I want to go off psych meds but my family might not. Do I do it anyway?
August 22, 2014 12:50 PM   Subscribe

I made a promise to my family that I wouldn't make decisions about my treatment without them. I want alternative treatment. If they say no, do I still go?

I've brought this issue up before and they essentially said that if I can convince them of the alternative treatment then they'll consider it. I think, however, that no treatment option I've found will stack up against the research that stands behind treating mental illness with pharmaceuticals. I personally don't buy what psychiatry has to say. Somewhat tangential to treatment, I want to take ayahuasca and other "drugs" medicinally someday but that too I feel I would have to clear with my family (and my family would almost 100% say no). I guess a lot of this question comes down to who controls what I do with my body and mind.

The obvious issue for my family is: "what if you have another episode?". Indeed, another episode would affect my family as much as it would me. But I feel confident, after having experienced two episodes, that I would know if one was starting. I didn't work with a therapist or a doctor during those two episodes. Since my last episode, however, I've been working with both and will continue to and feel confident that they would know if another episode was building. But really, my episodes only happened when I was under extreme stress and did not have the support system then that I currently have (I currently live with my family).
posted by defmute to Human Relations (70 answers total) 5 users marked this as a favorite
Response by poster: I realize I failed to mention something important. The reason I want to go off meds is because I feel emotionally numb on them and really don't want to spend the rest of my life feeling this way (and I'm pretty much on the least amount of meds at the lowest dose possible).
posted by defmute at 12:57 PM on August 22, 2014

A common failure mode to mental illness is recognizing you need help, getting help and going on medication, than starting to feel fine, going off med and ending up in the same place (being mentally ill). That you are feeling fine isn't a sign the medication isn't needed-it is a sign the medication is working. Be very, very careful about going off any medication just because the symptoms have alleviated. There is no shame in taking high blood pressure medicine cause you have high blood pressure. And you don't go off it just because your blood pressure is now normal-not without a doctors supervision anyway.

Not saying you should or shouldn't-I know nothing about you, your situation or your illness (there is difference between say mild depression and acute schizophrenia) or your family. But listen to the people close to you, who love you and have your best interests at heart. They have a perspective you don't, and that is important to evaluate these things, we are often really, really bad about assessing our own condition.
posted by bartonlong at 12:57 PM on August 22, 2014 [54 favorites]

If you live with your family and expect their support then absolutely do not go off your meds without their knowledge or approval. If you lived with me and did this I would make you move out until you were dealing with your condition responsibly, and no, alternative medicine is not dealing with it responsibly. Research exists for a reason.
posted by celtalitha at 12:59 PM on August 22, 2014 [9 favorites]

What bartonlong said.

As well:

Hardcore hallucinogenics like ayahuasca (or mushrooms or peyote or LSD or DMT etc) are a spectacularly bad idea for people with mental illnesses in general.

I personally don't buy what psychiatry has to say.

Why is that? And what is the alternative treatment you are considering? Please remember that alternative medicine that works is called medicine.
posted by feckless fecal fear mongering at 1:02 PM on August 22, 2014 [30 favorites]

You don't say why you want to go off your meds other than you don't "buy" what psychiatry has to say. But you're also relying on a doctor and a therapist to help you should another episode occur. I think your family will probably point out that the doctor and therapist DO buy what psychiatry has to say, and if you're trusting them to help you, then in some ways you need to find a way to buy into that system. That's not to say that it's a perfect system, just that you'll help yourself if you educate yourself as much as possible about various medical treatments, pharmaceutical and non-, and their various effects, side effects, dosages, and so on.

You also don't say why you think ayahuasca will work. If you have rational reasons for it, prepare a sales pitch. Do your homework. Put together a comprehensive presentation on the whys, and a potential action plan for how you'd like to see things play out.

But try to go into it open-minded. You may feel like you have a rational plan, but mental illness can twist people's sense of what is rational. If you trust your family, your doctor, and your therapist, and they can explain to you that your plan does not seem rational, then I urge you to continue with your current therapies. If you haven't had another episode since you started treatment, it may be a sign that the treatment is working.

I'm sure it's frustrating feeling like you are not the one with total say over your life, most of us expect to get the majority vote in our own destiny. But it sounds like your family just wants veto power because they're aware that your illness gets a vote of its own. It's a hard path to navigate, and many families struggle with it. Love each other, trust each other, and hang in there.
posted by rikschell at 1:06 PM on August 22, 2014 [8 favorites]

As a blanket rule, your family is not in charge of your medical care. You are.

That said, as a person that suffers from mental illness, you have cognitive deficits that prevent you from accurately assessing the severity of your illness. Your family's feedback and insights into your behaviour, provided that they are coming from a place of care and concern, are extremely useful and you should treat them with respect.

There is no way for us to tell whether or not you should go off meds. You have not told us:
* Your age
* Your diagnosis
* The age of onset of your symptoms
* Your symptoms
* The length and severity of your episodes
* What your therapist and doctor say about discontinuing your medications
* The likelihood of encountering the types of events that trigger the episodes
* Whether or not your support system is stable

Unlike the above posters, there is evidence that shows that treatments and lifestyle changes such as exercise and mindfulness based cognitive therapy practices are effective at managing certain conditions. So depending on the condition, you might make the case for going off meds under medical supervision. I wouldn't dismiss out of hand the possibility of discontinuing meds.

Like feckless fecal fear mongering, I think your lack of a clear plan for what you are going to do without meds is the deal breaker. You need to really think this through with the assistance of your medical care team and candidly discuss whether it is appropriate for you to discontinue medication and, if so, how to do it safely.
posted by crazycanuck at 1:07 PM on August 22, 2014 [16 favorites]

Is the alternative treatment you're looking at mutually exclusive with pharmaceutical treatment? If it is, that's a huge red flag because an alternative treatment that requires you to abandon modern medicine without the proven track record of modern medicine is selling you snake oil. So not only will you be without your medication, you'll be subjected to god-knows-what substances or procedures in an unmedicated state which can have all sorts of nasty and permanent consequences.

