[Wander]

Since discovering more depth about my diagnosis it was confirmed that the bipolar I have is seriously treatment resistant, and worsening. I have BP1 rapid-cycling(almost always but often mild), psychotic features(only occasionally) and regular severe mixed features.

They are all labels but the reality of my illness is exhausting, terrifying, life threatening, exhilarating, damaging, fun, disabiling, and frightening for my loved ones. It has only be escalating for the last ten years despite trying pretty much everything in various combinations, including ECT and rTMS.

Right now I have been mostly ok for two months (just minor rapid cycling and paranoia), and that is a long stretch for me. Maybe the ECT did help? Or the Lamictal increase? God I hope so. It is so hard to tell if treatments work or it is a natural temporary remission. I tend to get about three very severe mixed episodes a year, and each one nearly kills me so I end up IP.

I am fed up with this. Does anyone else have a similar situation and found ways to turn things around or even slow them down? I'm scared. At best I will lose my ability to work, or even study due to my inability to be reliable and live below the poverty line for the remainder of my life. At worst ... well you all know.

Anyone? Any ideas would be welcome.

[sarahsweets]

I do not have BPI I have BPII so my issues are less severe than yours I think. My "episodes" were like fugue states where I can forget everything, kinda act dopey and unsteady and sometimes combative. And then when I come out of it not remember what happened. It is hard on my family when this happens. My last hospitalization was 13 years ago and it was when I was put on the magic combo for me: Lamictal, cymbalta, geodon, buspar and most recently latuda. Those meds saved my life. I am not trying to say you should take the meds I do but that my meds really help me. How are meds for you? Do you feel they work? Are you on an antipsychotic?

[Wander]

Originally Posted by sarahsweets

I do not have BPI I have BPII so my issues are less severe than yours I think. My "episodes" were like fugue states where I can forget everything, kinda act dopey and unsteady and sometimes combative. And then when I come out of it not remember what happened. It is hard on my family when this happens. My last hospitalization was 13 years ago and it was when I was put on the magic combo for me: Lamictal, cymbalta, geodon, buspar and most recently latuda. Those meds saved my life. I am not trying to say you should take the meds I do but that my meds really help me. How are meds for you? Do you feel they work? Are you on an antipsychotic?

Thanks. What I am saying is that the vast amount of meds and combos that I have tried have failed for various reasons. My illness is still progressing despite all this. Right now I am on Lithium, Lamictal, Seroquel and Clonazepam. The Lithium has prevented only impulsive attempts on my life and the Seroquel helps me sleep. I am only on Clonazepam as I have been taking benzodiazepines for 10 years and can't get off them due to the withdrawals triggering episodes. Lamictal may be helping since I went from 200mg to 300mg but it is way too early to tell. Right now I am still rapid cycling mildly after another horror mixed episode in October last year. Basically things are as usual while between regular horror episodes.

[BeyondtheRainbow]

Clozapine changed me from treatment resistant to responding fairly well to treatment. I still have episodes but they are minor compared to what I had before. I've been on it 3 years and have had only one sort of bad episode. The last time I started to get mixed I asked to take a higher dose for a few days and that worked extremely well; 4 days and I was much improved and back to my usual dose.

It's not the easiest med but honestly I've been on worse. And it works. Next month will be 3 years out of the hospital.

[Pookyl]

I’ve been diagnosed with brittle (treatment-resistant) Bipolar 1 that’s rapid cycling. This is despite being compliant.
I think the med combo in my signature below has been the most effective. The dosages are high according to some.
I’ve currently been stable for 10wks - the longest period in 4.5 years.
I don’t really have any ideas but wanted to let you know you’re not alone.

[Wander]

Originally Posted by BeyondtheRainbow

Clozapine changed me from treatment resistant to responding fairly well to treatment. I still have episodes but they are minor compared to what I had before. I've been on it 3 years and have had only one sort of bad episode. The last time I started to get mixed I asked to take a higher dose for a few days and that worked extremely well; 4 days and I was much improved and back to my usual dose.

It's not the easiest med but honestly I've been on worse. And it works. Next month will be 3 years out of the hospital.

Thanks! I have heard bad things about Clozapine so thank you for clearing a few things up for me. I have a couple of other questions. How often do you need blood tests? Do you put on weight? Are there any other bad side effects like wetting the bed etc ( one I have heard of)?

