[CopperStar]

I've been having a great time on the 10mg Zyprexa prescription. I was expecting it to come with at least a few awful side effects based on all the reviews I've read, but so far, nothing. And it works. My symptoms have cleared up almost completely, only a few mild and brief little things once in a while. And I had also thought that, even if it does work and has no major side effects, then I'd probably feel numb. But nope, I can still enjoy things just fine. Life is just easier now, in a lot of ways, but I'm definitely not numb or like a zombie. I sleep about 8-9 hours per night and wake up refreshed. And consequently for me, I haven't felt like posting on peer support forums as much. I'm just going through life feeling like I don't even have BP at all.

But I was wondering last night, am I just extremely lucky, or do most online peer support communities for mood disorders, consist mostly of treatment-resistant people?

I hope nobody takes this the wrong way, I'm not saying that this place is full of whiners. What I'm noticing is that a lot of people on forums like this one seem to be struggling to some degree, moderately to severely, despite being on medications or having tried medications in the past and then quit them. I feel like an oddball, because I was posting and lurking here a lot while waiting for medication, but then I got it, started feeling gradually better and then felt like, "Whelp glad that's over" and went off to do life.

So I wonder if others feel the same when meds work, like if they feel less inclined to post on peer support forums when they are doing well, and if so, does that mean forums like this one, might be concentrations of treatment-resistant people with mood disorders?

In other words I'm wondering if many of you fall into a secondary category as far as dealing with ****. Like if many of you not only grapple with a mood disorder, but also with being treatment-resistant.

What do you guys/gals think? Do you think many of you are treatment-resistant? Do you think this is worthy of specialized treatment (or research for it)? I do. If there is a significant subset of people who don't respond well to meds as far as eliminating symptoms without major side effects, then I think it shows that there are more types of mood disorders or something in general than recognized.

Right? If I have BP1 and respond well to Med A, and you have BP1 and don't respond well to Med A, then we have different things going on in our brains that cause our symptoms, yeah? (Does that make sense?) Pharma has figured out how to treat my symptoms, but not everyone's. But the med is the same. Which indicates to me that "treatment resistant" is a horrendously lazy way of really saying "unrecognized additional disorders we can't treat yet". Even if the disorders all fall under the same subset.

This got long and rambling, sorry, still need my morning coffee. But, whatch think of these notions?

[lovejoy91]

Sitting. I'm here for the comments.

[Luctor]

I can see where you're coming from. I was quite involved here about 2 years ago when I went through a pretty rough patch. Then I hit a plateau of stability, and subsequently stopped visiting here. I'm back now to offer help. Although I'm still on the medication merry-go-round; trying to find the right combo, I feel as though I'm now stable enough to be a productive, contributing member here.

As for your question - it makes sense. I wouldn't go so far as to say treatment-resistant, but perhaps still in the process of finding the right treatment. Also, an implicit facet of having a mood disorder is that we go through ups and downs, being incredibly sensitive to life events and outside occurrences. Even with the right treatment I do feel we're prone to having bad times and then turning to these forums for answers and support.

You're definitely not an outsider. There are others like you/us. But you're right, when people reach a period of stability I think they are less likely to post here. Which is probably why the majority of active members are still 'in recovery' as opposed to 'somewhat recovered'.

[Daonnachd]

You offer a valid observation.
This may not be clinically accurate, but I don't see "treatment-resistant" as being a secondary condition, though.

Participation here certainly is dependent upon how I'm doing and where I am in my understanding of my condition.
I joined years ago when seeking coping strategies and perspective after stumbling along on my own for several years before that.
Then I disappeared... not doing tons better, probably more in denial.
Now, my life seems to be falling apart. Meds haven't worked; TMS hasn't worked.
ECT isn't proving as effective as I'd hoped, even.
...so I'm here trying to figure out what I need to ask to properly convey what I need.

In short, I think my own behavior illustrates your observation.
I don't think, however, anything is invalidated by the limits of our population/members.

[Trippin2.0]

Big Pharma's explanation is that everyone's chemistry is different so we will respond differently and experience different side effects.


Idk, I can't say if members are treatment resistant, because from what I've read here over the years, and experienced personally is that pdocs love to religiously practice polypharmacy. So who knows why the meds are not working when most people just get RXd a bunch and then some for side effects...


I think if more pdocs were open to actually trying monotherapy FIRST, then its easier to see which patient responds to what instead of turning people into walking drug stores.


