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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 21 of 21. This is the beginning of the thread.
Posted by ronaldo on November 5, 2006, at 6:13:06
Has anyone ever heard of a case of a mistaken diagnosis where a 'patient' is wrongly diagnosed and spends 30 or more years of his life trying to find a drug regime that suits him and makes him feel better? I'm sure there must be one or two cases like this out there. How does one prove that one belongs to this narrow class?
How many pdocs are there out there with successful practices who would be willing and able to address such a case of mistaken diagnosis?
It seems to me that once one has been diagnosed the rest of one's life is spent searching for the right drugs to ensure a decent standard of living.Would it be possible to start from scratch - to taper off all medications - to start from the beginning again? To deal with the original problem, which in my case was pretty trivial. It certainly didn't warrant a life sentence. I realise of course that coming off medications is a very difficult process sometimes. I realise that it might be necessary to take new medications to taper off the old ones. I suppose it could take a year or more to complete the process.
I feel that I am making no progress with my medications. I feel that maybe I belong to this narrow class. Do any of you out there feel the same way and long for a 'holiday' off all the medications? I reckon in some cases this 'holiday' could turn into a permanent way of life - free from medications - YIPPEE!!!
If you are taking drug B to counteract the s/e's of drug A and you are taking drug C to counteract the s/e's of drug B wouldn't it just be simpler to discontinue drug A? To take zero drugs instead of 3?
I realise of course that the class I am talking of is indeed a very narrow class and something of a rarity. I am not encouraging people who are definitely unwell to come off their medications. In my case though coming off my Olanzapine only caused me to have bad insomnia. I am sure this problem could have been counteracted in some other way than just putting me back on the Olanzapine. Insomnia is after all a curable illness. The psychiatric profession seems to have a vested interest in keeping patients on their medication. Here in Britain in the case of manic depressive patients they seem to perfer to keep them mildly depressed because in this state they are easier to deal with and do not cause any problems. I don't want to spend the rest of my life mildly depressed so that I make my life easy for my pdoc. Actually I am thinking of my ex pdoc. My present pdoc is much better.
Sometimes I think the medication is part ot the problem and not part of the solution. Medications are really expensive today. If the psychiatric profession worked to get people off medication, instead of working hand in hand with the big drug companies to get patients dependent on these medications, a lot of patients might be leading much happier lives and costing the state a lot less money. Do we really care if a few drug reps can't afford to change their car every year? Do I care if the chairman of GSK can't award himself a fat bonus at the end of the year or if they can't declare ever increasing yearly dividends for their share-holders?
Can anyone hear the same battle cry that I can hear? Less Meds is Better Meds. Not always but certainly in some cases.
....Alan
Posted by med_empowered on November 5, 2006, at 6:33:09
In reply to Has anyone ever heard.....?, posted by ronaldo on November 5, 2006, at 6:13:06
the thing is...psychiatric diagnosis is BS. I mean, there arent any real tests for these "diseases"; at best, they are helpful guides for the doctor in treatment. As for "starting over"...if you go to a new shrink, with no records and no current meds, you can start over. You would probably want to avoid talking about past meds, etc. but it could be done. Other than that..shrinks are reluctant to review cases. Life off meds is possible--im doing it, and its OK, although i consider meds now and then. All in all, I'd say its better than life on meds was, but this won't be the case for everyone, I imagine.
I hear you on keeping bipolars mildly depressed...here in the US, too, docs are eager to subdue with anti-convulsants, neuroleptics, benzos, etc. Even bipolar depression is treated with antipsychotics and higher dosages of mood stabilizers.
Posted by tensor on November 5, 2006, at 6:52:20
In reply to Has anyone ever heard.....?, posted by ronaldo on November 5, 2006, at 6:13:06
>Would it be possible to start from scratch - to taper off all medications - to start from the beginning again?
>I realise that it might be necessary to take new medications to taper off the old ones. I suppose it could take a year or more to complete the process.
I have been thinking about this. It's a difficult situation. You could either add one med to your regime and you *might* recover in two to six weeks , or you could potentially waste six months on tapering off all your meds, start with new ones and end up at square one.
