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Opioids Scale of Strength | High dosages of Opiates - feedback requested!

JoeDobbin

Greenlighter
Joined
Jun 7, 2015
Messages
27
Hello!

I wanted to gather some data to use for personal comparisons. I am ill, and receive the medicine from a local HOSPICE pharmacy. It is a neat setup, as they can combine anything into various forms and quantity to accomplish their goals.

I have been on multiple types of opiates and dosages; over time, I have developed the typical resistance and have not received the euphoric sensation for more than a year and a half now. We have tried to change the opiate and doses, but this has been with no success. I am getting some pain control, but nothing like I did originally. Further, I am at the point of wanting that feeling again, not so much as to chase a high, but to just get a distraction from the pain and know the medicine is actually working.

In my current position, I am able to essentially set my own dosage parameters.

Hence, what I would like from Bluelight is some data of what type of opiate they have taken, what form it was in, the dosage amount, and the length of time. Specifically, I am looking for high dosage data. I am not interested in someone popping 10mg of Oxy 4 times daily for a month. Finally, I welcome any advice for my current opiate prescription, as I can adjust the quantity taken with full liberties. I would like the advice to be practical and with thought, as I don't want to prematurely end my life with this pursuit. Yet, I am fully aware, my mileage may vary. Further, this advice would be for me specifically - not for an average user.

Here are my last three combinations, in chronological order with #3 being current:

Combination #1. I was on this regiment for three months:
- Drug: Fentanyl Patch (100mcg)
- Dose: Two 100mcg Patches
- Frequency: Change every 72 hours

- Drug: Oxyconitn Extended Release
- Dose: 120mg tablets, taken twice a day (one in the morning, one at evening); total of 240mg daily.
- Frequency: Taken daily

- Drug: Abstral (Fentanyl Sublingual Tablets)
- Dose: 1200mcg, taken five times a day (~ every 4 hours); total of 6000mcg daily.
- Frequency: Taken daily

- Drug: Tramadol Instant Release
- Dose: 50mg tablets, taken 10 times daily (~ every 2 hours, between Abstral doses); total 500mg
- Frequency: Taken daily

Combination #2. I was on this regiment for a week:
- Drug: Fentanyl Patch (100mcg)
- Dose: Two 100mcg Patches
- Frequency: Change every 72 hours

- Drug: Oxyconitn Extended Release
- Dose: 120mg tablets, taken twice a day (one in the morning, one at evening); total of 240mg daily.
- Frequency: Taken daily

- Drug: Dilaudid Liquid (sublingual)
- Dose: 40mg per mL, taken 6 times daily; total 240mg
- Dose: Secondary dosage of .5 mL (20mg) to be taken every 2 hours (PRN). Total 160mg.
- Dose: Total 400mg daily / 10 mL daily
- Frequency: Taken daily

Combination #3 - currently taken:
- Drug: Fentanyl Patch (100mcg)
- Dose: ONE 100mcg Patch
- Frequency: Change every 72 hours

- Drug: Dilaudid IV connected through my port-a-cath
- Dose: 6 mg per hour basal, 6mg per hour as a bolus; 12mg per hour; 288mg MAX per 24 hours (realistically I am getting 240-250mg per 24 hours)
- Dose (bolus is set to 1mg per button press, every 10 minutes, 6 times an hour)

I have been told that these three combinations of opiates is a significant amount. Yet, this has been administrated through doctor orders. I would like to see what other people have been taking, as people who take via recreational follow their own limits, pushing a different boundary level.

Hence, this boundary will naturally be higher than what doctors order. Depending on the feedback received, I could hypothetically learn that many people push 500mg per 24 hours of IV Dilaudid vs my 250mg. Hence, I could start titrate higher.

Does that make sense?

I can also use the online opiate conversion calculators if people have been taking other high dosages, like Morphine.

I look forward to everyone's feedback!

Thank you,
Joe
 
Ok, maybe the amount of information scared everyone off? Simple question then:

I did a 4mg of IV Bolus. Felt nothing.
I waited 10 minutes, and did another 4mg of IV Bolus. Felt nothing.

What amount should I do now? Please write what the highest amount of IV Dilaudid you have taken that did NOT over dose you. Also, if you have ever over dosed on IV Dilaudid, please post the amount that you have taken which was "too much".

