4 posts shown.
UPDATE!!!
In my last post, I was venting about how absolutely brutal tapering off Lyrica can be, but I finally talked to my doctor and begged him to write my prescriptions in 75mg doses so I could actually manage the taper myself. I've seriously messed up before by trying to go cold turkey, which turned out to be a massive mistake. So, I’m feeling pretty proud of myself right now—for the first week I was at 525mg a day (my max dose is 600mg), but I've already dropped down to 450mg for a few days now. Honestly, I haven't even felt the difference from that missing 150mg daily. The plan is to keep scaling back until I'm totally off it. Anyway, if anyone is struggling, I have some extra lying around, so feel free to shoot me a DM. Just please, please be careful—this stuff is no joke. Helex and Diazepam are basically baby meds compared to this. But, just to play devil's advocate for a second... Lyrica is honestly amazing for anxiety (at least for me, though everyone reacts differently), so if you've only been on it for a little while, don't freak out. I highly doubt you're hooked like I am after five years on it, which is way too long. I've decided it's time to focus more on myself, which means fewer pills and more psychotherapy. It’s always way easier to just pop a pill than to actually put in the work to deal with things properly... because like psychiatrists always say, medication is just a crutch, and once you take the cast off a broken leg, you still have to do the actual rehab.
Hey everyone! Just wanted to jump in here and share my own experience with Lyrica... I've actually been on it for five years now (hitting a max dose of 600mg a day) to deal with Generalized Anxiety Disorder. Honestly, it’s the only thing that keeps me steady enough to get through my daily routine. But man, it's true what they say—trying to quit is absolutely brutal. I've attempted to taper off a few times, and that withdrawal syndrome was still hitting me hard even 7 or 8 days after my last dose!!! If you can help it, try not to let yourself get too dependent on it! If anyone wants to chat more about the specifics, feel free to reach out!
Hey Angela Wright... thanks a ton for the heads up. We're gonna do everything we can on our end. 🙂
I’m based out of San Diego, and back in early February, my dad got hit with a diagnosis for a malignant tumor on the front of his epiglottis—basically throat/vocal cord cancer that’s already spread to his tongue, and honestly, I might be forgetting a few other nearby organs too. The surgeon at the Mayo Clinic who performed the procedure to create the opening in his throat for the cannula was incredibly blunt with us. He didn't sugarcoat anything; he told us we were way too late, that removing the tumor would basically mean removing half his head, and that even in a best-case scenario, he’s looking at maybe three or four years left. He even suggested we start looking into hospice facilities right now. In a weird way, we’re actually grateful for how straight up the doctor was. It’s better to take the full shock all at once rather than being fed little pieces of bad news over time. We aren't even entertaining the idea of hospice yet, obviously, but we definitely get how heavy this is. We know what cancer means because my grandpa went through it too. Dad’s been dealing with depression for years, so this whole mess is just digging that hole even deeper. He won't touch any kind of psychological help, and honestly, I really hope—and think—that he hasn't fully processed the fact that he actually has cancer, even though the doctors were super direct with him. He’s always struggled with self-confidence and gets pretty forgetful, which I'm guessing is a byproduct of those epileptic seizures he's had caused by alcohol... though he’s never actually gone to a doctor for that. You can only get him into an office if you practically drag him there. Most of the time, it’s like he just forgets or blocks out anything that isn't convenient or helpful for him. I'm actually thankful for that right now, even if it's a double-edged sword since he refuses to quit smoking or drinking beer. He only eats when he's starving, and he won't drink enough fluids, so I have to be super tactical and basically trick him into eating healthy food. It is seriously tough trying to cooperate with someone who refuses to cooperate with you. Even though the doctors laid it all out for him, he seems to have tucked all that info into some little pocket in his brain and completely ignored the gravity of the situation. Right now, he isn't even stressed about the cancer itself; he's just miserable about the constant trips to the clinic and the radiation treatments we just started a few days ago. Some days are okay—he takes his meds and eats well—then we'll have five bad days, then four good ones. We're just taking it one day at a time... doing our best not to spiral and trying our hardest to beat this shitty cancer! (...sorry for the language!)🙂).
Anyway... the main reason I’m posting is that I really wanted to give a huge shoutout to my sister Nevenka and Dr. Romic from the mobile palliative care team. If I remember correctly, they’re pretty much the only crew doing this kind of work around the San Diego area. They’ve reached out to check on my dad every once in a while, even though we’ve only actually called them a few times for advice or help with his Tramadol shots. Honestly, they show way more heart and actual empathy than that cold, unreachable oncologist we've been dealing with. The other reason I'm popping in is to offer a little bit of support if anyone else here is caring for someone with the same type of tumor. Please feel free to reach out—I won't be glued to my computer since life is pretty hectic right now, but I’ll do my best to check my messages whenever I can. I know how incredibly tough this is for all of us, especially for those who are actually sick. Just a heads-up, I’m definitely not a medical pro or anything, but I'm more than happy to share whatever personal and family experiences I have to help us get through this.
Alright, so here's the deal... just a few basics to get us started.
Quick tip if you're heading in for an X-ray: make sure you grab a plastic cannula. Don't let them talk you into just getting one single tube—you're actually entitled to four, not just one per year. When we first started out, they tried telling us we only got one plastic one and two silicone ones annually. Just a heads-up though, if you go the silicone route, definitely double-check with the technician doing the imaging to see if that material even plays nice with the X-rays. We were thinking about just picking up another plastic one ourselves, but man, those things aren't exactly cheap. $1000 No recipe yet. We haven't even checked in with the technicians about the silicone.
If you're looking to kickstart your appetite, just have your GP write you a script for Megostat.
If you're looking to help him put on some weight, maybe ask his primary care doctor to prescribe Supportan too. It’s this fiber-packed shake that hits around 300 calories—honestly, on some days, it's pretty much the only thing Dad actually manages to get down.
...I mean, I’m pretty sure those two meds have their own set of side effects too, but they’ve been a huge help for us.
With the Megostat, it’s kind of hit or miss—sometimes it works wonders, and other times, even with it, there's just zero appetite.
As for pain management advice... honestly, your best bet is to head over to the Pain Management Clinic at the local hospital; they'll figure out the absolute best therapy for you. Usually, those clinics run during morning hours... at least at the Mayo Clinic.
Right now, we're using Tramadol (100mg) mixed with OxyContin (10mg) to handle the pain. We deal with some side effects like constipation or diarrhea every now and then... but lately, we've been struggling with really frequent, difficult, and super painful urination (it can sometimes take up to 15 minutes!). I'm thinking it's probably from the Tramadol and OxyContin, especially since the radiation isn't helping much, even though they're treating the throat rather than something like the bladder nearby.
Ugh... anyway, that's the update for now.
Wishing you all health, joy, and plenty of optimism... for yourselves and everyone close to you... big and small! And stay brave and strong... because you really are, even when it feels like you aren't! I'm rooting for all of us!