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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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I apologize beforehand including the whole timeline. But I have seen enough of these threads to see that the rest of the story gets asked almost immediately after posting anyway. Thank you for reading in advance.
In December of 2016 I was diagnosed with right-sided Trigeminal Neuralgia after about 6 weeks of initially developing Bell's Palsy from an ear infection. Less than a week after the Palsy cleared up the V cranial nerve was inflamed by a post-infectious process and I began on the wonderful road of Trigeminal Neuralgia pain. After fighting tooth and nail with Medicaid for almost a year (having them use policy and incompetent doctors to try and prove I was just a drug addict yet basically tried to force opiates down my throat every month) they were able to approve an MRI after a long time of being poisoned by carbamazepine/oxcarbazepine and a few other things that made it worse. Several doctors almost threw out my case because "if carbamazepine/oxcarbazepine doesn't work then you don't have TN..." ![]() Within hours after the surgery I was TN pain free with only a few phantom shocks during healing. But I noticed right away that I had some brutal vertigo and motion sickness even when sitting totally still. They chalked it up to only the anesthesia post-op which I accepted but constant injections of phenergen and Zofran had nearly no effect. Thankfully I tried medical cannabis again after knowing how it helps chemo nausea and it was almost instant relief again. After dealing with it for my main healing period of 6 weeks I returned to the Neurosurgeon and explained that I had been unable to control my coordination (felt drunk unmedicated) and motion sick 24/7 and still had mild vertigo. He explained that they had to shift the Cerebellum to get to the V cranial nerve and that sometimes in very few patients it translates to vertigo/motion-sickness/nausea/uncontrolled balance (of which I lovingly named "Jack Sparrow Syndrome" since that's how I walked everywhere. He wrote me more Zofran meds and told me after 3 months that it should go away completely. It is just a few days from the 4 month mark I am still feeling the motion-sickness/nausea nearly 24/7. Medical Cannabis costs an arm and a leg and I am unemployed for years because of the TN pain with only a small amount of money we get from my wife's SSI. I only use tinctures or extracts, no smoking, occasionally inhale concentrate if I cannot swallow anything. I have been trying nearly every herbal and natural remedy under the sun (some even more expensive than the cannabis products) to NO avail. Only drinking heavily carbonated drinks helps only WHILE I'm drinking/burping. After I'm done, 5 minutes or less, it's right back. Ginger has no effect. I love ginger but it doesn't help. Which leads me to think it is still neurological. If no treatment for nausea helps then it must be my brain telling me I'm nauseous. I still don't feel like I got 100% of my coordination back but enough to function and ride a bike without killing myself. I honestly don' want to have to stay medicated on anything constantly for this but I just want to understand what is happening and how to fix it. I congratulate anyone that read the whole post. I appreciate it wholeheartedly. Michael |
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