Thank you,
Joe
 
I can't give you a specific answer, but as a recreational opiate user, I look at 3 things to guage how much more I can take; pupil size, nausea level, sedation. Pinpoint pupils, vomiting, and nodding out really hard are all signs that you might be getting close to OD'ing. Also, always administer slowly if your dealing with larger amounts than you're used to, never do a large dose all at once. Don't chase the dragon too much either, the high will never be the same as the first few times and this is how a lot of people OD. Never mix with alcohol or benzos unless you have a tolerance to them too, and even then, be careful.
 
i feel for you joe, you must be in extreme pain :(

however i think the reason you are getting no response is you already get 288mg IV dilaudid.... you are probably the most opiated person on this forum. at that rate, a recreational user with a six-figure salary would be out of money in a year...
 
I can't give you a specific answer, but as a recreational opiate user, I look at 3 things to guage how much more I can take; pupil size, nausea level, sedation. Pinpoint pupils, vomiting, and nodding out really hard are all signs that you might be getting close to OD'ing. Also, always administer slowly if your dealing with larger amounts than you're used to, never do a large dose all at once. Don't chase the dragon too much either, the high will never be the same as the first few times and this is how a lot of people OD. Never mix with alcohol or benzos unless you have a tolerance to them too, and even then, be careful.

Thank you for your reply. The warning signs that you spoke of, looks to be great indicators for boundary limits. With me specifically, all of those signs are either non-existent or normal. My wife can use a flashlight and get a normal papillary response. Overall sedation or sleepiness isn't impacted from the amounts I have taken. This is why it some-what worries that I am either missing or just not exhibiting a sign, while pushing an invisible boundary.

For example, I rarely drink. Yet, when I do - I have a very high tolerance for alcohol before I feel and become drunk. Yet, my blood alcohol level is extremely high when the drunk sensation occurs (near poisonous levels). Hence, I never drink as the cost for reward is not there.

Anyhow, thank you for the advice.

i feel for you joe, you must be in extreme pain :(

however i think the reason you are getting no response is you already get 288mg IV dilaudid.... you are probably the most opiated person on this forum. at that rate, a recreational user with a six-figure salary would be out of money in a year...

Thank you for your reply, xivixive!

While that isn't something I was wanting to hear, it does put things into perspective for me. Unfortunately, it is actually quite disappointing or rather upsetting. Ha! Maybe my emotion is a side effect from all of the opiates... I just find it upsetting that my health can be so problematic to cause the issues it has. Now, I guess I am on a very high amount of opiates to help, which feel like they are doing nothing.

I am just looking for something to give me some sort of euphoric feeling. Damn, I deserve it after the amount of pain and suffering I have been through.

Could I bother anyone for a simple science test?

Be in a non-opiated state, whereas you have no opiates in your body at all. Then, do something that causes minor pain. Pinch your self hard, or use a pointed object on a sensitive spot that will cause you a little pain that can be used for measurement. Once you have been able to recognize the level of pain for that action, use opiates to however you do. Once you are in your euphoric high (or even if not and time has passed where the opiates should be applying it's effects) - then redo the small pain test.

Is the pain the exact same?

Thank you,
Joe
 
You'd get more pain relief if your Hydromorphone doses were 12mg every hour all at once. Getting 1mg every 10 minutes kills the effect.

For example, if you take 20mg of Hydrocodone now and another 20mg an hour later you won't get the same effect as you would if you took 40mg of it at once.

You could potentially be more tolerant to opiates than the guy next to you, but there's always some tolerance to play with. I feel this aspect has been overlooked with you.

You have some insane receptor site down regulation due to Fentanyl. You're probably taking more opiates than anyone I've ever met but with little benefit to you.

A lot of people perceive the given euphoria as pain killing efficacy. Fentanyl doesn't give much euphoria but it sure does destroy your tolerance. Which you always want to keep low.

I'd try to decrease your Fentanyl dosage and replace it with an equivalent Oxycodone dosage. Like I said earlier, the Hydromorphone will be much more effective if taken all at once rather than 1mg every 10 minutes.

Hopefully you can glean something from this post or someone else's. If you're going to take such ridiculous doses of opiates, they need to be effective.

Methadone might be something to look into. The fact that it blocks other opiates after a certain dose has to be remembered. Though, I think high Hydromorphone doses would break through.

There's also Oxymorphone, a very powerful substance.

I guess the two main points of this post is replacing Fentanyl with something else and adjusting your acute dose.

