VENT

Hey all,

*** Warning - long post... sorry.

Saw my PM today..... and I just want to pull my hair out.

Very brief background - The office has about 10 PM docs and they train other doctors specializing in pain management. I've seen my own PM for about 4 years now and had a VERY trusting, good relationship w/ him. I've been on my CP journey for a LONG time; have been on every med known to man; have had the pain pump trial....but am holding off on that; etc.

Ok.... so I found out last month my PM is leaving (has a sick child). He transferred my care to one of his partners, a woman, who I've seen on occasion and she seemed nice enough.

Still, though, when you have an established relationship w/ a doctor - I was still really bummed out my doc leaving. Last night, I had extreme anxiety about see the new doc.... trying to communicate my needs to her.... etc. I finally had what I was going to say to her worked out... and off I went to my appointment.

I am waiting in the office, and in walks a VERY young guy. Great. First visit w/ the "new" doc - and she sends in a doc that is being trained. This guy "says" he reviewed my chart (it's all computerized).... but he didn't know a darn thing about me. So - try explaining a 4 year history in 3 minutes. Not easy.

I tried to say I've been on all the meds.... that I had found a med combo that made me "stable".... but that we had switched insurances in October and the new insurance wouldn't cover the main med that was working. I told him that I had had the "intrathecal pain pump trial", which was successful, but I got meningitis from it and was holding off on that for as long as possible.

He didn't know the term "intrathecal" pain pump. He said "you mean, the spinal cord stimulator?".... ummmm, no. The "pain pump"? (I was trying really hard to not be snarky, I swear). He's like - oh, ok. I'm sorry, am I wrong to think even a doctor in training should know what the heck an intrathecal pain pump is???????

So - his exact words were - "So, what do you want to do?". Fine - he wants my opinion.... I gave it. I said, I've been on all meds known to man, but I HAVE to keep trying to find something that works. My cardiologist is on my case to get my pain under control to lower my blood pressure. This is affecting my quality of life. I said all of these things. So, I said the one med I've not been on is Opana. Maybe trying the Opana IR... seeing if it works.... and then, if it does, switching the the Opana ER. So - out he goes to go "consult" w/ my PM.

Long story short.... I ended up having my "new" PM doc come in to see me. Per her (and, yes, I'm a skeptic on everything w/ doctors, sorry) - she says that there is a shortage w/ Opana (haven't had time to google it yet)... and that she's having to switch all her patients on Opana to something else. Fine. So.... we ended up trying Oxycontin, which I haven't been on in maybe 2 years.... but, hey, maybe it'll work again. Who knows.

Then, she says - "I know you've been seeing Dr. xxx... but all docs are different and next time, bring your meds in w/ you. That way, if you have any extra, I can dispose of them... because it's really easy if you have "extra" meds laying around to take one of them".

Now, if you know me, you know I'm EXTREMELY anti-pill counting... etc. I have no problem w/ doing an occasional UA. I ALWAYS take my meds appropriately - and, in almost 9 years as a CP patient, have NEVER "lost" a prescription.... run short.... any of that stuff. So, my old PM never had me do anything because we had a very trusting relationship.

I have no problems bringing in my meds (well, don't like it, but I will).... but for her to "dispose" of any of them - when I've paid for them..... etc? That is more than irritating to me. Keep in mind, I DO throw away any extra/spare meds.... I don't want to keep them, especially w/ all the kids we have in our house. It's just the point.

I'm a "against the grain" kind of person anyway.... so I'm sure some will disagree w/ me on this.... and I KNOW how bad things are w/ CP patients, the DEA and all that. STILL, I'm frustrated.

The last thing that was really darn frustrating to me.... I say - "There are occasional times that I end up in the ER w/ acute pain issues (I get horrendous migraines). My old PM doc knew of this and supported me on going there. In fact, I carried a note in my wallet for years that said - "Tina has my permission to visit the ER for acute pain issues; if there is a problem - please call me". I just said - if I HAVE to go to the ER (which I avoid at all costs, but it IS a reality w/ me).... what's her position on that and such? (I thought I was doing good by just asking her this).

Her answer? "Well, the first thing is trying to not go to the ER"..... OBVIOUSLY - and I had already said that. But, as I told her, I have a family to raise and I get 2 to 3 migraines per week... and, if it doesn't go away, and it's 11pm at night... I'm sorry. I'm not going to suffer w/ a migraine, vomiting, etc. If I had meds at home that worked, that would be a different story.

The point is this.... I do like her. She's a nice person. But it's extremely hard having a new doctor... that doesn't know my history (which, admittedly, is extremely complicated). I felt she did nothing to review my complete history...so that she would see exactly what I've been through. She also is much more "cautious" than my old doctor.... My old doc wasn't a "free for all" - but he knows what I've been through, that I'm educated and let me be part of the process.

I don't think there's any "answers" but I had to vent, lol. I know there are others here that have it a lot worse w/ their doctors..... so this is all in perspective. But I'm still frustrated.....

Thanks, as usual, for listening....! I see her again in 2 weeks to see if these new meds do anything. ....Tina

Sumatriptan is generic for Imitrex. It also comes as a nasal spray. It's a triptan sulfa drug. It has some drug interactions, so you might want to read before taking it. It's supposed to work for some people.

I hate it when I have to see a new doc for a complex problem. This year I've had 4 docs retire and am getting a second opinion on one's treatment, considering a second on another problem. It takes more than 3 minutes to gen up on any chronic disorder.

Good luck.

