Meandering Musings

Everything not fit to publish

Psych Meds Suck

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Disclaimer: I am not a medical professional. This is simply my opinion based on personal experience and the experience of others at Psych Central and various other places. Do not mistake this for advice or medical opinion. It might be useful as a rough guide but is probably closer to an opinionated rant that is way too long.

I am not anti-drug. I think that they provide tremendous help to those that really need them, I probably wouldn’t be here without them. I also think that they are misused by psychiatrists and unethically marketed by the drug companies. It is a mess made by the pharmaceutical companies and doctors blindly throwing darts and it is the patients who pay the price and it can be much worse than the affliction. I will also disclose that I am incredibly sensitive to psych meds which certainly informs my opinion.

People have been accustomed to taking a pill that solves a specific problem and they work well and typically with no noticeable side effects. You get an infection; there is a pill that clears it up. You have a headache, over the counter drugs take care of it. These things typically work well and predictably.

Psych meds are entirely different than many people’s experience with other types of prescription and over the counter meds. The two biggest issues are that people react differently to the same drug at the same dosage and they take a long time to start working, yet side effects can manifest in the first day or two. There are websites that allow patients to solicit others experience on a drug and even review it as if it were a car or hair salon. This is a waste of time and dangerous. The sad fact is, and it pretty much invalidates most of this rant, there is no reliable way to tell if something will work until you try it. That something worked flawlessly for someone or someone else nearly died on it is irrelevant to how well a third person will do.

There are genetic tests that purport to assist in helping a patient figure out what they will metabolize properly and what won’t. I haven’t used it and reports from patients make it seem just like the psych meds themselves. Hit or miss but it may be a solution if you are having trouble finding meds that work without any significant side effects. At least it is an attempt to inject real science into psychiatry.

I have been on so many psych meds over the past 21 years I can’t remember them all. Outside of the anxiolytics, they either didn’t work well (or at all) or caused terrible side effects, or most commonly both.

I was not taking any psych meds from 2002-2010. I was pretty stable during this time. In late 2010, I crashed hard. It wasn’t really the depression, not directly at least. I had severe anxiety, which wasn’t much of a problem before. It was the first time something new appeared since 1995. I thought they were heart attacks. I even walked into the VA ER and told them I was dying because I keep having heart attacks. Heart checked out fine. Early the next year, anxiety started feeding into my depression and that was the big crash. I don’t remember a lot of this time as depression seems to be a memory thief.

I was on some anti-depressant that wasn’t working and it was suggested I augment with risperidone, an antipsychotic with a lot of scary side effects. Augmenting with antipsychotics seems to be more and more common and that is frightening. They are extremely dangerous meds, even newer ones. The so-called atypicals are just as bad as the older antipsychotics. The distinction between typical and atypical is mostly just marketing and tardive dyskinesia being more rare with the atypicals, other than that the side effect profiles are very similar. I wasn’t in any shape to really argue or think critically, another hazard of psychiatry, so I agreed, especially since it was a very low dosage. I lasted all of two days on it. I can’t adequately explain what it did; zombie mode is sort of accurate but doesn’t capture the suck. On day three, I felt if I took it one more time it would kill me. It took two weeks for the side effects to clear out.

I started over again with a drug called venlafaxine, an SNRI antidepressant. It didn’t really work so they kept increasing the dosage until I was at 150mg. It still didn’t work so they augmented it with mirtazapine, a different kind of psych med. Neither really worked, except mirtazapine is great as a sleep aid, maybe too good.

Around this time I started to get tinnitus, my shrink attributed it to venlafaxine, I tapered off it. It has been two and a half years since I have been off it and I still have the tinnitus. Since I was just on mirtazapine for depression and 15mg wasn’t working it got increased to 30mg. Still worked well for sleep but didn’t touch my depression. It did, however; cause me to gain about 20 pounds in a month. I wanted to drop back down to 15mg but he said 45mg might do better because the weight gain side effect is more prominent at 30. So I agreed. The good news is that I dropped the weight as quickly as I gained it. The bad news was that it caused restless legs which greatly interfered with the sleep properties and still did nothing for my depression. So he increased my anxiolytic to help deal with that. Yes, it can be a vicious cycle.

