“I Did X, Chucked My Meds, Now I Feel Great”

I really need to stop this trolling habit, but it’s so addicting. Yesterday it was trolling for stories on bipolar disorder. This time it was alternative health. Right there I should have known the amount of BS that I would encounter. I’m not a spiritual person by any means, at best, I’d convert to reformed Judaism because I get along with the Jewish culture very well. But spiritual healing is something I rank with homeopathy as criminal enterprises that should be shut down and prosecuted. Why so extreme? After all, they’re just practicing their beliefs. However, those beliefs kill. And peddling beliefs that jeopardize other people’s lives is in my opinion, criminal. Just like refusing insulin to a diabetic child because your beliefs don’t allow it. There are facts in the world, and medicine holds claim to some of those facts, and I believe that laws should be based on fact first, especially if you claim to be able to cure people without facts.

The most entertaining ones are Reiki and things dealing with chakras. It’s difficult to even get past the bizarre color analysis and then the sometimes suggested “looking at colors” to alter moods. As far as I know, and I grew up in an orange-red painted room, colors don’t influence my manias or depressions. But what is scary is the anecdotal support for these things. Hence the title of this article. Someone with a mental illness chucked their pills and voila, the world opened up. This is a meme that is carried over into boards like CrazyMeds. People adopt some behavioral/nutritional pattern, chuck their meds, and now they’re fine.

For the record, I haven’t come across anyone who was schizophrenic that did this and now feels fine. Probably because the disease is so marked by psychosis that it’s easy to identify when something is working or not. But I did encounter it a lot with people who were depressed or bipolar. Also, for the record, I did not find anyone who was severely depressed who made these claims. Again, that might be because that too is very clearly marked in its mental state. That isn’t to say that there are not people who make claims like the title who have severe depression or schizophrenia, but in my limited search capacity along small blogs and CrazyMeds, I did not find them.

For depression, it’s understandable that getting rid of medication might help. There is a growing debate over the efficacy of antidepressants for anything but severe depression. In some cases it might make things worse. This happened to both my sister and my sister-in-law. Antidepressants didn’t help them and actually made my sister suicidal for years until taken off of the drugs. Antidepressants can have these paradoxical effects. Just like opiates don’t sedate me, but up me and can induce a mild hypomania. The effects are probabilistic, which means that there is a chance that something else happens. In the case of the miraculous recoveries after leaving antidepressants, it very well could be that they fall into the slim margin of paradoxical effects. It’s even happened to me, where bupropion (Welbutrin) pushed me from feeling horribly depressed to trying to kill myself just to escape the depression. I don’t fault “western” medicine for this, I simply realize that there are risks as well as rewards for every medication out there. The brain is unique and complex, bizarre side effects are bound to happen in some people.

So yes, sometimes getting rid of these drugs is a good idea, especially if they are not helping or the side effects are intolerable. But to move from “it didn’t work for me and X number of people” to “no one should take these and adopt my specific regimin” is a horrible induction. First, it sees a small population as a representative for a larger one, dismissing the reality that a larger number of people are helped than harmed by the drug. Secondly, it demonstrates a narrow understanding of the mind by saying that a specific avenue of action is appropriate for everyone. In reality, to get these drugs to work, it isn’t a set and forget system. Constant updates with a psychiatrist or an internal medicine doctor are required to make sure that it is working or if something else will work.

With bipolar, it gets even more scary because of the lack of knowledge about the disorder. For starters, ridding yourself of mood stabilizers, especially lithium, provokes manias. Obviously you’ll think that it was a smart move because you’re flying high on the world. It’s scary, but mildy amusing, to read some of the posters because it’s clear that they are manic just by the disorganized nature of their writing. It’s the kind of thing where after reading it you think to yourself “someone’s off their meds”. As testimonials go, these are not exactly the best endorsements for people who are bipolar or know people with bipolar because the signs are so bluntly obvious. These are short term endorsements and most testimonials don’t disclose how long they’ve been off of them.

