I’m Actually Doing Well on Seroquel, However, My Journey To Get Here Raises Questions About the Effectiveness of the Health Care System

Over the last 14 years or so, I’ve tried many antipsychotics to help with my mental health symptoms. None of them particularly worked well and they seemed to result in more side effects than I could tolerate.  So, when my psychiatric recommended that I try Seroquel for treatment resistant depression and anxiety, I was skeptical as to whether it would actually help me.

I had complaints about the weight gain and sedation caused by antipsychotics from the beginning. In response to this, psychiatrists that I had between 2005 and 2007 tried one antipsychotic after another for a couple of years, but the original one that I tried, Risperdal, seemed to be the best fit for me.

Still, it resulted in cognitive deficits, fatigue, and weight gain. And, because I had untreated ADHD my mental health continued to worsen, particularly my anxiety. But, my psychiatrists at the time stuck to a misdiagnosis if bipolar disorder and kept increasing my medications even though they weren’t doing what they should have for a person with a diagnosis of bipolar disorder. Of course though, I was made to be the problem rather than the diagnosis or medications that I was on.

My current psychiatric nurse has told me that when a patient doesn’t respond to medications like he or she should with a given diagnoses, that likely the diagnosis is wrong. However, many psychiatrists will stick to diagnoses like bipolar disorder even though a patient is not behaving like they even have it in terms of response to medications and just in general.  Still, rather than questions his or her diagnoses, many physicians cling to the idea that their diagnoses is correct and that the patient simply has a severe case of whatever the diagnosis is. At least that’s what my psychiatrists who upped all of my medications did.

I remember that when I was having issues with work in 2013 (right before I stopped working) that my psychiatrist wrote a note to my workplace in which he talked about how incredibly severe my bipolar illness and PTSD were. When I saw it I was actually surprised because I was going through a period where my PTSD and bipolar disorder didn’t seem severe to me. What did seem severe at the time was my anxiety and physical health issues.

That September I’d been hospitalized for hypernutremia (low sodium) that was due to one of the many psychiatric medications that this psychiatrist had put me on.  This did trigger my PTSD, but the result was not PTSD symptoms per say. It was definitely more of a generalized anxiety that resulted from the fear surrounded what had just happened to me.  For me, PTSD can lead to this kind of anxiety.

I was so anxious that I couldn’t sleep. My psychiatrist put me on Klonopin, a benzodiazepine, for  a week hoping to regulate my response to the hospitalization.  This did work temporarily, however, because of my worsening anxiety and chronic fatigue I ended up quitting my job and decided not to work anymore. I just couldn’t do it with all of my health issues combined.

However, rather than putting me on an anti-anxiety medication other than a benzodiazepine, my psychiatrist just increased my bipolar medications, including Risperdal.  Looking back, I can’t understand why, because I was clearly highly anxious. Somehow, though he must have tied this into “bipolar disorder” even though it most obviously was not.

This resulted tolerance of Risperdal and other antipsychotics, and also began to experience more severe side effects of the drug. At the higher doses it began to actually raise my anxiety and bring out PTSD symptoms. It definitely was not working for me.

But again, instead of revisiting the diagnosis, when I could no longer tolerate Risperdal he put me on another antipsychotic called Latuda. Within a month or so of taking Latuda, it was already making me extremely anxious and seemed to worsen my hyperactivity quite a bit. I also developed a tic right underneath the eye. Tics and involuntary muscle movements are a result of antipsychotics. But instead of admitting that Latuda was causing this, my doctor said that it must be due to anxiety.

My PTSD, anxiety, and ADHD grew worse and a year after taking Latuda they pretty much all blew up.  I also began to deal with trauma, which brought up a ton of emotions that I was not prepared for. And, because antipsychotics had been blunting my emotions for years, this was extremely traumatizing to me. Over time I also grew depressed and had very intrusive thoughts as my psychiatrist raised Latuda and my other “bipolar” medications. My psychiatrist, of course, didn’t even consider that this could be drug related and simply upped Latuda until it was at the highest dose possible, as well as upped some of my other bipolar medications to their highest doses as well. This resulted in even more intrusive thoughts and a worsening of PTSD and ADHD. However, even though I was working through memories and clearly having PTSD and anxiety, this doctor still did not address these symptoms and clung onto the bipolar diagnosis.

When I started to recognize the extent of my memory loss and that I had parts (alters), this psychiatrist diagnosed me with DDNOS (Dissociative Disorder Not Otherwise Specified) rather than DID. He told me that he had never seen me with multiple identities so it can’t be DID. I know now, though that with some people with DID, including myself, that only skilled counselors notice when I change parts or alters in front of people. Obviously, this psychiatrist didn’t have this skill.

