So it has been almost three months since my last post. I last left you in October when I started a new nerve pain regimen, Lyrica, to be taken every single day (as I did with the gabapentin) and I could increase the dose during pain spells to help with breakthrough pain after taking oxycodone. Lyrica is generally used for fibromyalgia. I'm sure you've heard of it, since it's advertised on TV all the time.
Lyrica did not help my pain.
Around mid November, my doctor put me on a new medication called Nortryptilene.
This does not help.
I will say that gabapentin, Lyrica and now nortryptilene help with ONE thing: the occasional neuropathy in my arm, which I believe is caused from a tumor in my hand bone (he is pictured in my 'meet my exterior tumors' tab). Yes, I call the tumor a 'he' because I have named him Handel. Yes, like the composer.
ANYWAY, meanwhile my oxycodone was also increased. I was finally allowed to take 20 mg at a time 2x day (during my pain spells only!) This helped magnificenly in the beginning, but the side effects were terrible. And when pain was at its worst, it wasn't long before I was in pain again.
This just can't work for me anymore, ESPECIALLY for these reasons:
1) it made me itch all over my scalp, my face, in my ear, up my nose, etc etc.
2) 20 mg worked much better than 10 mg, but depending on the severity of pain, 20 mg would either work for 24 hours or 4. Not good.
3) constipation - it has totally screwed with my system.
VERY RECENTLY my pain doctor decided to try a new narcotic on me called Nucynta. The lowest doseage is 50 mg.
This did not work one bit.
The next highest dosage is 100 mg. My doctor didn't necessarily want to increase my dosage 100%, but what else was there to do? So she did it. This medication is meant to be an 'extended release' rather than attacking the pain immediately and short term. SO FAR 100mg is helping...but I still have REALLY bad breakthrough pain. The breakthrough pain lasts SHORTER now than it did with the 50 mg and with the oxy, but breakthrough pain still comes! The 'spell' is very short, but it happens more frequently, whereas breakthrough pain with the others lasted most of the day. So, it's progress!
However, SO FAR, there is nothing I can do for breakthrough pain, since I'm only allowed to take this once a day, close to bed time (and believe me, 100 mg is a very good sleep aid).
There is talk that depending on how I'm feeling on 100mg that I may get to try Tramadol during the day. I think a low dosage will do the trick. It's so frustrating to be at work (YES at work, I finally got a job!) and have to sit through #10 pain, and know there is NOTHING I can do about it until bedtime...
My pain has been pretty terrible since October, as it occurs MUCH more frequently. I was in pain every single day from late mid October until early December. Now my pain spells are a week apart. Before it would only happen 10-15 days out of the month. But as I said, this new medicine is helping more, despite the recurrance of breakthrough pain, so I'm happy so far!
In other news since my last post:
I got job.
My husband passed his dissertation defense so he is on his way to finally getting his PhD.
I signed up to run for the Cupid's Undie Run! Please consider donating. It takes a few minutes to load because I have pictures embedded. I'm hoping to get that fixed soon.
PLEASE TELL EVERYONE YOU KNOW ABOUT THIS! My personal goal is $1,000; our team goal is $10,000.
As the time gets closer for the run, I will have a Tumor of the Week, starting with Bob. I will blog about the tumor, when i remember seeing it for the first time and how it effects me.
That's all. Happy New Year!
Lyrica did not help my pain.
Around mid November, my doctor put me on a new medication called Nortryptilene.
This does not help.
I will say that gabapentin, Lyrica and now nortryptilene help with ONE thing: the occasional neuropathy in my arm, which I believe is caused from a tumor in my hand bone (he is pictured in my 'meet my exterior tumors' tab). Yes, I call the tumor a 'he' because I have named him Handel. Yes, like the composer.
ANYWAY, meanwhile my oxycodone was also increased. I was finally allowed to take 20 mg at a time 2x day (during my pain spells only!) This helped magnificenly in the beginning, but the side effects were terrible. And when pain was at its worst, it wasn't long before I was in pain again.
This just can't work for me anymore, ESPECIALLY for these reasons:
1) it made me itch all over my scalp, my face, in my ear, up my nose, etc etc.
2) 20 mg worked much better than 10 mg, but depending on the severity of pain, 20 mg would either work for 24 hours or 4. Not good.
3) constipation - it has totally screwed with my system.
VERY RECENTLY my pain doctor decided to try a new narcotic on me called Nucynta. The lowest doseage is 50 mg.
This did not work one bit.
The next highest dosage is 100 mg. My doctor didn't necessarily want to increase my dosage 100%, but what else was there to do? So she did it. This medication is meant to be an 'extended release' rather than attacking the pain immediately and short term. SO FAR 100mg is helping...but I still have REALLY bad breakthrough pain. The breakthrough pain lasts SHORTER now than it did with the 50 mg and with the oxy, but breakthrough pain still comes! The 'spell' is very short, but it happens more frequently, whereas breakthrough pain with the others lasted most of the day. So, it's progress!
However, SO FAR, there is nothing I can do for breakthrough pain, since I'm only allowed to take this once a day, close to bed time (and believe me, 100 mg is a very good sleep aid).
There is talk that depending on how I'm feeling on 100mg that I may get to try Tramadol during the day. I think a low dosage will do the trick. It's so frustrating to be at work (YES at work, I finally got a job!) and have to sit through #10 pain, and know there is NOTHING I can do about it until bedtime...
My pain has been pretty terrible since October, as it occurs MUCH more frequently. I was in pain every single day from late mid October until early December. Now my pain spells are a week apart. Before it would only happen 10-15 days out of the month. But as I said, this new medicine is helping more, despite the recurrance of breakthrough pain, so I'm happy so far!
In other news since my last post:
I got job.
My husband passed his dissertation defense so he is on his way to finally getting his PhD.
I signed up to run for the Cupid's Undie Run! Please consider donating. It takes a few minutes to load because I have pictures embedded. I'm hoping to get that fixed soon.
PLEASE TELL EVERYONE YOU KNOW ABOUT THIS! My personal goal is $1,000; our team goal is $10,000.
As the time gets closer for the run, I will have a Tumor of the Week, starting with Bob. I will blog about the tumor, when i remember seeing it for the first time and how it effects me.
That's all. Happy New Year!
Sorry to hear that none of the prescribe medication doesn’t help you ease the pain of your condition. In your situation, I think it would be good to get pain management. That way, they can help you find the right medication to help you manage the pain, day by day.
ReplyDeleteThanks for your comment. But all of these medications are prescribed BY my pain management team. They are doing precisely that-- managing my pain day by day. I'm not doing this on my own! :) Pain management doesn't happen with the snap of fingers. It is trial and error. I have a condition most doctors aren't familiar with treating, SO finding the perfect medication is going to take osmet ime.
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