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147426 tn?1317265632

Cautionary Tails

I went to an inadvertently self-imposed hell last week.  Partly it is the danger of knowing a little too much medicine in another field and partly just accident.

Okay, I have what doctors call a Poly-Pharmacy Syndrome.  It seems like I march through life adding on new meds right and left.  I've heard you guys talk about it, too.  A new symptom here or there and there is a twinkly new drug to catch our eye and add to the medicine dispensers.  Ohhhh, a another new symptom and another new med.  There is so much twinkling going on that my medicine box glows in the dark.  I would welcome Tinker Bell at this point.

Well, to our credit we do often ask what all these meds are doing to us and whether any of our symptoms are not MS, but rather side effects of a toxic medicinal regime.  I do this less than most because I do have a passing knowledge of basic pharmacology, have handed out my share of scripts and was raised in a household where my father felt that, not only was there a pill for all ailments, but more is better than less.  Now, in his elder years, we have had some medical emergencies arrising from his tendency to take pills by the handfull - aspirin, potassium, codeine, acetominophen.

So, I periodically go through my meds to see if there are any I can do without.  I have come off sleeping meds, extra anti-depressants, meds for vertigo, ....the point here being that I have tried to keep the glow of glittery medicines down so we are not raided for being a pot-growing house in suburbia.

Recently it came to me that I had not had twinges of the Trigeminal Neuralgia for many months.  That is why I take the Tegretol (carbamazepine).  Last year I tried to stop it and the twinges returned.  But, it is worth another try.  So, I began very slowly decreasing it.  I told my neuro about it who was okay, but said to restart it at the FIRST tweak of pain.  I came off of it a couple weeks ago.  

Now, this has not been a great summer for me - better and worse than some of you.  The complete urinary incontinence has settled into what is "just my life".  I'm no longer totally aggravated by the constant purchase and use of the products and the 10 visits to the loo daily, plus the carrying around of an overnight bag with incontinences products, at least two changes in clothes and clean up supplies.  It just is the way things are.  The med, Oxybutynin helps with the Epic Floods.  I mop floors only about twice a week now instead of twice a day.  THAT was really aggravating.  And the usual side effects from such a med - even doubled - were minimal.  Not much of a dry mouth nor much constipation.  This was a sparkle from the med box that I didn't mind.

Suddenly, I was sick.  Indescribably sick - literally - I couldn't describe it.  My whole head was about to crack open, my skin felt tight and hot, yet the movement of air from a fan was horridly painful and uncomfortable.  I was nauseated.  My head roared.  I was unsteady and dizzy - really unclear where the ground was or exactly how the ground met the wall.  Chest pressure - not pushing in, but pushing out.  

I recognized this.  These were the same symptoms I had on even the normal dose of Detrol LA.  But, I had been tolerating the Oxy at double dose for a couple months.  The symptoms seemed systemic - all through my body - and not so much neurological.  I stopped the second dose of Oxy, but didn't feel better.  Nothing felt good and nothing helped.  I stopped the Oxy completely.

Over about four days the horrid sense that I was dying of jungle rot or something similarly evil disappeared.  And the flooding returned.  The 3am moppings to save the hardwood floor, washing loads and loads of laundry.  And the mice returned.  As some of you might remember, several sad mice died in the floods of the springtime.  Tony, our lazy, lovable lummox brought in his hunting prize one morning just before dawn.  It was great fun tossing it into the air and catching it on the way down.  Yes, the association between mice and incontinence was real.  And then in great cat fashion, he presented me with his prize in my recliner.

I have no intention of becoming a Mouse POW camp.  Tony had not even taken the courtesy of killing the mouse first.  Little field mice have very tiny and soft feet, but the scurrying roused a primitive "scoot-away reflex" and that is impossible in a recliner.  I turned on the light, and flicked the critter away, while yelling at Tony.  Tony, is a heedless big guy who responds not at all to scolding.  He's sort of like your college roommate who walked around in his boxer shorts and drank beer for breakfast.  As you scold and yell he looks lovingly up at you and says, "Hi, Mom!"

Miraculously, the symptoms went away as the Oxy got out of my system - and curiously, we haven't had a mouse since then either.  Since I could think again I tried to sort out what had happened.

