Changing Medications (Level of Trust Required)

[ProfessorTomoe 1,308]

13 hours ago, CritterKeeper said:

Hooray for making progress towards getting rid of that pain!

Small progress, as it turns out. The pain came back like it normally does later in the night, and my left-side is hurting when it normally *doesn't* hurt (unless I do strenuous work that involves leaning or turning to the left). When the lady called today, I had to say the device was only giving me a 10% reduction in pain. In reality, it was probably less. She told me to use the remote and increase the number of lights showing on it from 5 to 6 (it's more complicated than just a stimulation boost, she said). That made my left hand tingle, and it hasn't done a thing for my pain.

Now my back is itching.

[ProfessorTomoe 1,308]

5:12 p.m. CDT 20171027. The higher setting still hasn't done anything positive for my pain. It has made the occasional left-side pain turn constant. Compared to yesterday, I'd say the change in pain relief would be zero percent. At least the tingling in my hand went away.

I called the representative again and reported the above. She told me to wait until around 7pm and then bump the therapy up another notch to seven lights. If that doesn't work, they'll need to try another therapy program on the unit tomorrow. Fine tuning galore.

[The Old Hack 2,448]

2 minutes ago, ProfessorTomoe said:

5:12 p.m. CDT 20171027. The higher setting still hasn't done anything positive for my pain. It has made the occasional left-side pain turn constant. Compared to yesterday, I'd say the change in pain relief would be zero percent. At least the tingling in my hand went away.

I called the representative again and reported the above. She told me to wait until around 7pm and then bump the therapy up another notch to seven lights. If that doesn't work, they'll need to try another therapy program on the unit tomorrow. Fine tuning galore.

Don't lose hope. It may be that they will find a setting that works much better. Unfortunately this may require experimentation so I am afraid that right now you have to arm yourself with patience.

[ProfessorTomoe 1,308]

1 hour ago, The Old Hack said:

Don't lose hope. It may be that they will find a setting that works much better. Unfortunately this may require experimentation so I am afraid that right now you have to arm yourself with patience.

More like back myself up with patience.

[ProfessorTomoe 1,308]

6:24 a.m. CDT 20171028. Slept on my left side last night, which meant sleeping in my wife's freezing chamber (i.e., the master bedroom, over which I have long ago lost control of the temperature). Slept past my hydrocodone time, which exposed the true help of the implants. The right side pain was back at a level 5½, as was the right back pain. Immediately got up and took my meds (the whole lot of them).

It's cold in here, too. We've got a cold snap in the area. Things are on the low side of my Nest thermostat program. I think I need to activate my coffee program.

BTW, I'm at the maximum stimulation of Program 1 on my HF10 stimulator (there are three programs). I don't think I like it. I'm going to lobby for a switch in programs when the Nevro rep calls today.

[The Old Hack 2,448]

1 hour ago, ProfessorTomoe said:

BTW, I'm at the maximum stimulation of Program 1 on my HF10 stimulator (there are three programs). I don't think I like it. I'm going to lobby for a switch in programs when the Nevro rep calls today.

Maybe you could try Animal Planet? Having it run Too Cute might be helpful for your relaxation and stress levels at least.

...sorry, dumb joke. It is just one of my favourite programs when I feel down.

[ProfessorTomoe 1,308]

6:42 p.m. CDT 20171028. Getting in a report before the World Series and my Astros get started.

The Nevro rep called today and got an earful about how program 1 wasn't doing the job. Maximum pain relief 20%, I told her. She had me switch to program 2 (of 3) and put the intensity (?) on 5 bars. I'm supposed to bump that up to 6 bars at 8:00 p.m. tonight.

So far, program 2 is less of a pain in my left side. However, it's not working as well on my right side. I'm looking forward to 8pm to see if the boost helps.

[ProfessorTomoe 1,308]

3:35 a.m. CDT 20171029. The boost helped a little, but I'm still feeling breakthrough pain when my hydrocodone wears off. That shouldn't happen. It woke me up, I believe, about 30 minutes ago. I got up, had some Crystal Light, and went ahead and took my pills. Now I'm just getting caught up on a couple of things before I go back to bed (including rehydrating myself).