[Wander]

Originally Posted by Pookyl

I’ve been diagnosed with brittle (treatment-resistant) Bipolar 1 that’s rapid cycling. This is despite being compliant.
I think the med combo in my signature below has been the most effective. The dosages are high according to some.
I’ve currently been stable for 10wks - the longest period in 4.5 years.
I don’t really have any ideas but wanted to let you know you’re not alone.

Ten weeks is great! I really hope this is the magic combo for you and the stability lasts. I am only on 25mg of Seroquel as I cannot sleep at all without it. Maybe an increase might help? idk? I will talk to my pdoc when I see him in a month.

[BeyondtheRainbow]

Blood tests in the US are weekly for 6 months, every other week for 6 months then monthly while on the med. I don't even think about it anymore.

Side effets are not always great. I sometimes wet the bed but incontinence pads take care of that. I drool quite a bit at night. I gained weight initially but have lost that weight plus 15 lbs so it's not necessarily permanent. I need a good bit of sleep but that was true on Seroquel too (before clozapine).

When you've tried everything else it is worth trying it. I really don't have anything with it I can't handle. I'd pretty much run out of options so I'm glad this works for me.

[AspiringAuthor]

Wander, I second Rainbow in that if you really are treatment-resistant, then a logical next step is to try Clozapine. But by the US standards, you are not at a point when you can be pronounced treatment-resistant.

You take: "Lithium, Lamictal, Seroquel and Clonazepam".

Clonazepam you take because otherwise you go into withdrawal pains and not because you really need it, so we can discount it.

Seroquel: you take a tiny sleep medicine dose of 25 mg that scores of people who are not mentally ill take because they need a sleep medicine. This is not a psychiatric dose - for Seroquel to be an anti-psychotic/anti-manic agent, it needs to be prescribed at a higher dose, think 300 mg and above. So we can discount it as well.

This leaves you taking Lamictal and Lithium, which is a very common and usually effective combo wherein Lamictal protects from the bottom and Lithium protects from the top. Many people, including on this board, are quite happy on this combo. But it is not a "last resort" combo - rather, it has become one of the first combos to be tried. So your treatment does not make the impression that your clinicians have exhausted other options with you.

I used to be considered treatment-resistant and was put on Clozapine, but it made me depressed to the point of physically motionless, even at the lowest possible dose and even in the presence of Wellbutrin. So I thought that I would need to try ECT. But I happened on Zyprexa and Zyprexa saved the day. The addition of Topamax not only stopped the weight gain from Zyprexa, but also added protection from racing thoughts, giving me calmness that I had last experienced prior to the disorder. I am really happy with this combo. I also take Gabapentin which improves the quality of sleep (Zyprexa takes care of quantity of sleep). So you can see from my signature just how many medicines were tried and discarded, but ultimately a good combo was found via trial and error. I had long periods of disability in the past but now am working full time in a high stress occupation. What I am trying to say that there is no science to the selection of psychiatric meds - it is trial and error - and it seems that you have not exhausted your options.

There were recently publications that Clozapine, given its superior efficacy, is not being used as nearly as widely as it deserves. People suffer while they can be helped. My reaction to Clozapine was an outlying case - it helps many people who take it without making them severely depressed.

[Wander]

Originally Posted by AspiringAuthor

Wander, I second Rainbow in that if you really are treatment-resistant, then a logical next step is to try Clozapine. But by the US standards, you are not at a point when you can be pronounced treatment-resistant.

You take: "Lithium, Lamictal, Seroquel and Clonazepam".

Clonazepam you take because otherwise you go into withdrawal pains and not because you really need it, so we can discount it.

Seroquel: you take a tiny sleep medicine dose of 25 mg that scores of people who are not mentally ill take because they need a sleep medicine. This is not a psychiatric dose - for Seroquel to be an anti-psychotic/anti-manic agent, it needs to be prescribed at a higher dose, think 300 mg and above. So we can discount it as well.

This leaves you taking Lamictal and Lithium, which is a very common and usually effective combo wherein Lamictal protects from the bottom and Lithium protects from the top. Many people, including on this board, are quite happy on this combo. But it is not a "last resort" combo - rather, it has become one of the first combos to be tried. So your treatment does not make the impression that your clinicians have exhausted other options with you.

