[pliepla]

I recently got some bad news: a potentially life threatening heart condition and a series of inexplicable seizure-like events.



Mo (cardiologist)
As long as we don't know the precise extent of your heart condition, I would strongly advise against any medication that could provoke arrythmia or palpitations.

Tu (neurologist)
This first test shows nothing but at least until all the MRI-scans are done I would advise against the use of all psychiatric drugs.

We (psychiatrist)
Doe these ailments frighten you? If your fear becomes any worse, just give me a call and you can pick up a prescription for xanax or an alternative.

To look on the bright side: it might do me in but at least I will have gotten the prescription for free.

[*Beth*]

Yep. That pretty much sums up the state of medical stuff right now. Seems that things are really screwed up. Nevertheless, I wish you the best.

[bpcyclist]

Why on earth do they not know the nature of the cardiac issue? That could easily be completely finished in a day!

Any benzo is totally safe and okay with a seizure disorder. It might actually even help that disorder, depending on the dose.

I adore Ghent!!!!

[pliepla]

Originally Posted by bpcyclist

Why on earth do they not know the nature of the cardiac issue? That could easily be completely finished in a day!

Any benzo is totally safe and okay with a seizure disorder. It might actually even help that disorder, depending on the dose.

I adore Ghent!!!!

They know what it is: hypertrophic cardiomyopathy. But I still have a series of tests to determine how bad it is. From what I've read the last few days, some patients are on meds and still run marathons while others have to move because they're not even allowed to take the stairs to their bedroom anymore. I will probably be somewhere between those two extremes ...

I am - of course - extremely lucky to be living in Ghent!

pliepla, Maybe avoid any psychiatric drugs for now, until you get all of your test results back. Just to be on the safe side. Do you like chamomile or mint teas? Those are great to drink when you are stressed out.

Sorry to hear about your diagnosis. Hopefully, you'll be able to continue your lifestyle without too much change to it.

[pliepla]

Originally Posted by Motts

pliepla, Maybe avoid any psychiatric drugs for now, until you get all of your test results back. Just to be on the safe side. Do you like chamomile or mint teas? Those are great to drink when you are stressed out.

Sorry to hear about your diagnosis. Hopefully, you'll be able to continue your lifestyle without too much change to it.

I hope to avoid them forever ... I always have more side-effects than anything else and after all, the start of this history has been documented in the appropriate topic. But I'm afraid there will always be a doctor wanting to prescribe his miracle pill that is supposed to cure me without any side effects.

Well, I had taken up sports a month ago and that was the first positive sign in over a month. If the whole thing is triggered by the psychiatric medications, there is a slight chance I will recover. If not (an tbh, this is not a "known side effect" although in general it is a less common heart condition than arrythmia to start with), there's virtually no chance I'll ever go mountainbiking in the woods again. So I'm afraid I'll be in for a major change anyway.

Most of all, I think waiting for two more months will be hell ...

What if you went mountain biking with a friend or a group of people? Would that ease your anxiety? If its something you truly enjoy doing, and you've been playing sports for the past month with no heart problems, then why not try to see if you can do the mountain biking activity with someone or a group? Have a plan in place in case anything goes wrong.

Can you get weaned off your current psychiatric drugs? Do you really need to be on them? Maybe they are causing these heart problems in the first place and its not a genetic or hereditary cause? Will your medical scans and tests pinpoint what is causing the heart problem?

[pliepla]

Originally Posted by Motts

What if you went mountain biking with a friend or a group of people? Would that ease your anxiety? If its something you truly enjoy doing, and you've been playing sports for the past month with no heart problems, then why not try to see if you can do the mountain biking activity with someone or a group? Have a plan in place in case anything goes wrong.

The problem is that this is the heart condition many young athletes die from, out of the blue, without any warning. I could go mountainbiking and return home safely but I could just as well drop off my bike and die within a minute. I could arrive at home, go to sleep after a ride and not wake up in the morning and I could never experience any symptoms again. Nobody knows, at least not until I've had some extra tests.
To me, it is not a matter of fear but a rather matter of morals. And to me, dying in the arms of a helpless friend seems terrible, I would never want to place that burden on anyone.
I suppose doctors are trying to keep me on the safe side until all the information is there and maybe it's not half as bad as they told. But for now, acting on the information I recieved, it's no sports, no alcohol (not that I'm a big drinker but this is the first time ever I've really missed a glass of beer), no sex (I'm single so that's quite easy), no stress (that's a bit harder), no coffee, no tango dancing (covid and social distancing are taking care of that) ... for two more months.

