain relief for about 6 hours) (MS Contin CR) Morphine Immediate Release ( Only for Breakthrough Pain ) An Anti-Seizure Drug - I use Klonopin 1mg BID An Anti-Inflammatory Drug - Lodine An Anti-Spasmotic Drug - Flexeril or Soma (Doctors HATE SOMA & will usually not write for it. I took Lyrica for 1 year. In that year I gained 70 pounds - of which I have not been able to lose 1 pound. Cymbalta - useless. Fentanyl - was good but after 2 years didn't do the job. SO ... What I am say is - TRY the MORPHINE ORALLY! My physician kicked me out last month because I refused to have a Pump Implanted in me to administer the medications. WHY should I have surgery, with all it's downfalls, when I can manage (for the most part) my pain with oral Morphine? THE KEY IS USING THE EXTENDED RELEASE MORPHINE IN CONJUNCTION WITH THE IMMEDIATE RELEASE! Believe me. If you take it regularly (not just when you are in pain), and you have your M.D. tweek the dosages so that the largest dosage comes in the morning Extended Release Morphine, I believe it will help you. Of course, the other drugs are very valuable in helping me control all the other conditions. Hey, what do you have to lose? PAIN, that's what. HOWEVER, I am having so much trouble finding a physician who will write prescriptions for long term Morphine. I am struggling to find one --- and you know what it looks like when you go from doctor to doctor because they want to start at Step A when you are already half-way down the alphabet. I hope this helps. Good Luck! |
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"Thanks for this!" says: | Hockey (09-09-2009) |
09-08-2009, 10:27 PM | #5 | ||
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In Remembrance
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Hello Joe,
I agree with what yiisd has said, although, the choice for me has been Methadone. And, I have a "cocktail" of other meds to augment, like her and most others. Have you ruled out RSD and TOS? I have RSD and TOS for 26 years, then another accident cause a tbi, and discs in neck and low back and post traumatic epilepsy, PCS. But, we're just talking about pain here, right? Methadone is a wonderful medication used properly, plus, it's very inexpensive! As with morphine, you would want to take it on a schedule, not PRN. PRN will get you in trouble with most any med for chronic pain. I think. So, consider this. Also, I've been able to change my dosage from 15mg. / day to 100, (after 2nd accident), now I'm at 50 to 60. Be Well! Pete |
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"Thanks for this!" says: | Hockey (09-09-2009) |
09-16-2009, 11:35 PM | #6 | ||
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Methadone may work; as may oxycodone generic, or a mix of valium and oxycodone to address the pain and the muscle spasms all at once. Go to a new MD because MD's dont change their minds once they say something. Thats my experience. Also you must be SO careful so these meds dont take over your life ie addiction. Good luck . |
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09-19-2009, 03:15 PM | #7 | |||
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I know you are correct about the Oxycontin withdrawal. Frankly, my life is spent in so much pain I just don't give a damn. I will cross that bridge when and if I ever come to it. My doctor, who is also a surgeon, tends to think that I will never be off his medication. When he described what has to happen, here I am a 37-year-old man who spent 15 years bodybuilding ... I thought I was tough? What a joke! Here I was, as he describes it, I am buckeled over in tears. The real reason being that they can't fix nerve cords or bundles that had severed. Yes, my broken neck is healed and is as good as it's going to be. Believe me dude, the man upstairs really was looking out for me because I was 2 mm away from being a paraplegic. But, the pain is an issue I'll deal with for life. It is not something I have to worry about withdrawing from. It's coming up on three years and not much has changed. How about you? Can you tell me a little bit about your TBI? I'd love to hear how you're coping with life, and learning from folks like yourself who are basically in my exact same situation has taught me a lifetime's worth of learning. I hope this site is the same for you. Take care and be well my friend. Joey |
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09-19-2009, 10:44 PM | #8 | ||
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From what I've read, etc. long term use of pain killers still needs serious discipline. Break-through pain is often the downfall of long term drug use. That break-through pain moment causes a desperation and subsequent break from proper dosages.
That was my BIL's downfall. He would over do it at work and get break-through pain. Then he would take extra Oxy. The dosage creep kept pushing him to higher and higher dosages. When he would finish his allocation days before he qualified for a refill, his world would come apart. He started stealing meds from my MIL and getting her refills. He doctor shopped to get a second doctor to write an overlapping prescription. In just three months, he burned through $40,000 in working capital I loaned him for building materials for his construction business. His prescriptions were costing $800 to $1600 per refill. He charged them on his business credit card. He left a wide wake of ripped off family and employees. Between the pain and the Oxy effects on his mind, he was worthless at decision making. I feel for you living with chronic pain. I do not have any chronic pain. I just can't drive or recall simple words, or plan ahead. Here is my best example of one of my problems. When I was driving, I would come to a stop sign. The crossing traffic was uncontrolled. I would look to the left and see where the cars are. I would look to the right and see where the cars are. Problem would arise that I had already forgotten if there were any cars coming from the left. I learned to drive around town by making a right turn, getting in the left lane and make a left turn to cross an multi-lane uncontrolled intersection. I still do a very little driving. I can by-pass busy parts of town by taking the scenic route through the country. A highway would be a direct 10 miles but I drive 15 to 20 miles to avoid the busy intersections. Otherwise, I can get easily overwhelmed. I have driven onto sidewalks three times. Fortunately, they were empty of pedestrians. Now, I stay on the country roads without sidewalks or pedestrians.
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Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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