And, to my dismay, he still told me that I obviously have bipolar disorder even though it is common to misdiagnose bipolar with dissociative disorders. It’s like this psychiatrist had an ego issue where he was just so sure about his diagnosis that he wouldn’t even revisit whether or not it was true in light of new information concerning my mental health.  I was extremely disappointed by the fact that he would not even consider that he and other psychiatrists had misdiagnosed me.

Eventually, though, he closed his practice. I don’t exactly know why. But, this meant that I found another psychiatrist, and this one diagnosed me with DID and told me that I am not bipolar. Since then, every psychiatrist I’ve seen has told me that I primarily present with PTSD (DID is a form of that) and that if I have bipolar disorder or a mood disorder, it is secondary to PTSD and anxiety.

Still, though, these psychiatrist clung onto the idea that I needed to be on high doses of  Latuda and other medications. The problem was, though, that all of it’s side effects were making me extremely angry, frustrated and moody.  One psychiatrist did reduce Latuda, which helped, but I was still on a high dose. And even though it helped, he of course thought that the symptoms came from me rather than a medication.

I finally found a psychiatrist who recognized that Latuda was not working for me, and that I was on too many medications. He weaned me off these medications one by one, but after I had a hospitalization due to severe depression and medication withdrawals I was mis-diagnosed again with bipolar disorder and put on Olanzapine, which caused me to gain about 7 pounds in 4 weeks.  Then, my psychiatrist put me on Vryalar.

At this point, I’d already been diagnosed with ADHD and autism, yet the psychiatrist I had did not put me on anything for this nor did the hospital. And, they did very little to address my anxiety or depression.  I found my new provider, a psychiatric nurse, in January of this year (2019). She took me off of Vrylar and put me on Ritalin.  This helped me right away.

But, my depression worsened without the mood stabilizing effects of antipsychotics. We tried an antidepressant without luck. After this, my psychiatrist deemed my depression and anxiety as treatment-resistant.   Antipsychotics are one of the recommended treatments for these conditions.

When my current psychiatric nurse recommended antipsychotics again, though, I did not want to try any more of them due to all of the problems that I have had on them before. But, she told me that they should work differently this time because I’m on ADHD medications and thus my ADHD symptoms are under control.

So, I was put on a middle of the road dose of Seroquel. I’ve tried it before and didn’t like it due to the sedating effects, but I seem to have adjusted to this pretty well (which is surprising to me). Being on Ritalin  must help with this.

I’m actually kind of upset that I didn’t try Seroquel earlier because a few of my family members have been on it for either mood disorders or anxiety/insomnia and it has worked extremely well for them. This verifies to me that it actually the reason why Seroquel works for me is not just because my ADHD is under control.  It seems as though it really is the only antipsychotic that I’ve had luck on.  I don’t know why none of the other drugs in it’s class didn’t work. I’m very happy, though, that I found something that does.

My depression is lifting today as is my anxiety, and I am not gaining weight on Seroquel.  Because Ritalin reduces my appetite I am not experiencing the uncomfortable feelings of hunger or food cravings that I have experienced in the past while on antipsychotics or antidepressants. It’s hard for me to believe that Ritalin could really overpower some of these side effects of such strong medications, but it does.  It’s kind of crazy how much stimulants can affect a person.

I’m happy that my cocktail of medications is working for me. In addition to Ritalin and Seroquel, I am also on Clonidine, which helps with ADHD as well as Sensory Over Responsivity. It’s been really important for me to reduce my reaction to sensory information. Because of this, I’m not having sensory meltdowns all of the time, which has been life changing for me.

Still, as I look back over my experiences with psychiatric medications and psychiatrists, I feel extremely angry for a few reasons.  The first is that it is extremely harmful to patients when psychiatrists cling to the diagnosis that they have made concerning a patient despite information that proves otherwise. I feel like this is an ego thing for many psychiatrists, as if they will not admit that they are wrong even in the face of extreme amounts of information that proves them wrong.  Secondly, it makes me extremely angry that psychiatrists also will not consider that it could be the medications that they are prescribing that is causing or worsening mental health symptoms in their patients. Again, I wonder if this is another “I don’t want to admit that I’m wrong” sort of thing. This is because most antidepressants and antipsychotics specifically have warnings that they can lead to increased depression and even suicidal thoughts, yet at least in my case a number of providers simply ignored these warnings and assumed that my symptoms were the problem even though what was occurring to me was known side effects of the medications.

So, again, I don’t know if this whole issue with psychiatrists is an ego problem, or if there is just an attitude in this field that the patient is the issue rather than the medication. It could also be a case of Confirmation Bias, which happens to all of us.  I also know that providers and those in the medical field tend to hang on to the idea that medications are the answer, and because of this might implicitly overlook or ignore the fact that they can cause damage.  Also, in terms of the bipolar diagnosis, I’ve been told by numerous providers that this is commonly over-diagnosed. Still, it would be nice if psychiatrists and providers would be more open in questioning their own diagnoses of patients and the medications that they give them.

Thanks for reading! Feel free to comment below.

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