Originally Posted by Motts

Can you get weaned off your current psychiatric drugs? Do you really need to be on them? Maybe they are causing these heart problems in the first place and its not a genetic or hereditary cause? Will your medical scans and tests pinpoint what is causing the heart problem?

I am very prone to having side effects. That is why I took two antidepressants in the lowest possible dose. It was supposed to be a method to avoid the side effects. At some point, I was clenching my teeth so hard at night that a tooth that had been repaired a few times lost the larger part of its crown. That's when the dose for one of them was lowered and the other was set slighly higher. It was also the moment I became incredibly tired and two weeks after, I had my fainting-incident.
And honestly: I'm not quite sure they actually worked.


The least you could say - and my psychiatrist confirms this - is that the timing suggests my medication had something to do with it. But only arrythmia is documented so my uneducated guess is that it will be hard to prove anything.

As for weaning off: I was on the lowest possible dose. It seemed safer to stop immediately. I was scheduled for three appointments with my GP in the first week. I've come through this without any adverse effects, it seems.

Well, to put death into perspective per your thread; My friend's father had a heart attack (no history of heart disease in the family, no heart problems with his dad) while driving in another state. He realized while driving on the highway, that he was having a heart attack, so he pulled over to the side of the road...and died, right there, in his car, alone, no family around him. So, death can happen at any time for any reason.

So, you've successfully weaned off both psychiatric medications? That is good. This way, now you don't have any medications to cause any side effects on your heart. And if you still have the heart problems after, then you could possibly rule out your two psych meds as the cause. There are definitely tests that can determine if your heart problem is genetic or hereditary or induced by medication. Not sure why your cardiologist won't perform those tests on you. They can't treat you properly if they don't know what caused it.

So you aren't still playing sports now that you started a month ago, correct? That is good then. No alcohol is also good b/c that is a depressant and can actually be a stimulant on the heart and make the heart race in some people (it did that to me, so I stopped drinking beer and hard liquor). The no sex thing is no big deal (makes sense they said 'no' to it). No stress (harder but doable if you avoid stressful triggers). You can drink decaf coffee can't you? And no aerobic activities like dancing, that makes sense too.

Good luck with it all. Keep us posted.

[pliepla]

I have a coronary catheterization the day after tomorrow. To me this is the most scary one. I don't know wheter I will get any results tomorrow or wheter they will all be bundled at the end of August.

Hang in there! You can do it! You’ll be ok👌 !

[pliepla]

Originally Posted by Motts

Hang in there! You can do it! You’ll be ok👌 !

The booklet I got says I will sleep through it

Lolz @pliepla. That is good that you will be knocked out when they catheter your heart. You are a warrior. You'll get through this AND you'll get your kitty afterwards who will be your shadow and enrich your life in ways you can't imagine and will help you recover from this stressful procedure with his/her companionship. You are still going to adopt your kitty, aren't you?

[pliepla]

Originally Posted by Motts

Lolz @pliepla. That is good that you will be knocked out when they catheter your heart. You are a warrior. You'll get through this AND you'll get your kitty afterwards who will be your shadow and enrich your life in ways you can't imagine and will help you recover from this stressful procedure with his/her companionship. You are still going to adopt your kitty, aren't you?

He's arrived and gone into hiding ...

Awww. He needs to adjust to his new home. Give him a week or two...

[spencersims]

I really feel sorry for you, I also have little sister with weak health, I know how bad it must feel

[mugwort2]

I wish you the best with your heart catherization, all your doc appts.

[pliepla]

The (temporary) results from my heart catherization: I'm healthy but not yet capable of sports. Always having relied on my mountainbike as a primary lifeline, this is a major setback. Still one test (MRI) in August ...

Tomorrow, I've got an appointment with the psychiatrist. I have informed him that I no longer take wellbutrin (because of seizures/convulsions/spasm/...) and that I no longer take duloxetine (because of my heart). As the convulsions had died out over the course of a week and started again two weeks after my last dose of wellbutrin (150 mg), he ruled out the possibility of my medication being at the root of my (possible) neurological problems. He seemed pretty eager to put me on wellbutrin - and prabably a higher dose - again when I talked to him on the phone, despite the advise of the neurologist (I have two brain-related MRI's in July). I'm not looking forward but I guess there's no way around. It's just sad that side-effects don't seem to be a thing in the psychiatrist's universe.