About 18 months ago, I started hearing voices and seeing things and getting paranoid. My doctor’s immediate reaction was to change my major depression diagnosis to major depressive disorder with psychotic features and put me on another antipsychotic, even though none of these things were more than mild distractions, I knew they weren’t real. I was hesitant because of the previous reaction to risperidone. One good thing about my shrink is that he does accept my input and lets me do research, a very rare trait in my experience. He suggested some scary ones that mess with cholesterol, blood sugar and some are known for very common and significant weight gain. All of which are non-starters for me due to having diabetes and heart issues run in my family, as well as weight issues. He finally suggested ziprasidone, which he said is weight-neutral and the other bad side effects are rarer. He put me on a low dosage of 20mg twice a day.

Things started out okay, the psychotic symptoms were greatly reduced and it started my weight loss where I dropped 50 pounds in 9 months without much effort. That was great! I still need to lose 10 more. The problem was that I was wiped out in the afternoon and got a bad case of the shakes and needed to sleep it off. He removed the morning dose which solved that problem. About six months into it, the paranoia and seeing things came back. Predictably, he increased me to 40mg once a day. This caused different issues than the 20mg 2x a day, which is just weird. It is hard to describe but was something like disassociation. Things got bad enough that I dropped back down to 20mg which was painful for about a week because psych med withdrawals are no joke. It turned out that ziprasidone caused high prolactin in me, leading to dangerously low testosterone levels.

I could go on for dozens of pages of all the problems I have had with psych meds but will spare you for today. Like I said earlier, none of this means that you will have problems with these or other drugs or that they won’t be helpful. We metabolize these things differently so different reactions are the rule, not the exception. Many take these drugs without incident. Please do not use this as a reason to stop taking it or not even trying. I do think it is a decent cautionary tale. Be careful, educate yourself and note any negative or positive effects in a diary. If I had been paying closer attention I might have been able to taper much earlier and avoid a lot of problems. Learn about meds, side effect profiles and how much better they performed in trials against placebo and if there are studies that test against multiple meds.

Doctors are seemingly uncaring about the pain of side effects and withdrawals. I have had shrinks question why I want to get off meds, even with evidence that ziprasidone was causing significant harm. They will question why I am taking so long getting off something or prescribe me just enough to taper off on a schedule they think and no more. Maybe they should take Venlafaxine for a year and taper off quickly in med school.

You might be saying “but that is dangerous”, that is exactly my point! Psych meds are dangerous and should be used only when needed and then very cautiously, yet they are handed out freely and without knowing exactly what is causing your problem. Even in cases where it is situational depression which might only last a month or three, you will likely get offered meds. It is pseudo-science and pure greed that is driving psychiatry. There should be better options. As much as I have been critical about shrinks, I would never accept psych meds from a primary doctor, just like I would never accept other non-psychiatric treatments from a shrink.

The problem is, unless you are ‘lucky’ enough to find an underlying cause like hypothyroidism or you have a significant negative experience in your past, they can only guess what is causing your distress. To be fair there is some research with fMRI’s. So there is some evidence that low serotonin and other neurotransmitters might be the cause of some depression. There are other ways of helping increase these things without the use of meds, like diet and exercise. Going for a short run will have a much more positive effect and more quickly than a pill ever will.

Mental illness is a very personal thing, not everyone with the same diagnosis experiences it in the same ways. For example, some people feel sad while depressed, but I can honestly say that depression has never made me feel sad. I can be having a severe case of depression and still be able to laugh, some cannot. Psych meds are a one size fits all solution to a very personalized problem. Granted, they are more precise than OTC supplements that might not even contain the ingredients the label claims it has.

The worst thing about psychiatry is the pharmaceutical companies. They commonly advertise dangerous psych meds with narrow usage on national TV. This is but one and is the definition of insane, note the list of side effects. Antipsychotics are not an ‘ask your doctor if they are right for you’ kind of drug. Many of these drugs experience high dropout rates during studies due to many factors including horrible side effects, yet they still get approved with suspect studies.