But there’s another kind of bipolar testimonial. The “I’ve done X, gotten rid of my meds, and Y years later I feel great”. It sounds very convincing. It’s not the short term mania that happens after withdrawing from lithium or other mood stabilizers. In fact, it sounds like they’re on to something. After all, these people have been off meds for years, they must know something we don’t. This is wrong again and even more dangerous than the above experiment that will lead to a very quick crash after the mania wears off. It’s dangerous because they’ve mistaken a few years without a mood cycle for being cured. They’re not cured, they’re in “remission” for lack of a better word. This happens with people who are bipolar, they can go for extended periods of time with no mood disturbance. A classic case is Kay Jamison’s autobiography The Unquiet Mind, where she had mood disturbances in college, but made it through grad school without a problem. It’s not a disorder that is present 24/7 for some people. It comes, it goes, it can be triggered. And by not taking a med like lithium, which has very manageable side effects and is quite cheap, they’re setting themselves up to fail with no safety net to catch them.

To me, this is the most saddening portrait that I’ve come across. The short term withdrawer will have a psychiatrist set up and after the impending crash, will likely go on meds again. This is a classic see-saw of going on meds and coming off of them. But the long term withdrawer will lose psychiatric contact and if some major stressor brings the swings back, there is no medication or psychiatric safety net to catch them and help them. And nothing is worse than finding a psychiatrist while depressed or having to wait the weeks to see them and get the proper meds.

Most of what I’ve seen is due to a reaction to the zombiefication that psych meds can induce. Drugs like Seroquel and risperidone have this effect as well as drowsiness. But being mentally ill means you have to be an advocate for yourself. Setting up weekly or every other week appointments with a psychiatrist when going on a new drug is crucial to getting the dose or the drug right. And being forceful and not tolerating the side effects is key to not becoming zombied. And the energy spent on integrating a whole new life style, be it gluten free, reiki, or anything else, that energy could be put to use in finding a proper medication. You don’t have to be a zombie or accept being a zombie, there are a lot of pathways to try. And those pathways are less likely to set you up to fail than dismissing them all.

Hidden Complications of Medications

Withdrawal has not been that kind to me lately. I’ve been going through approximately a migraine a day. On top of that is leg pain. It’s an old leg pain that I’ve had since high school and it largely went away as I got older. It would flare up now and again, but it was manageable. And by pain, I mean crippling pain that shoots through all my joints from the knee and below. My toes even hurt.

Before, it wasn’t a problem. I would take prescription levels of ibuprofen and that would take the edge off of it. Granted, it would tank my stomach and I would feel sick and have a lot of heartburn. But at least I wouldn’t be in crippling pain. And after my back injury, I was introduced to another NSAID called Ketoprofen. That stuff is wonderful. It took care of severe back pain, sciatica, and my leg pain. Also, for migraines, I could take excedrin. It wasn’t perfect, but it took the edge off and I could function again. I can no longer take these drugs. Any of them.

The reason for these is lithium. I cannot take ibuprofen, aspirin, or naproxen (aleve) because they will increase the serum levels of lithium and push me toward toxicity. In fact, besides tylenol, there are no over the counter pain killers that I can take that does not mess with lithium. But it gets worse. All NSAID class drugs do this. So no COX-2 drugs either. What I’m left with are anticonvulsants and antidepressants (and opiates).

However, anticonvulsants are not a reality because of possible complications with lamotrigine (lamictal). All of them score a moderate interaction on the Drugs.com interaction checker. Worse yet, the best ones not only take a while to work, but can decrease the amount of lamictal in my system. That could have devastating mood impacts. So anticonvulsants are pretty much out because they are slow and interact with another one of my drugs.

Finally, there are tricyclic antidepressants and SNRIs (like welbutrin). There are two problems with this. SNRIs make me suicidal and a little homicidal. Even at low doses they destabilize me. So no matter how effective they are, I simply cannot take them. As for tricyclics, like amitriptyline, they too are antidepressants with a risk of mania. This effect is exacerbated by taking olanzepine.

