Changing Medications (Level of Trust Required)

[ProfessorTomoe 1,308]

42 minutes ago, mlooney said:

@ProfessorTomoe your issues with Abilify make me want to set several calendar alerts on several machines to make sure I don't run out of it.  In theory I start on it today.

Yeah, it was my psychiatrist who told me directly not to stop it cold turkey. Said that'd cause seizures. I don't think you want those any more than I do.

Now, I wouldn't consider missing a dose here or there to be dangerous, but going off of it for 48 hours (or longer) without a weaning-off period? Yeah, that'd be bad.

[mlooney 3,417]

Today is the first day in about six months that I've taken Adderall.  Right now I have the wonderful feeling of being hot AND cold at the same time.  I am, as I like to say, pigging like a sweat, but my feet are cold.  Even in wool socks.  Plus I can tell I should eat something, but the idea of eating is Not Good right now.  That's a typical side effect of Adderall, and in fact why amphetamine was used, back in the day, as a diet pill.  Last time I was on it for several months I drop down to my high school weight.  That is about 40 pounds less than I weight right now.

[ProfessorTomoe 1,308]

2 hours ago, mlooney said:

Today is the first day in about six months that I've taken Adderall.  Right now I have the wonderful feeling of being hot AND cold at the same time.  I am, as I like to say, pigging like a sweat, but my feet are cold.  Even in wool socks.  Plus I can tell I should eat something, but the idea of eating is Not Good right now.  That's a typical side effect of Adderall, and in fact why amphetamine was used, back in the day, as a diet pill.  Last time I was on it for several months I drop down to my high school weight.  That is about 40 pounds less than I weight right now.

I can see why you've been avoiding it. Still, follow your doctor's orders. Take the medicine, unless it's giving you a true, reportable adverse reaction. If that's happening, then for cryin' out loud, call him or another medical professional (or call 911 if the reaction is too horrendous or if it's too late in the day). You know the safety drill. Stay safe!

[mlooney 3,417]

My drugs other for the change over just got here.  I'm only filling the pill tray with each "incremental change" instead of trying to figure out the whole mess.  So I've got the next four days set up now.

[ProfessorTomoe 1,308]

15 hours ago, The Old Hack said:

15 hours ago, ProfessorTomoe said:

Having problems with a rather fast, throbbing heartbeat at the moment as I wait for my nightly pills to kick in. Took my BP & heart rate: 130/76 and 108 b.p.m. Not bad on the BP, but rapid on the heart rate. Lots of PVCs, too. Not helping with my epidural headache at all.

Something's making it hard to keep both eyes on the same spot, too. Could be my hydrocodone.

That doesn't sound pleasant. Please be careful.

I think I've found a little rat turd in my hospital report salad that could explain some of the heart issues I've been experiencing, including those from last night.

Going through the report on the CT scan of my lumbar spine, I found this statement:

Quote

Mild atherosclerosis of the abdominal aorta.

WHAT THE HOLY LIVING @$#@%$$$????? Atherosclerosis? Hardening of the arteries? Of my frikkin' ABDOMINAL AORTA? And they were going to tell me about it WHEN???

Oh, why the hell do I even try? Even if it's mild, don't you think that's something they should have passed on to their patient?

Anyway, I sent off an e-mail to my primary care physician through his patient portal and asked him if he wanted to do anything about it—you know, like forward the info on to my cardiologist or my electrophysiologist (who still hasn't called me back about the cardiac event monitor). It's still early, and I'm not expecting a reply from him until after 5pm, if I get one today at all.

It's about 30 minutes away from my next pain med dose. They've been sine waving on me today—either bottoming out and not working at all, or peaking and working too well, knocking me out. I'm going to hope for something on they medium-high side of the y axis when I take it. Maybe that'll get the ticked-off sensation out of my head.

[ProfessorTomoe 1,308]

I can barely keep track of all of this. I've got a stack of cards and paper that, if Mrs. Prof were to touch, would destroy my medical scheduling and contact system forever.

I got a call from the electrophysiologist's nurse within the past hour about the cardiac event monitor. Sure enough, she said it did catch what I've been having problems with—PVCs and other heart rhythm problems (she talked so fast that I couldn't catch all of what she said). She then said the doctor wanted to know what I wanted to do about it.