[ProfessorTomoe 1,308]

11:21 a.m. CDT 20171030. We're on program 3 now, on the maximum setting. It's the closest thing to true relief that I've had. I'm getting headaches, but I'm not sure if I'm getting that from the therapy (if that's even possible) or from something else. I did the math and learned that I can take two 1000mg doses of Tylenol in addition to the acetaminophen that comes with the hydrocodone, so I've taken one of them in hopes it works.

[The Old Hack 2,448]

45 minutes ago, ProfessorTomoe said:

11:21 a.m. CDT 20171030. We're on program 3 now, on the maximum setting. It's the closest thing to true relief that I've had. I'm getting headaches, but I'm not sure if I'm getting that from the therapy (if that's even possible) or from something else. I did the math and learned that I can take two 1000mg doses of Tylenol in addition to the acetaminophen that comes with the hydrocodone, so I've taken one of them in hopes it works.

Hang in there, Prof. I hope this will work out. Good luck.

[ProfessorTomoe 1,308]

1:56 a.m. CDT 20171031. Halloween, and I'm a bit frightened. I've only got a day and a half left on this test, and I still haven't found a setting that would allow me to back off of some degree of my pain medicine. I mean, that is the goal of this test, isn't it? To get me off of the hydrocodone? Well, I took a hydrocodone dose about 90 minutes ago (slept through my regular time) and I'm sitting here with pain breaking through on my right leg. That doesn't sound like it's working as advertised.

I don't know how to get this across to the representatives. They're only interested in percentages and pain levels on the old one-to-ten scale. I can't boil this down to a number. I've got hydrocodone running through me, wires implanted next to my spine sending out high frequency pulses, and I still hurt. I shouldn't hurt! Right?

I'm trying to hang in there, @The Old Hack, but nights like tonight are discouraging as all get-out. I don't know what to do.

[The Old Hack 2,448]

1 hour ago, ProfessorTomoe said:

1:56 a.m. CDT 20171031. Halloween, and I'm a bit frightened. I've only got a day and a half left on this test, and I still haven't found a setting that would allow me to back off of some degree of my pain medicine. I mean, that is the goal of this test, isn't it? To get me off of the hydrocodone? Well, I took a hydrocodone dose about 90 minutes ago (slept through my regular time) and I'm sitting here with pain breaking through on my right leg. That doesn't sound like it's working as advertised.

I don't know how to get this across to the representatives. They're only interested in percentages and pain levels on the old one-to-ten scale. I can't boil this down to a number. I've got hydrocodone running through me, wires implanted next to my spine sending out high frequency pulses, and I still hurt. I shouldn't hurt! Right?

I'm trying to hang in there, @The Old Hack, but nights like tonight are discouraging as all get-out. I don't know what to do.

I am sorry, old friend. All I can think of is that you need to get through these blasted representatives and speak with an actual medical professional. One who isn't a company man. The doctor you have some confidence in springs to mind. Get some advice and support from him, then return to the representatives armed with what he has to tell you. It is possible CritterKeeper also has suggestions. I wish I had more to offer you, apart from my support and my thoughts. *sigh*

[ProfessorTomoe 1,308]

58 minutes ago, The Old Hack said:

I am sorry, old friend. All I can think of is that you need to get through these blasted representatives and speak with an actual medical professional. One who isn't a company man. The doctor you have some confidence in springs to mind. Get some advice and support from him, then return to the representatives armed with what he has to tell you. It is possible CritterKeeper also has suggestions. I wish I had more to offer you, apart from my support and my thoughts. *sigh*

Thanks for the thoughts. I'm sorry for the whining (American spelling). It's a rough situation all around.

It's 4:58 a.m. CDT, and I'm up again. Woke up 30 minutes ago with pain in my hip. "Level Six" for the bean counters. Took my 4am hydrocodone dose. Still hurts some.

The sad thing is that the "company representatives" are surgical nurses, if I understand correctly. They've been hired from hospitals by the implant company. In other words, I don't have a "higher up" to talk to until the day of my removal. Complicating that, if you'll remember, is the fact that I'm hitting tolerance on my pain medication. I discussed this with my doctor on the day of the implantation. I'll have to remind him of the situation come removal time.