I think for severe pain, doctors like Fentanyl for its strong sedation. But I feel like an appropriate benzo dose combined with an appropriate opiate dose would provide better pain relief than Fentanyl plus another opiate.
 
I have been on-and-off addicted to opiates ranging from heroin to fentanyl to methadone (maintenance , but body still dependent) for the past 22 years.

I have never approached what you take on a daily basis. For instance, when abusing fentanyl I would do maybe a 100 mcg/hr patch buccally (around 12 mg) over 4 days or so. But those fentanyl patches raised my tolerance from being able to take 20 mg of oxycodone and feel it to needing to do 7 bag shots of heroin 3-4 times per day. (Probably around 1.5 g or so, hard to say).

Anyway I had some bad habits at times. Others on here have mentioned worse. You asked for recreational users opinions, thinking they perhaps pushed the envelope a bit more...but honestly I don't know of any recreational user who comes close to your prescribed doses. Like someone said...no one could afford that habit....

I don't know what to tell you...at those doses you're probably so tolerant that a little opiate high probably isn't going to happen. From what you say, just from pupil reaction, it seems your body is used to it all. That's kind of the stage where using just keeps you normal.

You may find certain opiates that hit different receptors make you feel better just because you aren't used to them...methadone for instance...if you are taking opiates that primarily hit the mu receptor maybe one that also hits kappa would help?

But really, the usual options are to take more, or to take less for a while and let your tolerance drop then go back up. But at your high doses I'm not sure more would do much.


To your other question, when I did use things like pinching and such never felt different to me...

Anyway, good luck. Maybe someone who does have experience with doses like yours will chime in. Otherwise I'm sorry, but I can't help very much.



F
 
:\ Hey Joe...If you are in pain management with a good team of doctors who recognize the intensity of your physical pain, you are MOST fortunate. Having said that, I can only imagine the suffering (cancer?) you endure.

I am in PM since 2014, but sadly the amount of opiate to relieve pain for me knocks me OUT. I cannot exist that way, as I have to be alert and cognizant for career and oversight of my 90 year old mom's healthcare (in facility).

The first day I met my pain doctor he went straight to Fentanyl, which I refused. I'd used it in 2005/06 (patches and lollipops) with great success until it failed me. I was spending more time in WDs with my head in the toilet, than feeling relief. SO...I said "no" to Fentanyl, which IMO is the highest step on the ladder.

Long story less long...I started with Morphine (no) then Oxycodone (maybe, but can't afford ER formula) then agreed to try Fentanyl again. After 6 weeks of horror with redesigned non-gel patches every 48 hours, I weaned off and refused to take more. He put me back on Oxycodone, where I remain. It does little for my pain (agony) and the rebound pain is devastating.

So, basically I suffer 24/7. I was hospitalized with partial bowel obstruction recently...surgery may still become necessary.

I'm just guessing, so please don't take offense...With a port-a-cath, are your issues GI related? I ask only because I deeply empathize. I am so very sorry that you are unable to find relief with such a high level of meds. Perhaps absorption issues? This may be a dumb question, but have you had genetic testing done to confirm your metabolism/absorption of pain meds? Just some shots in the dark, in hopes of helping you.

Sending positive vibes to you.
 
Depending on the feedback received, I could hypothetically learn that many people push 500mg per 24 hours of IV Dilaudid vs my 250mg. Hence, I could start titrate higher.

There is no upper limit to opiate tolerance.
But after a certain level, you can no more get the same effect ( euphora/pain relief) , the effect is shorter , the side effects stronger.
You are already over this limit.
 
maybe you should try ultra low dose naltrexone, i've made a thread on it : in pharmacology sub-section : Drugs Microdosing - Share your knowledges and experiences
 
How have you been in hospice care for over 18 months? Isn't hospice for when Doctors decide you have less than 6 months to live?

Not trying to be callous, it will just help us to understand what kind of treatment you're in. Also maybe, why do you hurt so much?
 
You'd get more pain relief if your Hydromorphone doses were 12mg every hour all at once. Getting 1mg every 10 minutes kills the effect

{....snip....}

I guess the two main points of this post is replacing Fentanyl with something else and adjusting your acute dose.

Thanks for your thoughts and suggestions.

It is quite a frustrating position to be in. With my current IV dosage of Hydromorphone through a Pain Pump, my overall pain levels have dropped to a "5" on the pain scale. This is quite significant, as typically I would always reside at an "8" or so. Then, there are the spikes of pain, which swing the numbers up a few points. Overall I am quite pleased with it being a #5 on the scale.