As far as episodes are concerned: you will never, ever, ever be able to predict the future. Ever. You can certainly be bodily and psychologically aware to see one coming, sure. But you'll never be able to tell when the Big Stressor is coming and you need to be able to handle it so you can handle whatever the hell is the source of the stress. It's like learning to walk across the street when you're a kid: you can look left and look right and wait for the light and do everything right and that's what you should be doing. But just because you follow the rules, doesn't mean the rest of the world will and preparedness is not immunity. It's just the opposite; it's a knowledge that things can go wrong and that you need to be prepared for them.

I guess a lot of this question comes down to who controls what I do with my body and mind.

You. At the end of the day, it's you and it will always be you short of incarceration or military conscription. The only person responsible for you is you. The only person who can rightfully make decisions for you is you. You can break promises to your family. You can flush your medicine down the toilet. You can take ayahuasca. You can do anything you want but you will face consequences. And consequences can be painful and mentally and physically disfiguring and permanent.
posted by griphus at 1:08 PM on August 22, 2014 [11 favorites]

I guess a lot of this question comes down to who controls what I do with my body and mind.

Unless they are your legal guardians and are authorized to make healthcare decisions for you against your will, then the answer is probably YOU. However, you must do that within the scope of what your family will allow you to do in exchange for their continued support. Just because you have the absolute right to change or go off your meds doesn't mean your family has to keep you around when you do it.

It also depends on what you mean by alternative medicine. Alternative like a different drug and/or type of therapy? Or "alternative" as in not proven by scientifically-sound studies to successfully treat your condition? If it's the second one, there's a reason it's not backed by science. Not because studies haven't been done - but almost certainly because the studies that were done did NOT show that those treatments worked.

Talk to your therapist and your psych. Ask about ways to restore your emotional balance without giving up pharmaceuticals altogether.
posted by trivia genius at 1:08 PM on August 22, 2014 [2 favorites]

You don't say what illness in particular you are fighting, but here is what I learned while taking care of a friend after she had severe manic episode: bipolar hates consistency and routine. It is at its most powerful when there are lots of changes, no consistent schedule, and lots of chances to catch you off kilter. You are not your illness and your illness is not on your side. It does not want the best for you.

Indeed, another episode would affect my family as much as it would me.

I am glad you realize that. Dealing with an unwell mentally ill person can feel like getting beat up all day every day. It is brutally hard. Like some others have mentioned above, if you were my family member and you ceased taking your meds without the guidance and support of a medical professional I would terminate my relationship with you.
posted by kate blank at 1:09 PM on August 22, 2014 [8 favorites]

The problem with mental illness is that it is more noticeable to those around you sometimes than you. Just as you shouldn't trim your own bangs, you should also not try to fix your own mental illness. There are professionals available for both services. Do not try to self medicate. That dull feeling that you get when you are on your meds is a lot better than the pain and misery that you would cause others by not being on your meds.
posted by myselfasme at 1:09 PM on August 22, 2014 [7 favorites]

I totally understand what you mean about feeling emotionally numb and not wanting to feel that way any more, but what you're planning is irresponsible and unsafe.

Psychiatry is about finding the right combo of medications that will stabilize your brain chemistry and work with your specific needs. If the current combo you're on has a side effect that is causing you a new secondary issue, you need to go back to the doctor or doctors that set you up with this plan and work with them to transition you to a new dose or combo under their supervision and with their permission. It's only when you've exhausted all applicable psych med options that you then start discussing alternative treatment WITH YOUR DOCTOR, not you and yourself alone.

You owe it to your family to be responsible about your mental health, and you not buying psychiatry is a pretty dumb and frankly immature reason to just ditch what's mostly working. You cannot predict your ability to sense when you're having an episode. You also offer no research or compelling reasons to break out of the system serving you. None of this adds up. Go back to your doctor and therapist and discuss a 6 month treatment plan with them instead.
posted by Hermione Granger at 1:09 PM on August 22, 2014 [3 favorites]

I've skimmed your past questions, and between those and the "drugs" scare quotes (as if ayahuasca and other hallucinogens are somehow different from e.g. Effexor by virtue of not being made in a factory) makes me think you should not do this without full family support.
posted by rtha at 1:12 PM on August 22, 2014 [11 favorites]

Also according to past questions you were in a mental health residential facility in both May and December of last year, leading me to believe this is more on the "extreme" end of the spectrum and less on the "mild depression" end. My ex was on the milder end and when he quit taking his meds and began acting irritable and erratic I told him if he was not going to cooperate with his doctors he needed to move out. He did so and I am now a single mother struggling financially, and it is still worth it to not have to suffer through dealing with that. I tell you this to emphasize how absolutely a big deal this is to both you and those around you.
posted by celtalitha at 1:15 PM on August 22, 2014 [14 favorites]

Best answer: Psychiatric meds = neurochemistry. Ayahuasca = neurochemistry. "Buy" them both equally, and don't give extra credit to one just because it's off the beaten path / exotic / separate from "big pharma" / whatever else is appealing about ayahuasca.

Psychedelics can be beneficial to mental health; they really can. But they can also do a lot of harm if they don't mix well with your personal neurochemistry, and if you go in unprepared or with inappropriate expectations. Do a lot of research and formulate a clear idea of what you want to do and why you think it could help you. Run it by your therapist and PD and see what they think. If they're good, they'll want to help you find the best combination of therapies to treat your condition. They can't recommend that you do anything illegal, but they might give better insight as to what is/isn't advisable.
posted by magdalemon at 1:16 PM on August 22, 2014 [5 favorites]

I think you need to consider the possibility that, given your promise, if you break it, you may not have the support system including living environment that you have now. You'll know that better than I will, of course, but I've spent a lot of time in bipolar support groups in support of my bipolar partner, and going off meds is a place where a lot of families have to draw a bright line for their own mental health. You may find yourself cut off or evicted, and I think those are real issues you should take into account when making your decision.

