Done with meds, went to ER this week

[luv2bmomjen]

Hi all,

I haven't posted because I have been in bed since Tuesday.  I started having some pain on Tuesday around noon that quickly became unmanageable.  It got worse and worse until about 7:00 when I could no longer walk or talk and was getting no relief from anything I tried.  My husband took me to the ER.  I was able to get a little relief by the THIRD dose of Dilaudid.  Had blood work, Cat Scan, and urine testing.  I was told that I was on a HIGH dose of medication so they would not be able to take away my pain.  NO REALLY???  I just needed relief.  My body was in shock.  The findings when I finally got to go home Yesterday were that I tapered too quickly.  Because of dropping the Oxycontin on Saturday of last week at the 72 hour mark my intestines stopped working.  That in turn made my pelvic congestion syndrome kick in at worse than ever pain levels.  Worse than labor!  I have never felt pain like this!  They said that even though I wasn't "feeling" w/d symptoms my body is still reacting inside and my intestines shut down because of it.  So they gave me something through the IV to get them working again.  The Dilaudid gave me a massive headache and had worn off by the time I got home.  
I told them I would not let them give me any drugs unless they promised only to give me enough to make the pain manageable and stop my body from being in shock.  I also said do not prescribe me any pain meds.  They stuck to what I asked.  I also stuck to my lower dose and did not add back my Oxycontin.  So far the pain is definitely there and hurts but I can make it.  I talked to my pain doctor who asked me to stay at the dose I'm at or add some if needed and come in on Monday once I have my energy back.  They are going to change my tapper a little I think.  I had planned to take a step down again Saturday but I am not suppose to according to my doctor.  But I'm afraid to ask my husband to let me not taper.  I know he will understand because he saw how much pain I was in but I feel like I'm failing both of us if I don't keep tapering.  I don't know what to do.  I thought I was doing so well and now I'm questioning if I can actually get off all the meds.  I don't know if my Chronic pain level is so high that I will ever be able to do it.  There is only one very risky surgery for Pelvic Congestion that I will be seeing a doctor about beginning of March.  I'm so scared to do a risky surgery with three little children.  They were so scared this week.  They thought they were going to loose me ;-((((  
I'm scared and wondering if I will ever get off the pills.  I want it SO bad but I can't spend my life in and out of the ER every time my PCS kicks in.  
I'm so sad and feel like a failure.  At least I stuck to the lower dose.  I have not moved backwards at all!

[luv2bmomjen]

I'm waiting another week at my current tapered dose for another week!  I need some time to let me body recuperate after that ER trip.  I have not had pain for a few days so I think my body is adjusting to the new dosage now.  I'm not too worried about the next step mostly because it is at night and she is allowing me 1/2 an Oxycodone if needed to get through that first week or so.  So to be clear next Saturday I will step down from 30mg to 20mg of OxContin on that last night dose.  I have been off my daytime dose for two weeks.  After that I will step down to 10mg Contin and then off!  Should keep me out of the ER this time.  I HOPE and PRAY.  So after this month of slowly coming off the OxyContin I will just be down to 5 little Oxycodone.  That seems so small to me!!!!  I looked back in my med records and I have not been on that low of a dosage of oxy since 2008.  6 years!!!  It has taken me one month and 5 days to get to 45mg less of Oxy.  By a month from now I will be 70mg less A DAY, in just two months!  I'm obviously avoiding all my other meds and concentrating on how far I have come on the Narcotics.  It helps me to feel better about what I am doing and see that it is in fact working.  Despite the horrible ER visit.  But that night put fear in me enough to get into the surgeries faster to get tho pain under control so I can get off all of it!!!
I also plan to get my butt out of bed and over to Yoga  this week.  I NEED it so bad.  LIke 3-4 times a week.  It would give me a good reason to get off my couch and get toned up.  I need it!!!!!!  Summer is coming after all  and we have a place on the lake.  Got to be able to pull off the old bikini lol lol Since a still can after three babies ;-)))))))))

[lild713]

I had a seizures and went ER other day and it was crazy, also I told them i didn't want to be here since I don't have insurance, also can I just ignore the bills? I have no job income or anything how can I even pay for this crap, also I've told them I'm okay and I signed papers and let them let me leave.