A part of the problem is that i don't have a year to spend at testing different meds and combos, i'm not getting younger, i want full remission now, i take the side effects.>Do any of you out there feel the same way and long for a 'holiday' off all the medications? I reckon in some cases this 'holiday' could turn into a permanent way of life - free from medications - YIPPEE!!!
It would certainly be interesting to see how i would function without all my meds, at least the AD's. I think my anxiety would be too difficult so i think i would still need clonazepam. It was actually the anxiety that was the problem i was first treated for.
However, i do think i have some sort of deficiency or imbalance in my brain, i don't think i've been 100% well in my entire life. As a child and as a teenager i was often tired, i had poor appetite, was underweight. I had a constant fear inside me, some form of paranoia.
When i was given Remeron around the age of 20, it was extremely activating, i started to grow, both in length and in weight, i gained 20kgs that summer and i was not overweight. Remeron made me more confident and i could focus on a task and felt very motivated. It felt like remeron(or the substances it produced) was the substance my body lacked since i was born.I have given up trying to figure out what i need to feel better. I just pick one med. As Scott(SLS) once told me, "you can't outsmart the brain", which pretty much concludes this.
/Mattias
Posted by ed_uk on November 5, 2006, at 7:07:11
In reply to Has anyone ever heard.....?, posted by ronaldo on November 5, 2006, at 6:13:06
Hi Ronaldo
Why do you think you might have been misdiagnosed? What do you think caused your manic episode?
Ed
Posted by madeline on November 5, 2006, at 7:19:28
In reply to Has anyone ever heard.....?, posted by ronaldo on November 5, 2006, at 6:13:06
A med vacation might be a good thing, but I definately wouldn't even consider it without talking to a physician first.
Have you told your doc that you feel you may have been misdiagnosed? What did they say?
Also, if you think that your doc is just prescribing medication to keep the drug companies happy and well fed, then it REALLY is time to find another one.
You have a right to ask if he/she is getting any kind of kickbacks from drug companies as that could represent a serious conflict of interest.
Maddie
Posted by ronaldo on November 5, 2006, at 8:34:00
In reply to Re: Has anyone ever heard.....? » ronaldo, posted by ed_uk on November 5, 2006, at 7:07:11
> Hi Ronaldo
>
> Why do you think you might have been misdiagnosed? What do you think caused your manic episode?
>
> EdPromise me you won't laugh, Ed!
I'm still a bit embarrassed about this one.
I thought I could hear the neighbour's daughter calling me via an auditory hallucination. I got up and broke into the neighbour's house which was built like a fortress. I pulled out an iron bar that was blocking a slit like window, you know one of those windows from which the archers shoot their arrows at the enemy.
Anyway I got in and made my way to the room of the young lady in question, a medical student I'll have you know, and I proposed to her. After that I made my way out of the house without being caught by any of the other people within the house who apparently slept through everything. Nothing came of my proposal. No fights, no legal action, no nothing. Just one iron bar got pulled out. I ended up in the Sanitorium for a fortnight I think.
Does the above count as a manic episode? I don't think so. I think it was caused by too much thinking.
I had a major depressive episode five years earlier while at university which caused me to be hospitalized. I know what caused that. Basically I was very badly let down by my mother to whom I was closely attached due to the fact that my father died when I was just 6 months old. That is as much as I'm going to say.
I had another episode in hospital seven years after the episode with the neighbour's daughter. This was brought on by the flare up of osteitis in my right leg which I had broken in a motor accident. I was working doing a course as a draughtsman. This illness caused me to go off the course and that in turn triggered my manic depression. But I was only hypomanic at best. I think I could have managed without hospitalization.
I had one further manic episode where I climbed on the roof of the neighbouring day centre to chase away some young seagulls who were making a racket. I cut myself on the way down and needed stitches so I went to the nearby surgery at about 6 am and tried to get help. No one answered the door so I kicked it in. Once inside I realized it was too early and no one was there. I then went to the A&E at the local hospital and got help there. That is where the police caught up with me and put me in the cells. My friendly pdoc, God bless him, put me into the local psychiatric hospital where I stayed for 4 days. Luckily I escaped a criminal charge for breaking and entering.
