Author: gentlydented

Finding good health care as a schizophrenic

Recently I had to go to a specialist doctor for a physical issue I’m dealing with. Filling out the medical history part of the paperwork caused me to stress out a little. Do I lie and say I have no mental issues or do I tell the honest truth about what medications I take? I felt it best the doctor have the list of drugs I take and why. When it came time to see the doctor, he left the door open. This isn’t the first time this has happened. In fact this happens a lot.

My former long time general practitioner knew I was bipolar and he treated me as a normal human being. Upon telling him about the evolution of my diagnosis, he became visibly uncomfortable. The next time I saw him, he left the door open and invited one of his nurses to be in the room with us. He had been my doctor for well over a decade and suddenly I became a threat. When I described to him my symptoms of pleurisy he decided to tell me my problem was all in my head. I knew then it was time to find a new doctor.

Which was a burden all in itself. Every phone call I made to set up an appointment for a physical, I disclosed right away I live with schizoaffective disorder and that I take medication for it. Two offices straight up told me that’s my diagnosis is a problem. Third times a charm as it was the third doctor’s office that said the doctor would treat me. My new general practitioner is a God send and I’m thankful for all the doctors who see me as a patient and not as someone to avoid.

Now, I’m not a perfect person and sometimes my medical issues stem from my psych meds. It can take a lot of testing that comes back negative for me to ask my psychiatrist if my issue is a side effect of my medication. There was the time I started having involuntary eye moment. I ended up having an MRI ordered from a neurologist who left the door open. It turned out to be a side effect of Abilify and to counteract the involuntary eye movements I was prescribed Cogentin. The involuntary eye movements stopped and I continued on with my life feeling guilty for not calling my psychiatrist in the first place. However, there are plenty of times when I have had something wrong with me physically and really do need the guidance of a specialist.

For every doctor who has said I would be the death of them, there’s one who understands even bipolar schizophrenics need physical medical help. It’s just a crap shoot every time I see a new doctor. Will they or won’t they treat me if I confess my mental illness on the form that asks for my medical history? Will they or won’t they close the door?

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Prozac took my creativity

About six weeks ago I had a rare-for-me depressed episode. I started to think the world would be better off without me. I’ve never felt that way before and it freaked me out. I thought the episode would pass and I could go back to my manic, mixed, and schizophrenic episodes. The feeling didn’t go away, so I called my doctor. Both him and I agreed I needed to go on an antidepressant. He wanted me to start taking a particular antidepressant but one of its side effects is weight gain. I absolutely can’t gain weight. I asked him if there was a medication that doesn’t have that side effect and he mentioned Prozac. I’ve never taken Prozac in all my years of trying to find the right medication regiment. Since Prozac has been on the market for over 20 years, I figured why not?

I haven’t had an episode since starting Prozac which is great. I feel like this is what most people feel like. To have calm in my mind is something to celebrate. It’s just that even though my brain simply feels ordinary, the part that is creative went into hibernation. I don’t feel like myself. Instead of being a little intense and someone prone to episodes every week or so, I’ve been taken over by another Meaghan. I feel muted and I don’t like it.

I’m left with a tough choice to make. Do I go off of Prozac and face the possibility of having another depressed episode or stay on it and just live with the grey in my mind that comes with Prozac? I’m not sure if I can handle life without the colors of my thoughts. It also has brings out a truth I never thought would be true. I kind of like being full of chaos in my mind. My mental disorder has been with me my entire life. I’m used to living that way. I’m used to my brain betraying me on a regular basis. I’m used to the dissociations that cause me to lose time. I’m used to being a bipolar schizophrenic. I miss the creativeness that comes with my illness. What my next move should be is unclear. Don’t worry, whatever I decide I’ll be okay. I always am.

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My experience with the drug Vraylar. (It’s not a good story)

Last night I watched the latest episode of Elementary (aired July 30, 2018). As I was fast forwarding through the commercials, an ad caught my eye and I backed up to see it. The ad was for the drug Vraylar. The commercial listed three different ways the medication can kill you, along with the all the horrible side effects that can happen, including two of the extreme side effects I experienced. I was shocked that two years after I stopped taking the drug, it was not only still on the market, but being advertised on TV. Let me tell you why.