I would strongly urge you not to go off your meds or take drugs without oversight and approval of your medical team, but I recognize that I'm biased here as a family member and sometime caregiver of a loved one with bipolar disorder. So instead I will just say that your decisions are yours, and you get to change your mind - but I would urge you not to minimize the very real risks. Make your choice with all the information and without rushing it.
posted by Stacey at 1:19 PM on August 22, 2014 [5 favorites]

You're going about this all wrong. You're thinking about betraying your promise to your family because your meds make you feel numb and you don't trust your psychiatrist. Why not get a new psychiatrist whom you DO trust and try a new medication? They won't all make you feel numb.
posted by joan_holloway at 1:23 PM on August 22, 2014 [5 favorites]

Oh I just noticed the tags on this question. It is tagged bipolar.

I now change my answer as to whether or not you should go off your meds. My answer is now HELL NO, STAY ON YOUR MEDS.

Bipolar is a lifelong illness that requires medical management. There is a kindling effect to going off and on meds. By cycling the meds you run the very serious risks that subsequent episodes will be worse than previous.

You need to talk to your medical team and perhaps find a med with more tolerable side effects. But you need medication, you will not be able to find evidence otherwise.
posted by crazycanuck at 1:24 PM on August 22, 2014 [22 favorites]

I actually have a friend might be in your exact shoes, and I have seen what it has done to him. While your judgement might be good when you are on your medication, when you can perceive that you are having an episode, it will not be when you go off your meds. Perspective and perception are one of the critical things that disappear, and you won't be able to accurately judge when another "episode" is happening, or indeed if it has already happened. My friend has done this, and wouldn't listen to others who could see it happening. It went badly for his family, for his SO, and his friends.

I implore not to go off your medication, or at least that if you have decided that you want to, to gradually titrate the dosage down. Pills can always be in cut half. Gradually lower your dose. I'm sorry you don't "buy" psychiatry. I'm sorry that you feel emotionally numb (said friend above said the exact same thing), but perhaps it will make you feel better that the consequences to the numbness are perhaps worse.

Given the number of different receptors that DMT binds to, I would be extremely wary. Because ayahuasca is not regulated, I'd be worried about the conditions under which it was grown or manufactured; you basically have little control and very little knowledge of its dosage and purity.
posted by the_wintry_mizzenmast at 1:28 PM on August 22, 2014 [5 favorites]

Oh goodness yes. What crazycanuck said. Unmedicated bipolar is pretty close to being as bad as unmedicated schizophrenia. It's dangerous to you and will have seriously bad effects on those around you.

Also, like rtha, having only now looked at your previous questions on this issue.. why (and I mean this in the sense that you should ask yourself this) is it that you keep looking for other solutions to the problems affecting you? It is obvious from your question that you have found a therapeutic modality that is working for you; you're stable, you're not having episodes. I get the emotional numbness thing, but are you truly sure that you're emotionally numb, as opposed to experiencing a much more neurotypical range of emotions?

Please, stay with your current treatment regimen. Discuss your concerns with your treatment team, but please, they are the experts here.
posted by feckless fecal fear mongering at 1:30 PM on August 22, 2014 [7 favorites]

Response by poster: Hey everybody, I realize I should have put more information into this question.

To begin with, I'm diagnosed bipolar type II and am a 28 year old male.

In terms of the alternative treatment, it would be with a well respected doctor who used to practice psychiatry. I don't intend to go off meds and replace it with nothing.

I would not be going off meds without a support network including a therapist and the aforementioned doctor.

In terms of "not buying psychiatry", I just think that just because something hasn't been researched in western clinical way that it is not invalid.
posted by defmute at 1:32 PM on August 22, 2014

In terms of the alternative treatment, it would be with a well respected doctor who used to practice psychiatry. I don't intend to go off meds and replace it with nothing.

Can you specify or describe what the treatment is?
posted by griphus at 1:34 PM on August 22, 2014 [1 favorite]

So what exactly is this alternative treatment? What are its modalities, and what are its outcomes?
posted by feckless fecal fear mongering at 1:34 PM on August 22, 2014 [1 favorite]

In terms of the alternative treatment, it would be with a well respected doctor who used to practice psychiatry.

Why does he no longer practice? Revocation?
posted by asockpuppet at 1:36 PM on August 22, 2014 [5 favorites]

Response by poster: The treatment is based around eating the right diet and taking the right supplements. I understand that doesn't sound very good to most. I guess on another note, that's why I seek this doctor and doctors like him: because he runs blood tests and etc. opposed to no tests from traditional psychiatrists.
posted by defmute at 1:37 PM on August 22, 2014

Response by poster: No the doctor I mentioned doesn't "buy psychiatry" anymore as well.
posted by defmute at 1:38 PM on August 22, 2014

right diet and taking the right supplements.

What diet? What supplements are "right"?
posted by asockpuppet at 1:39 PM on August 22, 2014 [3 favorites]

Neither of those things will treat bipolar disorder. If you are being medicated for bipolar disorder, you are undergoing regular blood tests to ensure correct titration, as well as to check for liver and kidney function. Assuming your primary medication is Lithium or valproate, biweekly testing is mandatory.
posted by feckless fecal fear mongering at 1:40 PM on August 22, 2014 [8 favorites]

Is there any peer-reviewed evidence in favor of treating bipolar disorder nutritionally?
posted by KathrynT at 1:40 PM on August 22, 2014 [5 favorites]

Does this doctor have an active medical license?
posted by asockpuppet at 1:41 PM on August 22, 2014 [5 favorites]

Response by poster: I haven't talked about all the details yet but a gluten free diet is part of it (he's found a link between gluten intake and mental illness) and the supplements would be different vitamins and other based on the results of my blood, stool and other tests.
posted by defmute at 1:42 PM on August 22, 2014

Some of this doesn't make sense: I take medication, and I also have to watch my diet (no caffeine, etc.) and I take supplements, and all of this is overseen by a medical doctor who tests my blood on a semi-regular basis (used to be weekly, then monthly, now annually.)

These things work together, and the only time I wouldn't take one because of the other is contraindication, which is rare and why I make sure to research anything I put into my body. If the supplements and dietary changes your doctor is recommending would genuinely help, then it should help on top of the medication unless, again, they're contraindicated.