And there’s one other. A low level opiate, tramadol, also interacts with both olanzepine and lithium causing increased risk of seizure. This is because it acts on both the D2 and D3 receptors in the brain. So even low level opiates are off the table because of the medication cocktail that I’m on. Which is disappointing because tramadol is the least likely to get me hooked on another narcotic.

This just reveals the hidden complications of medication. Drugs like lithium and olanzepine interact with nearly everything. And once you throw in lamictal, everything goes out the window. And adding in bipolar disorder helps clear away the remaining drugs. The only things left for intermittent moderate to severe pain are powerful narcotics like hydrocodone and oxycodone. To some, that might sound nice. But after withdrawing from one drug, I’d rather not do it with another. They are also sedating, which is something I desperately want to get away from after taking clonazepam for so long.

However, I don’t advocate dismissing these drugs because of the complete lack of access to no nonsense pain killers. It would seem strange to jeopardize one’s mental health because you can’t take ibuprofen anymore. And I’m definitely not going to stop taking these drugs simply because I have days of pain. Even if right now I’m very badly medicating myself with a little alcohol and tylenol. What it means, in my opinion, is that if you have severe pain that isn’t handled by tylenol, get to a general practitioner and find out a medication right away that you can take. I was stupid and didn’t set up a primary care physician and am now in the lurch for not doing so. Instead, I’ll have to rely on my psychiatrist for pain meds until I can get into my July appointment, and that’s a position that I don’t want to put her in.

It’s also a very good reminder to double check every interaction with every drug because even common and safe drugs like ibuprofen can have relatively devastating effects. Drugs.com has a good one that lists the severity of the interactions and what it does. Also, talk with your pharmacist about these things. I’ve found several good ones and they know off the cuff what can’t be done or what little tricks can be taken to work around complications. It’s their job, and my psychologist informed me that there is a strong movement amongst pharmacists to demonstrate that they are more knowledgable than doctors about medication. Ask questions, they are more than happy to inform you about the latest research that they have read. Plus, and this is just me speculating, I think that they like the sexier drug cocktails that pose complex interactions. It’s a stretch to figure it all out. It’s like my experience with the university health clinic, where my doctor was more than willing to act as primary care after finding out that I had a herniated disk. I think it’s a break from the norm, which is always more interesting to intelligent educated individuals.

New To Bipolar? – My Ever Changing Views on Meds

The longer that I’m on medications and the more that I’ve had to experiment with them, the less straightforward it appears. It should be a normal course for anyone, that experience heightens the nuance of someone’s view on a particular subject. It’s good, it’s healthy, and it’s natural.

Earlier this morning I was thinking about whether I would recommend trying medication to new people or even to my old self given all that I’ve been through. I’ve had a rough year and a half with about 6 months of it in complete sedation and obliteration. These drugs are powerful and going slightly overboard with them can be devastating. It’s enough to make one think that the cure is worse than the disease at times. But that’s a snap judgment about the short term.

One the one hand, without knowing that zyprexa is such an effective medication, I would have stayed in a mental ward for a long time during my severe winter depression. And while it initially stripped me of emotions at a higher dose, it led to the discovery that a very small dose can control even my most severe psychotic states. It’s a long term realization from a short term loss.

Same thing goes for klonopin. I’ve been on it twice, and I should have learned from the first time on it to get off of it fast. But I didn’t. And now I know. It clearly works for controlling depression, anxiety, and mania and is cheap and effective. Granted, it took a while to find out all that it does, but it’s part of my armament against dangerously extreme moods and anxiety.

Then there are all the other psych meds that I’ve been on. The horrific experience of going on abilify, the failures of seroquel and risperidone. They all cost me time, money, and energy. One would think that after a while I should just give up. Or if you’re starting out, that the energy that it takes to try all these meds is worse than the energy it takes to manage the moods on their own.