Now, this is what I want all of you to know about.  And, yes, somehow the mouse story seemed pertinent.

When the pharmacist checks for drug interactions, I wonder if most of us know what that means.  The most common interaction is that one med affects how well another med works.  Like a med containing calcium (TUMS) will render some antibiotics (Erythromycin and others in its class) completely useless because they bind together in the stomach and are pooped out together.

Well, there is another way and it is not important that you understand exactly what happens, but it can play REAL havoc with your meds.

Tegretol is metabolized in the liver.  It also "induces" or rev's up a set of enzymes in the liver that can metabolize other meds faster.  Its called the P450 system.  So if you take a medication that is handled and metabolized by the P450 system, your levels will drop of that other med while you take Tegretol.  That other med may appear to lose its effectiveness.

So, you guessed it.  Oxybutynin is metabolized by the P450 system.  If the P450 system is all rev'ed up, then Oxy will be elimated from the body faster.  So, I have been on a good hefty dose of Tegretol for about two years now.  I start Oxy and it doesn't work too well in the regular, 24-hour single dose.  So I step up and take it every 12 hours.  I tell all my doctors and no one seems to think this is out of the ordinary.  Another member here also mentioned that he was on the double dose also.  Makes sense.  People often respond to meds at different doses than other people.

Soooo, I dropped the level of the Tegretol to zip.  None there and after a few days the P450 system no longer has something driving it to work in hyperdrive.  The double Oxy dose is no longer whizzed out of the body so fast and the level becomes toxic - and I feel like I'am going to die.  I stop the Oxy and the mice show up.  The little mysteries in life start making sense.

Continued below

Quix
13 Responses
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198419 tn?1360242356
Holy C R A P Doc Q.

These complexities are so very important!

And, I'm so grateful you wrote this up for us. We learn so much from what you dissect and explain.

thank you, thank you, thank you!

-Shell

Helpful - 0
721523 tn?1331581802
Got a cousin that is a professor of pharmacology,  sending her a list.......... :-)
Helpful - 0
667078 tn?1316000935
I surprise my Doctors by knowing more about the drugs I am on than they know. I kept them from killing me my last hospital stay when they tried to give me all my medications plus IV morphine which I know would have cause respitory arrest. I asked the nurses to just humor me.

My new drug Tripleptal interacts with another drug I am on big time so I decreased the other drug. The doctor looked it up and said I was right.

Alex
Helpful - 0
572651 tn?1530999357
Thanks for the tale, Q.  I love storytime with you.  

The problem with drug interaction is incredibly complex.  Sometimes it extends to food - such as grapefruit should never bee eaten/drank with most blood pressure medicines.  

There is a website I use for my drugs and they do a pretty good job of looking at interactions.  They have also sent me an email when one of my drugs was on a recall list.  You can set up an account here ----

http://www.iguard.org

Q- here's hoping Tony doesn't bring any more gifts to you in a long while.  Keep healing.

Lu
Helpful - 0
1312898 tn?1314568133
Good Lord Quix!!

What a horrible, awful and scary week you had.

I do notice when you are here or not, and I was afraid it was the bladder problem.  You obviously took yourself off the medication with the right intention.  I have never heard of the type of drug interaction you describe.  How scary that must have been.  

The mouse thing--who knew!!!  I can't imagine cleaning up and dealing with mice at the same time.  I had no idea mice like urine.  Thanks, I appreciate knowing that up front.

It's amazing that you can find the dry 'gallows' type humor.  I'm sure it wasn't fun at the time.  

I stopped taking my Effexor once, I thought I shouldn't be taking it since I wasn't depressed anymore.  I got sick and thought I had the flu, only to find out that Effexor withdrawal causes flu like symptoms.  

Glad you have everything worked out now!  I'm sorry you went through all of that only to find out you had to go back on the Tegretol.  

Hugs,   Red

Helpful - 0
867582 tn?1311627397
Quix,

My head is spinning from your pharmaceutical adventure!!  But at least your kitty brought you field mice, which as I remember from childhood antics in Pennsylvania (just before I was bitten by them) are quite cute little critters with endearing ears.  The trophies my outdoor kitty used to proudly bring home to us were great big rats!!!!

My mom was on so many pills she could have opened her own neighborhood pharmacy.  Out of your med?  Just go visit my mom!!  She'd have it!!