Myself, I'm not treatment resistant, besides a terrible experience with lithium I've responded well to other meds, its just that I don't want be medicated till the end of time and my treatment team understands and also supports this.


I'm not closed to the idea of using meds when the shyt hits the fan tho.


I still check in and post here even though I am not as symptomatic as I was when first dxd 5 years ago.


With that being said, my opinions is that these boards would be null and void if only treatment resistant members posted.


Because who would be offering them support, guidance and tips?

[Moogieotter]

Hello,

My treatment is going quite well. I have been stable and high functioning for approaching 2 years. I joined Psych Central for two reasons. First, I do not want to get complacent in my treatment and management success by keeping abreast of other's treatments and experience. Second, I want to give hope to others that bipolar can be managed.

I made a post a few months ago to help encourage PC Bipolar Land to at least rejoice that we have a forum, each other, the internet, and medical and non-medical options these days. I think the really severe bipolar sufferers are those who cannot even use the internet, operate a computer, form complete sentences, and etc. These poor souls are so wrapped up in Mania, Mixed States, or Depression that participating in a forum like this one is simply not possible.

Thanks for this thread. Good luck to all!

moogs

[CopperStar]

I guess the medication I am on is just working so well, that I feel like I don't even have BP anymore. Not that I am fooled, I know I have BP, and that I need to keep taking my med, but still, that's the feeling.

And it just made me wonder last night, "What about everyone else, though?" Like why is medication not seeming to help so many people on these various sites I am on?

I feel like this is a big deal that should be getting more attention. If a med can help me so much, then why does it not help so many others??? So we have different brain chemistry, sure makes sense, but doesn't that imply that we have different situations in our brains? Is BP way too vague and catching way too much under its umbrella?

Because if that is the case, then acknowledging it could lead to better, more specialized medications maybe?

[Trippin2.0]

Originally Posted by CopperStar

...
Because if that is the case, then acknowledging it could lead to better, more specialized medications maybe?

And that my friend is the crux of the matter.


There is NO bipolar medication to begin with.


Sure lithium comes to mind, but its gold standard is mostly due to being able to get rid of suicidal ideation, im not sure how good it is for mania... The folks who respond well to it, and can take it, good for them.


But what are our other options when we can't risk stupidity, kidney failure or thyroid problems?


Anti depressants, anti seizure meds and anti psychotics (now also used as mood stabilizers).


Sadly, there isnt actually abipolar med besides lithium on the big pharma market. Meds are approved for additional use and thus the med merry go round is at best a crap shoot in the dark.


This is one of the reasons I do not want to put meds in my body until the end of never. These meds were never even designed to treat my ""affliction".

[Moogieotter]

Cool CopperStar. There are always new studies and hundreds of millions of dollars going into new meds. Newer AAPs like Saprhis, Geodon, Latuda, and even Abilify still are big big huge profit centers and money makers. Of those that actually get FDA approval and make it to market, there are dozens more that are in development.

I have always been curious about Zyprexa. It's good to hear that it's working so well for you as monotherapy and without massive weight gain. I would probably have to go with Zyprexa if I lost insurance and could no longer afford Latuda.

What other treatments are you doing? DBTs? Mindfulness? Solid diet, scheduling, and routine?

How far is your stability taking you? Are you working? How are your close relationships?

I am excited to hear of your success.

moogs

[lunaticfringe]

I come to this forum mainly because I know folks here think in a similar way that I do, and I can't find that in my every day life. My treatment on Trileptal seems to be going pretty well in the last month or so. When I was on lithium for a few months I was struggling a lot more.

[avlady]

i was almost a vegetable after an accident with head injury. i don't know if thats what caused my mental problems but i was always kind of off my rocker anyway. my clonazapine knocked sence into me. all of the sudden i was doing great and have been doing good since then. i think it did help alot.

[CopperStar]

Originally Posted by Trippin2.0

And that my friend is the crux of the matter.


There is NO bipolar medication to begin with.


Sure lithium comes to mind, but its gold standard is mostly due to being able to get rid of suicidal ideation, im not sure how good it is for mania... The folks who respond well to it, and can take it, good for them.


But what are our other options when we can't risk stupidity, kidney failure or thyroid problems?


Anti depressants, anti seizure meds and anti psychotics (now also used as mood stabilizers).


Sadly, there isnt actually abipolar med besides lithium on the big pharma market. Meds are approved for additional use and thus the med merry go round is at best a crap shoot in the dark.


