When I last wrote, I told you about being a Nucynta trial. Nucynta is also a narcotic, but it does not have the same side effects (supposedly) of oxycodone. When I was taking oxycodone, I was extremely constipated. It would make my body itch. I would scratch myself to sleep. It made me drowsy and nauseous. Nucynta was supposed to be better. It wasn't. I had said that the 50mg trial did not work, so I was put on the 100mg pill. This worked better than the 50 mg, but it still did not truly take away my pain. I was also still constipated (and when I talk about constipation on here, I mean it's bad- I don't use the bathroom for weeks and I gain up to 6 pounds just from being...full and stuck).
Despite all of this, I was actually going to be ok with doing the 100mg, because some relief is better than none. But when I saw my pain doctor on January 4th, she was quite surprised even the 100mg Nucynta didn't work, so she wanted me to get off of it. FYI- it's easy for me to just stop medicines cold turkey. I don't have any dependence on any medicine I take.
So now I am on a new trial: Oxycontin (I used to be on oxycodone) at night, and tramadol during the day.
In case you don't know, the difference between oxycontin and oxycodone is the release of the narcotic into the body. When you take oxycodone, the mediicne attacks the pain all at one time, and it works within 5-10 minutes, depending on the strength of the pill. Oxycontin is an extended release oxycodone. Instead of your body absorbing the entire dose at one time, it stays in your body and attacks the pain through a period of time. That's the best way I can describe it.
Trial day 1 on oxycontin, about January 7th, I had taken 2 tramadol earlier in the evening (50 mg each) and I was still up all night because of the pain. I took another tramadol which helped me sleep. The next morning I was miserable. Thankfully my pain spell ended around this time, but now it's coming back. These are the things I'm noticing since it has been about 2 weeks since I first started:
1) For the first few days of my pain spell, the tramadol did not work at all. It made me VERY jittery. BUT after few days in, it's starting to work better. I'm less jittery. The intensity of my pain in between the doses is not nearly as bad (a 5 as opposed to an 8). Maybe my body is getting used to it?
2) one oxycontin at night does nothing for my pain, but if i take one tramdol and one oxycontin, it works! Howver, when I close my eyes after taking both pills together, it's like lights are blinking inside my eyes- if that makes sense? I'm hoping that's temporary.But I sleep! And I don't wake up in pain. It wakes me up in the morning though! But i'd rather waking up after sleeping for a few hours than to lay awake feeling the tumor growing into my pelvis. It's a grinding, shredding, pulsating feeling. Imagine your skin being grated with a cheese grater and stabbed and hammered at the same time, and that is what is going on in my pelvis.
The medicines, however, make me VERY drowsy. My doctor put me on tramadol to take during the day so I'm not on oxy all day long, but I don't know how I'm going to keep my head off my desk. Thankfully my pain spell is going on NOW, when I have a 3 day weekend. I got to sleep a LOT in the last few days!
Drowsy or not, I'm just glad for now that this is working better. I'd rather be tired than in pain. But if the lethargy does not go away, I will talk to my doctor about it.
I also mentioned in my last entry that I am running in the Cupid's Undie Run on February 9th. I have raised $600 so far! I'm so so grateful to my donors and all those who have been so supportive of me as I endure the effects of nerve tumors growing inside my body. I hope to raise $1,000! if you are reading this, please share my page and if you CAN, please donate! I have picked out my "outfit" and I'm ready to freeze my bum off. I'll do anything to help raise awareness for NF in hopes that doctors can eventually find a cure or find a way to help us cope.
Despite all of this, I was actually going to be ok with doing the 100mg, because some relief is better than none. But when I saw my pain doctor on January 4th, she was quite surprised even the 100mg Nucynta didn't work, so she wanted me to get off of it. FYI- it's easy for me to just stop medicines cold turkey. I don't have any dependence on any medicine I take.
So now I am on a new trial: Oxycontin (I used to be on oxycodone) at night, and tramadol during the day.
In case you don't know, the difference between oxycontin and oxycodone is the release of the narcotic into the body. When you take oxycodone, the mediicne attacks the pain all at one time, and it works within 5-10 minutes, depending on the strength of the pill. Oxycontin is an extended release oxycodone. Instead of your body absorbing the entire dose at one time, it stays in your body and attacks the pain through a period of time. That's the best way I can describe it.
Trial day 1 on oxycontin, about January 7th, I had taken 2 tramadol earlier in the evening (50 mg each) and I was still up all night because of the pain. I took another tramadol which helped me sleep. The next morning I was miserable. Thankfully my pain spell ended around this time, but now it's coming back. These are the things I'm noticing since it has been about 2 weeks since I first started:
1) For the first few days of my pain spell, the tramadol did not work at all. It made me VERY jittery. BUT after few days in, it's starting to work better. I'm less jittery. The intensity of my pain in between the doses is not nearly as bad (a 5 as opposed to an 8). Maybe my body is getting used to it?
2) one oxycontin at night does nothing for my pain, but if i take one tramdol and one oxycontin, it works! Howver, when I close my eyes after taking both pills together, it's like lights are blinking inside my eyes- if that makes sense? I'm hoping that's temporary.But I sleep! And I don't wake up in pain. It wakes me up in the morning though! But i'd rather waking up after sleeping for a few hours than to lay awake feeling the tumor growing into my pelvis. It's a grinding, shredding, pulsating feeling. Imagine your skin being grated with a cheese grater and stabbed and hammered at the same time, and that is what is going on in my pelvis.
The medicines, however, make me VERY drowsy. My doctor put me on tramadol to take during the day so I'm not on oxy all day long, but I don't know how I'm going to keep my head off my desk. Thankfully my pain spell is going on NOW, when I have a 3 day weekend. I got to sleep a LOT in the last few days!
Drowsy or not, I'm just glad for now that this is working better. I'd rather be tired than in pain. But if the lethargy does not go away, I will talk to my doctor about it.
I also mentioned in my last entry that I am running in the Cupid's Undie Run on February 9th. I have raised $600 so far! I'm so so grateful to my donors and all those who have been so supportive of me as I endure the effects of nerve tumors growing inside my body. I hope to raise $1,000! if you are reading this, please share my page and if you CAN, please donate! I have picked out my "outfit" and I'm ready to freeze my bum off. I'll do anything to help raise awareness for NF in hopes that doctors can eventually find a cure or find a way to help us cope.
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