I'm back! ..... and scared

[Neco]

Alright... So

I'm somewhere close to $1,000 in debt now and am being tapered off Methadone and put back on Hydrocodone... Substituting Hydrocodone for Methadone in my doses as I go down.

Partial Victory... I guess?

[ViewsAskew]

Alright... So

I'm somewhere close to $1,000 in debt now and am being tapered off Methadone and put back on Hydrocodone... Substituting Hydrocodone for Methadone in my doses as I go down.

Partial Victory... I guess?

I'm not even going to ask why they'd put someone who's had issues with abuse on hydrocodone instead of methadone....

But, partial victory, yes.

[Neco]

I am going to go out on a limb, and guess that my original doctor wisely chose to shield a lot of my past transgressions from the system by keeping them out of my chart, or rewriting any visit reports into something less incriminating on my part.

I have no doubt that if people knew my full history, they likely would not prescribe me anything at all.


I admit, I am a little scared at what I may do. But I have to have faith that I can maintain my self control to some degree.. Even on Methadone I had management issues and it took me a while to really get my house in order and shape up - and I did do that. I haven't had an early refill or dosage increase in years.

[Polar Bear]

Zach, I wish you well as you substitute your medication. Keep strong, and remember how far you have come over the years.

[ViewsAskew]

Makes sense. It's hard to stay honest with yourself and you seem to be doing that very well. As long as you notice if anything is happening and take steps to prevent ongoing issues, you should be fine.

[Neco]

Thanks..

I just wish it didn't cost me so much money to get to this point.. I don't know if the visit I had at St. Mary's yesterday had any impact on the way this doctor is thinking about things.. But yesterday amounted to little more than a therapy session.. I saw the Movement Disorder Specialist this time.

When I got there, I was asked if I had been taking the Neurontin the guy I saw before prescribed, and I was like "what prescription?" Nobody said anything to me about it, not my Dr's office and not the pharmacy.. And the guy didn't specifically tell me he was going to be sending a prescription, but I basically told them I wouldn't have taken it anyway, because it didn't work and he didn't say how long I would need to take it before I could tell if it was working, and the last time I tried it, I didn't last more than a week.. I also relayed all the usual info about the other drugs I've been on, Requip, Mirapex, Levodopa and such and how I either couldn't stand side effects or the symptoms were made worse.

But at the end of the day, none of this could before verified because no charts were ever sent to this place, and the electronic access only showed old notes from 2008 from my original doctor... She couldn't really do anything for me because she couldn't verify anything I had told her; which I kind of understand.. As to whether or not this local Dr. was trying to shift me on to someone else to take over the management, she said she could take me on but having no insurance was an issue because of the cost of visits ($400 for my last visit!) and she would want to start from scratch to verify the diagnosis and whether or not she agreed with it, etc.. Which made little sense to me, but I don't know if that was because she didn't have access to my charts or just something she would do regardless..

She also mentioned I should have a sleep study, which seems pointless to me since as far as I was aware sleep studies can't diagnose RLS (has that changed?). I told her I was diagnosed by reporting symptoms to my doctor, and discussing things with him and doing some research. She certainly was sympathetic that opiates were a valid treatment when other drugs weren't working, but against she didn't have any information from my chart to verify that. I made it a point to tell her I don't care if it's not Methadone, I just need something to control my symptoms which are also present in the daytime as well as night, and I thought my doctor seemed like she might prescribe Hydrocodone, which was better than nothing and I had been on it before, but stopped because my dose kept going up over time from tolerance, etc. I made it clear to her as I was medicated "right now" my symptoms were 100% under control and everything was "good", but if I don't get an alternative medication this doctor will prescribe then I am screwed come Monday because I'll have to quite my job, etc..

She did try to get my doctor on the phone while I was there but couldn't, and basically said she was not charging me for the visit and she would continue trying to contact my doctor. If I didn't hear from them before noon today to call her office, but I told her I had an appt with my doctor today at 10am, and she said we'd get it sorted out by then.

So I went in to my clinic today not knowing what to expect. First thing I asked was if the Dr. got ahold of her and she said yes they had spoken and "this is what we're gonna do"..