The issue is though, the longer as I sit as a "5" on the scale with no euphoric or feeling changes with the continuous taking of medicine - it seems I "forget" how bad it was before. Sure, I remember it being bad, but as I sit here in pain pumping stuff into my chest - it almost seems psychological - "is it doing anything?" I will ask myself. I just wish I had some sort of confirmation via a minor distraction in a euphoric or altered feeling.

As I read through the various comments, it seems like I have the following choices:

A) Take less medicine to have my pain go back up to an "8" to re-appreciate the difference of an "8" to a "5".
B) Take more medicine, trying to "chase the dragon" while not Over Dosing.
C) Find something different to take, hitting a different opiate receptor.

No one in their right mind would choose "A". Option "B" is what I was trying to learn more about, experimenting with the pain pump (I have full control of it; I can set the bolus and basil amounts as I want...). Option C isn't really available. Since I receive all of my medication through a pharmacy and doctor prescriptions, I cannot just try another without getting a new subscription. At this point, hitting a "5" on the pain scale is better than I have ever been in years - so we won't likely be changing from a direct infusion of Dilaudid.

What I have learned the most, which I am very surprised about, is that I am truly taking a significant amount of opiates. I would have thought that recreational purposes would have exceeded what I am prescribed or have tried. It is encouraging to hear this, as I am happy with my doctors attempt to help. Yet, it is also disappointing as it seems like I have hit the ceiling.

I think I may try to do the following though, based on what you have written:
1) At the start of the next hour, leave the basal rates at 6mg/Hr slowly delivering it in the background. Then, change the bolus rate (the instant amount) from 1mg per 10 minutes (6mg an hour) to an instant 6mg. Hence, pushing all of the bolus at once. I will see if this has any effect.
2) If #1 doesn't work, on the next hour, I will set the bolus rate to 0, and basal 10 (down from 12) to titrate up and see if it has any impact for the corresponding hour.

You could try Ketamine. http://www.ncbi.nlm.nih.gov/pubmed/25377395

Iirc it could help resetting your tolerance too

Ketamine is great advice, actually.

Though, according to someone close to me, patients either love it or hate it. Each person reacts very differently to it. Some find it unbearable, I'm guessing because of its psychological side effect aspects.

Thanks for the advice on Ketamine. I have never taken it, but as I mentioned with "Option C" above, I am apprehensive to approach the doctor on another drug while achieving the amount of success I have in getting to a "5" on the pain scale. Yet, it is still difficult to be content as a "5" all the time, and thats why I am here looking for other options.

If I get to the point where a "5" becomes unbearable, I will suggest that drug to my Doctor and see what he has to say.

I have been on-and-off addicted to opiates ranging from heroin to fentanyl to methadone (maintenance , but body still dependent) for the past 22 years.

{... snip ...}

Anyway, good luck. Maybe someone who does have experience with doses like yours will chime in. Otherwise I'm sorry, but I can't help very much.
F

Thank you for your reply. It is very helpful, as I am finding it reassuring that I am already on large doses that the recreational community hasn't really pushed past. I also agree with you, regarding the Fentanyl; I strongly believe that the SUBSYS 1200 MCG (two 600 mcg sprays) really changed the ballgame for me to receive any euphoric feelings from Opiates. From a recreational perspective, I would strongly advise others to stay away from Fentanyl until other opiates have failed them. Else the primary goal of reaching any euphoric feelings will be directly compromised.

:\ Hey Joe...If you are in pain management with a good team of doctors who recognize the intensity of your physical pain, you are MOST fortunate. Having said that, I can only imagine the suffering (cancer?) you endure.

{...snip...}

So, basically I suffer 24/7. I was hospitalized with partial bowel obstruction recently...surgery may still become necessary.

I'm just guessing, so please don't take offense...With a port-a-cath, are your issues GI related? I ask only because I deeply empathize. I am so very sorry that you are unable to find relief with such a high level of meds. Perhaps absorption issues? This may be a dumb question, but have you had genetic testing done to confirm your metabolism/absorption of pain meds? Just some shots in the dark, in hopes of helping you.

Sending positive vibes to you.