I mean, maybe the problem is that you have a shitty psychiatrist or one not compatible with you, I don't know, but there are bad doctors. Someone has to graduate at the bottom of the class and they get to practice too.
posted by griphus at 1:43 PM on August 22, 2014 [3 favorites]

Response by poster: feckless fecal fear mongering, right but these tests aren't to monitor medications levels they're to diagnose.
posted by defmute at 1:44 PM on August 22, 2014

he's found a link between gluten intake and mental illness

I would be interested in reading this research.
posted by feckless fecal fear mongering at 1:45 PM on August 22, 2014 [5 favorites]

You're free to pursue alternative treatment methods if you want, regardless of what your family says. They don't own you. You may have to deal with consequences if they find out though, so be prepared for that. You just have to own that choice and decide whether or not the consequences are worth it to you. And you can always go back to something more known if the alternative methods aren't working out.

I'd suggest being very careful with psychedelics though. I don't really buy into the whole psychiatry system either, but I think people tend to exaggerate the medicinal value that some of those things have.
posted by cosmicbeast at 1:45 PM on August 22, 2014

Best answer: The treatment is based around eating the right diet and taking the right supplements. I understand that doesn't sound very good to most.

I have actually in fact taken that exact approach for a completely different condition. My first hand experience, over 13.5 years and counting of pursuing "alternative" treatment is this:

If the right diet and supplements help, it will improve your condition so you can gradually taper down and stop needing meds. But it is a super duper bad idea to dump the meds first. If this wellness approach has any merit at all, then it can start working while you are still on medication and can get you to a better place so you don't need drugs.

It took me years and years and years to get off all my medication. Because I am now medication free, an awful lot of people see me as some strident anti-drug extremist. And I think your plan is really terrible.

If your alternative treatment guy is brilliant and his diet and supplements can help you, I assure you, they can help whether or not you still take prescription drugs. If they can't help you while you are on the drugs, then they also can't help you when you go off them.

As you have laid it out here, this is a bad plan.
posted by Michele in California at 1:45 PM on August 22, 2014 [50 favorites]

Best answer: In terms of "not buying psychiatry", I just think that just because something hasn't been researched in western clinical way that it is not invalid.

So . . . how does that also invalidate everything that has been researched? That's pretty half-baked as philosophies go.

And why does this person no longer practice psychiatry? Is it by his own choice? When you say well-respected, by whom is he respected? Other medical practitioners? Is anything that he suggests evidence-based? He found a link between gluten and mental illness? Great! How trendy! Have any of his findings been peer-reviewed?

Why does this doctor no longer "buy" psychiatry? Again, just because you believe certain things haven't been sufficiently researched doesn't mean that you reject everything that has.
posted by pineappleheart at 1:46 PM on August 22, 2014 [6 favorites]

I think, however, that no treatment option I've found will stack up against the research that stands behind treating mental illness with pharmaceuticals.

Now why do you think that is?

I guess a lot of this question comes down to who controls what I do with my body and mind.

You do. But with this right comes responsibility. You have the responsibility to follow the best and most effective treatments and comply with the treatment protocols. You are responsible for finding to find a mental health professional who can treat your condition while minimizing side effects (with the first part being a non-negotiable condition).

Bipolar is serious. It's not like low grade depression or anxiety where someone might simply be comfortable living within those limits. And you can't expect to be in control of yourself during episodes since, by their nature, if you were in control of yourself, they wouldn't be episodes. You will do stuff that makes absolutely perfect sense to you at the time buy will be absolutely destructive to you and your relationships with others.

Part of the problem is that we get attached to our illnesses as part of our identity. You are not your illness. I am not my melancholy catastrophizing anxiety. You need to stop fetishizing your disease as "something that makes you, you." Or at least rebuild an identity as a person who doesn't have bipolar symptoms because they are treated.

One comment on MeFi I related well to was a comment about her drugs that they "took away her super powers." Same here. I don't have that super motivation any more that gets me up in the middle of the night to finish a research paper. I need a full 8 hours of sleep rather than 6-7 (or sometimes 4). Do I miss those super powers? Hell no. That paper never got published. I am better off making steady daily progress rather than having bursts of productivity during anxiety episodes. And I feel like I can have long term relationships now instead of being afraid of having them crash and burn like my previous ones did. And my problems are pretty mild.

I might also add that for the future of your relationship with your family, you should stay on a medically-proven treatment regimen. Over time, if you become known as a family member who doesn't take your meds and subjects everyone to your episodes, they will have less and less patience with you or desire to spend time with you. Those things you say or do during an episode will be things you can't take back and things that will reverberate through the years in your family's memories when it comes to how they consider their relationship with you.
posted by bright colored sock puppet at 1:46 PM on August 22, 2014 [5 favorites]

Do you live with your family? Did they take care of you during your last episode? Are they the ones who would bear the brunt of your treatment going awry?
posted by fingersandtoes at 1:48 PM on August 22, 2014

Also, do you know what sort of supplements? Are these just straight-up alphabetical vitamins and fish oil, or some sort of proprietary (and very expensive) secret mixture or those little black mystery TCM balls?
posted by griphus at 1:49 PM on August 22, 2014

My mom is actually a psychiatrist who has seen some good results with low-allergen diets in patients with bipolar. However, I don't think she would ever stop medications that were working to try this. There is no reason you can't take medication and eat a gluten free diet st the same time. She told me it takes about two months to see if the diet will help.

I suspect the blood tests are probably for antibodies related to gluten. They're not very accurate though.
posted by carolr at 1:49 PM on August 22, 2014 [5 favorites]

Who paid for your inpatient care last time?
posted by celtalitha at 1:51 PM on August 22, 2014 [3 favorites]

Best answer: I have been on the family side of this equation, with bipolar disorder, with both my mother as I was growing up, and in my adult life with my (now-ex) wife. I have done a lot of research in this area. I have experienced personally the effects of going on and off medications, and experimenting with medication changes. I am not a doctor, nor do I play one on TV.