They want me to try the Neupro patch, supposedly there is an aid program available for RLS patients. In the meantime I'm trying to get insurance through the gov't program but I've gotta sort out this identity verification BS.. She also mentioned getting a sleep study done, which I assume will be once I have insurance, although I still don't know what the point would be... But for now she said she's prescribing some more Methadone for me to taper down over 3 weeks, substituting the Norco (5/325) as I reduce the Methadone. Went through the whole pain contract signing deal with the agreement to random screens and mandatory every 3 month visits, etc. She said she has no problem prescribing the narcotics and it was just the Methadone she is not comfortable with because she does not have experience and she had other health concerns.

So for now I'm supposed to do my taper, and once I am off the Methadone if the Norco is working well then I can call in and she will give me refills on the next prescription, or if I'm still having problems then I can come in and we can talk about it if I need a little more or whatever. She said I could take it up to 6 times a day, but to try to keep it to 4 if I could, but not to take up to 6 while tapering (which is reasonable). She even said if I have problems like I start experiencing withdrawal symptoms to call and she would give me a benzo like Lorazepam or Xanax; even commented they can work for RLS too, but I told her I definitely don't want to be on benzos long term because I have heard how bad it can be to come off them if I ever needed to.

She did also seem to acknowledge that sometimes some treatments don't work for some people, and that she sees my situation with all the drugs I've tried in the past, and that she seemed to be OK with that, if the Norco was working it seems like she would continue prescribing it. So hopefully I won't have any more problems with this..

[ViewsAskew]

I recently had a similar problem with a doc - also when one doc left and I switched to someone else in the same office. She wanted proof - I guess it's because it's opioids. She wanted a current sleep study, a study from a neurologist that nothing else was causing it, and so on.

I didn't have any of those records. I've had three sleep studies, but they don't show WED anyway (no, nothing has changed) - but they do show PLMs and about 80% of us have them. And, they can see that you're either not sleeping or that you are getting up and moving.

My guess is that when you start working with a doc originally, you go through many things before you get to opioids, so they have the comfort. When you are already taking opioids, they have no idea that you're not scamming them. Street value of the opioids we take is from $5 to $80 A PILL!!!!!!

I didn't have any of those things and to find them would have taken me untold hours of torture. I don't even remember some of the doctors names (I've seen about 15) and I've had at least 6 different insurance plans (being self-employed). What really annoyed me was that they could easily TALK to Dr B - and had! I'd been his patient - but that wasn't enough. In your case, your doc treated you, too, so what, that isn't good enough????

If they'd send people home with leg monitors - like a a PAM-RL that uses the Actigraph software, it wouldn't be so bad. But, to pay $1000 to $3000 for a sleep test????? Seems very over-the-top to me.

[Sojourner]

I think this is related to my post about record keeping. Unfortunately, I have also been caught in the revolving door but not nearly to the degree that I'm sure many others have been subjected to. I hope you can get things straighted our quickly, Zach.

[Neco]

Ok.... so things have not turned out like I expected.

The Methadone taper went, surprisingly well, but still served as a foreboding of problems.. I'll freely admit to you guys, I dicked around a little (once or twice) to see if I could still get a buzz from Hydrocodone (and I did...sort of, but the amount required was unrealistic even to me) . But I quickly stopped that and put on my game face.

I changed the Taper instructions to suit my personal preference; basically I cut out the first week. Because at that point I had been stretching myself on 2 pills a day as I was overdue for a refill when my appointment was to be had and I knew I wouldn't make it. There was no logical sense for me to go back to 3 pills when it would only be for a week and only serve to make the transition harder. So I used my Methadone sparingly, taking 1 in the am and 1 in the pm. I used the Hydrocodone 5mg at a time inbetween, and I also tried it at night when I started having problems but ultimately I had to resort to taking some Methadone.

But I tapered myself as best I could down to 2.5mg before stopping (I actually have 2 Methadone pills left over). However I only made it to 3 weeks before I ran out of Hydrocodone. And that was while I was still on Methadone I abruptly grabbed the only open appointment on a Friday I could get, and went in to talk about it with the doctor. So I explained things and that the Hydrocodone worked, but it was taking 10mg doses, about 40mg a day. She upped me to the 120x 10mg pills 4 P.O daily.