I already suffer from a GI ailment called Gastroparesis, whereas my GI track suffers from areas of paralysis. I am on a bunch of GI related drugs to help the general bowel movements, and I couldn't imagine living without them. My "pill platter" consists of 22 different types of medicines that I take on a daily basis. For bowel issues, I take (and suggest):

- Tamsulosin (Flowmax - helps my neurogenic bladder disease)
- Ondansetron (16mg) Sublingual - helps with the nausea
- Docusate Sodium (100mg) - I take two (200mg) three times a day
- Baclofen 10mg (mostly for my tremors and involuntary muscle spasms) - but helps the GI Track too
- Reglan - I take this 30 minutes before each meal. Helps with nausea and digestive purposes.
- Metoclopramide (10mg) - ( I take this when the Reglan doesn't work - it is a shot and really works)
- 3 capsules of over the counter stool softeners.

All of this is almost a meal within itself, yet it really keeps me from having a GI Blockage. That, and my apatite is quite small these days. I typically eat soft foods and protein drinks.

There is no upper limit to opiate tolerance.
But after a certain level, you can no more get the same effect ( euphora/pain relief) , the effect is shorter , the side effects stronger.
You are already over this limit.

That is what seems to be the general consensus here for the Euphoric feeling. While I can continue increasing dosage for some pain relief (the dosage amounts seems to be exponential though for the return), the "high" feeling is long gone for normal dosages.

maybe you should try ultra low dose naltrexone, i've made a thread on it : in pharmacology sub-section : Drugs Microdosing - Share your knowledges and experiences

How have you been in hospice care for over 18 months? Isn't hospice for when Doctors decide you have less than 6 months to live?

Not trying to be callous, it will just help us to understand what kind of treatment you're in. Also maybe, why do you hurt so much?

I have only been on Hospice for the past month. Prior to that, my Internal Medicine doctor was the one who prescribed all of the opiate medicines to me. For insurance purposes to get the Abstral medicine, I did have to see a Pain Management doctor who wrote a letter of recommendation. Yet, that pain management doctor actually refused to take me on as a patient due to my overall illness and complexities. Hence, he would only write the recommendation for my main doctor, which Blue Cross and Blue Shield required.

To get on hospice, you are correct about the 6 months estimate. My doctor has to sign a document with his overall estimate based on my ailment. Yet, it is not unusual (according to Hospice folks) to have patients go 3 terms (6+6+6). There are special rules that come into play after the first renewal, whereas a separate / 3rd party nurse practitioner has to come and see me every 30 days.

My terminal illness is a rare disease, called Multiple System Atrophy. It is a non-curable and degenerative neurogenic disease, that impacts my nerve and muscular system. This disease resides in the parkinsonian family.

Thanks,
Joe
 
Where are you located? Is cannabis an option? It's excellent for nerve pain and should increase the effectiveness of the opioids.
 
I'm sorry to hear about your terminal illness--but I am very happy that you seem to have doctors who are willing to give you high doses or whatever you need in order to manage your pain. I know some people have a hard time getting enough pain meds prescribed, and i always think how awful that must be for the patient

I think you have a good idea in manipulating the dilaudid (hydromorphone) dosage/frequency. I hope that helps somewhat.
 
Hello again Joe...First, thank you so much for sharing your information with us. I am not familiar with MSA, so I tried to obtain some info after reading your last post. How old are you? I'm 54. It's only fair that I share my age, if I ask yours, huh?

Do you have a pacemaker? a surgically implanted pump to deliver meds, it seems? Do you experience respiratory issues or labored breathing? As most opiates can affect your respiration, that would be a concern with increased doses.

I've never gotten my pain level down to a 5, but am told that a 50% reduction in pain is optimistic for CPPs. I know little about the hospice protocol. I take many of the GI bowel meds you mentioned, along with Linzess 290 daily since last hospital stay. I can relate to what you say about your disease, as mine is an enigma to those who have not endured its wrath.

I would never compare my situation to yours. I am heartened to hear that you have adequate insurance coverage and a competent medical team to meet your needs. That is RARE in today's environment. I have little to offer beyond my heartfelt concern for your well-being. This tangled web doctors weave, whether attempting to manage chronic pain or terminal illness, is difficult to navigate.

I often refer to my disease as cancer, without the hope of peace brought about by death. Right now, it's choking my bowels and my bladder. I can't eat, sleep or poop. I can't tolerate the pain meds offered to me. I fear the possibility of bowel resection, praying I can avoid a colostomy bag.