FDA is supposed to be the watchdog of the pharmaceutical industry but more often than not the head of the agency is a former executive of a drug company, or not remotely qualified or have received substantial amounts of money from them. FDA often pushes dangerous drugs with little testing but this is hardly a psych-med only problem.

What is terrible about all this is that psych meds are important and can be very necessary just to function. I know I might have angered some people who need these meds to get through the day. I am not saying to not take them. Stay on them until they are not needed. Yes, sometimes they are needed for a lifetime. I currently am off psych meds, except a very low dosage of clonazepam, but I would not be here without them.

Surviving Psychiatry

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This is not intended to discourage people to seek help. If you need help, please be seen. Psychiatrists are not perfect but are preferable to not going out of fear of psychiatry or stigma or whatever. If you are suicidal or feel you might hurt someone call a hotline, call 911, go to an ER and scream until you are seen if needed. If you have been feeling down or have wide mood swings or hearing voices, don't let anyone, including psychiatrists, get in your way of getting help.

There are few things more soul-crushing than being hurt by people with good intentions but are oblivious to the damage they cause. Of course, not all psychiatrists are bad but many of the good ones don’t seem to realize that they are causing hurt.

Psychiatry is a pseudo-science. The DSM is a monument to pseudo-science. It is a diagnostic manual that is made up, mostly out of thin air, in a group of committees. Things are added, removed and merged in each new edition. They are arbitrary definitions and mostly cover things that are not measurable or testable. Mental diagnoses magically become other diagnoses or disappear entirely. Many of these diagnoses have no proven cause and no proven treatment. Even a well-known diagnosis like major depression doesn’t really have proven causes so its treatment is not very focused.

The typical approach to treating mental illness is to first place you in one or more defined boxes from the DSM that most closely matches what you are telling them. That is another strike against psychiatry; there is little objectivity in the exams. They actually have an objective portion in each exam note but they are based on what you tell them and what the examiner observes. There is no test to confirm the diagnosis in most cases. If you are seen for a physical issue, the doctor might have an idea of what is wrong and will order tests to confirm it before proceeding. Those tests will determine the treatment protocol, and it is quite effective in most cases. With psychiatry, the best you will get is one or more multiple choice tests, which are self-reporting and “blunt little tools” to quote the eminent Dr. Hannibal Lecter. Next, they come up with a treatment plan using a unique method not see elsewhere in medicine.

I like to call it the ‘throwing crap on the wall and see what sticks and ignore the mess it makes’ method. Each shrink has his or her go-to meds that they try first and they work down an arbitrary list of meds from the set of meds that are either approved for your issue or has some evidence that it works for your issue and is prescribed ‘off label’, until something is found that has an acceptable benefit/drawback ratio for the patient. Heaven help you if a single med doesn’t work, now you have to go through it again with a new drug, while also taking the old one that didn’t work all that well. Polypharmacy is very common in psychiatry; if a drug isn’t working, find another to force the first one to behave itself. Patients with depression and anxiety might end up on 3-6 meds, sometimes more. More often than not side-effects are dealt with by more drugs which can cause more side-effects. It would be comical if the potential damage wasn’t so terrible. This can be a severely painful process, both mentally and physically.

Making matters worse, it is a rare psychiatrist that actually looks for underlying causes. Mental disorders can be caused by a variety of physical issues and those are almost always ignored. I have had a lot of shrinks in the past 21 years and only one actually ran blood work, and that was last year. He kept screwing up the lab order, ordering tests that have no real meaning medically. My primary doctor had to take over to get the correct labs run. Laughably, he thought my low testosterone was the cause of my issues, for 21 years. It was ridiculous and said as much. My primary doctor also thought his hypothesis was groundless.

Psychiatrists may have gone to medical school but it is a joke to call them medical doctors. They don’t even perform therapy because an MS or Ph.D. in Psychology is cheaper than an MD. They hand out meds, track side-effects and not much else.