And to be honest: this is the best psychiatrist I've ever had. Others don't even write down (I assume they are just calculating the size of their next swimming pool in relation to the severeness of a patient's complaints) what is said. This guy, well at least he remembers or goes through his nots before a consultation. But he does share the same fixation on pills and the blind spot for side-effects. I even warned him I would at some point get convulsions when on Wellbutrin ... and so I'm back to the same rant on psychiatric drugs: it's all side-effects and no effects and a battle against the medical establishment I'll never win.

Please do not become some psychiatrist's medication guinea pig. I have a negative bias towards all psychiatric medications and the professionals who prescribe them. You have a documented heart condition. You don't need an antidepressant. You need heart medication. And, to fill the void in your soul you have a kitten (right?), your artistic pursuits (right?), you have shelter (your own place, right?) and your mental and physical health (even though your heart condition limits your ability to exert yourself). You can do other physical activities that are not as strenuous. My cousin was born with a hole in her heart. She walks every day and she does yoga and even swims. She doesn't take any psych drugs, either. She eats all fresh food that she cooks herself. She also takes 4 heart medications and gets her heart tested every year.

Time to think outside the box. So you can't mountainbike anymore. Replace that with another lower impact athletic activity like walking, swimming, or yoga or even rowing. Those are low impact cardio activities, not high impact which is what your cardiologist told you to avoid, correct?

Obviously, if you decide to pursue the psych meds, just be careful. Glad that you got your early test results from your heart catherization. They are not terrible results.

[pliepla]

Originally Posted by Motts

Obviously, if you decide to pursue the psych meds, just be careful. Glad that you got your early test results from your heart catherization. They are not terrible results.

It won't be my choice ... it is a bit how our system works here: access is universal, we don't need a private insurance. The downside is that availability is low. When your GP diagnoses ou with depression, he sends you to a psychiatrist. You'll get an appointment after 6 to 8 weeks. They give you pills. No matter what. I have a long list of medications and the side effects I suffered. They just sit through it and prescribe what tyey're used to. You either accept it or don't get a treatment. It's only when things turn nasty (like in my case), that they will listen. Not to the patient, but to their colleagues. That is what started this thread in the first place: I got the advice to stop one medication from the cardiologist, to stop another from the neurologist and the suggestion to take something else from my psychiatrist ...

In my experience, side-effects are usually an extra hindrance in my recovery, up to the extent that I now feel I will never recover because severe sleepiness (14h and more a day when working fulltime) worked against me so badly when my chances at recovery were at their best.



Apart from that, I agree with all you said.
Be it that saying goodbye to the sport that has coloured my life up to now will be a tough nut to crack. I will still have enough on my plate in the near future and I really don't need the extra challenge of having to battle the side effects of some new pill. Sadly, I'm afraid they won't listen ... I always wonder if "they" are the same elsewhere.

I sympathize with you pliepla. Giving up a sport that you have a deep connection to isn't going to be easy. I get that. Hopefully, you can find some low impact aerobic activity that will replace your mountain biking since being active is something important to you.

That really stinks about your country's healthcare system's policies. I mean, it sounds like, patients aren't given any control over their own healthcare there. That's scary. Well, can you at least petition to have your cardiologist and neurologist say "no!" to the GP and Psychiatrist about not prescribing you an antidepressant? Isn't there an appeals process you can go through?

[pliepla]

Originally Posted by Motts

That really stinks about your country's healthcare system's policies. I mean, it sounds like, patients aren't given any control over their own healthcare there. That's scary. Well, can you at least petition to have your cardiologist and neurologist say "no!" to the GP and Psychiatrist about not prescribing you an antidepressant? Isn't there an appeals process you can go through?

It's not that we don't have any freedom of choice. It's rather that, especially when it comes to psychiatric care, the need for care exceeds the number of care-givers. The consequence is that, once you find a therapist, you stick to him and that psichiatrists are bound to give you medication, no matter what because they can only see you once in six weeks.
At least, in this system, I can still pay the bills. I think in other countries, I would have been screwed years ago ...

[Prycejosh1987]

All the best, exercise the heart with activity as much as you can. If possible.