Erm ... excuse me? The doctor wants me to tell him how to treat the situation? What is this, a Self-Service Heart Medicine Outlet Store???

After some confusing back and forth, I finally got the nurse to understand that I want to see the doctor (with Mrs. Prof in attendance) and discuss the next steps. Christ, I shouldn't have even had to have said that. Anyway, Mrs. Prof and I have an appointment next Friday morning.

Side Note: I mentioned the aortal atherosclerosis to the nurse. She said that this doctor doesn't deal with that. I'll have to go to my regular cardiologist if my primary care doctor wants that treated. (Can you say, "52 Pick Up"? I'm feeling more and more like that as time goes by.)

[Pharaoh RutinTutin 1,586]

So when I first went to see the psychiatrist in January, he had me tested for low testosterone.  It took nearly three months to find an endocrinologist in my area who works with my insurance and will see patients for reasons other than diabetes or GI disorders.  They scheduled and appointment for me with her in June.

Yesterday I get a call telling me this doctor has left their practice and I should consult with my primary care physician.

I think I may try an OTC low-T supplement and see what that gets me.  I have an appointment with my regular physician next week.  I will ask him about this idea.

[ProfessorTomoe 1,308]

49 minutes ago, Pharaoh RutinTutin said:

I think I may try an OTC low-T supplement and see what that gets me.  I have an appointment with my regular physician next week.  I will ask him about this idea.

Don't get your hopes up for the OTC stuff. It's money-making placebo, most of the time.

[Pharaoh RutinTutin 1,586]

4 hours ago, ProfessorTomoe said:

It's money-making placebo, most of the time.

That isn't so bad for me.  I need to make some money.

[ProfessorTomoe 1,308]

2 hours ago, Pharaoh RutinTutin said:

That isn't so bad for me.  I need to make some money.

/* hauls out large fish and assumes last part of "Fish-Slapping Dance" choreography */

[ProfessorTomoe 1,308]

Tried something last night: slept with my head in a normal position. Seems to have worked without inducing any brain freeze or other epidural headache symptoms. I might be over that part of this nightmare! (crosses fingers, toes, arms, legs, eyes, certain portions of genitalia)

[CritterKeeper 1,102]

On 5/5/2017 at 6:32 AM, ProfessorTomoe said:

I got an e-mail from the hospital's patient portal, telling me that I had new test results in my online chart. I logged in to check them and discovered that they were from Monday's CT myelogram. Surprisingly enough, they listed three major problems found during the exam:

• Lumbar nerve root disorder
• Lumbosacral spondylosis with radiculopathy
• Other spondylosis with radiculopathy, lumbar region

There are more detailed reports for both the myelogram and the CT scan that show a bunch of other little individual problems along parts of the spine. Sounds like someone hasn't been giving me all of the details.

Now, the problems listed above and in the detailed reports may not be operable or curable, but they at least sound like issues that could be the sources for my pain. I'm not even 100% certain of what they are, although "nerve root disorder" sure sounds like an explanation for some of what's going on.

Often, the scan is read and the official report written by someone different than the person who ordered it and talks to you about the result.  I know there have been times when I've been in the room for an ultrasound, and been told what they think they're seeing, but the final report (written after they've had time to review the images further) has had something additional in it, occasionally something that changes how we would proceed with the patient.  

Of course, some doctors tend to give only the information they think is relevant, thinking that anything more will be too confusing for their patients.  If it's something that they can't treat, or that they don't think is the cause of what they see as your real problem, then they'd just not take the time to discuss it.  I'm hoping that this is not your situation, or that if it is, they'll catch on from your questioning that you are a patient they need to discuss everything with.

Quote

And here I was, thinking I was going crazy from some hip problem or even a psychosomatic disorder. Damned "Spine Team" doctors weren't telling me everything that they were seeing. I need to do some more digging, methinks.

Doing your own research is always a good idea, as long as you know how to get good info out of Dr. Google instead of getting lost in the "99% of everything is crap" portion of the internet.  You can learn a lot and be a more knowledgable and useful participant in your care, advocate for yourself, and coordinate information between your many physicians more effectively.