[luv2bmomjen]

Thanks and yes it feels very much like a puzzle and everyday a new piece to deal with, enjoy, or battle.  I will get there!!!

[clean_in_ks]

Did you already see the specialist?  And are you having the embolization procedure?  I've read a lot about it...have a lot of problems myself.
I see it is VERY SUCCESSFUL...and is done in an outpatient setting...suppose to be fairly non-invasive??

If you can finally get to the bottom of the pain....you should do VERY WELL with getting off the rest of your meds.  Your dr and your hubby, as I said above, are wonderful support.....sounds like the puzzle pieces are finally coming together, huh?  Good for YOU!!

[vicki595]

Your doctor sounds so much like mine! I'm happy for you because it makes so much difference to have medical support along with support at home. That was my situation, too and believe me, we are very, very fortunate.
I tapered also. I had quit MANY times prior and it kicked my butt so, with help, I tapered over 9 months.  I wish I had been to a therapist or something during the taper but I was stubborn!  I finally got help with the mental addiction after I came to MH and I haven't looked back...so far!

Keep this up...you'll get there!

[luv2bmomjen]

Oh my mistake. I tapered off my daytime dose of OxyContin and that is what put me in the ER last week.  I still take a night time dose,  they told me not to mess with the night time dose at first to get my sleep. So my next step is to taper off the Night time Oxycontin.  THEN, I will be completely free of the OxyContin.  But this time instead of putting Oxycodone in place we are going to go to 20mg then 10mg over night dose until I don't need it anymore. Should be a gentle taper this time.  Then I won't have to add in Oxycodone either so I have less of that to taper from.  Hope that all makes since.  They wanted to add in 5 more Oxycodone in place of the night dose and then I would be on 10 Oxycodone a day.  Yuck so this is a much better option.
Yes they are helping me with all the meds BUT one at a time and they are going to stop my taper once the pain gets too bad.  Then I am having a vein surgery for my Pelvic Congestion.  They have to treat what is causing the pain or I'll never get off the meds.  

[clean_in_ks]

You have GREAT support.  An understanding dr is invaluable.

You said "I hope my next Oxycontin taper will be easier than my last one"

I'm sorry if I misunderstood, but I thought you were OFF the oxycontin and trying to get off oxycodone, tramadol, soma, ambien and valium?

After your ER visit, I thought you said you were gonna stay on the oxycodone at the same dose for a week, then start tapering from that.  And then is your dr going to help you with all the other addicitive meds?

Sorry if I got it wrong...I've been trying to follow but your oxycontin statement up above thru me....so maybe I just don't get it...sorry~

[luv2bmomjen]

My doctor is the best one I have had in 6 years!  She told me I can call her AT HOME day or night. She tells me I am doing awesome and how proud she is and hugs me.  She is a rare find for sure!!!
My husband also has been great.  He came with me yesterday and asked a lot of questions, showed concern, and the doctor told him how important he is in the process as well.  No matter what my mind is made up this time so it is nothing like any other time I have tried a taper.  I am honestly not temped at all to take more.  I want so badly to be off that it doesn't cross my mind.  I hope my next Oxycontin taper will be easier than my last one.  

[Pat1956100]

I'm glad you went to the doctor and make sure you listen to her.  Slow and steady really does win this race.  Tapering is hard but it really helps when you have a good doctor on board and it sounds like you do.

[luv2bmomjen]

Went well at dr.'s.  She is slowing my taper and wants me to wait another week to change anything.  

[luv2bmomjen]

Thanks wish I could do a shake or something but I have Celiac Disease so I have a very limited diet as it is.  Last night I was able to eat some chicken and noodles and veggies from a Pho Vy place.  I did good with that as it was fairly plain and it had protein so that is also good.  

Going to see my pain doctor today.  My husband is coming along so it will be good to have him there to listen and understand everything going on in my body.