I could certainly understand if you are experiencing DEPRESSION, as the constant companion of pain, IME. I fight off the negative thoughts and feelings of disparity like a warrior. As you know, it's exhausting.

I hope you can find the answers you are seeking. We all care. I can provide my email, if you need someone to talk to. Take care!
 
Hello again Joe...First, thank you so much for sharing your information with us. I am not familiar with MSA, so I tried to obtain some info after reading your last post. How old are you? I'm 54. It's only fair that I share my age, if I ask yours, huh?

Do you have a pacemaker? a surgically implanted pump to deliver meds, it seems? Do you experience respiratory issues or labored breathing? As most opiates can affect your respiration, that would be a concern with increased doses.

I've never gotten my pain level down to a 5, but am told that a 50% reduction in pain is optimistic for CPPs. I know little about the hospice protocol. I take many of the GI bowel meds you mentioned, along with Linzess 290 daily since last hospital stay. I can relate to what you say about your disease, as mine is an enigma to those who have not endured its wrath.

I would never compare my situation to yours. I am heartened to hear that you have adequate insurance coverage and a competent medical team to meet your needs. That is RARE in today's environment. I have little to offer beyond my heartfelt concern for your well-being. This tangled web doctors weave, whether attempting to manage chronic pain or terminal illness, is difficult to navigate.

I often refer to my disease as cancer, without the hope of peace brought about by death. Right now, it's choking my bowels and my bladder. I can't eat, sleep or poop. I can't tolerate the pain meds offered to me. I fear the possibility of bowel resection, praying I can avoid a colostomy bag.

I could certainly understand if you are experiencing DEPRESSION, as the constant companion of pain, IME. I fight off the negative thoughts and feelings of disparity like a warrior. As you know, it's exhausting.

I hope you can find the answers you are seeking. We all care. I can provide my email, if you need someone to talk to. Take care!

I am very sorry to hear about your situation, as I can some-what relate due to the similar complications that are presented in mine. People have a difficult time understanding what I go through, as they don't understand the disease. With it, it has caused multiple sub-ailments. The treatment plan is systematic to each complication that arises. Since being diagnosed, I have developed or have been diagnosed with:

- Congestive Heart Failure
- Nerogenic Bladder Disease
- Gastroparesis
- Optic neuritis
- Chronic Venous insufficiency
- Neuromuscular dysfunction
- Sleep Apnea
- Gastro-esophageal reflux disease with esophagitis
- Autonomic Neuropathy
- Kidney Disease
- Spinal stenosis

I am 35 years old, with a wife and two younger children. I had a port-a-cath put in due to an issue where my veins would not allow for an IV. Everytime I went into the hospital, it was a nightmare. They would try in excess of 15 times, before they would just put a pick line in. Eventually, it got so bad that they just put the permanent port-a-cath. With this, I have an IV just directly go into my chest (via the port) and it goes straight into Jugular.

In regards to repository depression, I have read about that on the forum as well. Prior to messing with any of the medicines, I went out and picked up a Pusle Oximeter, reading my 02 stats. It is like the hospitals, where it hooks on my finger. I can do instant checks, or leave it on overnight with alarms. Further, I have had Hospice bring me an Oxygen machine (it is a large blue machine next to my bed).

I have always been a hard worker in life, and was able to achieve some career success. In which, I have had good insurance while working. I am medically retired now, receiving a stipend from UNUM and Social Security. With this, UNUM also holds my life insurance policies; they are obligated to pay until I reach retirement age of 65. Which, we all know I am trying to make it to the age of 36.

Depression can be a exhausting to both the physical and mental state. I am on Buspirone, and have Valium for instant anxiety or panic attacks. Overall, I think the Buspirone does a good job. Part of my issues is that my mind works faster than what my body can hold up. I use to have many hobbies, and now I sit in one spot 23 of the 24 hours of a day.

As mentioned, I was forced to medically retire. I have difficulties walking more than 20 feet and not passing out. I have lost 70 lbs (mostly muscle mass), and have involuntary muscle tremors. In reading what you wrote about yourself, I don't know how you are managing? My mother is elderly as well (82 - I was an oops baby), so I can understand your position there. Yet, trying to manage a career (I distinguish a difference between a "career" and "work") is unthinkable in my condition. Reading about yours, it seems extremely difficult? How do you do it?