Tina, it sounds like you and I are a lot alike. There is nothing worse than changing docs when we have complicated cases, especially a PM. I hope over time she will relax with you a little and allow you to be involved like you were with your old doc. I am going through the same thing with my primary. I have had issues with her for years but bein complicated and seeing many specialists, she only took care of a few minor things. But with all the DEA and FDA hoopla going on down here, every doc wants to wash their hands of anything remotely complicated. So I have some new issues that need addresses with a primary and I just do not trust her. I had an appointment today but got so worked up yesterday I cancelled it because I didn't feel strong enough to go in and stand up for myself.

I hope the oxycontin works for you as well as the triptan. I get chronic kidney stones so I also am in the ER a lot and my pain doc is great and works with my urologist so I am taken care of but years ago I had a different PM and when I said I need support regarding when I go to the ER and I am usually admitted. He was like well after hours I am hard to get a hold of and he kind of hemmed and hawed and I was not comfortable with that at all.

Good luck and I hope everything works out!

Tina, so very sorry that you went through this. I hope that it settles down and you can establish a relationship of sorts with your new doc. ((((hugs))))

Laura

Hi Tina,

First, I want to express how much I admire your spunk and your willingness to take on the challenge of "training" new medical professionals... I know they have to learn somewhere, but for some reason it always seems to be on the people they need to leave for last. :)

Anyway, I am sorry that you have had such an experience and I have real issues with the pill count/disposal thing too! I only bring mine in for disposal if they made me really sick or I had a bad reaction to them. This way I can use them the next time the pharmacy has to "owe" me some. Nobody considers that for us when they want to count everything. My pharmacy may "owe" me meds from several prescriptions in a month because of the number and kind of meds I take. It would be insane to just "wait" for the med to come in with the exact dose I need because someone else may need that dose too. This way, they have me in the computer and can fill the "owed pills" as soon as they arrive at the pharmacy.

I just can't get over the part about being tempted to take the extra meds...their your meds and...if you have extra...then you aren't taking them when you don't need them. That is one of the dumbest things I have ever heard a Dr say...and I have heard them say some dumb things before. I'm afraid she would have gotten that look of dumbfounded confusion when she said that one. WOW

I also saw the info on the Opana. I recently got an update saying the med has been backlogged for a long time, but is being released again...so they should catch up soon.

I'm sorry that breaking in this new Dr is such a difficult situation, but know you will be OK after a few months of working with her. The assistant will be scarred of you and the Dr will learn to respect you very soon....of that I am certain.

Good luck my friend! I hope them meds help some!

Hi Tina, well I don't have a lot to add but can only say this, once this new dr gets to know you and see's that you are a very responsible patient she will relax a great deal with you. Its just so frustrating in the beginning with a new dr, kind of like breaking in a new pair of shoes, but if done right it is a good fit. You are half way there already by liking this new dr , now its a matter of teaching her your ways.

Take care.

Tina, first I am so angry that you had to go thru that.  I am not sure what is going on all over this country except it seems where I live, which is Maryland, very close to Washington D.C.  Back in the late 90s we went through some similar problems, and many doctors were, rightly so put out of business.  But since that time things have settled down and they seem to have "cleaned house" with the doctors that were not doing there jobs.

It is difficult enough to have to live with cp plus your other issues, plus raising children, it is inexcusable to have to go thru what you are going thru.

Please take care and keep on fighting for your rights as a valid patient who needs your medicines.

Take care and good luck to you, if I can help in any way, let me know, I am good at writing to politicians and making them do there jobs.

Love,

Kathy

Tina,
Wow, So glad you did look up the med and found out it's potential with you being allergic. I want to say thanks to you right away for coming back and telling us what you found. I do look at the side effects of meds but have been somewhat relaxed about doing it in the past. No more. I will now study every one of them before I take the first pill. Thankfully I'm not allergic to anything but it is a good practice to do your own research just in case something has been overlooked.

My viewpoint on medical professionals is getting more and more slanted each day.
My thanks to the person who guided you.

So happy you are still here.
Dale

Hey all,

I was never implying that she was "trying" to kill me, Baileysmom. And I do understand that medical professionals are human.

However, when you've had your own life and the life of your child almost taken by so-called "mistakes"..... I'm sorry if I'm on the cynical side. However, I think that is what makes me a better patient.... because I'm cautious and so forth.

Final thoughts - re: the sulfa allergy and medication - I'm sure it would be fine.... and yes I've read all the info on the web.

But, when you have an allergy that produces the inability to breathe.... I would have liked to have known that "could" happen... even if it's a .001% chance.

--Tina

Hi Tina Wow. I can't believe that doctor gave you a med that could have possibly caused you to stop breathing. That really upsets me. You're such a dear friend to me, and they need to get their act together. I understand nobody's perfect, but she's a doctor, and she should have looked in your chart to see what, if any, meds you are allergic to.

I'm sorry for venting, but this really upsets me to no end. Take care. I sure hope you feel better. *hugs*

love and hugs
Loretta

Hi Momto8,

I never knew there was a possible Sulfa reaction...perhaps this explains why I had so many problems when I was given migraine meds. I thought it was just because they were related to serotonin.

On a similar note.....be very careful of diflucan too. It cross-reacts with sulfa too (in some people) and I am one of them. I had my eyes swollen shut, blisters on my lips, blisters on the palms of my hands, and the most unbelievable itch you can imagine from diflucan. I had no idea what caused it and thought I had been bitten by some small flying bug (camping) the first two times. I would get the blisters on my eyelids and then itch like crazy. Later, I put two and two together and the Dr had no idea what was going on. I called they gynocologist and they knew fully about the cross-reaction. Apparently it doesn't happen in everyone, but does in some.... so please be careful.

Tina, Sorry they put you through so much

The one thing for sure that is so good that you do do

Is you take charge of what they are doing,

Dang if we dont look over everything and question what someone is doing

Who will, We have to watch out for our health,

And we know our bodies LOL

We have to live with it everyday

I sure hope that all goes well

Take care always Renee