Finding the right medications makes a huge difference in enjoyment of life for the treated person, as well as the people around them. Sometimes what constitutes the "right medication" can change, as we age and brain chemistry adjusts.

You made this promise: "I made a promise to my family that I wouldn't make decisions about my treatment without them." for a reason.

IF it is the right time to experiment with different medications, and your therapist/doctor/family all agree, I would recommend that you extend/incorporate your promise of keeping your family involved with medication decision to include feedback on how well the medication experiment is going. Meaning, you may feel that things are going great! And everyone around you may disagree. If so, how would that be handled?

This may be the key that gets your family to go along with the experiment. If they feel that they have participation in the process.

Successfully navigating these kinds of changes really does require everyone being on-board, willing to face the (very likely) difficulties that it will raise, and agreement to see it through to some point at which you can make a determination over whether it's better, worse, or about the same.

It is my understanding that the main reason that successfully treated (medicated) people go off/change their medications is precisely the one you listed above. Feeling "emotionally numb" or "not fully alive" or "not really myself". I say this just to bring up that you are not alone in this feeling. Please discuss this with your therapist/psychiatrist. With time and successful treatment this feeling can pass, or at least decline. In my own personal experience, there has been no combination of drugs that completely alleviated this feeling, but it can be something that gets better.

Ultimately, the person who will make final decisions on what you choose to do will be you.

The big danger, of course, is that this can lead to bad relations with your family, if not outright rejection/termination of those relationships in the very worst case. Please do be careful! You have my sympathies... I know how hard this is.
posted by Lafe at 1:51 PM on August 22, 2014 [5 favorites]

QFT: There is no reason you can't take medication and eat a gluten free diet st the same time.

I've never heard of people who are diagnosed with bi-polar disorder being able to manage their lives without medication. Wouldn't this get news headlines?
posted by joseph conrad is fully awesome at 1:54 PM on August 22, 2014 [3 favorites]

Response by poster: fingersandtoes, yes to all.

Griphus, I think it would be a combination of both.

Celtalitha, my family.
posted by defmute at 1:57 PM on August 22, 2014

My mother and my half-sister are both bipolar. (Mom is type I, sis is type II.) Both have gone off their meds. In my sister's case, going off her meds and trying a "holistic" approach (diet/supplements) resulted in her abandoning her husband and children. Mom just gets more abusive and irrational, and ends up self-medicating with things you'd probably like to try, which actually just makes things worse.

Don't go off your meds. It sounds like you probably need to have them changed or increased, if you're thinking this is a good idea.
posted by palomar at 1:59 PM on August 22, 2014 [5 favorites]

Full disclosure: I keep posting here because I have bipolar. I've never been hospitalized. I never ran down a street naked or went on a massive spending spree or attempted suicide. In fact I only just went to a doctor and started medications about 4 months ago. I HAVE tried various diet and lifestyle methods over the years, including gluten and lactose free for several months which made no discernible difference. Extreme exercise and a very consistent sleep schedule did help, but not entirely.


I am 31 years old and spent 30 of them off medication, graduated college, led a fairly normal and productive life but I will never voluntarily go off medication again.

With your history? Please please please don't do it.
posted by celtalitha at 1:59 PM on August 22, 2014 [20 favorites]

What others have said above about kindling is a very important point. It is likely that without medication your episodes will get worse and worse and closer and closer together. That's not a risk I personally take and not one I would advise you to take.

What you describe is basically setting yourself up for the classic bipolar relapse.
posted by fiercecupcake at 2:04 PM on August 22, 2014 [1 favorite]

My son had bipolar. Had. Going off your medications and having an "episode" can literally kill you. Ask me how I know.
posted by drlith at 2:07 PM on August 22, 2014 [50 favorites]

Griphus, I think it would be a combination of both.

By "both" do you mean both off-the-shelf vitamins and proprietary medicines? Because if you're taking the latter you absolutely must know what's in there, and how it will effect you. There's a huge, huge market in selling expensive supplements to people who want solutions. Sometimes it's just multivitamins you're paying a 100X markup on. Sometimes it's genuinely dangerous substances they're allowed to sell because the "supplements" laws in the U.S. are not great.

Either way, before you take anything, you need to know exactly what's in it, what it does, and how it will effect you. If there's one thing that western medicine has absolutely correct that many alternative treatments do not (and unscrupulous vendors of alternative treatments take advantage of) is that you absolutely must know what you're putting in your body and it is the responsibility of whoever is treating you to inform you of what you're doing, what the side effects are, and so on.

Apply the same amount of skepticism you do to traditional psychiatry to this alternative treatment. Whatever aspect of psychiatry that you consider a failure, you have to subject this to the same tests. You believe that things outside the Western medical paradigm can help you, which is okay. But you have to find out why the treatment is "alternative" and not rolled into Western medicine as so many things have been.
posted by griphus at 2:10 PM on August 22, 2014 [9 favorites]

I am stringently gluten-free, exercise regularly, go to therapy, and meditate, and I still have mental illness. You know what keeps me from my lifelong thoughts of suicide? Meds.
posted by gone2croatan at 2:12 PM on August 22, 2014 [15 favorites]

It's your body you can do what you like with it. I am assuming you respect your families input or you wouldn't be worrying and would have just done what you wanted to do. I think you are approaching the situation in an extreme either/or manner.

Why could you not use the doctors methods, checking with your current doctors that nothing is contra indicated, to support what you are already doing? If they work, you would be able to slowly reduce your meds, if they don't you are in a safe environment with the support of a family you haven't alienated. Also you can decrease your meds in a controlled manner under doctor supervision on the off chance it works because that's not stuff you want to just stop cold turkey.
posted by wwax at 2:17 PM on August 22, 2014 [1 favorite]

Best answer: I guess a lot of this question comes down to who controls what I do with my body and mind.

You control what you do with your body and mind, but being in a family means making sacrifices, making agreements, and keeping them.

Nobody can force you to work a certain job, for example, but if you're supporting a spouse and a child, you don't just up and quit because then you're not holding up to obligations you agreed to and violating expectations you worked to create.