This is one of the reasons I do not want to put meds in my body until the end of never. These meds were never even designed to treat my ""affliction".

You raise a good point IMO and it does make me curious that a medication designed for schizophrenia (I think?) works so well on my symptoms.

[CopperStar]

Originally Posted by Moogieotter

Cool CopperStar. There are always new studies and hundreds of millions of dollars going into new meds. Newer AAPs like Saprhis, Geodon, Latuda, and even Abilify still are big big huge profit centers and money makers. Of those that actually get FDA approval and make it to market, there are dozens more that are in development.

I have always been curious about Zyprexa. It's good to hear that it's working so well for you as monotherapy and without massive weight gain. I would probably have to go with Zyprexa if I lost insurance and could no longer afford Latuda.

What other treatments are you doing? DBTs? Mindfulness? Solid diet, scheduling, and routine?

How far is your stability taking you? Are you working? How are your close relationships?

I am excited to hear of your success.

moogs

I have a very low interest in therapy at the moment. I tried therapy for about a year straight and did not get any help from it. Of course it may have been a case of wrong therapist, or wrong timing, or wrong mindset on my part, but I just lost faith in it and am currently just leaning on medication only. I also do aromatherapy, though, and have been practicing better sleep hygiene, too.

I am currently job hunting, which doesn't feel as overwhelming as it did without medication.

My biggest things I notice are just how much easier it is to take care of myself. My hygiene is good again, my sleep cycle is good, I am showering everyday, I am keeping a clean environment for myself. Now that my mind is clear and I am not constantly sucked into chaos inside my own head, dealing with the "outside" world is much easier and more relaxed. I can focus on tasks without anxiety or agitation and just 'doing stuff' feels more possible and relaxed and easy.

[raspberrytorte]

Happy you're feeling better copperstar!

I don't think I'm treatment resistant. I just think the meds I'd been taking for years stopped working.

[Nammu]

For me it's complex .

Starting with the fact I never sought out treatment, I was referred to a phT because I kept ending up in the hospital beatn up from my husband. PTSD with depression was my first diagnosis. The antidepressants either put me into a mixed state where I would try to kill myself which would land me IP and then be given more antidepressants and thus the circle would go. Then I would go off the meds because clearly they weren't helping. I'd either be stable for a bit or hypo manic in witch case I felt great and had no need to see anyone. If I had a T I stopped seeing them. After a while depression would hit and I'd seek out help and be given antidepressants again, though the cycle once more.

After they figured out I was Bipoar they added antipsychotics and mood stabilizers but continued the antidepressants.. Then I'd quit the medicine because it was really working and I'd think they were poisoning me. About 5 years ago I refused all antidepressants. Actually I refused all meds. The side effects I had, the doctors that refused to listen and told me the side effects were in my head. I had my fill of it all.

I had had some wonderful Ts but mostly I worked on the PTSD with them. Since most of them were also qualified to diagnose they would tell me I had bipolar too, which I refused to accept. Then this past year I was in terrible shape and sought out a Pdoc, I said no antidepressants. He listened, I was put only on a mood stabilizer and a antipsychotic. This was the first time I've done so well on meds.

I believe too things have changed a lot since my first experience with Pdocs about 30 years ago. The ones I have met in the last year listen much better and take side effects into consideration.

I don't think it's as easy as saying its treatment resistance as much as it is getting the wrong treatment. Over all the Ts helped me much more than the Pdocs. But I also needed the right meds, meaning no antidepressants.

[Victoria'smom]

My symptoms cause me issues with meds. For years I was on lamictal and viibryd. My team did the best they could. I refused more help due to my bp but I was more stable then before. I moved and my meds changed. This time I had to go on an ap and it was that or the hospital. I ended up in the hospital anyway. Put on more meds and changed my ap. My team had a meeting and decided injections would be best for me. Since injections I've been stable but my personality has changed.

So glad to hear you are doing so well, CopperStar! Yea!

Some rambling thoughts on your questions? Here goes!
I don't think the forums are full of treatment-resistant people so much as that people in general seek out forums when struggling, so that's going to skew demographics. People who are treatment resistant are going to find themselves in that boat more often, so that probably adds another layer to the perception.

The meds can seem to loom large, but, there are so many variables at work whether one is doing well with their treatment or not. Like everyone's in different life circumstances and widely varying degrees of support systems. It can be hard to know just how much and in what each plays a role in how things are working.