That's about the sum of it, Ed. I don't think I deserve to spend the rest of my life as a manic depressive. I honestly don't. There have been fights with my wife where the police have been called, usually by my wife, but no one ended in hospital. I spent some time in the cells at the police station but that was it.
...ronaldo
Posted by linkadge on November 5, 2006, at 8:46:18
In reply to Re: Has anyone ever heard.....? » ronaldo, posted by madeline on November 5, 2006, at 7:19:28
Absolutely anyone can have a manic episode. Give the right (wrong) variables it can happen to anyone.
I have had one (of what doctors consider) a manic episode. I think it was more of a mild drug / stress induced psychotic break which well would have subsided on its own. The doctors increased my antidepressant, which was the wrong thing to do as I can never sleep on SSRI's. I was under severe stress too at school. The stress and drugs just lead to a breakdown. Never before, never since, especially off drugs. The point being that I endured years of lithium for no reason at all.
I'm off everything now. No mania, some depression. But a hell of a lot more like me than I was on lithium AP's etc. Its no way to live a life.
Linkadge
Posted by Lindenblüte on November 5, 2006, at 10:37:59
In reply to Has anyone ever heard.....?, posted by ronaldo on November 5, 2006, at 6:13:06
Sounds like a good battle-cry to me.
One of my relatives had a medical illness that was a complete mystery. In and out of hospitals for 2 years. No diagnosis, only tentative ones. the kind where you run all the tests, and the only illness left to diagnose is one based on exclusion.
Well, we're still not exactly sure what it is, but the meds to treat the symptoms have given the relative improved quality of life.
-Li
but often you can't figure out what the real symptoms are if they are masked by drug side-effects and such. that's why- in diagnosis stage fewest meds taken is the best.
Posted by Phillipa on November 5, 2006, at 10:49:12
In reply to Re: Has anyone ever heard.....? » ronaldo, posted by Lindenblüte on November 5, 2006, at 10:37:59
I don't know Ronaldo it sounds like you've had more than one episode. No pleasant either. Are you manic now or does anyone say you are that you are close too? Love Phillipa
Posted by fca on November 5, 2006, at 11:03:12
In reply to Re: Has anyone ever heard.....?, posted by Phillipa on November 5, 2006, at 10:49:12
Sorry for your recurrent problems--in many cases diagnosis is really just a guideline for treatment. However, it is not b*llshit. There is a clinical and neuro-chemical difference between some of the disorders--it makes a dig difference if you are treating some one with schizophrenia and many negative symptoms or a person with major depression. Similarly, through treatment response and a careful history it is very important to differentiate between simple uncomplicated depression and the varieties of bipolar disease. The major reason good psychiatrists want you medicated is to avoid relapse. It has nothing to do with how manageable or behaviorally compliant you are. There is abundant evidence through MRIs and other neuro-imaging techniques that major relapses and the persistent presence of uncontrolled symptoms act as physical assaults on the brain. Regardless of the horror stories quite a few of the drugs used actually appear to be neuro-restorative. Good luck in managing your illness. Wishing you the best fca
Posted by ed_uk on November 5, 2006, at 16:56:08
In reply to Re: Has anyone ever heard.....?, posted by ronaldo on November 5, 2006, at 8:34:00
Ronaldo,
What do you think would happen if you came off your medication?
Ed
Posted by Lindenblüte on November 5, 2006, at 22:11:43
In reply to Re: Has anyone ever heard.....?, posted by fca on November 5, 2006, at 11:03:12
> Sorry for your recurrent problems--in many cases diagnosis is really just a guideline for treatment. However, it is not b*llshit. There is a clinical and neuro-chemical difference between some of the disorders--it makes a dig difference if you are treating some one with schizophrenia and many negative symptoms or a person with major depression. Similarly, through treatment response and a careful history it is very important to differentiate between simple uncomplicated depression and the varieties of bipolar disease. The major reason good psychiatrists want you medicated is to avoid relapse. It has nothing to do with how manageable or behaviorally compliant you are. There is abundant evidence through MRIs and other neuro-imaging techniques that major relapses and the persistent presence of uncontrolled symptoms act as physical assaults on the brain. Regardless of the horror stories quite a few of the drugs used actually appear to be neuro-restorative. Good luck in managing your illness. Wishing you the best fca
fca- this is excellent information. Thanks for sharing.
