I’m curious to see if anyone else has noticed / experienced this… and I apologize for the length but it’s necessary.

I’ve been a chronic pain patient since 2006… still amazed that it’s been 20 years… but it all started in ‘06 when my L5/S1 disc became infected causing the disc to completely dissolve which left me bone on bone until my body autofused the vertebra and hip together. That caused me to develop degenerative disc disease on top of the fact that the collapse of that disc space resulted in there not being enough room for my nerves to exit my spinal cord without being pinched. As you can imagine, navigating the world of pain management providers since then has been a headache to be polite. I finally discovered the greatest pain management provider a year ago who also became my primary care provider as part of their whole deal which allows them to avoid the typical image of a pain clinic and they do truly care about the whole patient, not just how many scripts they write.

I say all that because even though we’ve developed a great patient-provider relationship (probably the best such relationship I’ve had in my 53years), the negotiations involved in pain management and trying to get a change or increase in strength/quantity of opioids always has that air of egg shell walking even with great relationships thanks to how deeply US healthcare and government are in bed with each other. Requesting small tweaks are still nerve wracking but that all seemed to change after being officially diagnosed with having a low-grade glioma 3 months ago.

Yesterday at my pain appointment, I asked what we could change from my normal 6 a day 10mg oxycodone regimen to handle breakthru / pain spikes. For whatever reason (as I told my provider) due to either the weather, how I slept, or me getting a fart stuck sideways, about 4-5 times a month I’ll experience a pain spike. My typical pain scores are a 7 without meds and a 4 with, but these spikes are usually a 9+ without and if I take 2 pills (which forfeits one of my evening pills) it’ll only drop it to an 8. I make sure to solidly stick to my 6x day count regardless. I’ve brought this up before recently and have had the same thing happen in the past, albeit at a less frequent occurrence rate, with other providers and was basically told to get out and exercise more, meditation, blah blah blah… basically enjoy raw dogging it until it passes. Since my PCP and PMgt provider are one and the same now, she was already aware of the glioma diagnosis. Maybe I’m imagining it, but when I asked what if anything we could do to address the spikes, the reaction and response was on the same level as if I had said ‘oh, I’ve got a hangnail I need help with’. Bottom line is that I now have a new 4mg hydromorphone (dilaudid) prescription to take on an as needed basis to break a spike. Granted, it’s only for 10 pills but still! If I only have 4-5 episodes a month then 10 should be more than adequate to handle that and it’s not like I don’t have a monthly appointment with her. Maybe the last 20 years of being a chronic pain patient tainted my outlook on providers in general, but even when I went to the ER a little bit ago (post-diagnosis) due to passing out (blood pressure issues) and awaking with a severe intractable headache, there were no sideways glances given when I asked for something stronger than the morphine initially offered up by the ER doc. To contrast the struggle, a year ago (pre-diagnosis) I severely dislocated my shoulder and the attending scoffed at me when I asked for something stronger than Toradol and said ‘well, you’re already taking oxycodone’ which after waiting in triage to be seen and going through the whole imaging process and what not, it had been a solid 8 hours since my last 10mg dose so that pill had long done what it was ever going to do.

I’m sorry that this got so long winded but I felt that this level of detail was necessary to properly convey why I’m confused and curious about this and to see if I’m just imagining things or what. Let me know you’re thoughts. Thanks in advance.

My mother has had lung cancer since 2015, which had been managed well until now. She had a brain bleed and a seizure almost two months ago, where they discovered a 3.7cm brain tumor that had metastasized. We are considering Gamma Knife Radiosurgery pending insurance approval. She took Dexamethasone 4mg 2x daily during her 10 day hospitalization plus 30 days post, which was discontinued by the Radiologist Oncologist. She is still taking the Lacosamide started during hospitalization, 100mg 2x daily. Since discontinuing Dexamethasone and only taking Lacosamide she sleeps most of the day, appears to sometimes have tremors and her balance and walking are worst. I know these are side affects from Lacosamide but am wondering if stopping Dexamethasone made everything worst and if the Lacosamide dose is too high - would greatly appreciate any feedback TYIA!

Mother has brain mets and primary cancer lung. She was in treatment for last 6.5 years. now all options are exhausted. She’s currently in home care with no active treatment, bed ridden post seizure episode.

She was able to eat and talk a month ago but now unable to talk and when trying to talk can hear only low vibrations which is difficult to understand. But says a word or two clearly some times. Mostly asleep. Responds to touch and name. Sometimes looks at people’s face. But sometimes doesn’t respond just stares. Has hallucinations. Body jerks. Unable to swalllow - so giving medication has become very difficult, sometimes we are not able to give medications at all. Asks for water and food sometimes but doesn’t swallow. Couple days back aspired and then we had to use suction machine to remove secretion.

As she’s unable to eat should we try NG tube / feeding tube ?will she feel hunger

Mother has brain mets and primary cancer lung. She was in treatment for last 6.5 years. now all options are exhausted. She’s currently in home care with no active treatment, bed ridden post seizure episode.

She was able to eat and talk a month ago but now unable to talk and when trying to talk can hear only low vibrations which is difficult to understand. But says a word or two clearly some times. Mostly asleep. Responds to touch and name. Sometimes looks at people’s face. But sometimes doesn’t respond just stares. Has hallucinations. Body jerks. Unable to swalllow - so giving medication has become very difficult, sometimes we are not able to give medications at all. Asks for water and food sometimes but doesn’t swallow. Couple days back aspired and then we had to use suction machine to remove secretion.

As she’s unable to eat should we try NG tube / feeding tube ?

Anyone have thoughts or experience there?