You can also scare the bejeebers out of yourself reading all the horrible possibilities....

On 5/5/2017 at 0:49 PM, mlooney said:

Today is the first day in about six months that I've taken Adderall.  Right now I have the wonderful feeling of being hot AND cold at the same time.  I am, as I like to say, pigging like a sweat, but my feet are cold.  Even in wool socks.  Plus I can tell I should eat something, but the idea of eating is Not Good right now.  That's a typical side effect of Adderall, and in fact why amphetamine was used, back in the day, as a diet pill.  Last time I was on it for several months I drop down to my high school weight.  That is about 40 pounds less than I weight right now.

For cold feet, I have a heating pad at the foot of my bed.  If it's on top of the blankets, and my feet under them, I find that putting it on a low setting warms up my feet nicely without the risk of burning anything while asleep.  As for the weight loss, I kinda wish I got that side effect.  My mom had it the other way 'round; when she was on amphetamines for weight loss as a young woman, in hindsight she thinks she had fewer ADD symptoms as a side benefit.

21 hours ago, ProfessorTomoe said:

WHAT THE HOLY LIVING @$#@%$$$????? Atherosclerosis? Hardening of the arteries? Of my frikkin' ABDOMINAL AORTA? And they were going to tell me about it WHEN???

Oh, why the hell do I even try? Even if it's mild, don't you think that's something they should have passed on to their patient?

*hands Prof a book with large, friendly letters on the cover*

Quote

Anyway, I sent off an e-mail to my primary care physician through his patient portal and asked him if he wanted to do anything about it—you know, like forward the info on to my cardiologist or my electrophysiologist (who still hasn't called me back about the cardiac event monitor). It's still early, and I'm not expecting a reply from him until after 5pm, if I get one today at all.

You would think, in the electronic age, it would be simple to set things up so that everyone working on you got the reports from everyone else working on you, without you having to get involved.

19 hours ago, ProfessorTomoe said:

I got a call from the electrophysiologist's nurse within the past hour about the cardiac event monitor. Sure enough, she said it did catch what I've been having problems with—PVCs and other heart rhythm problems (she talked so fast that I couldn't catch all of what she said). She then said the doctor wanted to know what I wanted to do about it.

Erm ... excuse me? The doctor wants me to tell him how to treat the situation? What is this, a Self-Service Heart Medicine Outlet Store???

After some confusing back and forth, I finally got the nurse to understand that I want to see the doctor (with Mrs. Prof in attendance) and discuss the next steps. Christ, I shouldn't have even had to have said that. Anyway, Mrs. Prof and I have an appointment next Friday morning.

The charitable interpretation is that this is what she meant, whether you wanted to see the doctor in the office, or talk on the phone, or email, or whatever, rather than asking you what treatment you'd like.  And having Mrs Prof along is, as always, an excellent idea.

In the future, if they're rattling things off too fast, don't be afraid to ask them to repeat what they said, including asking for spellings of the unfamiliar words.  ;-)

Quote

Side Note: I mentioned the aortal atherosclerosis to the nurse. She said that this doctor doesn't deal with that. I'll have to go to my regular cardiologist if my primary care doctor wants that treated. (Can you say, "52 Pick Up"? I'm feeling more and more like that as time goes by.)

I would think the info should be given to the cardiologist, whether the primary care thinks it's relevant to them or not.  Let the expert decide what affects their field!

13 hours ago, ProfessorTomoe said:

Don't get your hopes up for the OTC stuff. It's money-making placebo, most of the time.

Plus I can't even guess at how many times the FDA's email list we're on has included recalls of OTC "supplements" because they had actual drugs in them, sometimes dangerous ones that could interact with other medications or cause side effects.  So either it doesn't work because it's really lawnmower clippings in those "herbal" capsules, or it works to some degree but has worse side effects than whatever a physician might have prescribed because it's an older drug MDs know better than to prescribe any more.

If you must get supplements, go to a web site like consumerlab.com, where an independent lab tests supplements of various sorts to see if they actually have what they're supposed to have.  (That one's one of the best, but does charge a minimal fee.)