So how does one who truly needs help minimize the damage a shrink can cause? Simply put, education. Focusing on anything when your mind is not well is sometimes the hardest thing in the world to do, but educating yourself is your best chance at success. Just know that all the education in the world can only aid you, it is not a silver bullet.

Learn about meds, side-effect profiles and how much better they performed in trials against placebo. A shocking amount of psych meds are marginally more effective than placebo. Learn about the various therapy techniques and figure out what you might respond to. Although, the effectiveness of both pills and therapy will be unknown until you give it a go.

If you are at risk for diabetes, avoid meds that raise blood sugar. If you have bad cholesterol issues, avoid meds that raise that and triglycerides. Granted, that is removing a lot of meds but it is the sort of things you need to do to minimize the pain. If you have no significant risk of other serious health problems don’t go into treatment with a wide-open attitude. They can still cause serious issues and getting off psych meds can be very painful. These are dangerous drugs that should be approached with caution.

Going to a psychiatrist is a lot like going to the dentist. You aren’t happy to go and most likely won’t be leaving with a smile on your face. Yes, I have dental anxiety. Why do you ask? That in itself sets up a negative impression, even before you get there, which can color the session. This is an issue for the patient and something that shrinks don’t seem to understand. If your shrink acts all superior and is issuing edicts that you are expected to follow without question; the way to combat that is to bring yourself to their level. To do that takes work and the luck of the draw. If they aren’t listening to you and simply dictating, it is simpler to move on. Although, given a specific circumstance being dictated to might be the most useful thing for a patient. Occasionally, we have no insight or perspective. Sometimes, a person might lose control of their reasoning faculties and need firm guidance. If you are lucid enough to do research, you are capable of being in control of your treatment. There is no one-size-fits-all answer in psychiatry but sticking with an unreasonable shrink can cause unbelievable amounts of damage.

That might be the worst thing about this. Your bad doctor is another’s lifesaver. Like meds, you won’t know how a specific provider is for you until you see them. As much as you need to challenge your doctor, your doctor needs to challenge you. I am not advocating for an adversarial process and your doctor will know more about psychiatry than you but you know more about your condition than anyone else in the world. No one seems to experience and deal with mental health problems in exactly the same way. Your shrink can talk about it in general terms that may or may not apply to you until you let them know specifically how your condition and meds affect your life. Open dialog between two people with the same goals is generally the better path.

The thing to remember is that you are in charge. Seeing a psychiatrist doesn’t remove your rights or ability to make decisions. Getting a person declared incompetent to manage their medical decisions is a legal process that has a high bar and is rarely used. At least in the US.

Therapy has another factor to consider: the therapist. You need someone you can respect, trust and have your best interests at heart. This usually means someone who is kind but will push you out of your comfort zone and be willing to confront you in a manner you will be receptive to. That is a tough balancing act and it may take a while to find the perfect fit.

When therapy goes wrong it can be devastating. I have physical and mental scars to attest to that. I had a therapist that was completely against me. I was messed up when I started seeing her and I couldn’t see how toxic she was. Every session was antagonistic and any push-back got labeled as ‘passive-aggressive’. Any attempt at a social life was met with derision. I met one of the best friends I have ever had during this time and she did so much to help me but my therapist said it was an unhealthy relationship, even though we were never more than friends. We got along well, helped each other through some issues and had fun. That was a bad thing apparently. During all this therapy, I not-at-all-surprisingly got worse and worse until I got committed for a week. That was the best week I had had in several years because it got me away from her. Not long after that, I ditched her and I magically improved and did it very quickly. That was 1999 and I haven’t seen a therapist for more than one session since. I probably should go back to one since I am almost completely med-free but nowhere near free of symptoms. I still hear her voice prattling in my head after all these years making it difficult to even think of having a social life.