I also would like to argue that mental illnesses are associated with anatomical changes in the brain that can be viewed in MRI's, if left chronically untreated. I think a lot of mental illness causes brain damage (or is a result of brain damage)
As I write this, I just bought 1000 unit doses of Vit. E, as my pdoc says studies show neuroprotective effects (I'm concerned about long-term consequences of taking anti-psychotic seroquel at 300mg day). I can't BELIEVE my pdoc just recommended me a VITAMIN. That's amazing, in my humble opinion.
slowly regenerating, gradually losing witlessness,
-Li
Posted by Phillipa on November 5, 2006, at 22:22:31
In reply to Re: Has anyone ever heard.....? » fca, posted by Lindenblüte on November 5, 2006, at 22:11:43
Li thought the seroquel was only for a limited time? I have faith in you beating your ghosts. Love Phillipa
Posted by Lindenblüte on November 5, 2006, at 22:46:02
In reply to Re: Has anyone ever heard.....? » Lindenblüte, posted by Phillipa on November 5, 2006, at 22:22:31
Um, no... seroquel 300mg is in my permanent arsenal for the time being. unlimited refills. goody.
The klonopin was only a temporary thing because... ghosts were everywhere (a good choice of words). I don't really take it anymore- maybe once a week for an unavoidable or unknown assault of dysphoric terror.
so- seroquel and cymbalta are my sedating AD-antianxiety-anticrazy meds. And provigil is my anti-sedating good morning med.
-Li
Posted by ronaldo on November 6, 2006, at 2:42:25
In reply to Re: Has anyone ever heard.....? » ronaldo, posted by ed_uk on November 5, 2006, at 16:56:08
>Ronaldo,
What do you think would happen if you came off your medication?
Ed
Hi Ed,First thing I suppose would be insomnia. After not sleeping for a few weeks I would start to go manic, not hypermanic but hypomanic. The sleep is the problem. If I could beat that I would stand a fair chance of coming off everything successfully. But I have a hard time sleeping. Zopiclone would not work for me while I was off the Olanzapine. Now I am back on the Olanzapine the Zopiclone does work for me. Sods law. I need to find a sleep medication that will work for me while I am off the Olanzapine. Or maybe I should stick to the Zopiclone and gradually come off the olanzapine and see what happens. Have to convince my GP to give me some more Zopiclone....
Olanzapine was originally prescribed for me to sleep. The pdocs would say I have come off the Olanzapine, my anti-psychotic, and I have gone high as a result. They wouldn't say oh he has not slept for three weeks and sleep deprivation has sent him manic. The latter statement is the true one imho.
....Alan
Posted by ed_uk on November 6, 2006, at 13:36:25
In reply to Re: Has anyone ever heard.....?, posted by ronaldo on November 6, 2006, at 2:42:25
Hi Ronaldo
If you want to come off Zyprexa you will have to reduce the dose in small steps. You could get the 7.5mg tablets for your next prescription and stay at that dose for a few weeks. What do you think?
Do you have a wife/partner (or anyone really) who can monitor you to ensure that you don't go manic during withdrawal? The risk of mania is that once you're there, you don't think logically - you might not even realise that there's a problem.
Ed
Posted by ronaldo on November 8, 2006, at 11:12:54
In reply to Re: Has anyone ever heard.....? » ronaldo, posted by ed_uk on November 6, 2006, at 13:36:25
> Hi Ronaldo
>
> If you want to come off Zyprexa you will have to reduce the dose in small steps. You could get the 7.5mg tablets for your next prescription and stay at that dose for a few weeks. What do you think?Yes I have been thinking along those lines, Ed. I'm surprised you say 7.5 mg FOR A FEW WEEKS. I only envisaged one week myself, but then I messed things up the last time I withdrew from Olanzapine.
> Do you have a wife/partner (or anyone really) who can monitor you to ensure that you don't go manic during withdrawal? The risk of mania is that once you're there, you don't think logically - you might not even realise that there's a problem.
>
> EdI came off my Olanzapine last time without telling my wife. She thought I was just having a bout of bad insomnia. She's pretty sharp so she would have picked up on it if I had become manic. As far as my CMHT is concerned I was manic but that was due to lack of sleep. I also tend to raise my voice to them when they don't understand. Sleep deprivation is a strong cause of mania. Of course the CMHT did not see it that way. Thank God my new pdoc is not endoctrinated to their ways....yet.
