Hello.
I have occasionally read this forum from time to time, albeit for purposes of information on what other people have taken for general tolerances. I have read some very interesting and helpful things; information that has been able for me to become further educated on opiate based medications, allowing for informed discussions with my doctors.
Interesting enough, I have never taken any illegally prescribed or street drugs. I don't drink (rare occasion), and I don't smoke.
Yet, I am ill. I have been fighting various things all my life. Things became very ugly for me about a year ago, when my neurological system decided to go haywire on me. In which, my central nervous system has taken a hit, and various damaging effects to some critical organs. In short, I am dying.
Each medical institute I have been to has given me some interesting prognosis's, from dying in 10 months to becoming a quadriplegic by the end of this year. Right now, my doctor and I have been working on regulating my quality of life.
Enough of the background, I wanted to cover my experiences with some various medications I have been on for the past 6 months now (regularly) and some changes to my body. I believe the BlueLight community would have much more information than any other group or individual that I could inquire with. I appreciate any and all feedback.
For the past 6 months, I take on a regular basis for pain control:
- SUBSYS 1200 MCG (Fentanyl Sublingual) 4 times daily; separated by four hour increments (i.e. from 7:00 AM until 7:00 PM)
- Oxycodone 20MG, 4 times daily (immediate Release) (i.e. from ~9:00 PM, 1:00 AM)
- oxycontin 40MG, 2 times daily (extended Release) (i.e. 7:00 AM and 7:00 PM)
What I am finding is that this cocktail has worked wonders to allowing me to not be over-medicated and be able to function in life. I am very coherent and sober with this mixture (compared to many other cocktail attempts). Yet, I have noticed that in the past 2 months, the pain has been harder to subside. In which, I have found myself increasing the usage of the SUBSYS 1200MCG frequency to every 4 hours continuous (consuming 6 sprays per day vs 4); therefore depleting my weekly supply faster. In which, I stopped taking the Oxycodone (but still take the Oxycotin).
In the past 1.5 months, I usually get to Friday (filled on Monday) from the increased dosages. Then, I am left in a bad state where I have to go for about 40-45 hours without any SUBSYS. I have never officially felt a withdrawal to something, but I think I had been going through them. It is hard to tell, as my body is in terrible neurological and muscular pain. I cannot differentiate the source for "feeling bad".
What I have been doing to offset the lack of SUBSYS (and my doctor is aware of this, per our ongoing conversations) is to 40MG every 3 or so hours on the weekends until I can get a SUBSYS refil. Then, my I repeat the cycle.
As I have mentioned, I think I am building up a tollerance. I have noticed that the pain isn't as well controlled as it was before. I am now finding myself taking 60MG of Oxy per dosage, trying to cover the pain. One last note as an example of information; I was in the hospital two weeks ago. During my stay, I was prescribed dilaudid (through my IV - typical treatment drug). Normally, I take 2MG per 1.5 hours or so. In this last go around, it seemed like it had no impact on me what-so-ever. We increased it to 3MG per Hour - and that had some reduction in pain, but very little compared to previous hospitalizations.
I am worried. I feel like I am at my maximum levels that the doctors can push to me. We did a lot of blood panels, in which I had some low vitamin levels (B12, D); my doctor mentioned that studies have shown an increase in those will increase the effect of the opiate effect. Yet, I am just afraid that I am reaching an end here.
When I was at one of the major medical institutions, the head of their neurology department spoke with my wife and I, regarding the overall prognosis. In which, they said it was a rare illness that I have. That doctor had only seen a few patients with my same condition, and 3 of the 4 committed suicide as they could not handle the pain. The 4th died of a cardiac arrest (CNS failure).
I dont want to be another suicide statistic, but I am worried that we are running out of pain control methods. Hence ,I am reaching here but figured through the vast knowledge on BlueLight - someone can offer some opinions on what to do with high tolerance/resistance or some other pain control medicine?
Thank you.