Watching what my mom went through, the new symptoms accompanying each batch of new pills, I learned, from her example, to avoid medication unless radically necessary.

In fact, I now subscribe to a great little monthly newsletter by Public Citizen called "Worst Pills, Best Pills News".   Its editor is an M.D. - Sidney M. Wolfe - who heroically has fought the FDA many times - warning the public about dangerous (yet approved) medications long before the FDA finally would take the medication off the market (after many lives had already been lost).  

Dr. Wolfe also often discusses dangerous drug interactions and other topics.  For instance, the August newsletter brings to our attention the fact that the CMEs required for physician license renewal are often underwritten by the pharmaceutical or medical device industry, "with the intention of increasing the sales of their drugs or devices."

It was from Dr. Wolfe's newsletter that I learned about the dangers of bipolars being on SSRIs (Prozac, Zoloft) - a important discovery that more than paid for the newsletter subscription price (which is modest)!!

I have mentioned Dr. Wolfe's newsletter to several of my own physicians and, not surprisingly, many already subscribe to it and feel it is excellent.   With the number of new medications constantly flooding the market, it is an essential tool for sorting through fact and fiction.  

A rule of thumb is:  Avoid new medication like the plague!!!!
It takes about 7 years to really know what repercussions/side effects a new medication brings. In other words, if you take a brand new medication, you are essentially a guinea pig - helping to complete the research that wasn't finished before the med was approved.

The "Worst Pills, Best Pills" phone number is: 800-289-3787.  They also have a website you can subscribe to (but I like the newsletter because I'm a technophobe):  www.worstpills.org

And a happy and safe pill popping to you all!!!

WAF
Helpful - 0
645800 tn?1466860955
I have never been one that likes to take medications, especially pain medications. Part of the reason is that I tend to be very sensitive to most medications ( I E need lower doses ).

I also have found over the years that I don't react in a normal fashion to thing. For example caffeine makes me sleepy and if I have too much it will actually put me to sleep. I first discovered this when I was a teenager. I had taken some no-doze ( caffeine pill ) when going golfing with my dad and within minutes I was sound asleep. This has held true throughout the years when I drank coffee and sodas with Caffeine. If I drink too much I always get very sleepy. So now I only drink decaffeinated drinks.

As such I am one of those people that do adjust my medications ( usually lower doses ) and let my doctors know about the changes I make. One example of this is with my gabapentin. My last Rx was for 100mg 3 times a day, but I am only taking a total of 200mg as the 300mg makes me too groggy during the day to function. As a result my tremors are not fully under control but I can function. And yes that is a very low dosage which my doctor Rx for me as he knows I'm sensitive to meds.

Dennis

Helpful - 0
1386048 tn?1281012333
unreal what you have been through this last week!  

glad to hear you got it all sorted out and wonderful advice for anyone thinking of modifying their regime.  

love the stories intermingled with all of this about tony and the mouse!!  

soooo glad you managed to sort it out and are feeling better again.  phew!

xo michelle
Helpful - 0
559187 tn?1330782856
Your story really hit home with what I've been going through lately - not as severe as your case of course but similar.

It brings the question that what do those of us without an inkling of pharmacology can turn to keep this from happeneing?  The pharmacists in our drug stores these days are too busy to even ask us if we have any questions about the drug when we are picking it up.

And our doctor's are not any smarter either when it comes to keeping track of all the drugs they have us on.  I was on 2 drugs and learned from my son who is becoming a pharmacist that there is a serious reaction when combining these drugs.  I asked my doctor about it and she  told me there was no problem taking it. I asked her to check again.  When she checked the PDR, she agreed and changed one of the meds.

Again, we can get ourselves in situations like yours and not even realize its the meds.

How can we be smarter?  

Thanks for sharing your very compelling yet enlightening story.  

Julie
Helpful - 0
649926 tn?1297657780

  Well my goodness if I wasn't worried before I am now! My hubbie and childern are constantly saying that they think I am on too many meds and think that part of my symptoms come from the meds not the MS.

I asked my doctor and she went over the list and said that she didn't think that I could function without all of it. We give you these meds for a reason I'm told.