Even if you're a dependent, your family is relying on you to fulfill a certain role in a certain way. On top of that, they're the people you can count on to have your best interests at heart, and who can be counted on to see things about you that you yourself cannot. (Google Johari window.)

So that's, like, an answer to your question in the same philosophical terms in which you posed it.

Secondly, there are other ways of handling this that are less extreme than abandoning western medicine. Have you sought out a therapy group for people with bipolar disorder, for example?
posted by alphanerd at 2:21 PM on August 22, 2014 [4 favorites]

I have bipolar 2 as well and this is why I follow your post with interest.

defmute, there are traditional psychiatrists that do some bloodwork for diagnostics. Specifically, they look at thyroid function and vitamin D deficiency. I have had a traditional psychiatrist prescribe supplements for vitamin D, fish oil (marketed as Omacor/Lovaza in the USA), and folic acid (Deplin in the USA). There are evidence for these and you can discuss these with the psychiatrist you have today. This is not incompatible with western medicine. I take D3 supplementation to this day.

Mental illness does not show up in blood tests. I don't know what else you hope to turn up in diagnostics.

Psychiatry is art and science. I can understand disenchantment with the western medical establishment, especially since many treatments work so poorly and nobody understands why.

That said, your treatment is working and you're feeling better than you were before. If you go off your meds, they might not work again. I can tell you that re-stabilizing during/after episodes is much more taxing than staying stable. It is so risky to abandon them, I don't even know where to start.

You are 28 years old and you can't live with your family to keep you into falling into episodes forever. Be responsible here. I would suggest you go move out and manage yourself before trying something like this. Your family is quite reasonably objecting to you acting against medical advice and I would completely support them in cutting you off (and letting you get even sicker) for it.
posted by crazycanuck at 2:47 PM on August 22, 2014 [3 favorites]

Best answer: I believe that Western psychiatry has a terrible history of causing as much -- if not -- more mental illness than it solved. I believe that the field is still making major mistakes, many of which won't be revealed in our lifetimes. I believe that medication is over-prescribed. I believe that alternative treatments that cannot be studied via the scientific method (because they're illegal, because such efforts require a great deal of funding, etc.) may have some validity. I believe that entheogens can have a positive impact on some people's brains. I believe that some medications can dampen emotions, and that the dampening effect can have a major impact on someone's experience.

I also believe that most alternative treatments have been proven ineffective. I believe that supplements often don't include the claimed ingredients. I believe that there are just as many, if not more, unreliable motivations -- profit, ego, the placebo effect -- in alternative medicine as there are in Western medicine.

I believe that untreated bipolar disorder can have catastrophic results. I believe that you need the support of your family for any major changes you are going to make, in part because of the enormous impact those changes may have on their lives. I believe that it is very difficult to make wise decisions about one's own treatment when grappling with a mental illness.

I believe that it is very difficult to trust the wisdom of internet strangers who know little about your situation and may discount the numbing experience. I believe that you are surrounded by wise people in real life who have your own best interests at heart and can provide good counsel. If you don't trust those supervising your care now, shop around. If this medication has awful side effects, consider carefully trying another that has proven results. If you want to experiment with diet without shifting your medication, why not? Finding a support group sounds like a great idea. But please, take it from someone who shares some of your skepticism with traditional psychiatry -- that same skepticism should apply to alternative treatments and your solo decision-making ability too.
posted by equipoise at 3:03 PM on August 22, 2014 [14 favorites]

I believe that there are just as many, if not more, unreliable motivations -- profit, ego, the placebo effect -- in alternative medicine as there are in Western medicine.

This is a very, very serious issue. As someone who has pursued an alternative remedy path and who tries to make information available to others, this has been a super sticky thorn bush for me. I will not go the "consultant" route because I feel very strongly that one of the big problems with Western medicine is that they prescribe treatments which get short-term results that the doctors can take credit for and then there is a long multi-page fold-out of warnings about possible side-effects, etc. And when you take these drugs and gradually get worse, for my condition, doctors then blame your long term deterioration on "the normal progression" of the condition, thus washing their hands of any responsibility for the long term negative effects of the drugs.

For me, this is a super large criticism of Western medicine. I got better after basically being written off for dead by doing the exact opposite and trading short term costs for long term gains. And I still do not have any idea how one can "sell" that approach and find a way to effectively monetize it. And I have been doing this for years. So I took down/moved my website twice and it is currently being rebuilt and currently has like one reader, someone who tracked me down after I disappeared from the communities related to my condition.

So this is a real pain point that I personally don't know how to solve. And I tell you that to say this:

If your alternative treatment provider is selling you treatment on much the same basis (in terms of business model) as that used by more conventional providers, then I strongly suspect he has not solved this issue and his approach will therefore try to make money in the same way as the conventional model: By getting short term gains he can claim credit for while ignoring or washing his hands of long-term costs. And this is far more concerning with alternative, unproven therapies. Conventional medicine can do this really awful thing to you but they at least have some kind of checks and balances so the gains are at least short and mid-term viable.

I got better because I was dying and in constant excruciating pain and I did not care if the alternative treatments literally killed me. I had nothing to lose. I was already at death's door. And I said "fuck it, I am just going to try shit and see if anything helps" because the doctors were not really offering me much of anything. So I went in to this with eyes wide open that pursuing alternative remedies may well kill me and do so fairly quickly. I was willing to accept that because I was so miserable that a quick death would have been preferable to what doctors were promising me.