I'm sorry to hear about your terminal illness--but I am very happy that you seem to have doctors who are willing to give you high doses or whatever you need in order to manage your pain. I know some people have a hard time getting enough pain meds prescribed, and i always think how awful that must be for the patient

I think you have a good idea in manipulating the dilaudid (hydromorphone) dosage/frequency. I hope that helps somewhat.

Thank you for your kind words. I was debating another person on another forum over the cost of medical care. In which, I had calculated that in my last position, I had paid more than $185k over the 10 year period I worked there. Hence, spending that much money I expect good health care. I could NOT imagine being in my condition and receiving sub-par care or medicine.

Honestly speaking, if I wasn't able to get the medicine I have now - suicide would have occurred a long time ago.

Anyhow, thanks for the general feedback and assistance.

Where are you located? Is cannabis an option? It's excellent for nerve pain and should increase the effectiveness of the opioids.

I have never tried pot. It is not legal in my state, but I know of a very reliable source to which I could get it from. I don't smoke, nor have I ever, so this has never been something I have considered. I know it can be taken in non-smoking formats (i.e. editable). What would you recommend that I take? Is marijuana something that is measured out to an amount or unit of measure like opiates are?

Thanks,
Joe
 
Hi there Joe, I feel for your pain buddy. I live in a fascist state that believes if u don't have cancer your shit out of luck. I have the back of an 80 year old (my doctors words not mine), GI problems (UC/IBD), cluster headaches & migraines, the list goes on and it's much to late to bore u with any more. Unfortunately I'm stuck with getting heroin and fentanyl patches I use IV to help with my pain because as I said living in my state and being age 24 all doctors I see tell me the only way they'd perscribe the medicine I need would be if I was dying. And I hope I don't offend by saying this, but it has actually put me in the position of hoping/preying I was. I know that I personally can IV an entire 7.5mg (100mcg) fentanyl patch which people tell me is either stupid or crazy. But I have so much pain I just want to feel better and feel something so that I know there is a difference between my normal misery. Fentanyl is definately a tolerance killer. But I tell you what I agree with moving your bolus dose up to 10 but he'll u could probably start at 15 and titrate from there. Honestly and I say this as a person who wanted to be a doctor to help people in pain (before living through my own of course) switching to good old morphine sulfate may be the best thing for your pain and for a good small amount of euphoria. Now I'm absolutely saying IV LIQUID, not pill form of course. But anywho I'm rambling on since I've run out of my medicine since 10pm and haven't had enough to take the pain away due to stretching out so I'm stuck wide awake in pain. If you need someone to talk to is be glad to help u out anyway possible, I'm very knowledgable about different opiate/opioids you could try and the doses as well as I love to just chat and have distractions from myself and the monotony of pain so let me know if your still awake. Id be more than happy knowing I could help someone be even a little more comfortable who was in so much pain in their last days.
Peace
 
I am a hospice/palliative care nurse and I actually have cared for patients that required higher doses of opioids than you are on currently so don't feel that you're completely alone in your situation. Most notably I had a 50 y/o female patient with severe gastroparesis and bowel necrosis. Before she passed we had her on a Hydromorphone PCA. She was alert and responsive with 125mg/hr continuous rate with a bolus of 15mg. After years of being in constant pain she cried when she finally reached a "0/10". Her usual pain rating at rest with the above dosage was a very tolerable 3/10. :)

How we typically titrate continuous infusions is to calculate the entire amount utilized in a 24hr timeframe then divide by 24 to get the new hourly rate if pain is not well managed. If you're using all 6 of your bolus doses per hour then most likely your hourly rate needs to be increased by a fair amount.

My personal experience with Hydromorphone IV was 25mg doses every 4 hours for chronic pain. The rush/euphoria of higher doses spaced out throughout the day is not usually attainable with continuous dosing unfortunately. The best way to potentiate the dosage that I've found personally and in practice is IV Phenergan. Ondansetron (Zofran) and Metoclopramide (Reglan) do not work the same way. Dosage would be 6.25-12.5mg every 4hrs prn nausea/vomiting/potentiation (be can be dosed even 25-50mg at a time if lower doses ineffective, just be cautious of side effects of antihistamines, lowest dose should be used that works). IV Benadryl (Diphenhydramine) can also help 12.5-50mg/dose. You should have no problem getting these in injectable vials/ampoules from your doctor/pharmacy. You can say they are for nausea and itching respectively if you do not want to ask for them for potentiation.

Good luck and let us know how you're doing!
 
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