A much needed vent..

I really feel bad for you but you are so young to be on all those pain meds have you tried tramadol ?

Sorry to hear you are going through a tought time.

I guess I don't understand this whole pain clinic and being 18 thing...There aren't any laws with regards to being treated with controlled substances and being younger than 18 as this as obvious by your already being on Fentanyl and Oxycodone...You've just been going with your mom.

So, you could have made an appt. at any time with the pain clinic and go with your mom.

So, I'm not sure what the age has to do with any of this besides becoming a legal adult to now be in charge of your own medical records/plan.

If this is a Pediatrician that you have been seeing for all these years and was the one to put you on the Fentanyl patch...then it seems you should just try to reach and speak to him directly through phone or email and let him know of the confusion.

Many times email works better as they have a chance to read those after hours if needed. I would try calling your Pedatrician again tomorrow and maybe even make an appt. with him as if you are flexible with time, you can get seen fairly quickly as they leave appts. open for "emergencies" so to speak...

Let us know how it goes..

Liable for what? Your parents are "liable" for your care all the way up until 18...Just like in all your surgeries and all the pain meds you have taken up until now...they have signed all the paperwork that you will sign when you are 18. So I think this pain clinic is giving you some very strange information as you should have been able to go there with your mom and get treated for pain management.

I guess you can find out once you meet these new Drs. but this alone would be making me run the other direction from this place as it doesn't make any sense.

Thanks for sharing more, unfortunately the statement about your pain not being that bad is fair for him to think since you wanted to taper down from the Fentanyl so he thinks that if you can be without it then you are doing ok. I'm sure it confused him for you to request this so now he figures that you are seeing the pain clinic so you aren't his responsibility anymore.

I guess there is really not much you can do besides having your parents take you to the ER but that is only going to cause possible further issues with this new clinic but only you can decide.

Not sure where you live but are you sure that you have contacted every single Pain Management Dr. within an hours drive from you? The key is looking for the Drs themselves..not just a "pain clinic". My PM is located at a Spine Institute where my Neurosurgeon is located...So if I searched for pain clinics his name would have never come up.

And I've seen you mention this before, but what specific condition do you have that is terminal and what Dr. is telling you that you aren't expected to live past 30? No one can make that type of prediction that far out..

That's exactly what I was confused about also, but that's what they claimed. That's what they also told me in the hospital. This pain clinic is part of St. Francis Hospital (OSF), it's supposed to be one of the best pain clinics in the state so I for sure want to go to this one. So the age factor sucks for the meantime but I guess in the long run it'll be worth it..

The whole ordeal with the fentanyl patch, let me explain some more.. One day I was having increased pain levels and was about to go to the ER for it so my mom called my GP to let him know. He said to just stay home and he would write for a fentanyl patch. So my mom went and got the script and I put it on soon after, oblivious to what it really was. I didn't really feel any relief for hours(which I now understand why) so he also allowed me an extra oxy dose in the meantime. But when I woke up the next morning the relief was crazy! I had never woke up with such low pain levels.. So I continued on the patch. As time went on it became less and less effective. So, I began to research it and didn't like what I was finding. I personally felt as though this med should be left for a last resort and so I wanted off. Not to mention how everyone around me said I seemed to be in a fog and I would sleep for hours upon hours! I just wanted off of it! It wasn't fair of my doctor to put me on such a strong 24/7 med when I was just having a flare in pain! That's another reason why I felt it was necessary to go back to my old regimen. I guess the stigma of the patch just scared me..

And the terminal part comes into play with my arteries and my blood pressure. No matter my BP meds my blood pressure never goes down.. Plus, the mid-aortic syndrome is just so rare that not much is known about it besides the arteries being bad and needed reconstruxted(I've had this done on some but need more) and that most patients with this die before age 30 due to uncontrolled blood pressure problems. Not exactly sure what the blood pressure does but they said long term high blood pressure is what will most likely kill me.

When did you start the Fentanyl & when was the last patch on you? What kind of symptoms are you having? What kind of a taper did the dr have you do?


Susie

I started the fentanyl beginning of November if I'm thinking right.. My last patch was about 3 weeks ago.

Symptoms: insomnia, hot/cold chills, excessive sweating, horrible RLS, absolutely zero energy, diarrhea and nausea(only vomited once). Not to mention my pain is through the roof! :(

My taper was as follows:
50 mcg patch/15 mg oxycodone every 6 hours.
25 mcg patch for 3 days/same oxy.
12 mcg patch for 3 days/same oxy.
Fentanyl discontinued. 15mg oxy every 6 hours for 7 days.
10mg oxy every 6 hours for 7 days.
5mg oxy every 6 hours for 7 days.
Oxycodone discontinued.

Kayla,

That's confusing about the age 30 and uncontrolled BP.... ?? I am currently on three different BP medications.... despite this, my "average", at rest blood pressure is 155/105. Throughout the day, it spikes up to 180-200/120. This is my 8th year of working on my blood pressure issues - and I'm about to turn 40.

So... that doesn't make much sense? I can't even think of a doctor that would make such a prediction - such as you won't see 30 years old?? It would be one thing if you had a form of aggressive cancer or something.

Personally - I wouldn't want to go to a doctor that was predicting such a thing. While I believe in being realistic - I also believe that a positive mind-set is important to your health.

--Tina

Re: your pain medications....

I'm w/ SB.... this doesn't make much sense regarding the pain clinic.... being 18 and signing your pain contract... etc. I have an almost 18 year old that is dealing w/ migraines on top of other health issues.... and we've not encountered this issue at all?

I also can't believe the "taper over a month" thing.... ESPECIALLY w/ having high blood pressure.... ?? This is terrible for the body and system....

At this point, though... hopefully you'll quickly get over the worst of it - and it will be a learning experience.... especially when dealing w/ chronic pain.

Like I've stated, I didn't really understand the age barrier either but since my GP agreed to script my meds until I turned 18, I wasn't worried about it too much. Specifically because at the time I was only 3 months from being 18. The hospital managed my meds from September to end of November because I was an in-patient. Yes, 3 loooong months in the hospital.

I was stunned by the taper also! It was so fast & sudden. I can't believe it even happened but it has defenitly been a learning experience.

I'm gonna be honest here, I feel like you guys are like ganging up on me.. Like I'm lying or something. It's starting to get to me. :(

Also, I felt safe telling my MD at the hospital about me wanting to get off because she was the one who put me on everything! Lol, she's been with my since before the bypass every time I was in the hospital, which was often. That was a big reason why I told her.

I figured that as I've seen how supportive you are to so many people! And I'm shocked about it all too, that's why I came here to vent.. Lol.