Dilaudid dependence/addiction

[Sickparents]

I am a scared worn out Mom of a 29 year old daughter.  Almost 3 years ago she got sick from West Nile/ARDS and was given last rites.  She was on a vent and in the hospital for 2 1/2 months but survived.  Then was in. Rehab facility for 22 months learning how to talk and walk again.  She walked with a walker when she came home last fall and continued physical therapy and started walking in march without aides.  Through this whole process she has been on many narcotic but was sent home on 8 mg Dilaudid and 20 mg oxycodone every 4 hrs.  The doctor started weaning her down when she got home from the rehab hospital.  I have been in charge of giving her all her meds each hour.  She also takes Xanax 1mg four times a day and Cymbalta 90 mg every day.  She was on Lyrica but she was weaned off that as well as Neurontin.  She was in adrenal failure and on Cortef for a year but a year ago thay came back so off that.  Her schedule up until Friday was Dilaudid 8mg and Oxycodone 5 mg for one dose and 2.5 for the other 5 doses.  When I went to fill the weeks up they were 30 short.  I have no idea how because the minute I get them they go right into a safe.  I am the only one with the combination.  The key is hid at my husbands office.  We went to the doctors office and she is gone for a week.  The PA we saw wasn't familiar with her story so she said to cut down to 4 mg from the 8 mg and that will be enough until her Dr is back.  She sees a therapist to do EMDR for PSTD drom this 3 years of really hell. She says it's too big a cut cause she's taken too long.  My daughter has the worst withdrawals.  Her blood pressures are anywhere from 77/54 to 95/58.  Blood sugars are in the 60's so now I'm worried her adrenals can't take it.  The doctor had talked about doing a medical. Detox but said she wasn't strong enough yet to do that.  I called yesterday to get her into a pain management doctor.  Can get in Wed not that it helps a lot but at least it's sooner that when her doctor comes back.  To top it all of she's had a mrsa staff infection for the last three weeks and has been on a ton of antibiotics.  It was the hospital kind. We knew she had to get off these being on them so long but the cuts from oxy went so well.  If I only knew what happened to the 30 pills.  Never had a problem before!,  I am worried about such low blood pressures as they were low with ARDS and she almost died.  Am I just being paranoid and going off narcotics never killed anyone like the PA said?

[lulu747]

I just sighed audibly with relief when I read this.  I am so glad you found someone understanding to help.  Your daughter has been through so much and I empathize so deeply being someone who was extremely ill and just desperately needed help.  I had my mom as an advocate but still, early on I blindly took whatever pill they prescribed to me because I just wanted TO GET BETTER.  Several of these drugs nearly killed me.  My medical journey has been long and arduous- and I would not have made it through without my parents.  We learned a long the way to question EVERYTHING to do research and weigh pros and cons and if we didn't feel right about something to get a second or sometimes even third opinion.
I am a 36 year old woman- but when I am super sick it is hard to act rationally, or absorb medical advice and that is why it is SO important to have a strong advocate.  My mother and now my partner are both awesome advocates.  Your daughter is blessed to have you.

I wish you all peace and a journey towards healing.  You are an AWESOME parent.
Keep us posted...
Lu

[Sickparents]

I should have said meds that should have been tapered correctly but weren't.  Which one to taper first....One at a time instead of both.  Plus it always depends on the pts physical condition....not everyone can be treated the same.....Finally it all makes sense.

[Sickparents]

My husband and I went with her yesterday to see a neuropsych and he got her into a Pain Management doctor that is also a Physiatrist (doctor of physical rehab).  We feel like we are finally getting some help.  Some guidance and direction to help her.  Thru her journey with ARDS she was put on a lot of pains meds that should have been tapered but weren't ..  He said General practice drs kmow how to prescribe but don't know how to taper correctly.  The Dilaudid cut was to drastic and with her health still not at 100% it was not good.  Of course we told him why it had to be cut.  He said he has had trouble with Pharmacies shorting patients frequently and it's always pts word against the Pharmacy.  Once you walk out the door and there short to put it bluntly your screwed.  This new doctor had her sign a contract and will do urine screens every month.  He said its to protect himself that pts aren't selling their scripts.  Plus to make sure they aren't dr shopping and that there are meds in the system not ordered.  He said it will take a couple months to cut but it will get done.  She was put on Xanax too 3 years ago and he hates it and says its hard to get off of.....He will start on it next...A slow taper also because of the brain damage and increase risk of seizures.  The only med he wanted to keep her on was the Cymbalta because with her post-ARDS/West Nile it helps with the post-traumatic stress and nerve pain.   He will see her every month and the nurse seemed very knowledgeable about addiction/dependence/withdrawl.  It gives my daughter a Goal and a feeling like she's not in limbo.  He said to put her into an inpatient treatment to get her off all of them would be devastating since she spent over 2 years in hospitals.  We feel determined!!