Which is to say that, to my mind, an unproven alternative therapy where he charges you for service on the same basis as a regular doctor has all of the downsides of conventional medicine, none of the upsides and then this additional burden of problems where these short-term gains for which he can claim credit might kill you in the near future.
posted by Michele in California at 3:32 PM on August 22, 2014

58 answers, and you "best answered" the only one that agrees with you. That is strong evidence that your thinking on this topic may be distorted.
posted by KathrynT at 3:40 PM on August 22, 2014 [9 favorites]

KathrynT, please read my entire comment.
posted by equipoise at 3:58 PM on August 22, 2014 [1 favorite]

Response by poster: KathrynT, why the hostility? You're right there are 58 or so answers. There are a lot of answers to consider for best answer. Equipoise's answer in one that stood out but it doesn't mean it's the last one I'll pick. Anyway, what do you gain out of calling my thinking distorted?
posted by defmute at 4:37 PM on August 22, 2014

I'm not being hostile (and yes, equipoise, I read the whole comment -- my apologies for being overly general). I don't gain anything from it, obviously, but as a person who myself struggles with mental illness, I recognized a pattern that may indicate distorted thinking, where answers that reinforce your existing thoughts on a subject are given far more weight than those that may offer new information. And because I care enough to answer the question in the first place, I cared enough to mention it. I apologize for any hostility; such was not my intent.
posted by KathrynT at 4:43 PM on August 22, 2014 [4 favorites]

Response by poster: Sorry for misreading your comment KathrynT. I see how you thought I could just be going with or existing beliefs. I am carefully considering all the information presented, though.
posted by defmute at 4:48 PM on August 22, 2014

KathrynT said what I was thinking, which is why I favorited her comment. The green is a good place to get feedback, and the feedback isn't always what you want to hear; I support her comment on what you have selected as a 'best answer'.
posted by joseph conrad is fully awesome at 4:49 PM on August 22, 2014 [2 favorites]

(I see your follow-up now, defmute.)
posted by joseph conrad is fully awesome at 4:51 PM on August 22, 2014

I am, honestly, extremely worried for you. It appears as though you're being taken in by a charlatan who will do nothing but worsen your condition. Bipolar disorder is like diabetes; it doesn't go away, and while diet and lifestyle changes can help manage some of the worst of the disease, you're still going to be on medication your whole life to keep it under control.

If, as was pointed out above, this kind of therapy actually worked, it would be ENORMOUS HEADLINES EVERYWHERE. The fact that it isn't should give you a great deal to think about.

There is no link between gluten and mental illness. Bipolar disorder is a neurochemical imbalance that is not addressable with vitamins and 'supplements,' nor is it diagnosable via blood tests. That is why your treatment team hasn't given you a blood test for bipolar disorder; there isn't one.

Untreated bipolar is a scary thing. And you have already had, what, two episodes in the past twelve months? As said above, the usual failure mode for mental illness is "I feel better now, I don't need that stuff anymore" when it's 'that stuff' that is making you feel better.

Please do not leave your treatment team for this other doctor. There's a reason why medicine works the way it does; we go with proven modalities that have been studied and verified to work within the knowledge we currently possess. That knowledge can change, but unless this doctor has peer-reviewed research confirming that a) bipolar disorder can be controlled with diet and supplements (what supplements, exactly? what is the 'right diet'?), b) can be diagnosed via a blood test, and c) that there is any link between gluten ingestion and mental illness, s/he is a charlatan preying on people.

With two episodes in under twelve months under your belt, the very last thing you want to be doing right now is messing with a therapeutic system that is working to stabilize you. Especially since doing so will mean, most likely, that you will lose most of the support network you currently have; I cannot imagine that your family would possibly be supportive of therapy that is completely unproven. To say nothing of downing hallucinogenics for their alleged healing properties. I say this as someone who has more than dabbled with hallucinogenics in the past. They are not a good idea for mentally unstable people, they really, really aren't. Which is why I don't do them anymore.

Please. Stay with your current therapeutic team. Stay with the medications you are on, because they are working.

Address concerns you have with the doctors and specialists who are relying on proven science, and not on, well, quackery.
posted by feckless fecal fear mongering at 6:18 PM on August 22, 2014 [7 favorites]

Response by poster: Hey ya'll, I want to thank everybody for huge number of responses. After reading through everyone's response, I'm I'm not going to be doing anything without my family's consent. I found out that the alternative doctor is a board certified psychiatrist and still uses pharmaceuticals when he finds it appropriate. In the case that my family doesn't comply, I'll continue treatment with my psychiatrist and therapist. As stoneweaver reminded me, I'm very lucky to be able to have a combination that keeps me stable. Anyway, thanks once again to everyone who commented; I'm always moved by the amount of care that this community shows when I ask questions.
posted by defmute at 6:20 PM on August 22, 2014 [15 favorites]

I disagree with the notion that just because it's your body you can do what you want with it. My hand is mine but it would not be ok for me to use it to grab a knife and stick it into my husband's back. It wouldn't even be ok for me to run away and abandon my responsibilities to my family.

Going off meds because one doctor thinks maybe it'd be an interesting experiment (because he thinks gluten elimination can control bipolar, no less!) is hugely risky NOT only to you but to your family, and it is not ok for you to assume that risk when it's going to hurt them, not just you. You are lucky enough to have a solution in place. So many people strive to get where you are without as much success. Don't throw it away. It isn't always possible to get back to the same controlled place once you stop.

Good luck, I know it's not easy even with working meds.
posted by fingersandtoes at 8:41 PM on August 22, 2014 [1 favorite]

Just a little reframe for you:
Start considering avenues to explore as complementary therapies, rather than 'Alternative' therapies.

It's a little mental shift, mostly. Alternative suggests you give up working medicines (!!), complementary is, hey, anything that doesn't interfere with your meds? Try it! See if it works!
Diet and supplements approaches - awesome (e.g. no results on Vitamin D + bipolar yet, but good for depression, schizophrenia, many other conditions, so that's a good one).
Absolutely no reason to stop your meds before starting on them, and I was a little confused and worried, as to why that was presented as the choice.
Try and catch any 'false ultimatums' you're presenting yourself with.

In regards to psychedelics, there's research, and I've heard 'anecdotal' evidence for them helping OCD and depression (I'd use the metaphor of psychedelics often serving as a psychological laxative, for when you're emotionally constipated), but I have NOT seen it be useful for bipolar. Possibly not the right horse for that particular course.
posted by Elysum at 9:57 AM on August 23, 2014 [1 favorite]

Best answer: It's a little mental shift, mostly. Alternative suggests you give up working medicines (!!), complementary is, hey, anything that doesn't interfere with your meds? Try it! See if it works!