Anonymous Joe
I have occasionally read this forum from time to time, albeit for purposes of information on what other people have taken for general tolerances. I have read some very interesting and helpful things; information that has been able for me to become further educated on opiate based medications, allowing for informed discussions with my doctors.
Interesting enough, I have never taken any illegally prescribed or street drugs. I don't drink (rare occasion), and I don't smoke.
Yet, I am ill. I have been fighting various things all my life. Things became very ugly for me about a year ago, when my neurological system decided to go haywire on me. In which, my central nervous system has taken a hit, and various damaging effects to some critical organs. In short, I am dying.
Each medical institute I have been to has given me some interesting prognosis's, from dying in 10 months to becoming a quadriplegic by the end of this year. Right now, my doctor and I have been working on regulating my quality of life.
Enough of the background, I wanted to cover my experiences with some various medications I have been on for the past 6 months now (regularly) and some changes to my body. I believe the BlueLight community would have much more information than any other group or individual that I could inquire with. I appreciate any and all feedback.
For the past 6 months, I take on a regular basis for pain control:
- SUBSYS 1200 MCG (Fentanyl Sublingual) 4 times daily; separated by four hour increments (i.e. from 7:00 AM until 7:00 PM)
- Oxycodone 20MG, 4 times daily (immediate Release) (i.e. from ~9:00 PM, 1:00 AM)
- oxycontin 40MG, 2 times daily (extended Release) (i.e. 7:00 AM and 7:00 PM)
What I am finding is that this cocktail has worked wonders to allowing me to not be over-medicated and be able to function in life. I am very coherent and sober with this mixture (compared to many other cocktail attempts). Yet, I have noticed that in the past 2 months, the pain has been harder to subside. In which, I have found myself increasing the usage of the SUBSYS 1200MCG frequency to every 4 hours continuous (consuming 6 sprays per day vs 4); therefore depleting my weekly supply faster. In which, I stopped taking the Oxycodone (but still take the Oxycotin).
In the past 1.5 months, I usually get to Friday (filled on Monday) from the increased dosages. Then, I am left in a bad state where I have to go for about 40-45 hours without any SUBSYS. I have never officially felt a withdrawal to something, but I think I had been going through them. It is hard to tell, as my body is in terrible neurological and muscular pain. I cannot differentiate the source for "feeling bad".
What I have been doing to offset the lack of SUBSYS (and my doctor is aware of this, per our ongoing conversations) is to 40MG every 3 or so hours on the weekends until I can get a SUBSYS refil. Then, my I repeat the cycle.
As I have mentioned, I think I am building up a tollerance. I have noticed that the pain isn't as well controlled as it was before. I am now finding myself taking 60MG of Oxy per dosage, trying to cover the pain. One last note as an example of information; I was in the hospital two weeks ago. During my stay, I was prescribed dilaudid (through my IV - typical treatment drug). Normally, I take 2MG per 1.5 hours or so. In this last go around, it seemed like it had no impact on me what-so-ever. We increased it to 3MG per Hour - and that had some reduction in pain, but very little compared to previous hospitalizations.
I am worried. I feel like I am at my maximum levels that the doctors can push to me. We did a lot of blood panels, in which I had some low vitamin levels (B12, D); my doctor mentioned that studies have shown an increase in those will increase the effect of the opiate effect. Yet, I am just afraid that I am reaching an end here.
When I was at one of the major medical institutions, the head of their neurology department spoke with my wife and I, regarding the overall prognosis. In which, they said it was a rare illness that I have. That doctor had only seen a few patients with my same condition, and 3 of the 4 committed suicide as they could not handle the pain. The 4th died of a cardiac arrest (CNS failure).
I dont want to be another suicide statistic, but I am worried that we are running out of pain control methods. Hence ,I am reaching here but figured through the vast knowledge on BlueLight - someone can offer some opinions on what to do with high tolerance/resistance or some other pain control medicine?
Thank you.
Anonymous Joe