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Medications & Treatments For discussion about medications and treatments for any disease or health condition, including issues of medication toxicity. |
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Hi all. The story of my dad's conditions will be controversial in nature, but please try and keep your judgement to yourself. Understand that my dad is very good-natured, hard-working, highly-educated, well-intentioned man and an overdose can happen to anybody. My former self made a bad decision, and that bad decision led to my dad's bad decision, and all these bad decisions were exacerbated by alcohol...and they led to a Fentanyl overdose that my dad barely survived as is now paying the price for.
So my dad has both Parkinson's AND Lance Adam's Syndrome. The LAS is due to the fentanyl overdose that occurred 4 years ago. The parkinson's was caught by MISTAKE. Actually he was misdiagnosed with Parkinson's immediately after the overdose and years later, after they realized his Myoclonic Jerks weren't due to Parkinson's, they decided to rule out Parkinson's with a biopsy and coincidentally, the biopsy came back POSITIVE for having a protein that's related to Parkinson's. His neurologist couldn't believe it, he was shocked. Basically, his tremors and jerks are due to the post hypoxic brain insult he sustained during resuscitation of the fentanyl overdose, but his jerks were initially misdiagnosed (in the hospital) as being related to Parkinsons and years later they found out his jerks are due to LAS, but that he DOES indeed have Parkinon's as well. It seems kinda ridiculous right? But apparently, LAS is a VERY rare disease with less than 200 known cases worldwide so I guess that's why the doctors out here in Las Vegas were not educated on the existence of LAS and subsequently chalked up his movement disorder to Parkinson's. Anyways, he was put on a whole regimen of Parkinson's meds 4 years ago but despite "technically" having Parkinsons, he doesn't actually need those meds because his Parkinson's is sort of "dormant" or asymptomatic and his shakes are due to neurological misfirings in the damaged part of his brain stem from the overdose, NOT PARKINSONS. Now here we are 4 years later and he is totally stuck on Clonazepam, Ropinirole, Carbodopa/Levodopa, and Propanalol....along with a whole host of meds unrelated to his neurological diseases (insulin, Mounjaro, hypertension meds, etc.) Now the Clonazepam is an absolutely mandatory drug. He'll be on it forever as it's the only real effective treatment that they have to control LAS (other than Valproic acid which he does not like), but the reason I am here is to ask the question, is there any way to successfully wean himself off the Carbidopa/Levodopa & Ropinirole or is it basically an exercise in futility? He feels they are ruining his life and he wants to die. He told me the other day that he would kill himself if he wasn't convinced he was going to hell. I understand where he is coming from because although he has made a miraculous recovery from the overdose, he is almost unable to do anything entirely by himself and much of his problems seem to be due to the effects of these drugs he is on. As his son, I am his caretaker and can see how aggravated he is being physically dependent on me for help. He has tried stopping the Carbodopa/Levodopa & Ropiniriole and he was having some short-lived success, but he said it was incredibly hard and his shakes became much worse. I dont understand how these drugs work but I know they affect your dopamine levels. Is the "withdrawal" sort of akin to opioid withdrawal? That is something I am very familiar with and the only real thing I can use as a means of comparison or comprehension. If anybody has any good info on getting off Levodopa & Ropinirole, I would greatly appreciate it. If nothing else, at least getting off the Levodopa would be a huge success. He claims there is some kind of syndrome that can result from cold turkey stopping the usage of Levodopa though. He said it's a rare but very serious life-threatening syndrome that can send you to the hospital and "just taking more Levodopa to make the syndrome go away" does not work. Apparently, these drugs have very complex mechanisms and things aren't as black & white as you'd think they might be...that's what I'm finding out. Any help would be appreciated very much. God Bless. |
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