This ^.

I will add a few thoughts to that in hopes of helping you find a path forward so you don't feel simply "trapped" on medication, with no hope of a way out:

a) If drugs help, then, in some sense and to some degree, your mental health issue is biologically based and can be viewed legitimately as a medical issue with psychiatric effects.

b) You impact your biochemistry, and that includes your brain chemistry, every single time you eat or drink anything. So getting better educated about what research does exist on things like "vitamin D helps with depression" is all to the good. Because you are basically already playing with your brain chemistry every single time you put food in your mouth, except you are just doing it kind of ignorantly. And you can pursue information about those things without making any decisions any time soon about whether or not to stop your prescription meds.

c) Regardless of what studies there are that "vitamin D has been shown to help some people with depression" and so on, the single most important thing you can do is start a journal where you record foods that you eat and record any important or relevant medical and psychiatric details. Because it kind of does not matter if vitamin D is statistically likely to be useful. What matters is what specific impact different things have on your specific, unique brain chemistry. And you find that out by observation and trial and error.

This last has been the direction I have proceeded in for 13.5 years. I started with observations about how I personally reacted to specific things and then went looking for information that might help me understand why. So I did not start with experimenting on myself and I did not start with shots in the dark about "well, blah helps some people some of the time, so let's try that." I started with understanding as best I could how my own body was in fact already responding to things I was already doing to it and then did research to try to understand why in order to develop a working hypothesis and a means to improve my decision-making process.

Keeping a journal is a pretty safe thing to do. It in no way interferes with your meds. Writing down what you are eating and doing currently puts you under zero obligation to change anything you are doing any time soon with regards to diet, supplements, prescription drugs etc. Just commit to, say, keeping a journal for six months and googling up interesting info any time you notice something and see if you can start putting bits and pieces of info together.
posted by Michele in California at 10:20 AM on August 23, 2014 [1 favorite]

Best answer: An integrative psychiatrist like the one you linked to is an excellent place to start. They will have the knowledge of traditional, Western medicine (psych meds) and "alternative" methods (herbal therapies, lifestyle suggestions, etc.). Some integrative psychiatrists, such as Dr. Kelly Brogan, do not advocate for psych drugs at all, and help their patients wean off them if necessary. Others — like the two integrative psychiatrists I've visited personally — rely on psych drugs, but augment them with many natural therapies. (BTW, I do not know Dr. Brogan personally, but she is incredibly well-respected in the integrative psych and alternative health communities. Her blog is an amazing resource, and she has legit studies to back up her claims.)

This is clearly a hot-button issue, and you're getting a range of responses. I would like to share (a very truncated version of) my story in case you find it helpful. However, I am not your doctor and I am not saying you should do any of the things I did, or that any of them will work for you.

I was diagnosed with Bipolar Type II, social anxiety disorder, PTSD, and agoraphobia. My psychiatrist ordered blood work on me and found that anemia was contributing significantly to my depressive symptoms. We got my iron up, but I was also started on Zoloft and Lamictal. I felt fantastic for a while, until these meds caused me to gain 60 pounds and I felt very numb and flat all the time. I was also on a few other things, like Rhodiola, magnesium, etc. I did talk therapy (with a separate counselor) for about two years, too, until I felt it was no longer helpful.

I tried a few different SSRIs and complementary psych meds, but the weight kept creeping up and I kept feeling worse. After doing a TON of personal research, I decided I wanted to try to come off psych meds and take a more natural approach to my health. After reading this book (which I cannot recommend more highly if you are thinking about tapering off any kind of SSRI), I worked with my psychiatrist to very slowly taper off my meds, using an approach called a "Prozac bridge." Simultaneously, I started eating a very strict Paleo diet (the Whole30, to be specific), and have stuck with it ever since. (Whole30 and Paleo are gluten-free; your practitioner might be referencing Paleo.)

Getting off meds was hard, and I had bad withdrawal symptoms. I pushed through, though, and am completely med-free. I'm losing the weight, I no longer feel flat and numb, my brain fog has lifted, and my moods are more stable than they've ever been — even more so than when I was on meds.

However, this has required me to completely change my lifestyle. My health is now my #1 priority. I cook all of my own food and can't rely on convenience foods or binge on ice cream any more. I prioritize exercise and sleep. I spend a lot of time taking care of myself. This was a tradeoff I was willing to make in order to get off meds, manage my moods, lose the weight, live a more natural lifestyle, and feel like myself again.

I am completely symptom free. I take no psych meds. I feel better than I ever have in my life. For me, what I eat makes all the difference in the world. A lot of people love to shout "quackery!" when it comes to alternative approaches. I am living proof that they can work. This is not saying that they will work for you, but they did work for me.

There are many, many physiological imbalances that masquerade as psychiatric disorders. Psychiatry is often the catch-all for a range of conditions most allopathic physicians are not trained to (or are too busy to) catch. I do not think psychiatry is "bogus," but generally, it is designed to treat symptoms, not the root cause of symptoms. Psych drugs saved my life at one point. But they were also slowly poisoning me.

Like I said, an integrative psych is a great place to start. Please don't cold turkey your meds and go off to an ayahuasca retreat. You could do some serious damage. I'm not opposed to hallucinogens, but they DO NOT mix with psych meds. Take a slow, gentle approach to this, be open and communicative with your family, and find what works for you. Best of luck.
posted by shiggins at 2:37 PM on August 23, 2014 [2 favorites]

Read some literature by Peter Breggin. You can find some of his books at your local Barnes and Noble. Vast knowledge of the effects of these drugs, the process for getting off of them. Amazing writer.
posted by cheetahchick at 4:58 PM on August 23, 2014

I think I first read about this here, but Evolutionary Psychiatry is a blog that discusses current medical research on diet, exercise, etc. and mental illness. There's not always a lot of research, but some has been done, so it's a good place to start if you want to learn more about the holistic psychiatry community. Not a lot there on bipolar disorder, though.
posted by subdee at 9:22 AM on August 29, 2014

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