Up Against The System Again

One of my eldest son's medications is clonazepam.  Ordinarily, this drug is prescribed for epilepsy.  But being a benzodiazepine, it is also used for catatonia.  And that is a condition I would not wish on my worst enemy.

My eldest lad has a long history of depression and anxiety, OCD and more recently, catatonia which he developed after going cold turkey of his medication a couple of years ago.  This is something he has never really got over.

For those unfamiliar with my previous stories on the subject, his "episodes" (if you can think of a better word, let me know) begin with a tremor that develops into a full body tremor.  It looks like he is having a seizure, but he does not lose consciousness.  These full body tremors can last for hours.  During this stage he loses his ability to speak and usually cannot speak for several days.  He zones out; his perception of his environment changes.  He can lose his ability to walk and has had to be hospitalised after one of these catatonic stupors to relearn how to walk.

So it is not a nice thing to go through.
In one of my previous stories I spoke about how no-one wants to call catatonia by its name. I accused the system of regarding catatonia as the c word of psychiatry.  It is never mentioned by name.  I learned about it on the internet, and just as well I did, because I also learned how to treat it.  By that stage, the psychiatrist was planning ECT treatment, but I started our own programme and it never came to that.

So why this present story; what's the latest, I hear you ask.  Well, Joe has a new psychiatrist as the old one retired.  *sigh* What do parents know?

Well, because benzodiazepines are drugs of addiction, it was considered desirable to start getting Joe to reduce his intake.  Just by a quarter of a tablet.  Gulp.  I know what happened the last time we tried reducing his intake!

Seeing my discomfort, the doctor assured me that if Joe "gets a little shaky" it is just withdrawal and he has to persist with it.

Joe got a lot more than just a little shaky as it turned out but I am not going to go into that here.  This story is about the sheer unhelpfulness of the system.

Joe's new psychiatrist has a practice much closer to home than the last one we went to so we booked his next appointment at the closer one.  Only there is a delay to see him there as a first time patient of that particular practice.  That I can handle, as long as Joe has enough medication to hold out.

As it turned out, he didn't.  He ran out of clonazepam.  So I went to our local pharmacy to see if they would give us an emergency supply to carry us over to the next day when we could phone the psychiatrist and get him to fax them a script.  No, they would not, because clonazepam is a drug of addiction.

So we tried to get Joe's GP to send a script.  His condition was two days' notice.

So we had to go to the all night superclinic and see a doctor there.  And she phoned Medicare for an authority to prescribe the medication.  They would not give it.  Why?  Because clonazepam is a drug used for epilepsy.  They refused to acknowledge its use for catatonia.

We did get a script.  We were told it would be very expensive to buy it without the medicare authority.  (That was garbage, by the way.)

But what annoys me is, the lack of willingness to acknowledge that benzodiazepines are used to treat catatonia and facillitate needy patients getting access to their necessary medications.

I literally burst into tears at one stage of this drama at the thought of what would happen to Joe when deprived of this drug.
perseverer perseverer
51-55, F
7 Responses May 21, 2012

Have you looked into natural remedies for treating him? Sometimes drugs are the best thing in some cases, but sometimes natural medicine works much better - and without a lot of nasty side affects. Natural stuff can be a lot cheaper too. My dad had cancer and while he did do conventional treatments, the natural stuff he took really helped to minimize the pain, keep him from feeling sick all the time and it slowed down the cancer. Maybe something natural would help Joe cope better. At least it might help him while you are going through red tape to get his medications.