[ProfessorTomoe 1,308]

5 minutes ago, CritterKeeper said:

Of course, some doctors tend to give only the information they think is relevant, thinking that anything more will be too confusing for their patients.  If it's something that they can't treat, or that they don't think is the cause of what they see as your real problem, then they'd just not take the time to discuss it.  I'm hoping that this is not your situation, or that if it is, they'll catch on from your questioning that you are a patient they need to discuss everything with.

I'm starting to think that this is the situation, sad to say. I'm going to bring printouts of the reports to the follow-up on 6/1/17 after the lumbar caudal injection, along with any other reports that get generated from the injection itself. I will ask questions.

9 minutes ago, CritterKeeper said:

Doing your own research is always a good idea, as long as you know how to get good info out of Dr. Google instead of getting lost in the "99% of everything is crap" portion of the internet.

I tend to stay on the major sites for basic info, like the Mayo Clinic and similar. I know what to look for when it comes to more detailed information, I would hope.

12 minutes ago, CritterKeeper said:

*hands Prof a book with large, friendly letters on the cover*

If that book truly existed, I would thank you for it. In reality, well ...

14 minutes ago, CritterKeeper said:

In the future, if they're rattling things off too fast, don't be afraid to ask them to repeat what they said, including asking for spellings of the unfamiliar words

Believe me, that was done, to the audible irritation of the nurse. She deserved it for talking like a hockey play-by-play caller.

15 minutes ago, CritterKeeper said:

I would think the info should be given to the cardiologist, whether the primary care thinks it's relevant to them or not.

They'll get it. I'm sure my PCP would tell me to give it to him anyway. Thanks!

[The Old Hack 2,448]

I think I am getting acronym sickness.

[CritterKeeper 1,102]

3 hours ago, The Old Hack said:

I think I am getting acronym sickness.

Too many TLAs?

[ProfessorTomoe 1,308]

Totally off-topic for my own off-topic thread, but I kinda need the ego boost after all of the pain and health issues. I've got the TV tuned to the 2017 Kentucky Derby—not really watching it (the sound is off), it's just there for visual white noise. I glanced over a couple of minutes ago and noticed they were scrolling the names of the horses and the current odds at the bottom of the screen. Believe it or not, horse number 1 is named "Lookin At Lee" (my real first name)!

It's probably not gonna win the race—it's a 31-1 longshot—but hey, I'd lay ten bucks on it.

EDIT: HOLY CARP! Lookin At Lee came in second! That ten dollar bet would have brought back some good cash if I'd bet on him to place or show!

Edited May 6, 2017 by ProfessorTomoe
Incredible Finish at the Kentucky Derby

[The Old Hack 2,448]

1 hour ago, ProfessorTomoe said:

Totally off-topic for my own off-topic thread, but I kinda need the ego boost after all of the pain and health issues.

In other words, it is a therapeutic and medicinal post, and so it belongs here.

[ProfessorTomoe 1,308]

10 hours ago, The Old Hack said:

In other words, it is a therapeutic and medicinal post, and so it belongs here.

Theraputic and medicinal. I'll take both, as long as they don't involve needles or pills.

It's 3:53 a.m. CDT, and I'm waiting for my next hydrocodone dose at 4:00 a.m. CDT. Won't be long now and I'll be zonked out again, but at least I won't be in so much pain.

Brace yourself for another theraputic and medicinal post.

You know, back when I broke my ankles, I used to be able to drive with hydrocodone in my system. Not anymore. Not when it's mixed with the following multiple-times-a-day cocktail:

• Aripiprazole (Abilify)
• Atorvastatin
• Trintellix
• Bupropion (Wellbutrin)
• Buspirone (Buspar)
• Clorazepate
• Hydroxyzine
• Lisinopril
• Lorazepam (Ativan)
• Levocetirizine (Xyzal)
• Metformin
• Zolpidem (Ambien CR)
• Topiramate (Topamax)

Add in a few other pills that I have to take in case of emergencies and you get someone who can't stay awake for periods longer than a few hours at a time. Seriously, I take all of the above, some of them multiple times a day. Ativan I take 4 times a day, while I take the Wellbutrin and Hydroxyzine 3 times a day.