....Alan
Posted by ed_uk on November 8, 2006, at 16:24:14
In reply to Re: Has anyone ever heard.....? » ed_uk, posted by ronaldo on November 8, 2006, at 11:12:54
Hi
>I'm surprised you say 7.5 mg FOR A FEW WEEKS.
Definitely, olanzapine is not an easy drug to withdraw from!
Ed
>
Posted by ronaldo on November 9, 2006, at 10:18:47
In reply to Re: Has anyone ever heard.....? » ronaldo, posted by ed_uk on November 8, 2006, at 16:24:14
> Hi
>
> >I'm surprised you say 7.5 mg FOR A FEW WEEKS.
>
> Definitely, olanzapine is not an easy drug to withdraw from!
>
> Ed
Hi Ed,I came off a course of 5 mg Olanzapine that I had been taking for just under 4 years in a matter of 4 weeks. Was this too hasty? I suffered terrible insomnia and some anxiety and the Seroquel and the Zopiclone wouldn't work to give me some sleep. Is the latter problem with the Seroquel and Zopiclone d/t coming off the Olanzapine too quickly? I was cultivating the opinion that the Olanzapine had somehow sabotaged my receptors so that nothing else would work and so I would have to return to the 5 mg Olanzpine or worse still, 10 mg. I suppose you could call it an enforced loyalty card...lol.
Now, for my sins, I am on 10 mg of Olanzapine which gives me a dull depressed feeling so that I am once again anxious to come off it. How long should I take to do so? The Maudsley Psych. Pharm. Helpline, (0207 919 2999) told me (when I was on the 5 mg) that I should reduce to 2.5 mg for 2 to 4 weeks and then STOP. BTW it is VERY hard to get through on that number; you have to LNR repeatedly for about an hour to eventually speak to someone. They are supposed to be the main fundis though. Their hours are 11.00 to 12.30 and 2.00 to 5.00. They said I could expect 'disturbed sleep and anxiety'. They weren't wrong though the anxiety only appeared when I was off the Olanz. completely. Is this what they call 'rebound anxiety' and also 'rebound insomnia'?
Experience has taught me that you are right Ed. Olanzapine is a very hard drug to withdraw from. How would you recommend I should come off the 10 mg Olanzapine? I've been on it since 15 October 2006.
I hope to speak to my pdoc on Monday, hopefully I will be able to see him next week. I am not happy with my diagnosis ('Bi-polar disorder in remission' without there ever having been a definite diagnosis of Bi-polar in the first place.)nor am I happy with my drug regime (900 mg Lithium plus 10 mg Olanzapine). Most of the pdocs who have seen me over the past four years have diagnosed me as Schizoaffective disorder, most with a question mark in front. No one has diagnosed me as Bi-polar Disorder without placing a question mark in front.
I have chronic flat affect or is it chronic mild depression? Therefore I would like to augment my Lithium with some Lamictal which I know titrates very slowly. One thing I do know I cannot carry on the way I am. Maybe I am dysthymic? One good thing is Psychobabble. If it were not for this board I would simply suffer in silence as I have for the past quarter of a century.
Thanks Ed, your opinion will be highly appreciated.
....ronaldo
Posted by ed_uk on November 9, 2006, at 16:07:59
In reply to Re: Has anyone ever heard.....? » ed_uk, posted by ronaldo on November 9, 2006, at 10:18:47
Hi Ronaldo
Was the sole purpose of the olanzapine to help you sleep? After withdrawal from olanzapine, you may need addional medication to treat your condition. Symptoms appearing on withdrawal may fall into two categories.......
1. Withdrawal symptoms
2. Relapse of your underlying condition>I came off a course of 5 mg Olanzapine that I had been taking for just under 4 years in a matter of 4 weeks. Was this too hasty?
Yes, I think it was. The severe insomnia you suffered on withdrawal is evidence of this. It would almost certainly have been better to withdraw over a period of several months.
>Is the latter problem with the Seroquel and Zopiclone d/t coming off the Olanzapine too quickly?