I reject those ideas. I’ve always been on the side of finding a minimum level of dosing to help stabilize me and then allow psychology to help with managing the rest of the ups and downs. And that takes a lot of energy even with the meds. But the energy that I invested in finding the meds that work for me will pay off. One can think of it in terms of net gains. While in the short term I might have spent a lot of energy finding the correct medication, that energy will be saved in managing the severity of my moods. It’s restoring me to a functional level. It might have taken a bad year to figure it out, but I’m talking about the rest of my life as well. And that life will likely be longer because of drugs like zyprexa helping me out during severe depressions that will ultimately crop up a few times in my future.

I’ve also written about mood cycling before (though I cannot remember the post’s name) where as time goes on, they become easier to trigger and grow in how extreme they are. I might have been functional at one point in my life with the mood swings, but as time went on, the highs went higher and the lows went deeper, landing me in a psychiatrist’s office with suicidal thoughts. And when I went off of medication in a drug holiday, I went from a psychiatrist’s office to a mental ward. It’s best to think of bipolar disorder as a progressive disease. It doesn’t stand still and stay the same. It gets worse. It’s similar to epilepsy in many ways. So locking it down and controlling it quickly is for the best. This bad year has ultimately succeeded in getting my moods in a safe confined range where I still go up and down, but never reach anything dangerous.

Furthermore, it might be strange to think of it this way, but trying drugs that failed is a learning experience beyond just learning that drug X didn’t work. These drugs push your mood and brain around in ways that you never experience in ordinary life except for extreme circumstances. As a result of being over medicated and the feelings attached to that, I have developed a hyper sensitivity to where my mood is at any given time. Seeing what it is like to not have manic or depressed thoughts, and be rather normal, has shown me what sort of dialogue I should expect with each one. And just based upon a quick categorization of desires, motivations, and a few minutes of internal dialogue, I can tell exactly where I am and how severe my mood is. All these failures have taught me more about my mind by showing me alternative states of mind.

It’s kind of like when I had migraines every few days. The triggers were plentiful and over time I learned to avoid them. They were mainly food triggers and smells. Getting the meds right was on par with finding all the triggers for my migraines. It’s a lot of trial and error and with error comes horrific pain or zombie like states. But it pays off in the end. And in terms of migraines, I developed a sort of six sense for triggers. From just smelling something, I can accurately predict whether it’s a trigger. Took 10 years to get that, but it’s saved me from a lot of migraines. What it took was a lot of sniffing and letting my brain correlate the smell with what I ate. Just like now I have an intuition about what is going on inside my mind at any given moment. I just naturally catalog what is important and I constantly check it.

I’m never going to say to anyone that finding the right medications is easy, fun, or quick. I was lucky and did it relatively quickly and I don’t know how people go on for longer. But it’s not only worth it in terms of getting the stabilization and the energy saved from that, it’s also worth it in terms of learning more about one’s mind and how it operates.

Loud Music and Mood Shifts

Last night I ran a show for a group of ambient noise music. It’s a full spectrum experience where there is no beat to what is done, but there are dozens of sounds that you can listen to. If you are interested in expanding your musical horizons, getting into some noise like Add N to (x) will get you to places that most music doesn’t venture. Personally, I love it because every performance is different and unique to the space. I’m not going to hear the same folk set over and over again to the point that without hearing them, I know all the EQ settings and mixing levels. As a sound engineer, it doesn’t bore me. Additionally, with a pair of high quality speakers, the entire room becomes flooded with sound and it becomes a full body experience. Trust me, go to an avant garde showing sometime and if the sound is done properly, you’ll never have an experience quite like it.

In addition to sound, sometimes there are visuals that are projected on a wall that are responsive to the sound itself. Last night we had that too. It was amazing. Sound just flooded around me and the rapid flashing of visuals intensified all the aspects of it. But it did a lot more than just being unique, it also prompted mood shifts in me and a bizarre delirium.

I had two drinks by that time, but spread out over about 4 hours. And the sound and visuals just meshed together to alter my brain state considerably. I felt delirious and confused and thought I was going to have another psychotic episode. My body became numb and my arms felt elongated as well. I couldn’t think very well, I just reacted. What cognitive abilities did bleed through made me stop watching the visuals and plug up my ears so I wasn’t nearly as engaged. But I was clearly manic after it was done. And, more interestingly, I felt the shift happen in a matter of 5 minutes or so.