Well being hard headed I decided to play a bit with some and have completely weened myself of the neurontin and stopped taking the detrol and only use the flomax off and on. I still have a pill box full each day but I felt that I wanted less so I went for it. I do have more of that nerve pain from no neurontin and have to pee with little warning but I fell less tired. Oh yeah I also started taking my full dose of cymbalta in the am to get me going instead of morning and afternoon.

I didn't tell the family that they were right cause I don't think they were. I can tell the specific symptoms for each drug are worse while not on them. The only benefit is less tired from all the neurontin.

I don't know who to ask because my doctor's didn't even catch a ridalin withdrawl last year and they had given it to me and when I said that I couldnt handle the stimulus they just said stop taking. I guess it's wise to ween to avoid withdrawl - my neuropsych told me later that you should always stop taking it slowly - she has college kids in major withdrawl all of the time cause they get it from there friends.

Well this is very important as your story has proved so perhaps I should type all of my meds in to the computer and look for this p450 on the protocol. Is that a good idea?


I just "assumed" that since I get all of my rx's from the same doctor and the same pharmacy that if there were an issues someone would say something. I know you shouldn't *** U Me anything.

Glad you solved your rx puzzle - oh how I wish I had your brain!

Hope your mice go out to play and never return
Hugs,
Erin :)
Helpful - 0
1394601 tn?1328032308
Quix,
I thought about you when you didn't post for a few days and did wonder if you were under the weather.  You know, there is some comfort in having a doctor tell me that they clean their medications and pitch them here and there.  Honest, I don't know if the cure is worse than the illness!  I fear my own neuro is going to toss me out of her office.  Just about everything she has prescribed I have tossed except the Rebif.  Is it my age that won't allow me to take these meds?

I love the little field mice.  We live near a wooded area.  In winter they come here to live.  I have little cages that capture them so I can release them down at the river.  I used to have Boss (my tabby...He has gone on to his next life) that would gently take care of the problem for me and never gave me written reports.  It was best that way.

I will let you know if my neuro keeps me.  She may just say I am more trouble than I am worth.  

And thank you!  As usual your writings bring a smile to my face.  I love your humor!

Sumana
Helpful - 0
Avatar universal
Intetresting stuff Quix. Isn't it funny how there are people like you and your aged father who pop pills willy nilly and not worry, and people like who freak out at the thought of anything more than paracetamol! (Mind you, last time I had one paracetamol with 8mg of codeine  I had a seizure and ended up in an ambulance...so)

I like the sound of Tony. I aquired a new puss this year from the RSPCA (animal shelter). He is 7kgs of ginger  fun and lard. when he's not sleeping, he's harrassing the geriatric spaniel or galloping up and down the hallway making sound effects as if he's a speeding car. Sort of "VROOOOOMMEOW"

His name is Cat. I figured if it was good enough for Audrey Hepburn's ginger cat in Breakfast at Tiffanys, it's good enough for mine.


You haven't done much to alleviate my horror of medicines.

Thanks, dear! LOL

Jemm, the paranoid.
Helpful - 0
147426 tn?1317265632
Question, would I have made the connections faster if I had read the PDR (BIG fat drug book) on all my meds.  I think so.  But, the normal person would not understand the implication of the interactions.  This is the responsibility of our Pharmacists.  We should ask a head pharmcist to look at our meds an inform us, not only of the interactions of our meds right now, but of the consequences of stopping one of them.  As a physician, I know how to delve into the literature and glean some of these things, but do not have the in depth training to see them easily, nor would my neurologist.

I was unable to stay off of the Tegretol.   The facial twinges came back and I took a running leap back onto the med.  I am also back on the Oxybutynin now at single dose.  It is not quite doing the job, and I am considering going back up to the double dose - now that I think I know why it seemed to have turned on me.

But, all this makes me wonder how many of us have stopped a med which was involved in this kind of interaction.  Sometimes this might cause us to stop the wrong med to to make the wrong conclusion about new symptoms.  Had I not thought of liver metabolism, I might have considered all those symptoms which were toxic symptoms of Oxy, to be withdrawal symptoms of coming off the Tegretol.

Well, a lot of words to entrench my leadership in 0N-AND-ON ANON and to explain why we need to control urinary incontinence to control the mouse population in our homes.

Quix the verbal
Helpful - 0
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