When withdrawing from one drug, other drugs are not generally able to treat the withdrawal symptoms effectively unless they are very closely related to the drug from which you are withdrawing. The best solution is normally to taper more gradually. Of course, if your original condition recurs on withdrawal, it may not be possible to withdraw.
>Now, for my sins, I am on 10 mg of Olanzapine which gives me a dull depressed feeling so that I am once again anxious to come off it. How long should I take to do so?
I think you will be able to reduce your dose from 10mg to 7.5mg and then 5mg over the next few weeks. Once you are on 5mg, withdrawal may need to be much more gradual. I cannot predict a 'time scale' for your withdrawal because you will have to adjust your schedule depending on how you are feeling eg. withdraw more gradually if unpleasant symptoms appear. Do not force yourself to adhere to a strict withdrawal plan. You will need to adjust the rate of your withdrawal according to your symptoms.........both subjective symptoms and symptoms observed by others eg. unusual behaviour, hypomanic symptoms.
>Maudsley Psych. Pharm. Helpline, (0207 919 2999) told me (when I was on the 5 mg) that I should reduce to 2.5 mg for 2 to 4 weeks and then STOP.
Going from 2.5mg to zero is likely to be the most difficult step. You can cut the 2.5mg tablets in order to reduce your dose more gradually. I think it would be helpful to buy a tablet cutter. Olanzapine is very sensitive to light - tablets which have been cut must always be kept in the dark or else the olanzapine will degenerate.
>How would you recommend I should come off the 10 mg Olanzapine?
Get a prescription for a box of 7.5mg tabs, a box of 5mg tabs and a box of 2.5mg tabs. First, take 7.5mg in the evening. Stay on 7.5mg for a minimum of two weeks. Do not reduce your dose to 5mg unless you feel ok. If you do not feel ok, keep taking 7.5mg for a few more weeks until you *do* feel ok. At this point, you can reduce to 5mg. Again, stay on 5mg for at least two weeks. Do not attempt to reduce to 2.5mg until you feel ok on 5mg. If withdrawal symptoms appear, maintain the dose at 5mg until you feel normal again. This may take a few weeks. Once you are feeling OK, you can reduce to 2.5mg. Repeat the above process ie. not reducing your dose until you have been stable for a couple of weeks. From this point on, you will need to experiment a bit. You could try reducing to 3/4 of a 2.5mg tab, or maybe to 1/2 a tablet. It's up to you, and depends a lot on how easy or hard you have found the withdrawal so far. It also depends on how easy the tablets are to cut. Is it possible to cut the tablets into quarters? I don't know. I've never tried. You will need to practice! Whatever you do, do not attempt to rush the withdrawal. Rapid withdrawal never did anyone any good. Wanting to 'get the drug out of your system' is not an excuse to withdraw rapidly!
>They weren't wrong though the anxiety only appeared when I was off the Olanz. completely. Is this what they call 'rebound anxiety' and also 'rebound insomnia'?
Yes. Your original anxiety and insomnia are magnified on withdrawal, and can be worse than they were before you first started the drug. This is called a rebound.
>I have chronic flat affect or is it chronic mild depression?
The episode you described earlier (hallucinating and breaking into your neighbour's house) is evidence that your condition is more that 'just' depression. You may never receive a 'precise' diagnosis but I do think it would be helpful to concentrate on 'mood stabilisers' rather than antidepressants. I also think it is very important that you are monitered very regularly by your doctor during olanzapine withdrawal because if psychotic or manic symptoms appear, you may loose insight into your condition and require additional treatment. Before each dose reduction (of olanzapine), you should gain the advice of your doctor to ensure that you are OK to reduce further. If hypomania was to appear, you might be tempted to abrupty discontinue olazapine with potentially disasterous consequences.
Take care
Ed
Posted by ronaldo on November 10, 2006, at 11:03:18
In reply to Zyprexa » ronaldo, posted by ed_uk on November 9, 2006, at 16:07:59
Hi Ed,
Thank you very much for your fulsome reply.
What you say makes good sense to me.
I will do like you say and I should get safely down to zero zyprexa. I realise I have to play the long game with Zyprexa.
Thanks again
...ronaldo
This is the end of the thread.
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