Treatment research resource ideas?

Hi everyone,

I see my pdoc in a week. Since both my pdoc and I are running out of ideas, I'd like to try and research other meds that might help me. My problem is I either can't handle the side effects or the med only lasts a short amount of time. Well, for an antipsychotic anyway. I've managed to stay on lamictal and wellbutrin for almost a year.

Does anyone know of resources that might help me learn more about meds that help with treatment resistant bipolar disorder and/or tend to work better for people who are extremely sensitive to side effects?

I have treatment resistant bipolar disorder and I have found that the only way is trial and error. There is nothing especially designated for treatment resistant, well maybe save for Clozapine but it gave me immobilizing depression at tiny doses, so I could not tolerate it. But Clozapine is the only med that officially has the status of being the last resort medicine, in part because you need to be on continuous blood work monitoring to fill your prescriptions, so it is a high maintenance treatment which physicians avoid if they can. But Clozapine has literally allowed many people, bipolar and schizophrenics, to lead full lives whereas before they could not get help from anything else. So my first question to you is, have you tried Clozapine? And more generally, what have you tried already? Can you list what you have tried, in what combinations, at what doses, for how long, and with what results? I even have a spreadsheet where it all is listed and I actually plan to move this information to a Notion page that I can share with my doctors because Notion displays data in a much more user-friendly format than a spreadsheet.

I see your signature with current prescriptions, but it does not give visibility into what you have tried and abandoned, and why.

I am surprised that it is with antipsychotics that you experienced that they "last a short amount of time". Usually, it is antidepressants that first work but then stop working. I had it happen to me on Trazodone, an old antidepressant used in low doses for sleep. It stopped working for sleep altogether after several years and raising the dose did nothing to resurrect its effectiveness. Many people experience that ADs stop working for them as, well, ADs. I have a friend with MDD who has had if happen multiple times on various medications, including Wellbutrin that you are taking. But APs, if they work, usually tend to be more stable with their effectiveness than ADs. But of course everyone is different and we all have our idiosyncratic responses to medications.

So please provide your history with medications and we will see what remains unexplored. And in terms of symptomatology, where are you, how do you cycle... what, essentially, are you treating?

I was on clozaril for a couple of months. It helped me SO much, but I couldn't physically tolerate it (caused massive swelling, fluid retention, edema, respiratory problems... my pdoc said he'd never seen anything like it!), so I had to go off it.

Plus the drooling...

I had a drool towel at night! Lol.

So clozapine works quite well, if you can physically tolerate it.

And the weekly blood draw kind of sucked.

Have you tried loxapine? My pdoc put me on it after clozaril because he said it was the closest med to clozaril we could get. It works quite well! Unfortunately, I can't physically tolerate that either (causes extreme bodily fatigue, to the point where I can't even walk a BLOCK without feeling like I'm dying and no, I don't get out of breath and no, I may be fat, but I'm twenty pounds overweight for Pete's sake! Not fifty! And I can't be THAT out of shape!!! Jeez. It's not like I'm runnng a marathon!). So I had to reduce my dose from 150mg to 50mg and plan on weaning myself the rest of the way off.

Anyway, that's worth a shot too. And no bloodwork required.

@Tart Cherry Jam

Thanks for the info! Sadly, I have not kept track of all of the meds in different combinations...When I was first diagnosed, I didn't realize this was something that is/needs to be done. This is probably something I should start though, especially since my pdoc is currently retrying some meds that I've had in the past but at different doses and before I was on Wellbutrin and lamictal. The spreadsheet is a really good idea! Currently, my pdoc and I need to work together to get rapid cycling under control. I also experience mixed states on a regular basis. I need to talk with him about how a woman's hormones can impact med effectiveness because I'm starting to think this might be part of why I'm constantly needing a med change.

Meds I have been on, but am not on now, include (sorry for the many spelling mistakes that are probably about to occur): Tegretol, depekote, olanzapine, lybalvi, lithium, and vraylar. I know there were others with my last pdoc, but I was a mess (and have poor memory) so don't remember everything she did. And, she never sent over my records for my current pdoc and I to reference...

@raspberrytorte

Thank you for the information as well! That much fatigue must have been awful!! I have not tried loxapine. No bloodwork is always a plus! I'll be sure to keep this info in mind as I am researching. I think I am gong to ask my pdoc if I can have an appointment for us to simply go over some questions and theories I have to talk about potential game plans for the future.