[Czezcky]

It makes you wonder how all those pills get into the black market. Someone running a side business at the pharmacy?

[vicki595]

It's not fair to say opiate detox NEVER killed anyone. There are some that have died due to the symptoms being severe and no medical intervention. I doubt that would happen to your daughter because you're always with her.

If you cut the Dilaudid dose as you've  described...you will be cutting her dose 50% every time you dose her.  She'll definitely feel that and she should not have to get sick just to wean down on her meds.  There are ways around this so try speaking to the PA or doctor about a better solution.

Being 30 short is rough. Were you alone when you picked up the RX ?

[lulu747]

PS.
I did EMDR for my PTSD from both medical trauma and the abuse I suffered in my marriage while I was sick.  The skills she's learned there can help her through this difficult time.  Combined with the Clonidine- it may be okay.  I will pray for her and for you- I know my Mom and Dad suffered greatly watching me suffer and my heart goes out to you....
Lu

[lulu747]

Holy Crap do I feel for you.

I was on pretty much the exact same combo of drugs as your daughter- with prednisone thrown into the mix (I have Crohn's Disease, RA and sever endometriosis- stage 4)
I have gone through adrenal crashes more than once in my life.  Awful.  Feels like you are dying.
I think you should take her to the hospital.  Honestly, it's not like she could possibly be drug seeking- though they may accuse you.
This happened to me once with my benzo at the pharmacy.  I was too scared to do anything about it so I just reduced my dosage for a week or so until my refill was up. But I was healthy at the time...So I could handle a little suffering.  Your daughter does not deserve to suffer more than she already is.
Your daughter could probably handle the cut with the opiates if she got some Clonidine (a BP med commonly used in opiate detox)  GIven her blood pressure issues (which I shared during detox) this will make her more comfortable.  I'm not gonna lie it will still be hard.

This makes me really angry and I empathize with you more than I can say.  At the end though, all that matters is your daughter is comfortable.  I would take all her records and go to the ER.  See what they say.  Is someone filling in for her PCP?

I'm sorry I wish I had more to offer.  I send my support.
Please keep us posted...
Lu

[Sickparents]

There was a mix up in the new insurance when she got on a Obamacare plan so it needed prior authorization.  They filled it but the doctors office had to do some work on it.  The doctors office got the authorization 5 days after the refill so it was screwed up for the next fill.  They said it looked like it was five days early when it really wasn't but they would fill it and have the doctors office fill it again.  I think that's where the mix up was because the 5 days short is 30 pills but of course the pharmacy says they do a count and there not off.  They use those big machines so it's really run on what they type in.  My pharmacist friend said they never do a count at the end like they use to do with bottles. You type a number in and two people are suppose to count but they didn't that day because of the confusion with insurance.  I honestly think they typed in 150 instead of 180 but they are admitting no fault.  All I know is I put them in a safe the minute I get home.  No one has access to them but me.  No one!!!  No one knows the code and the key is not even in this house. We offered a drug screen but I suppose that made us look guilty.  I don't know...It was my fault for not checking.

[Jinx_777]

as far as the pills missing,,, i have heard many stories from people who noticed their scripts short every month.  they even got to the point where they would open and count them right there at the pharmacy counter before leaving.  pharm techs can be addicts too, but taking 30 is really bold.  i have noticed being short 1-3 before, but can't imagine 30.  
they know it is your word against theirs and in the end the doc will believe them first.  from now on, open the container right there in front of them and count them.  
they likely will not give her an early refill so try and use them as sparingly as possible.  30 pills gone is 1 a day.  so sorry this has happened

[Jtb12]

I also want to add then when I was in the hospital for my surgeries I had to stay in icu because of my blood pressure and they wouldn't give me any pain medication until my blood pressure went up,  and it did but as soon as I took a pain pill it dropped back down.  

[Jtb12]

So sorry to hear about your daughter.  She was taken lyrica and gabapentin ?  Because they are almost like the same drug.  I was taken the gapapentin but I was so tired all day long and switched to lyrica.  Those pills you can't just stop taking. It can be very dangerous.   I also have low blood pressure and I was taken 15mg of oxycodone 5 a day. When I tried to stop my blood pressure dropped extremely low and I passed out.   I was unable to cut down my doses on my own  even when my dr gave me a tapper plan but I had another surgery and I was back up on my dose.  Also taken pain meds can also make your blood pressure lower.  Just like being sick if you have normally low Bp nowhere else for it to go but lower.  I ended up putting myself into rehab which they then sent me to the hospital detox facility since my blood pressure was low. Just as a precaution.   I would really talk to her dr and voice your concerns and even get a second opinion.  Best of luck.    I also had to use a walker ect and I'm still not walking the best and hunched over. I'm 33. I'm 15 days clean off the pain meds and even tho I'm still in pain I honestly feel so much better and I'm just at the start of the journey