That was on the 18th. It's now the 25th and I had to call them this morning to inform them I could not continue with the medication. I was simply having to take too much. I am convinced it is because I completely stopped the Methadone only a week ago; I was really hoping it would calm down and I could actually get by on LESS Hydrocodone than I was given. But I wouldn't even make it 3 weeks this time if things had kept going, and I agonized over the decision to call and request being switched to the controlled-release Morphine we had discussed as an option.

I got the dreaded phone call back, but it was good news (or "sort of" as was my state of mind after I hung-up). She would prescribe the Morphine ER but I had to bring my current bottle of Norco and turn it in the receive the script. I had used a lot. A LOT in these past 10 days.. I thought I was screwed and they were gonna assume I was just a pill head (paragraph 1 irony not unnoticed). I thought this was odd aside from everything because I usually had to turn bottles in at the pharmacy, not the office.. But I got there, and then the nurse told me I would turn it in at the pharmacy..

Thankfully, me and the pharmacist are very friendly and he knows what I've been going through.. He has helped me out on lots of occasions, and I asked him if this was gonna be a problem, but he said "Nope, they didn't give me a hard number to go by or anything, I just check a box and everything should be good"..

So, now I'm on Morphine ER, 15mg: 1 in the morning & 1 at night..

I hope to god this stuff works out. I was going nuts with the Norco. I would take enough to finally quell things, and then a few hours later I needed more. If I took a large dose I could get 6 hours out of it but I'm supposed to take 4 a day, not 8 and certainly not 10 (100mg). I really want this stuff to work. Of course it WILL work, I just hope its the right dose

The final slap in the face was the price. $72 and some change, and that is GENERIC and my pharmacist probably was giving it to me at cost or very close. I can afford it more than likely, but...ouch
My doctors bills for all my recent visits, is around $900. Plus the other $290 I still owe the specialist I went to.. Paid some of that today.. With all that's going on I forgot to file my taxes, and wondering if its even worth it to claim this year (why bother if penalty eats any return I get). And I couldn't get signed up on Healthcare.gov because the stupid application errors all the time.

[Polar Bear]

You have been very honest in how you have been coping. It seems your doc and pharmacist are doing what they can to help and I really hope this works.
I think you've done well getting through this so far.... you can do this.

[ViewsAskew]

For any of us who've been on methadone, it's almost impossible to go to a shorter acting opioid. Methadone lasts at least 6-8 hours and up to 12 for many of us. I've never had one of the 4-6 hour drugs last more than 3 hours. When I tried several of them a couple years ago, I was up every 2-3 hours during the night. And, like you, I had to take the max dose - it was crazy.

I hope this works for you.

You may not have time during the day, but I called the Healthcare.gov number and they got me taken care of immediately. You might call and say that you tried and it failed.

[Neco]

yeah I been meaning to call them, but I am such a procrastinator.

Things have been very iffy so far. I don't know if she low-balled my dosage as a precaution, or for another reason but 15mg is not going to cut it I think. I did some reading and coming from Methadone it seems my dose should be closer to 100mg or so. But I'm not about to walk in there and ask for 100mg either. I'd be happy if 30mg worked out better. Hell I'd be happy if 15mg started working better after a few days.

But it has not been easy so far

[ViewsAskew]

One of my doctors fired me when I tried to find an alternative to methadone. I had to take so much of everything I tried - she was so freaked out, she finally refused to write another script. Like you, I surely would have preferred less to work! She seemed to think I wanted to take that much and still get a crappy night's sleep. Right.

[Neco]

I know, its like why bother at all?

I've been double dosing and 30mg is definitely better than 15.

Even at such a big increase that's still only 30 / 12 = 2.5mg per hour

[Neco]

So, I had an appt yesterday....

I walked out with what I came for, but I'm on thin ice for now. Got lectured for self-adjusting and not calling about my issue sooner, and warned that I technically broke my pain contract.
But I also put my foot down and told her, look I was on Methadone you can't expect my tolerance to be low, like other patients.

So I told her, give me a week with 30mg / 3x a day and I guarantee that there will be no more issues. I was told in no uncertain terms that if this doesn't work I will have to find another, more experienced doctor.

Of course, a months worth of this stuff is going to cost me $150 so I'm not sure how I will cope with that until I get this stupid health insurance stuff sorted......


Meh.