This got me thinking about cognitive loads and how they can produce manic episodes. Things like crowds of people can excite manic moods. The levels that I was dealing with were seizure levels of noise, music, and multicolored flashing visuals. So it’s no surprise that it changed me. But it changed me quickly and that’s what makes me interested in it. If it was the entire night that did it to me, that would be one thing, but to do it in a matter of minutes shows that at a certain level of intensity music and environment can really push one over the edge fast. And now it’s something that I have to watch out for. I normally bring ear plugs to protect my hearing, but it’s a must to allow me to block out unwanted noise from changing me. Especially since it could have gone a lot worse than it did.

Good news is that zyprexa again does its job. I woke up this morning and voila, mania is controlled. That stuff is amazing. It’s a bit more involved since I ride the line on dosing. Any lower and I won’t be able to control things, higher and it starts to zombie me, but right at 2.5, I only have to look out for problems at night when it starts to get low in my body. But I take it, it bumps my levels up, and I’m pretty much me again. Wonderful stuff, better than anything abilify did for me (which takes too long to act). And being at the minimal dose also allows me to have experiences like I had above. Not that I want to be manic (ok, I kinda do), but I can find my triggers really quickly and experiment in a safe way. I know the dosing to control my behaviors and that’s that. I’m learning a lot about myself as a result and that’s really fun in its own way.

Apartment Shopping, Hay Fever, and Antipsychotics

It’s that time again in Madison, time to shop for apartments. And that’s about all I have been doing in the past two days is looking at different apartments. I saw 12 in one day and over all nearly 25. It’s a lot of walking and the weather hasn’t been the greatest for it either. All wet and now slightly cold. Cold, that is, by comparison to the 85 degree heat we had previously. Thankfully though, that is all settled and the time to fill out applications is at hand. We have two, one we want and a backup, so we should be good no matter what. Hurray.

The other difficulty that has arisen is very early hay fever. I’ve been sluggish and feeling slightly ill for a few days now and it never really occurred to me that it was allergies. It wasn’t until today, where I slept in late and did nothing all day that I suddenly started sneezing after leaving the house. Allergy season has arrived and it’s not that pleasant. But, this is different from past years. Before, I used to pretty much get sick with allergies. My nose would run all the time and I would be completely out of it. When they say “fever” it’s very much like one. However, this year all that it’s done is made me sneeze, given me a small headache, and made me lethargic. My allergies have seemingly disappeared for all intents and purposes. This also goes for my dog allergies and my cat allergies (and I used to be very allergic to cats). They just vanished into thin air.

There’s a very good reason for this. Antipsychotics. Most antipsychotics, like seroquel, rispridone, abilify, and zyprexa, all act in some way on the histamine receptors, primarily H1 receptors (although some act on more). This often causes them to make you sleepy, just like benadryl does, but it’s the same mechanism of action for every antihistamine out there. This includes claritin and zyrtec. Everything acts on that receptor as its mechanism. So, while zyprexa is clearing the hallucinations from my mind, it’s also doing a fairly good job on taking care of my allergies. Actually, it’s better than just about anything else I’ve taken, far better than claritin and it’s a good margin better than zyrtec. I still have allergies, but a little sneezing and lethargy is better than being completely out of the game.

With all that said, since I’m definitely going to get hits by people who have allergies, I wouldn’t recommend taking an antipsychotic for allergies. For starters, seroquel and risperidone will knock you out cold, as in, you can’t walk after taking them until you adapt to it. And abilify, while everyone has their own experiences, it’s a drug that has a lot of phases and none of them are very pleasant. It took me a solid 5 weeks to fully adapt to it. Then there’s zyprexa. Which is fast acting, short half life, and can remove your emotions very quickly. It has the power, even at low doses, to stop a full psychotic episode in its tracks within 2 hours. I also know that there is a growing market for antipsychotics on a lot of off label uses, but these are heavy duty drugs that do a lot more than just attack your allergies. They can really mess you up and I fight tooth and nail with my psychiatrist every time she wants to raise my dose of zyprexa. I’m content with it being at 2.5mg, but not happy. It’s a necessary evil in my life that I would easily give up and go back to having allergies. The only reason that I’m thrilled is because I have to be on this drug, so it’s a perk that I get to enjoy.

