Psych Central

Go Back   Forums at Psych Central > >



advertisement
Reply
 
Thread Tools Display Modes
Old 01-22-2019, 12:35 AM   #1
Wander
Grand Magnate
 
Wander's Avatar
Wander exists in a dualistic state...
 
Member Since: Jul 2014
Location: Milky Way
Posts: 4,119 (SuperPoster!)
My Mood: So - Treatment Resistant Bipolar.

3 yr Member
1,999 hugs
given
PC PoohBah!
Default So - Treatment Resistant Bipolar.

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.
Wander is offline   Reply With Quote
Hugs from:

advertisement
Old 01-22-2019, 02:47 AM   #2
sarahsweets
Poohbah
 
sarahsweets's Avatar
sarahsweets Humor is my end game..
 
Member Since: Dec 2018
Location: New Jersey
Posts: 1,381 (SuperPoster!)
My Mood: So - Treatment Resistant Bipolar.

91 hugs
given
Default Re: So - Treatment Resistant Bipolar.

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?
sarahsweets is offline   Reply With Quote
"Thanks for this!" says:
Old 01-22-2019, 03:25 AM   #3
Wander
Grand Magnate
 
Wander's Avatar
Wander exists in a dualistic state...
 
Member Since: Jul 2014
Location: Milky Way
Posts: 4,119 (SuperPoster!)
My Mood: So - Treatment Resistant Bipolar.

3 yr Member
1,999 hugs
given
PC PoohBah!
Default Re: So - Treatment Resistant Bipolar.

Quote:
Originally Posted by sarahsweets View Post
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.
Wander is offline   Reply With Quote
"Thanks for this!" says:
Old 01-22-2019, 11:29 AM   #4
BeyondtheRainbow
Elder
 
BeyondtheRainbow's Avatar
BeyondtheRainbow has no updates.
 
Member Since: Apr 2015
Location: US
Posts: 6,147 (SuperPoster!)
My Mood: So - Treatment Resistant Bipolar.

3 yr Member
1,866 hugs
given
PC PoohBah!
Default Re: So - Treatment Resistant Bipolar.

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.
BeyondtheRainbow is offline   Reply With Quote
"Thanks for this!" says:
Old 01-22-2019, 05:39 PM   #5
Pookyl
Grand Member
 
Pookyl's Avatar
Pookyl Im high and Im low, no control but everythings looking peach now
 
Member Since: Aug 2017
Location: Australia
Posts: 994
My Mood: So - Treatment Resistant Bipolar.

44 hugs
given
Default Re: So - Treatment Resistant Bipolar.

Iíve been diagnosed with brittle (treatment-resistant) Bipolar 1 thatís 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.
Iíve currently been stable for 10wks - the longest period in 4.5 years.
I donít really have any ideas but wanted to let you know youíre not alone.
Pookyl is offline   Reply With Quote
"Thanks for this!" says:
Hugs from:
Old 01-22-2019, 06:17 PM   #6
Wander
Grand Magnate
 
Wander's Avatar
Wander exists in a dualistic state...
 
Member Since: Jul 2014
Location: Milky Way
Posts: 4,119 (SuperPoster!)
My Mood: So - Treatment Resistant Bipolar.

3 yr Member
1,999 hugs
given
PC PoohBah!
Default Re: So - Treatment Resistant Bipolar.

Quote:
Originally Posted by BeyondtheRainbow View Post
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 is offline   Reply With Quote
Old 01-22-2019, 06:19 PM   #7
Wander
Grand Magnate
 
Wander's Avatar
Wander exists in a dualistic state...
 
Member Since: Jul 2014
Location: Milky Way
Posts: 4,119 (SuperPoster!)
My Mood: So - Treatment Resistant Bipolar.

3 yr Member
1,999 hugs
given
PC PoohBah!
Default Re: So - Treatment Resistant Bipolar.

Quote:
Originally Posted by Pookyl View Post
Iíve been diagnosed with brittle (treatment-resistant) Bipolar 1 thatís 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.
Iíve currently been stable for 10wks - the longest period in 4.5 years.
I donít really have any ideas but wanted to let you know youíre 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.
Wander is offline   Reply With Quote
Old 01-22-2019, 06:26 PM   #8
BeyondtheRainbow
Elder
 
BeyondtheRainbow's Avatar
BeyondtheRainbow has no updates.
 
Member Since: Apr 2015
Location: US
Posts: 6,147 (SuperPoster!)
My Mood: So - Treatment Resistant Bipolar.

3 yr Member
1,866 hugs
given
PC PoohBah!
Default Re: So - Treatment Resistant Bipolar.

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.
BeyondtheRainbow is offline   Reply With Quote
"Thanks for this!" says:
Old 01-23-2019, 12:05 AM   #9
AspiringAuthor
Veteran Member
AspiringAuthor has no updates.
 
Member Since: Oct 2017
Location: Mountain View
Posts: 513
317 hugs
given
Default Re: So - Treatment Resistant Bipolar.

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.
AspiringAuthor is offline   Reply With Quote
Old 01-23-2019, 01:02 AM   #10
Wander
Grand Magnate
 
Wander's Avatar
Wander exists in a dualistic state...
 
Member Since: Jul 2014
Location: Milky Way
Posts: 4,119 (SuperPoster!)
My Mood: So - Treatment Resistant Bipolar.

3 yr Member
1,999 hugs
given
PC PoohBah!
Default Re: So - Treatment Resistant Bipolar.

Quote:
Originally Posted by AspiringAuthor View Post
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 canít 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. Iíve 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 wonít last much longer if these mixed states donít abate. However Iím terrified of Clozapine. Will run it by my pdoc when I see him in a month.
Wander is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 05:14 AM.


Powered by vBulletin® — Copyright © 2000 - 2019, Jelsoft Enterprises Ltd.




advertisement

 

The material on this site is for informational purposes only, and is not a substitute for medical advice,
diagnosis or treatment provided by a qualified health care provider. .
Always consult your doctor or mental health professional before trying anything you read here.

 

HomeAbout UsContact UsPrivacy PolicyTerms of UseDisclaimer
Forums HomeCommunity GuidelinesHelp


 
Helplines and Lifelines