So this was a lot of whining, but what can be done to improve things? As patients, there is little to do to change an established system that governs itself through non-scientific methods. All we can do is educate ourselves, be assertive and don’t be afraid to fire your psychiatrist or therapist. The field itself simply needs to be more scientific and there is progress on that front. Studies are being done with therapy and fMRI’s to see what therapy is doing or not doing, to the brain, for example. The important thing to remember is that psychiatry is just slightly out of the dark ages.

Beginnings

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Philosophy is perfectly right in saying that life must be understood backward. But then one forgets the other clause—that it must be lived forward. The more one thinks through this clause, the more one concludes that life in temporality never becomes properly understandable, simply because never at any time does one get perfect repose to take a stance—backward. - Søren Kierkegaard

Given the complexities of life, all the roads taken and not taken, it can be impossible to see cause. There are obvious well-marked events that define a life. Meeting your significant other and eventually having children is one such event. How easily could you have not met this person? The effects of that are large and obvious.

How does one begin to find the cause of a life-shattering problem that has no obvious beginning point? Is it even possible? With many things finding the ‘why’ or ‘how’ is the first step in solving the problem. An arson investigator needs to know how a fire was started if there is any hope of getting to the bottom of it. As a programmer, I cannot solve the problem at hand, at least not in a decent manner, if I don’t understand the problem and the background of it.

Everyone feels down from time to time. It is a defining trait of being human. Some get it much worse than others, and it seems random in the sense that it might not be based on anything going on or proportional to the issues. If one has no mental health problems, an acute episode of depression or anxiety can still happen. I had an enjoyable childhood and other than self-esteem and confidence issues, it was unremarkable. My biggest issue as a child was the feeling that I didn’t belong here; I had that as long as I can remember. As an adult, with one or two exceptions, mental health problems came and went (or never left) with no external stressor. I went through lots of stressful times like everyone and even experienced a few downright scary things and none of those events correlated with downturns in my mental health.

Before I started having significant and chronic mental health issues, I was no different. The first time I ever felt so down it seemed that something was ripped out of me was when I was 18 and in the Army. The Army is not a kind environment, at least not in a combat arms unit. I did well and got promoted quickly. I don’t even know why or how it happened. Maybe I was still adjusting to being away from home and being in a radically different environment. It almost ended badly, at the end of a rope on a random Saturday afternoon. Luckily, no one knew and I pushed through it and completed my enlistment without problems of any kind.

After getting out, my life simplified and got really lonely. This was my second bout of suicidal ideation but never got to the planning stages. It was also the first time that it stuck around for more than a few days. This lasted about a month. At least here I can point to a real cause.

I am grateful that I don’t suffer loneliness anymore. I love solitude and making friends seems out of reach. I simply have zero desire for it. I enjoy seeing family, so I am okay with a lack of social life. Over the years I have had many shrinks and therapists and the consensus is that it doesn’t matter and isn’t particularly unhealthy.

About two years after getting out of the Army I got married and had a beautiful daughter. Times were tight and I needed to get a career. I went to a community college and didn’t do as well as I would have liked and was having second thoughts about the program I was in. My mind drifted back to the military as a possibility. I really didn’t want to go back to the Army. An Army base would be a terrible place to raise a family. I knew the Air Force was much more family friendly but I had the impression that promotions came slowly. I became accustomed to quick promotions in the Army so I tossed that out. I eventually settled on the Coast Guard, even though I had to take a demotion. It was completely different than the Army. In some ways, it was nicer and easier and other ways it was much more challenging.

Things were really good. Right after an easy boot camp, I chose to go to a search and rescue station on the coast of Washington State. Family life was good; we had our second daughter about a year and a half into my enlistment. Promotions came as quickly as I was willing to work for them. When I left my first duty station I was an E-5. Smooth sailing until a fateful day. I had a really weird thing happen to me during my time at the search and rescue station. Out of the blue I blacked out, but did not fall, and in came extreme feelings of terror and I could see images of scenes from dreams. It affected me all day, I was in a fog. I had no idea what it was. It was pretty early so I chalked it up to being tired and foolishly didn’t follow up. I was fine the next day so I didn’t think of it again. It happened again, about 8 months later. Luckily, I was home and again it was early in the morning. I just brushed it off.