Let’s Talk About Sex

I’ve thought about writing this piece for a while. Having my mood swings, my interest in sex also fluctuates. In the low periods, I obviously don’t really care for it all that much. But during the summer highs, it means that I like sex, a lot. And I have sex, a lot. From what I’ve learned, I’m not a normal guy in that I don’t think about sex all the time, and even when I’m hypomanic I don’t. But I’m always in the mood. It comes with the territory of the highs. And now that I’m in a higher mood, I’m having a lot more sex. But it’s complicated by drugs.

It’s almost a fact that practically every drug that I’ve taken (with the exception of lamictal and lithium) has impacted my sex life in one way or another. And in reality, nearly every single one of the antipsychotics has some potential of sexual disfunction. I’m unclear about how disfunction is categorized, and I wouldn’t say that I had dysfunction, just lack luster sex. What’s worse is that reading about the side effects online gives me no insight as to what the drug does exactly. Sexual dysfunction could mean a lot of things, some I might tolerate, others I definitely would not. So in keeping with some standards of professionalism, I’ll try to keep this clean and use rather clinical terms, but be forewarned, this is going to get a bit TMI about how zyprexa and klonopin impact my sex life.

Zyprexa (olanzapine) at higher doses just strips away any sexual urge one can have, that also goes for emotional states. This isn’t surprising, but it is worrisome. Since I’m in a relationship, my girlfriend has needs and me simply not being interested is a particularly hard strain on the relationship. It’s not something that immediately comes to mind when one is thinking of side effects. After all, if you’re uninterested in sex, you don’t really care about what you’re missing, but other people do. And it’s a very selfish thing to say that I want to take care of myself over your interests without trying to find some balance. My girlfriend provides a great deal of stability as well in addition to filling emotional needs, not being able to reciprocate in a rather intimate way is unfair to her. And to be clear, when I say that it strips away sexual urges, I don’t just mean that I’m not in the mood, it means that I see her as an object that I eat dinner with. I’m thankfully off of the high doses of zyprexa and it doesn’t impact my sex drive any more, but it’s something of a conundrum where it puts pressure on relationships rather than just on yourself.

Zyprexa also has another worrisome side effect. In me at least (being male), it means that I orgasm nearly instantly. Sex lasts about 2 minutes. In terms of the history of this drug, it has been a monumental disappointment to go from no sex to lack luster sex. Especially since I was pretty good at it before all the pills arrived. Hypomanias and manias can produce incredible stamina, and that’s what my girlfriend first experienced. So zyprexa was a big let down.

Then there is klonopin (clonazepam). With my sex drive finally up and running again as my mind starts switching into more and more hypomanias, klonopin has been both good and bad. The good is that sex lasts forever now. My girlfriend loves that I can now go for an hour and that it hasn’t diminished my sex drive in the least. I actually want to have sex. It’s almost like alcohol, where I’m a little tired, but almost always in the mood. The bad news is of course that sex lasts for an hour for a reason. While zyprexa shortened the duration, klonopin has made orgasm nearly impossible. Sex is still enjoyable, but it’s just lacking in that respect. She likes it though, so I’m good with it.

I thought I’d share these things because they’re simply not reported in the side effects listing that one finds at RXList or Drugs.com. They also aren’t even mentioned by my psychiatrist when being prescribed them. And I think that these are relatively important things. Not nearly as important as remaining stable, but this is a side effect that can have damaging effects on relationships or enjoyment of life. Sex is not everything, but it’s a big one in terms of intimacy, and nearly every drug has the potential to have some impact on it. So if you like sex, ask about the side effects, because it impacts your partner as much as you.