So, now, my life on a non-doctor-visit day looks like this:

• Wake up around 4:00 a.m.
• Take Hydrocodone
• Get in some quick computer time before it knocks me out
• Fall asleep
• Wake up a couple of hours later
• Take my morning round of medicines
• Get in some computer time before they knock me out
• Fall asleep
• Repeat in six hour increments, taking non-Hydrocodone meds on their own schedule (and dealing with cat on his own schedule)

This is why you'll see me post at all hours. I can't predict when I'm going to be awake or asleep, but I can predict that I will be asleep multiple times a day. This, plus the fact that my right leg is affected by the spinal nerve(s) at the root of my problem, renders me unable to drive. Or do much else, for that matter. (That's another reason you'll see me post like this—it's theraputic, and I apologize for making you all my therapists.)

I've taken my hydrocodone now. Going to go ahead and get a jump start on sleep so I can at least be awake when Mrs. Prof is.

[The Old Hack 2,448]

1 minute ago, ProfessorTomoe said:

Theraputic and medicinal. I'll take both, as long as they don't involve needles or pills.

It's 3:53 a.m. CDT, and I'm waiting for my next hydrocodone dose at 4:00 a.m. CDT. Won't be long now and I'll be zonked out again, but at least I won't be in so much pain.

Brace yourself for another theraputic and medicinal post.

<snip>

Prof, once again, no need to apologise. Anyone not interested in assisting can skip this thread. That is a very intimidating medical schedule and I can understand why you find it more than a little overwhelming. But as long as it does its job and keeps you among us so you can continue to make these forums a better place, I am all for it.

Thank you for keeping us posted. Never hesitate to vent here.

[ProfessorTomoe 1,308]

7 minutes ago, The Old Hack said:

But as long as it does its job and keeps you among us so you can continue to make these forums a better place, I am all for it.

As long as I'm keeping the forums better and not worse. Thank you.

I found the following on Facebook yesterday:

19 Posts People With Chronic Pain Want to Write on Facebook, but Don't

(If you go there, the X to close the pop-up should be in the pop-up's top left corner, not the top right. Sorry.)

Number two really applies to me:

Quote

2. “I’m sorry if you’re sick and tired of seeing my posts about my health. Try to remember I am actually sick and tired every single second of every single day. And because of that fact I have zero social life. So sometimes just typing it on a screen and getting it out there helps. If it bothers you, just scroll past. But if you care… leave me a few words of comfort.”

tOH, you and the others who support me here are the epitome of the words at the end of the paragraph. I am thankful beyond words to have people who actually care. You help me get through each day like no pill or shot ever could. Seriously—thank you.

 

[mlooney 3,417]

I have just started a change in medication. One of the "new" drugs is Abilify. On the side of the pill bottle, in a freaking huge font, is "May cause dizziness."

Yes, yes it does. Back to planning my life around being within reach of a wall or other large heavy object at all times.

[ProfessorTomoe 1,308]

1 hour ago, mlooney said:

I have just started a change in medication. One of the "new" drugs is Abilify. On the side of the pill bottle, in a freaking huge font, is "May cause dizziness."

Yes, yes it does. Back to planning my life around being within reach of a wall or other large heavy object at all times.

What dosage have they got you on? Mine's 5mg. I can't remember ever experiencing dizziness from it.

[Don Edwards 548]

22 hours ago, CritterKeeper said:

*hands Prof a book with large, friendly letters on the cover*

22 hours ago, ProfessorTomoe said:

If that book truly existed, I would thank you for it. In reality, well ...

I think this may be the book referred to...

[ProfessorTomoe 1,308]

3 hours ago, Don Edwards said:

I think this may be the book referred to...

Yes, The Hitchhiker's Guide to the Galaxy. I was just playing off that, wishing that the Guide were a real book and not something Douglas Adams invented.

[Pharaoh RutinTutin 1,586]

2 hours ago, ProfessorTomoe said:

wishing that the Guide were a real book and not something Douglas Adams invented.

What do you mean "Invented"?  The Hitchhiker's Guide is a product of Megadodo Publications on Ursa Minor Beta.