It is looking like my pdoc and I will probable try tegretol again. Or, a med (name I can't remember) that he said is very close to it. I was on tegretol when I first started seeing him, but the dose was so low he figured it probably wasn't doing anything for me. And, when we stopped it, my mood didn't change at all. I'm willing to give this med a try again because my last pdoc was not very good (ex: when she had me try lithium, she never tested my blood levels and would change a bunch of things at once so we never knew what was causing what). The conversation was just during a brief phone call check in yesterday so, hopefully, at my next appointment (Jan 2) I'll be able to get a new med prescribed.

I'd also really like to get off of risperidone (I think it affects my hormones) but, if I need it I guess I'll have to put up with it.

When I was on the med merry-go-round I bought a paperback edition of the PDR and highlighted the drugs I’d tried. Red for those that had horrible side effects, yellow for those that I might give a second chance alone or with different meds. Green for those that worked. That was how I figured out AD were terrible for me. When I told the pdoc I was seeing at the time, he was like, oh yeah, we’re finding out AD aren’t good for bipolar 1 patients! Gee why are you giving them to me then? don’t know if they make the paperback anymore but it was a great reference for me and my pdocs. I didn’t have to remember anymore. But since starting latuda I’ve been on just that for oh gee, years now and I threw the book away when I moved. Maybe I shouldn’t have.

One way to learn which medications you took in the past is to get the records from all the pharmacies you used.

Regarding the doctor who would not share the records with the new doctor: she has violated HIPAA, which is a federal law, and possibly also the medical privacy laws in your state. HIPAA requires her to send over records within 30 says of a properly made request. You can file a HIPAA complaint online and hopefully she will be required to send the records, but the process takes at least several months.

Nammu: what a terrific idea with thr paperback version of the PDR!

@Nammu Thanks for telling me about this! I didn't know such a thing existed. I was looking into the book and found a pocket psych med book on Amazon so I might look into investing in that to help me keep track.

@June08

In re "
It is looking like my pdoc and I will probable try tegretol again. Or, a med (name I can't remember) that he said is very close to it."

I know what you mean. There is a medication, its name starts with T, too, and it's close to Tegretol or its metabolite. It's on the tip of my tongue but I cannot remember it (I am also now on Topamax which makes one forget words). I was on that medication for a short period of time and it caused never ending headaches. The pharmacist said that headaches was a common side effect. But maybe you won't get it: I am a migraineur to begin with, after all.

Trileptal. It was very sedating for me but it's supposed to be a pretty good med for those who tolerate it.

right! that!

Thank you for this information everyone! It has been very helpful as I prepare for my appointment tomorrow and gave me some great ways to better track my meds and symptoms.

How'd it go?

@Victoria'smom Thanks for asking! All things considered, it went well. After unpacking my symptoms and symptom history for a bit, we decided to give tegretol a try again. It sounds like my last psychiatrist never had me on a dose as high as it probably needed to be so who knows if enough was in my system for it to do anything. She also never tested my blood levels to see where things were at.

My pdoc said the ultimate goal is to get me to 400 mg twice a day. I'll slowly build this up (200 mg once a day for four days; 200 mg twice a day for 4 days; and, finally, 400 mg twice a day). Once I have a week of the full dose in me (hopefully, the med agrees with me and I make it to this point!), I have to get my levels tested. He'll test my lamotrigine levels at that point too. My other meds are staying the same so we aren't changing more than one thing at a time but, in the future, an increase in lamotrigine may be needed because of how tegretol interacts with it. A conversation about trying to reduce my risperidone (I really don't like the med but will stick with it if I have to) may also be in the future too if this works.

If this does not work, abilify (or this and a combo of something else) instead of risperidone may be the next step. I've never been on abilify but he thinks tegretol, if it works, is probably a better long term option for me.

Apparently, the pharmacy is currently out of stock of tegretol (according to my online account). hopefully, they get it by the weekend. I'd like to start taking it Friday or Saturday in case I have some first day side effects.

good luck!

Good luck, June! I hope it works for you.

Yes, good luck. 👍

@June08, just read the list of side effects. Tegretol is an old med and the list is quite long. Know what may be coming your way.