Medications and Personalized Side Effects

[YippeeKi YOW !!]

MODERATOR NOTE: THE INITIAL POSTS IN THIS THREAD HAVE BEEN MOVED FROM 'UPDATES AND FOLLOW UPS,' SINCE THEY LED TO A WONDERFUL NEW DISCUSSION

I just haven’t been online much because I’m trying desperately to preserve some energy.

Oh, foof, I'm so very sorry. I know you had high hopes for the srugical intervention, as did we all for you, and for a brief moment there, it seemed to live up to its promise.

This is a miserable, unpredictable, vicious, almost vindictive, major curse of an illness, like something the Olympian gods would have visited on one of their hapless victims.

But remember, things can change. If you're able, keep browsing threads for input from others dealing with some of your same issues, or checking out cures or helps or whatever. It's beneficial to keep hope alive. It's also sometimes incredibly hard.

But right now, the biggest help is probably what you're doing: hunkering down, conserving energy, and using it with your BF and mother, and of course, the inimitable Miss Clara.

I’m not doing too well. I fear I am progressing to a more severe edge of “moderate” and don’t know how to stop the progression. I’m terrified

Have you been able to consult with ay of your Drs re this?

I keep thinking of how badly knocked around I felt for a long time after my spinal surgery, and how desperate it made me feel about absolutely everything. The Drs answer, of course, was to put me on a course of brand new untried anti-depressants, which actually made me suicidal. Avoid avoid avoid.

It was only years later that I learned about the vicious effects of all the drugs used during surgeries, even the ones that dont knock you out completely, whimsically called 'twilight sleep', as well as the antibiotics, etc. I don;t mean to be an idiot Pollyanna (tho I often am .... it's my coping device), but there could be some answers there in the history of the anaesthetics and antibiotics that they used. Of course, you'll have to dig up the information about their side-effects and the duration thereof yourself.

If I can be of any help in that regard, please, please please PM or tag me and let me know what would be of assistance. On m ygood days, I can be a hellatious researcher and would love to put that at your disposal ...

I hope it's OK if I tag you from time to time when I start feeling uneasy. I'll keep it to a minimum ....

Sending you (and your BF and of course, Miss Clara) great wafts of affection and hope and support, and for you, hugs .... OK, who am I kidding. For you and Miss Clara. I don;t know your BF well enough to include him in anything but the affection part, for his hanging in so lovingly and faithfully ....

 

[Sushi]

It was only years later that I learned about the vicious effects of all the drugs used during surgeries, even the ones that dont knock you out completely, as well as the antibiotics, etc. I don;t mean to be an idiot Pollyanna (tho I often am .... it's my coping device), but there could be some answers there in the history of the anaesthetics and antibiotics that they used. Of course, you'll have to dig up the information about their side-effects and the duration thereof yourself.

I also learned about genetics and medications after my cardio prescribed a pharmacogenetics test. The results were alarming and surprising as some very commonly prescribed drugs were on my "never go there" list. I had taken one of them before and indeed reacted badly. Here's hoping that this kind of test becomes more common. Those drugs are now listed in my medical records citing genetic incompatibility. Just saying, aside from common side-effects, meds can have personalized side-effects.

 

[YippeeKi YOW !!]

Just saying, aside from common side-effects, meds can have personalized side-effects.

Again, I totally agree. Unfortunately, a large contingent of Drs haven't got a clue about that, or at least some of their prescribing practices would seem to indicate that. Particularly when they prescribe psychotropic drugs that they don;t really understand even on the easier, most basic levels ....

 

[Rufous McKinney]

Unfortunately, a large contingent of Drs haven't got a clue about that, or at least some of their prescribing practices would seem to indicate that. Particularly when they prescribe psychotropic drugs that they don;t really understand on the easier, basic levels ....

This is a thoughtful ditty on why some of this may be going on.

https://www.wbur.org/commonhealth/2016/12/30/doctors-side-effects-medication

In my personal experience, it is the phamacist who is actually the best trained and paying the most attention to what is being prescribed and some of the hazards thereof.

In 1969, I observed that my parents had outsourced medical care to their physicians. I made a mental note that this was a mistake. No, I'm not extra observant.

That parents have given their small children troublingly dangerous medications (which were never tested on them)....because a doctor recommended it is- well I'm sorry- but what rock have you been living under? (rhetorically speaking). (note the issue of psychological drugs being prescribed by non-psychiatrists).

I would never expect a general physician to even have enough hours in the day to review the details of a single Pharmaceutical, let alone the, oh 100's commonly prescribed.

We are all infomation buried, and its happened in medicine, as well. Burial in minutia, and nobody quite able to breathe.

 

[YippeeKi YOW !!]

That parents have given their small children troublingly dangerous medications (which were never tested on them)....because a doctor recommended it is- well I'm sorry- but what rock have you been living under? (rhetorically speaking). (note the issue of psychological drugs being prescribed by non-psychiatrists).

Worse, that entire school systems would start forcing parents to medicate their children with those same troublingly dangerous and mind altering drugs .... and that's to a fully grown, fully developed mind, not one still unfolding and growing .... or face expulsion, not just fro their school but from the entire school system .... it's just the summit of idiocy and recklessness ....