I've been here since 2009. Despite being here for so long, it's not at all a case of treatment-resistant. Been lucky on that front actually (that's talking after the initial mis-dx, ADs fiasco, of course). Adjustments here and there, but the meds are fine, it's managing everyday life that's my ongoing challenge. (Everyday-life-management-resistant? Haha.) So I just need that sense of community, knowing that someone(s) are out there. To not feel so isolated. Long/short, I love this place. I love that there are people who've been here forever. AND that people can come and go as meets their need at any given point. I love to be a part of that. To care and think of people. (More and for far longer than they'd imagine.) And hopefully, to sometimes make them laugh.

Also, I like to whine. Totally kidding. Couldn't resist.

I am stable at the moment and have been for a month or so. A little on the depressed side.

On a scale of -5 to 5. I am a - 1 to about a 1 or 2.

I see what you are saying as well.

[polesapart]

I think as others have said it's somewhere people come when they are struggling. I joined the year I got diagnosed, but disappeared when I got stable. Spent a few years stable then stopped meds and have been lurking recently after crashing back into depression and wanting to hear from others who understand. Not posting as felt too guilty/unimportant and just waiting for the meds to kick back in.

[Crazy Hitch]

I feel like I've responded to nothing in 9 months.

What a waste.

I may have flushed the last 9 months straight down the drain.

I'd rather not have had them.

Hope things start looking upwards for you.

We usually climb out of these ruts ... I don't think they're meant to last forever.

[UCMATH]

I tend to drop in even when I'm stable, because I can get some excellent advice on how to remain stable.

Goodpoint. ^ Education is always helpful.

[zepchic]

I am definitely treatment-resistant..LOL. I will admit it. I went down the meds road about 10 years ago when I was first diagnosed and that lasted about a year. I never found anything that I liked how it worked and I just got tired of dealing with the dr. who wasn't really helping me. Now, I am seeing a therapist which is what I think I needed all along. But seeing the therapist is not stopping me from making really bad choices...LOL, so maybe I need meds too, but I am just very hesitant to make that leap. A lot of my bad choices have to do with drugs and I just really like being high, so IDK

[~Christina]

I have been here 4 years. I had tried the whole med merry go round, I found I cycle with or without meds so why ingest a chemical daily? my Pdoc agreed. If the time comes I will take something short term.

Im sick of Big Pharma and all that total shyt. I see many people come and go here. Some people get to feeling better and take a break until they are in need of support and they come back. Someone people get overwhelmed and triggered when they are struggling and coming here make matters worse.

Everyone is different. Me? I have just always been here. I am sure my typical upbeat positive advice annoys some people.. They can just put me on ignore if they want. Personally I can't just focus on the down side of having Bipolar all the time. Sometimes I just force myself to fake it until I make it.. Medications can only do so much... lifestyle changes and deciding just how you want to attack your particular soup of Bipolar is a decision every person has to make on there own .

Currently I am in a struggle from hell with my pain.. It is at a dangerous place/level ..I am on a ledge. Yet I am still here. I can somehow still offer advice... why? Because it gets me outta my own damn head and I focus on something/someone else.

Copper, I am really happy that you are responding so well to Zyprexa

[intergalactictraveler]

Your experiences are quite similar to mine. My current pdoc suggested that it was time to consider ECT,(not the first one to suggest it) after 10 years of trying many meds, nutritional strategies, supplements. But for all my research, ECT still scares me. Even though my functioning is poor, the memory, logic and analytical aspects of my brain are 100%. I already struggle with being dependent on my wife for a roof over my head and her need to control. If ECT makes me stable but trashes others neuro functions, I will be MORE dependent on her. No thank you. Treatment resistance is misery enough but I've learned to live with it. What I haven't learned is how to regain my independence.

Originally Posted by vertigo

You offer a valid observation.
This may not be clinically accurate, but I don't see "treatment-resistant" as being a secondary condition, though.

Participation here certainly is dependent upon how I'm doing and where I am in my understanding of my condition.
I joined years ago when seeking coping strategies and perspective after stumbling along on my own for several years before that.
Then I disappeared... not doing tons better, probably more in denial.
Now, my life seems to be falling apart. Meds haven't worked; TMS hasn't worked.
ECT isn't proving as effective as I'd hoped, even.
...so I'm here trying to figure out what I need to ask to properly convey what I need.

In short, I think my own behavior illustrates your observation.
I don't think, however, anything is invalidated by the limits of our population/members.