[odaat1]

I have been taking Ensure,(High Protein)  because I have no appetite.  I am so sorry you are experiencing these challenges, but glad to know your family is behind you...

[luv2bmomjen]

Sorry don't think I'm very clear.  I am not going back to my prescribed dose.  NO WAY!  I am just staying exactly where I was on my taper until I see the doctor and they let me know what I should or if I should change my taper plan.  The only mistake I made was to step off the Oxycontin last week instead of just down on my Oxycodone like planned.  I thought It would be fine because I replaced the 30mg Oxycontin with 25mg of Oxycodone so not much of a drop but my body didn't like stepping off the time release apparently.  But I am still off the Oxycontin and that feels Great!!!!  I am still down and have not stepped up since I started the taper.  My week off just means I'm not tapering down any further this week to give my body more time to adjust.  

[IBKleen]

I am glad you are sticking to the taper to this point but taking a week off and going back to the prescribed dose will throw you off. You need a plan, preferably from a doctor, and you need to stick to it. Slow and steady is the way to go.

[luv2bmomjen]

Yes sticking to the taper but taking this week off meaning not moving down to get myself adjusted. Yes I told the ER about all my meds. And Yes I told my doctor but I'm taking exactly what they prescribed now so they understand.

[clean_in_ks]

I'm truly sorry for your ER experience and the troubles you've had since quitting the oxycontin.  You said the hospital staff said they didn't think they could help due to the high amounts of meds you are on....so you must have been honest with them about still being on oxycodone, tramadol, soma, valium and ambien, yes?  Those ARE a lot of addictive meds and they all affect the opiate receptors in our guts.  I'm glad you are home and your tummy is working again....are you going to stick to the taper plan your dr is recommending?  And did you ever tell your dr the true amounts of tramadol and soma you are on?

[luv2bmomjen]

Thank you all. I will try again by noon today to eat maybe a bagel or some rice. I feel less scared now that I know I can eat without my intestines stopping and the pain getting so bad again.
I may have gotten ahead of myself thinking I could get completely off :-(. I really really want to get as low as possible and at least not need them daily.

[IBKleen]

I understand your wanting to get off of the pain meds. Honestly I do but what will you do for pain mngt once you do?

I am so sorry you are going through all of this. I have never heard of anyone having such an intense reaction. Take it slow and be good to yourself while you heal.

[vicki595]

You're going to feel like crap until your diet improves...it goes hand in hand. It's worse for your gut to go without nutritious food...so try. Last night was better with soup and potato...you need that balance...The liquid intake is good but you need food honey...

Fats are hard to digest so stick with cereals, soups, brown rice, protein shakes...I think you'll feel a lot better.  xo

[luv2bmomjen]

I finally was able to get more up and around lat night.  I also ate a bowl of chicken noodle soup and a baked potato last night.  I have a bit more energy this morning but every time I get up and going I get a quick reminder from my body to lay back down.  

[luv2bmomjen]

Honestly no I'm not eating.  I too scared to.  I ate tuesday just before the pain started so…..  I had some crackers like 4 last night and a couple bites of steamed rice.  That's all Ive had.  Even that made me feel sick.  I'm not hungry AT ALL.  I am drinking a ton of pedialite, tea, water, and sprite.  

[vicki595]

I hope I could help...I do think you'll feel a lot better once you're over this week 's events. I know it's scary!  I often worry about people who CT or taper too quickly because this is one of the things that can happen...
Are you eating well and drinking plenty? You're going to need to baby your gut for awhile...

[luv2bmomjen]

Of course he wants me off but understands that I need to do what the doctors say is safe at this point.
Thank you for making me feel better. This week was very unexpected and very very scary.

[vicki595]

I'm inclined yo agree with your doctor: stay where you are on your dose and even go up if necessary. You have a painful condition and I know how you want to get off these things but realistically...you need them. Try to settle down right now and not think about down the road. It's great that you've decreased your dose this far! Once you're over this set back, you'll see how much better you feel!    But don't worry and don't think of it as a fail...you are absolutely doing your best.

Is your husband pushing you to taper off?