It is precisely because someone gave such advice to my son that he ended up as sick as he has been. He was doing the best he had ever been and was working in New Zealand for the army. The people he was staying with are heavily into natural therapies and made the suggestion to him. Going off his medication made him extremely ill. It nearly killed him. If someone as sick as my son does decide to go on "natural" remedies instead it needs to be done under close medical supervision. The "natural" alternative to my son's medication is St John's Wort, but the problem is this. St John's Wort is high in serotonin, and so is fluoxetine. If the one is being taken alongside the other there is danger of serotonin poisoning. Also, the amounts in St John's Wort capsules are not as regulated as they are in fluoxetine. So the danger of serotonin poisoning is high in the case of someone like my son. But I appreciate your point. Sometimes so called natural remedies are more effective; it depends on the individual. But no-one should ever come off an existing medication unless it is under close medical supervision.

I didn't say he should come off medication - and my dad didn't either, but sometimes the *right* natural remedy can work well and they can work in combination with medications too. I'm not saying that *all* natural remedies work in all cases. But I'd like to point out that just because St. John's Wart was toxic to him, that doesn't mean nature doesn't have something *else* that might have helped him. Not to argue, but I'm just making a point.

But I do get what you're saying. Things need to be closely monitored. Even when switching from one medication to another, things can go wrong. For example, my dad had his last congestive heart failure and heart attack episdoe because he was abruptly switched from one medication to another. the old one worked but was slowly damaging his liver, so the doctor wanted to try something more "gentle'. The new medication did not work and so he died. I can't say the doctor didn't mean well, but he should have been closely watched. Also, he had a bad habbit of not calling the doctor about his symptoms when things were not working. they did not know until it was too late.

You are absolutely right, and I apologise for over reacting. It was a knee jerk reaction. Those people my son stayed with were assertive natural therapists. Whenever their son came to stay with us there was a big list of what we could and couldn't give him to eat. He once had a slice of chocolate birthday cake and his parents blamed the cold he got afterwards on him having eaten that cake. They were quite snippy with me about it. You can imagine how I felt about them having advised my obsessively compulsive son about going on to natural medications. He didn't seek medical advice; he just did it. He suffered a catatonic withdrawal that nearly killed him. It has take three years for him to stabilise and we had to employ a full time carer for him for over a year. I do realise that your approach is a different and balanced one, and it is sound advice. Thank you for sharing.

That's ok. I can understand your reaction. It sounds like the people you were dealing with were health extremists. They are not real natural doctors and I agree they went too far. In fact, my mother got sick, partly because of some nut like that who wrote this stupid book about what to eat and what not to eat. It was so extreme, but she took it very seriously and changed her diet and tried to impose her diet on everybody else. She thought she was benefiting everyone, but she made herself sick and we refused to fully adopt or go along with her crazy diet. So I can understand why you would be put off by this type of person. They were the same type that influenced my mom and caused her to become ill. I do agree that these are crack pots and they are not what I was talking about. They give natural doctors a bad name, but not all natural doctors are like this at all, so it's good to remember that and ignore the crazies.

2 More Responses

Thank you. I am very aware of the power of prayer for us and I sincerely appreciate it.

I will be praying for you all.

Thank you for reading this, DenteAvvelano. In Australia, in my part of Australia at least, we do not have the luxury of getting another doctor as there is a shortage of psychiatrists.<br />
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On the positive side, the doctor did admit later that he was wrong. And that is most unusual!

Yeah I feel badly for your son... catatonic states aren't a joke and I don't understand how they would do anything like that.

I did notice you avoided ECT... sometimes it can be helpful...

Yes, and I was open to it. But they only like to use it as a last resort.

" Seeing my discomfort, the doctor assured me that if Joe<br />
<br />
"gets a little shaky" it is just withdrawal and he has to<br />
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persist with it."<br />
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Run... this is not sound medical advice... seriously this is dangerous as your son is in a fragile state to start with... please advocate for your son and get a new doctor!

Thank you for reading, clarkee. You obviously know what it is like to feel such anguish.

its a difficult problem perseverer. not even perseverance will penetrate the stonewalling of our medial systems. im glad you were able to acquire what joe needed. when all the doors closed on my late husband i cried to the doctors and begged them and ive yet to find a way to accept that these things do happen. its inexcusable.