Connect
← Return to Need help! Depression and anxiety
Discussion
Need help! Depression and anxiety
Depression & Anxiety | Last Active: Jan 20 4:09pm | Replies (227)Comment receiving replies
Hi all! I have been following this discussion with interest. My wife was on a cocktail of medications during her entire 14 year journey with her brain cancer, which was accompanied by chronic pain, sky-high anxiety, and a multitude of other symptoms. Drugs came and went in that regimen, Dosages went up and down. Combinations were attempted, used, and often discarded. With each person and their metabolism being unique it's not always perfect, especially at first. Plus I learned it can take quite awhile for some drugs to achieve a therapeutic level in the blood stream. One of our sacrosanct rules was that we would never alter a dose of her medication without first talking with her doctors and nurses. Perhaps some of this was due to the complexity of her multiple drugs, perhaps some of it was due to her anxiety, but most definitely the vast majority was because we knew the doctors, as a team, were far more knowledgeable on her drugs, their interactions, etc. than we could ever hope to be. If we thought a dosage could be, or needed to be, adjusted we always asked first. Plus if we felt one of her docs was out of the loop or over their head, we queried all her other doctors and nurses for their opinions. We never, ever acted alone or as our own doctors. Plus we can study what we can about our drugs, but still, at least in my case, I know I am not an RN, NP, MD, or PharmD and I don't have access to the same volume of information they do.
Someone mentioned pain pumps and I have to say I do not believe there is one chance in a hundred million billion anyone will ever give out pain pumps for basic home use. I saw them in action in many hospital settings over the years and they needed constant monitoring, incessant maintenance, adjustments, and at times were prone to failures of a variety or types.
As to the new regulations regarding opioids, the abuse numbers of just prescription opioids is astounding, affecting every corner of America, and not always the areas where you might think. It is truly an epidemic in our country and has led far too many onto a life of desperation and loss. No matter who we view as at fault, it is out of control so there are many avenues being pursued to attempt to get a handle on this. And it is not just deaths, but the gigantic increases in ER visits for Rx overdoses, family traumas, costs to our society in general, etc.
Whether we might view it as right or wrong, actions are being taken at points in the stream where chokeholds and reviews can be applied. Yes, they are a PITA at times. I know it was a real hassle when it changed so I could only get my wife's opioid Rx's when she was down to one day's dose, but I understood why. That was actually one of the nicest benefits of home hospice that her Rx's were delivered to us. Also Fentanyl is do dang powerful it is highly sought after for a lot of wrong reasons. Even when my wife was in home hospice I had to carefully account for each patch, pill, and dose and how I disposed of the used patches, oral syringes, etc. was dictated and very specific. There have been cases in our county of people sorting through hospital trash to find used Fentanyl patches to be licked! I was also instructed to be sure to remove every single piece of identifying information before I discarded any pill bottle, pharmacy bag, or bag tag into the garbage stream.
It is a different world out there now and Dr. Welby left the building a long time ago. Yes, much of this affects those of us dealing with chronic pain, but it unfortunately is our new reality.
Just my two cents plain.
Replies to "Hi all! I have been following this discussion with interest. My wife was on a cocktail..."
Hi Indiana Scott, May I first say that I am sorry for the situation you had to endure with your wife. I am glad you were there for her throughout her years of need.
I understand a lot of what you have said in your "two cents worth", especially when seen from your perspective.
However, I just wanted you to understand a couple of things from someone that is experiencing what some pain doctors, as well as The Neuroscience Center call "The Most Painful Thing In The World". I suffer from Complex Regional Pain Syndrome (CRPS), for which there is no cure. Though not deadly itself, I can assure you that there have been times that I have wanted to die, the pain was so bad. I know that I am not the only one either.
I was the one that had mentioned the pain pump earlier. I know the pain pump that you have seen is the setup. at the hospitals that is on a pole & constantly beeping and sounding off and really noisy. I am sorry to tell you that there is more than "one chance in a hundred million billion", because pain pumps are already available for home use. They are different than the ones that you see in the hospital. They are small units a little smaller than an iPad mini. A cartridge of the medicine goes into the unit and it is all contained in a small pouch. The allowable dosage is already preset within the unit and it secure by both codes and a lock to the pouch itself if needed.
I made use of one for my husband as we chose to have him at home in the final stage of colon cancer. This may or may not be seen as "basic" depending who you are and how you look at it. I do not believe that everyone should be given a pump. I do believe that there are cases beyond EOL care for cancer patients only. I am on the maximum dosages for ALL of the medications that I am on. This includes all medications beyond just narcotics & opiates. I just finished going through the list again with my doctor. There is no where to go from here to manage my pain as it continues to spread in my body. The only option, if it was available, would be a pump which would actually allow me to lower the dosages on my medications, since they are much more effective when given directly into the bloodstream.
I agree that something has to be done to address the current situation that has become what appears to be an epidemic.
However, I am talking beyond the hassle of having to wait to get your wife's opioid Rx's when she was down to one day's dose.
I have to do that as well, as many others. But I am talking about doctors and/or insurance companies denying you medication at all !!
That is why the NOUGG came up with the Guideline and made it clear that the Guideline was/is NOT intended to be used as a Policy or Standard of Practice. They knew that there is and will always be cases that do not "fit" into the Guidelines. There is a need to for some discretion. You cannot punish those who are in need and use the drugs properly by denying them their drugs because of those who don't! I have already been on the verge of suicide because of the pain that I endure from this condition. I also believe that there are many more like me who actually were denied and were forced to go to the street to buy whatever drugs they could get to help ease their pain or maybe to take their life in order to get away from the pain and not have to endure using the streets as their pharmacy!
@overwhelmed, I can certainly understand your pain. i have previously mention that I have Thoracic Outlet syndrome. I had surgery to repair this hideous illness. I my case it is hereditary and surgery was the only soloution. Unfortunately as I have previously mentioned this surgery did not work and was left with the CRPS you referred to. I am one of those who do not fit with these guidlines. Not to complain but my pain was excruciating last night, I slept with 4 ice bags and could not wait for my 1 am alarm to go off for my oxymorphone dose. i am going to beg my doctor not to drop my medication level this month due to the new "guidelines". I cant type anymore because I hurt. Hope to communicate soon.
Connect
I've been taking Morphine sulfate for a few years, and was up to 90mg daily. I weaned off it, with the pain specialist's instructions, but after being off for 3 weeks, I was in too much pain, so I started back on the morphine sulfate, per doctor's instructions. My pcp screwed up the last prescription, and wrote it for 1per day instead of 2, so now I'm sitting in the clinic, waiting for someone to figure it out. My pcp isn't in today. I only have 2 days worth of pills left, so I hope they'll be able to get me going.