About 15 months later, I was assigned to a patrol boat in Key West. I had only been on the boat for 4 months and it was a busy and stressful time. We picked up thousands of Cubans from rickety rafts. This was 1994, it was a massive effort from so many CG and Naval ships to keep up with the migration. I think the total count was 30,000 people picked up from the entire task force. When that died down we got diverted to Haiti for Operation Uphold Democracy. Between all of that plus normal fishery and drug interdiction patrols, and I spent a week in training in Yorktown; it was a busy time. On January 3rd, 1995 we were scheduled for a month of dockside maintenance which is hard work but at least we weren’t getting pulled all over the place. The morning of the first day of maintenance I had another one of those weird things and it was significantly stronger than the previous ones. It knocked me on my butt, literally and figuratively, but again I didn’t seek help. I just faked my way through until the end of the day.

At the end of the day, I had another one just as strong during formation. I remember being really wobbly. I lived about a 45-second drive from the base so I made it home easily. I remember walking in and seeing my girls eating and rushing to the couch feeling terrified. I had another blackout, and another, they were coming quickly with very little time between them. Next thing I remember is waking in the ER and hearing two doctors discussing how to fix my shoulder. It turns out I had a grand mal seizure, separated my shoulder and tore my rotator cuff. The shoulder was from the fall off the couch. I tore my rotator cuff because it made me horribly paranoid and was swinging at the paramedics with both arms. This event was a turning point. Everything bad that has happened to me since can be traced here. There is not one injury from that incident that doesn’t still cause me trouble. In fact, it has led to lots of issues, physical and otherwise.

It turns out the weird things I was having before the grand mal was a complex partial seizure, sometimes called an aura. I spent eight days in the hospital, four of which in the ICU because the seizure stopped my heart and I had an irregular beat for a few days. I don’t remember a lot from this time period.

I have learned to be able to tell if a dream will cause a seizure and I avoid thinking about them. Most of them I forget when I wake, but once it causes an aura it is seared into my brain. The auras are a blessing in disguise. I haven’t had another grand mal since because they are warning signals and I have hours to get seen and get it stopped.

This ended my military career, although it took 18 months to get through the medical board. I took advantage of that and all the medical leave and light duty in the Group Key West medical bay to actually enjoy the Keys. I had surgeries and physical therapy to deal with but other than that things were pretty good. During this recovery time, I started getting terrible tension and migraine headaches and still get them to this day. I started feeling down, enough that the corpsman I worked with noticed and I had my first appointment with a shrink and my introduction to the joys of psych meds.

Little did I know that it would not be the seizure that would alter my life the most in negative ways. If anything the epilepsy was responsible for me getting a free education, at least my bachelor degree. Epilepsy was the only basis for the medical discharge, but the VA also service-connected the depression, bad shoulder, and headaches which gave me a high enough rating to qualify for vocational rehab which is a great program that offers free education.

Figuring Things Out

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You can’t change the direction of the wind, you can however, adjust your sails.

Don’t you hate it when things go awry and seemingly have nothing to do with your actions or non-actions? Me too. No memories of taking the wrong path, but here we are regardless.

Is there fault? Most I have talked to say no which seems wrong to me. Does it matter? I don’t know.

So, where to go from here? I don’t like here so I want to move. That is what this journal is about. I am a very private person and doing something like this is out of character and makes me extremely uncomfortable. I am publishing this for two reasons. First, the simple act of writing doesn’t seem to be enough to be helpful. Making it public makes me really think and organize my thoughts in ways I don’t when I write just for me. What I write may seem disorganized at times, but that is one of the things I am working on. Disorganized thoughts are part and parcel of psychiatric issues. Secondly, I have never improved myself while staying in my comfort zone.

This will not just be me simply whining about personal issues although there will be plenty of that. I will try to explore causes to find solutions. This is also an attempt to get me back working and writing code so there will be some of that as well. Just lots of random things, all with the express purpose of self-improvement and get my brain working a little better. If it is helpful to others, that is even better.