I used to be considered treatment-resistant and was put on Clozapine, but it made me depressed to the point of physically motionless, even at the lowest possible dose and even in the presence of Wellbutrin. So I thought that I would need to try ECT. But I happened on Zyprexa and Zyprexa saved the day. The addition of Topamax not only stopped the weight gain from Zyprexa, but also added protection from racing thoughts, giving me calmness that I had last experienced prior to the disorder. I am really happy with this combo. I also take Gabapentin which improves the quality of sleep (Zyprexa takes care of quantity of sleep). So you can see from my signature just how many medicines were tried and discarded, but ultimately a good combo was found via trial and error. I had long periods of disability in the past but now am working full time in a high stress occupation. What I am trying to say that there is no science to the selection of psychiatric meds - it is trial and error - and it seems that you have not exhausted your options.

There were recently publications that Clozapine, given its superior efficacy, is not being used as nearly as widely as it deserves. People suffer while they can be helped. My reaction to Clozapine was an outlying case - it helps many people who take it without making them severely depressed.

Thanks so much for your reply! Over the last ten years I have tried; high doses of Seroquel, Zyprexa, Haloperidol, Abilify, Latuda, Risperidone, and another AP I can’t recall. I have also tried Valporate, ECT, rTMS and others. Lithium has been a partial response and 200mg of Lamictal with it did nothing to stop three severe mixed episodes last year that required hospitalisation. Lamictal has been increased to 300mg since October but I am still rapid cycling (week to two weeks either way) and was possibly psychotic a week ago. I’ve felt stable for four days now. The first four days in six months.

I should have explained this earlier. Trying all these meds, at high recommend doses, for long enough times to see a response should equal treatment resistance.

I am desperate for help as I sense I won’t last much longer if these mixed states don’t abate. However I’m terrified of Clozapine. Will run it by my pdoc when I see him in a month.

[AspiringAuthor]

Oh my! Now I see - you have tried everything, even old APs. I perfectly understand your being terrified of Clozapine - I also had been, but please read up on it and it may not seem as scary after that. I have not read that book but was told at the hospital where they first put me on Clozapine that there is a book written by a UCLA professor on Clozapine - she is schizophrenic and Clozapine totally and almost miraculously changed her life for the better.

When I was prescribed Clozapine, I was also given Metformin to go with it. Also, some sort of non-addictive regularity-promoting powder that you dissolve in water and drink (I can look in my stash of old meds I no longer use to find out what it was). Clozapine greatly slows intestinal motility and care needs to be taken to counteract that. I would take Metamucil (with plenty, plenty of water) with each meal on Clozapine - it not only will help counteract Clozapine but also help you feel full between meals.

Esp. since you were possibly psychotic Clozapine should be considered. Lamictal does not treat psychosis (or prevents it), but Clozapine is a very effective antipsychotic medication. Of course you are squarely treatment-resistant, and have even tried ECT. The only big thing you have not tried is Clozapine.

On the bright side Clozapine very rarely causes Extrapyramidal side effects, esp. in comparison with Haloperidol.

[AspiringAuthor]

To correct myself - if you have psychotic depression and Lamictal is treating depression and thus eliminating psychosis, then indirectly Lamictal treat psychosis.

[Wander]

Originally Posted by AspiringAuthor

To correct myself - if you have psychotic depression and Lamictal is treating depression and thus eliminating psychosis, then indirectly Lamictal treat psychosis.

Thanks again. My psychosis never has hit me during pure depression. Only during mixed states and mania. If it is not fleeting I am hit with a slew of AP that work usually but maybe it abates by itself. Recently I am seriously worried the med scene is all a sham. They never help, can give bad side effects and make billions for pharmaceutical companies. I think it’s a conspiracy. Sort of told my T but he said little. I was worried he would hospitalise me if I said more.

[AspiringAuthor]

I am afraid this might be paranoia, but at the same time you have basis in fact since you suffered many side effects without much relief.

I think you need to try Clozapine. You may want to look at it this way: Clozapine is a very old medication, so it has long been off patent and there is no powerful drug company interest behind it, unlike behind modern drugs.

[wildflowerchild25]

Originally Posted by Wander

Thanks again. My psychosis never has hit me during pure depression. Only during mixed states and mania. If it is not fleeting I am hit with a slew of AP that work usually but maybe it abates by itself. Recently I am seriously worried the med scene is all a sham. They never help, can give bad side effects and make billions for pharmaceutical companies. I think it’s a conspiracy. Sort of told my T but he said little. I was worried he would hospitalise me if I said more.

I get where you’re coming from because this has been your experience, but for me the current meds I’m on have indeed helped and have no side effects. I’m in all generic stuff too so the drug companies don’t get as much. I don’t think it’s all a complete scam. I hope you’ll reconsider the clozapine. I think it may be your last chance. You can’t will this away.