One more niggly bit: MY BACK ITCHES LIKE HADES!!!!! I've got a pad of tape, gauze, more tape, and even more tape keeping the wires in place and keeping my grubby fingernails away from the insert points. I'm going to cash in on all of the back scratches my wife has cajoled me into giving her and get her to scratch me for hours once it's safe to do so.

[CritterKeeper 1,102]

Sounds like it is at least helping, though, right?  I seem to recall you mentioning that they were hoping for a fifty percent reduction, not a complete cure, and you were just hoping for better than that.  Do you think any of the settings have achieved a decent percentage reduction?

[ProfessorTomoe 1,308]

5 hours ago, CritterKeeper said:

Sounds like it is at least helping, though, right?  I seem to recall you mentioning that they were hoping for a fifty percent reduction, not a complete cure, and you were just hoping for better than that.  Do you think any of the settings have achieved a decent percentage reduction?

Not yet. I don't feel like I could trade it for a reduction in my hydrocodone dosage. That's the bellwether that I'm using. If I could have decreased my hydrocodone in exchange for the implant, I'd say it'd be a success. Not happening yet.

Oh, one more thing: they had me do some stuff that was on the "don't do this" list in order to get the left side of my back involved in the test. They made me very carefully unload our dishwasher, something that sets my back on fire under normal circumstances. Just in the short amount of time it took to do it, my left back pain level shot from a zero to a six.

To hear the nurse talk, some of my pain may not be nerve pain. I don't see how that's possible on the right side, since it shows the classic signs of a sciatic nerve pain. On the left, though, there could be actual injury to my back. The unit's not going to do a thing for that if that's the case.

[ProfessorTomoe 1,308]

4:13 a.m. CDT 20171101. Happy November. Make sure you get your free taco from Taco Bell (2-6pm, only in the States, I think), courtesy of the Houston Astros.

Today is judgement day for the Nevro wires. Do they stay or do they go? /* breaks out into song and dance number, remembers he can't dance, sits back down */ Anyway, I go in at about noon-thirty to meet with the doctor and one of the representatives. I'll be a bit glum for starters, since my Astros lost game 6 of the World Series last night. (Come on guys, pull it together for game 7!!!)

At some point after all the angst, we'll start talking about whether or not the trial will be extended, and if so, by how long. The setting they've got me on now has become progressively worse. I woke up about an hour ago with level 5 pain in my right leg. I've taken my pain medicine, but with me hitting tolerance, I don't know how fair a trial this is. Maybe it's even more fair—if the thing really worked, it would block the tolerance pain.

I've got to remember to gather all the stuff they gave me (the remote, the documentation, etc.) and bring it with me to the appointment. I'm not looking forward to the whole rigamarole, since I've got to take a sponge bath (no showers with the wires coming out of my back) and get everything else together before leaving. Going anywhere is always a big production number with my pain interfering.

Either way, something's going to happen today. It's just a matter of finding out what.

[The Old Hack 2,448]

3 hours ago, ProfessorTomoe said:

Either way, something's going to happen today. It's just a matter of finding out what.

Good luck, Prof. We're all rooting for you.

[mlooney 3,417]

I think my current meds are working, but this last week has been odd, but I think it's due to a cold, not the meds not working any more.   It's not that I don't want to get out of bed, it's just that I feel like crap and I want to lay down.  At least for the last 2 days any way.

 

[The Old Hack 2,448]

18 minutes ago, mlooney said:

I think my current meds are working, but this last week has been odd, but I think it's due to a cold, not the meds not working any more.   It's not that I don't want to get out of bed, it's just that I feel like crap and I want to lay down.  At least for the last 2 days any way.

 

Good idea. Get some rest and take care of yourself. And that STILL goes for you as well, @CritterKeeper. If you don't behave and give yourself a chance to recover, my wife has promised she will look you up and beat you with a stuffed shark. And you don't want that.

In fact, you never want to get into a stuffed animal fight with her. I know this to my sorrow. Not only does she hit hard, but she dual wields, too.

[ProfessorTomoe 1,308]

10 hours ago, The Old Hack said:

13 hours ago, ProfessorTomoe said:

Either way, something's going to happen today. It's just a matter of finding out what.

Good luck, Prof. We're all rooting for you.

