I have lived with pain all of my life. Its only been in the last 4 years that I have finally gotten some answers. i have been diagnosed with POTS, NCS, and a definite connective tissue disorder. I was on tramadol and was told that I needed to be aware that it came with a black box warning because it has been known to cause seizures in some people. I have a sensitivity to strobe lights and my father had seizures so I no longer take that. I now see pain management. I have been prescribed time released morphine and oxycodone for breakthrough pain. however, I still have days where it is unbearable. Does anyone else have this issue?
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I have very similar issues with autonomic issues (not exactly POTS) and connective tissue issues. I also have a syrinx so pain control is a huge issue for me. Tramadol does nothing for me at all. Percocet does work but no one wants to prescribe any longer so I avoid it except for the most severe pain. I started having dystonic seizures and tremors in Nov and no one seems to know the cause or what to do about it. CBD is helpful but doesn’t take the pain as well as Percocet. LDN has been giving a little relief and I believe that’s very safe and something worth trying.
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I as well have severe pain issues. I had my first scoliosis surgery when I was 13, and have had five since. I’m loaded up with hardware and I am fused pretty much from the top of my shoulder blades through to my pelvis. I too have a connective tissue disease, EDS, and I suffered a severe tibial/fibula plateau fracture, which pretty much shattered my knee a few years ago. All that being said, I do see a pain management doctor. I have tried many medications throughout my lifetime, and have never had much relief. I was fascinated to learn that I have a genetic pre disposition to minimal opioid pain relief through both my CYP2D6 genes and the COMT genes. I now use fentanyl patches as well as fentanyl buccal pills. I’m not a doctor, though I was an RN–I’m not giving medication advice–I just want you to be aware that there are medications that do bypass the CYP2D6 enzyme system. If you’re not achieving any pain relief from your current medications, please share your genetic info with your physician, and I’m sure you can find something that will give you acceptable results. Do understand though that acceptable results in my personal opinion constitute about a 50% improvement in pain which grants me freedom from being bedbound. Good luck and please keep us posted.
I just learned I have similar CYP2d6 plus COMP issues. I also have severe headaches, POTS, misc autonomic issues. Pain relief has always been different for me than other people.
However, I was just diagnosed with Meneire’s Disease and possibly Pseudotumor Ceribre. The solution being to try Diamox - a diuretic that helps reduce fluid pressure in the brain. In just a couple days, my pain levels and headache went from a level 9 to a 3, it was a miracle. This is also a potential cause/solution for the autonomic issues by taking pressure off the vagus nerve. This does not solve the pain medicine issue, but could address the cause of pain from a different angle. Hope this helps you.
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I have connective tissue issues, fibromyalgia, CRPS, vestibular issues, migraines
I have Loeys Dietz. I was initially diagnosed with Ehlers Danlos 4, and additional genetic testing by an MD Geneticist revealed that it was Loeys Dietz. I do not respond to opiates for pain control.
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Tramadol was so bad. I passed out om a small dose, and threw up for a couple of days.
Oxy did not work for me in the hospital after a c-section. I pleaded for Tylenol after they gave me oxy instead. I also have connective tissue disease and get migraines with aura.