I would never expect a general physician to even have enough hours in the day to review the details of a single Pharmaceutical, let alone the, oh 100's commonly prescribed.

And yet, that's his job. That's what Drs sign up for .....

I understand all the reasons that make it incredibly difficult, almost virtually impossible, for Drs to keep up, from the mountains of paper work demanded by the local, state, and federal govts, the AMA, the Boards that certified them, the hospitals at which they have privileges, the many and varied insurance companies, etc, to the pressures of tightly scheduled appointments, given the need for recently, and even not so recently, graduated Drs to generate income in order to pay down student loan debt, feed their families, maintain a decent lifestyle, but I keep going back the my original statement here: THAT'S THEIR JOB.

And we put our health and our children's health, and even our lives, into those hands. Hands we believe, or hope, or pray, have our best interests at heart and the willingness to back that up with ongoing education, and an effort to research the seductive sales pitches of the drug company reps and find out what that drug is all about ....

And as far as who's prescribing all those happily portrayed anti-d's (ever watched a commercial that didnt have happy playful people pursuing interesting, fun lives, cause Ive ever seen one., Well, one .... the one with the woman holding up a 'sad' mask, that quickly disappears to be replaced with a happy, laughing face as soon as Doc Whatever whips out his prescription pad ...), you're right: absolutely everyone, from osteopaths to dentists, to gastroenterologists, to gynecologists, to orthopedists, to podiatrists, and on and on and on ....

In my personal experience, it is the phamacist who is actually the best trained and paying the most attention to what is being prescribed and some of the hazards thereof.

Couldnt agree more .... your friendly pharmacist is usually the team member who's is up to date on medications, their side effects, what's contraindicated if you're taking Rx A and your Dr adds in Rx B, which of a certain type of drug has the lowest and friendliest side effect profile. It's worth getting to know him or her. They're a wealth of information, and more to the point, they could save your life ....

It was my pharmacist who alerted me to the many studies being reported on the mortality rates associated with Vioxx, and warned me off of it, very carefully, very subtly, looooong before my Dr even mentioned it to me ....

 

[toyfoof]

I am glad I checked in here, you all are helping me cheer up.

I know you had high hopes for the srugical intervention, as did we all for you, and for a brief moment there, it seemed to live up to its promise.

Yes, there was a magical two weeks or so. I wish I knew what happened. The good news is, my neck is much stronger now, and while I still have some pain, it’s sloooooowly easing with the limited PT I can manage.

@YippeeKi YOW !! I do have my surgical report which would hopefully list all the drugs used? But if something did cause long-term damage, is there anything to be done? I tend to think my problem is the bug I caught in late Feb/early March which had me knocked down bad.

And that bug coincided with tapering off the opioids from surgery, and realizing I had a pronounced dependency on Ambien, which I’d been on for 15 years but didn’t put two and two together that my nightly episodes were withdrawal effects until I’d experienced them coming off the oxy. So I spent a few weeks getting off Ambien, which was rough, and I asked for an anxiety/anti-d med because I was becoming a bit suicidal. So all that has been going on. Too much for this thread.

hunkering down, conserving energy, and using it with your BF and mother, and of course, the inimitable Miss Clara.

In happier news, I did use some precious energy to visit my mom last week, who is fostering a mama cat and her 8 kittens (Mom got the mama while pregnant so had some midwife duties in there). So I got some kitten therapy.

Have you been able to consult with ay of your Drs re this?

I keep thinking of how badly knocked around I felt for a long time after my spinal surgery, and how desperate it made me feel about absolutely everything. The Drs answer, of course, was to put me on a course of brand new untried anti-depressants, which actually made me suicidal. Avoid avoid avoid.

See above re: anti-d. It’s helping me cope. I have appointments with both my PCP and CFS specialist next week and I will be discussing this worsening with them both. I don’t expect any miracles though. As you all understand.

 

[YippeeKi YOW !!]

Here's hoping that this kind of test becomes more common.

Testing for genetic sensitivities to whole classes of drugs, and individual drugs as well, would be heaven !!!

Well, it would be heaven for the patients, perhaps not so much for some Drs ...

You have the most remarkable Drs, @Sushi .... I can;t imagine how long it took to find them, or how much research and leg work went into that .... good on 'ya, as they say 'over there'

 

[Sushi]

You have the most remarkable Drs, @Sushi .... I can;t imagine how long it took to find them, or how much research and leg work went into that .... good on 'ya, as they say 'over there'

At the moment, I only have one remarkable doctor, my electrophysiologist, well actually two if I count the interventional cardiologist who "installed" my MitraClip to stop severe mitral valve regurgitation. After followup, I haven't needed to see him again but he was totally on-board with the significance of genetic medication testing and also really responsive--writing to me on the hospital portal, and phoning me too. The others are from previous locations, but yes, I have had some very good doctors and only one shameful one (one visit was enough!). My great electrophysiologist was actually suggested by a member here, so the only research was looking at her website, seeing that she treated dysautonomia and making an appointment. Hit it off with her immediately. Incidentally, I put my location under my avatar specifically to connect with others in my area and share info on docs and resources--works well.

 

[YippeeKi YOW !!]

Incidentally, I put my location under my avatar specifically to connect with others in my area and share info on docs and resources--works well.

That's just stellarly thoughty of you !!!!