Some thing(s) did happen today at the doctor's office. First off, they X-rayed my back to make sure the wires were still in place. I got to see them for the first time. They're not just wires—they're block devices. In good, old-fashioned ASCII, they look like this:

-=-=-=-=-=-=-
-=-=-=-=-=-=-

At least, that's what they're supposed to look like. Mine look like this:

-=-=-=-=-=-=-
 -=-=-=-=-=-=-

So, they had to reprogram my stimulator unit to take this into account. They've also decided to extend the trial until Friday by loading two new programs into my stimulator. I'll go through those tonight and the first part of tomorrow, when they'll have me switch to the other program. In any case, the "wires" have to come out Friday at my 1:30pm appointment.

The other thing that happened at my appointment is a change of medication. They've taken me off of hydrocodone, effective after the test, and put me on Dilaudid (hydromorphone), a stronger drug. It's also safer, since it doesn't have acetaminophen added in like hydrocodone does. My medicine is already in the mail, so it should arrive tomorrow or Friday.

BTW, Mrs. Prof won't be able to take me to my Friday appointment due to work meetings, so my son will be driving me there. It'l be his first exposure to what I'm going through. Should be interesting.

[ProfessorTomoe 1,308]

8:51 a.m. CDT 20171102. I'm waiting for a call from the Nevro rep about the setting she programmed into the unit yesterday. I've got bad news for her—it's not working all that well. Woke up with level 5 pain again, reminding me that it was almost time to take my meds. Exertion kicks off a level 5 pain as well. She'll get the news when she calls, supposedly around 9am or 10am. I'll be told to switch programs again at that time.

9:15 a.m. CDT. She called. I told her my average pain level was 5 and pain relief was 15%. I thought she'd have me change programs, but instead she had me turn up the intensity on the current program. She also said she'll call me back at around 4pm or 5pm to check again. I guess we'll find out what's going on then.

[ProfessorTomoe 1,308]

My Dilaudid arrived in the mail today. Mrs. Prof signed for it on the most complicated-looking pad I've ever seen the USPS use. It's 4mg, 150 tablets for 30 days. That works out to 5 tablets a day, but the prescription says, "1 to 2 tablets per day." Looks like I'm stuck in another one of these situations where I'd be screwed if I took 2 for the entire 30 days, because I'd run out early ((2 pills x 3 daily doses) x 30 days = 180 pills).

I'm bringing the prescription with me to the appointment tomorrow to ask what the hell is going on. Spine Team Texas did this. I didn't expect it from my current doctor. He's supposed to be a high class professional.

[Don Edwards 548]

If the prescription says "1 to 2 tablets per day" then for 30 days you'd need a maximum of 60 and I'd wonder why you got so many - that's more than a 2-month supply but less than 3 months.

Now if the doc is thinking that you'll need 3 doses a day, 2 tabs each in the morning and mid-afternoon but only 1 before going to bed (because you'll presumably be asleep), that would work out to 150 pills a month.

As it happens, my lady takes a 4mg hydromorphone 3 times a day and a 2mg in the middle of the night. Which is why I thought of the variant night-time dosage.

(And she really wants to reduce the opiates further, and eventually get off them entirely, because she's realized that if she forgets a dose she goes into withdrawal within three hours.)

[ProfessorTomoe 1,308]

37 minutes ago, Don Edwards said:

If the prescription says "1 to 2 tablets per day" then for 30 days you'd need a maximum of 60 and I'd wonder why you got so many - that's more than a 2-month supply but less than 3 months.

ARRGH. I got my syntax wrong. The label does say "1 to 2 tablets by mouth 3 times a day." That'd be the maximum of 180.

 

39 minutes ago, Don Edwards said:

(And she really wants to reduce the opiates further, and eventually get off them entirely, because she's realized that if she forgets a dose she goes into withdrawal within three hours.)

I do too. I can't drive while on them. That's why I went under the knife and had two electric leads shoved up my spine.

[ProfessorTomoe 1,308]

I think I've [expletive deleted] up the test.

I just realized that I haven't taken my 10 a.m. or 4 p.m. hydrocodone doses. What does that say about the relief factor from the electrodes? I mean, what does it really say??? And why didn't I go into withdrawal?

I've changed a variable. How do we account for it?