Before you read the next paragraph I will state that this is my experience with the drug. It must work for some individuals and that makes me happy. It’s good to have a medication that helps one with symptoms of schizophrenia and bipolar 1.

After the birth of my second son and shortly after my stroke, I developed postpartum psychosis (again). I asked my doctor if there was any new medication on the market to help me out and he mentioned Vraylar. The medication was for schizophrenics and bipolar people whose common types of episodes were mania or mixed. This sounded like me in a nutshell and the drug seemed to be too good to be true. It was.

The case study for the medication was only three week long. When I read that in the pamphlet that comes with the medication (I encourage everyone to read the literature that is included with any new prescription), it set off a red flag but I was willing to give it a try anyway. I felt great for the first four weeks I took Vraylar. Then the confusion set in. I blamed the stroke I had a few months before as to why I was confused. Then it felt like my thoughts had become fluid, like liquid. My spending became out of control as I stopped tracking my money. I bought everyone’s Christmas presents and it was only August. This isn’t normal for me. I do my Christmas shopping in October. The liquid thoughts and confusion became so intense that I stopped driving. As I was also experiencing postpartum psychosis, I blamed that for the spending. I was too confused to really understand that this wasn’t how I felt the first time I had postpartum psychosis. That brand of mental state was known to me and that wasn’t what was happening. I just was having a hard time believing I was having such a bad reaction to a drug.

Then early September brought on the stroke like symptoms. I was feeding my son in his high chair and suddenly I felt like I was going to fall off my chair and I did. I couldn’t move a muscle. My husband freaked out and called 911. After my neurologist ordered a contrast CT scan and the test came back negative, he strongly felt it was the Vraylar that caused the loss of muscle movement. I went home after a just-in-case night in the hospital and proceeded to lose complete control of my muscles several times a day for three weeks.  The side effect lingered long after I stopped taking the medication. I kept falling randomly for another month. Now you may be asking how I took care of my children during this time and I shall mention I have fantastic in-laws who watched the boys while the side effect was running it’s course through my system. I’m very fortunate in having awesome in-laws. Let me continue with the Vraylar story…

I’ve had bad reactions to medications before and have gone through several drugs trying to find the right combination. However, Vraylar takes the top spot in being the worst I have ever taken as far as side effects are concerned. According to my psychiatrist, I have taken all the anti-pshycotics on the market. I currently take three anti-psychotics and one mood stabilizer to lessen the severity of my disorder. Like I mentioned, this drug may work for other people, and that’s great, but the lesson for me is to not take a medication that was only studied for three weeks. Any drug can work for a few weeks. It’s been two years since that bad experience and I vowed to be more careful in taking a brand new medication that come with so little evidence of being effective.

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Here I am, coming out of an episode.

The past few days have been rough. The episode that I knew was coming was worse that I imagined it would be. I actually had to ask for help for my boys (which is rare). What was so intense? Well, it’s a type episode I rarely have. The last one was six years ago. I disassociated.

I have been so stressed recently with matters out of my control that my brain decided it wanted to check out for a bit. I walked about feeling like an apparition. I felt like a ghost and started to believe I could see through myself. I didn’t want to die, it just felt like I already had. I was watching everyone move on without me, even when someone was trying to interact with me. I stopped driving and doing any sort of activity that would result in me having to pay attention.

This started on a Wednesday night and I called my doctor Thursday morning. He told me to take Ativan in the morning and the evening and to call him on Monday if I’m still experiencing this episode. It’s Sunday now and for the in four days my brain has reconnected with my body. I feel whole again. It feels good to be me again. Who knows how long that will last until I head into another episode. That’s a worry for another day.

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Oh look, I’m about to have an episode.

I seem to always be going into an episode, having an episode, or coming out of an episode. With medication, the episodes can be less severe and the time between coming out and going into an episode are usually longer. I can now have weeks of calm, which is something I never imagined growing up would happen.

About a month ago, I had a straight up schizophrenic episode where it felt as though I was covered in flesh eating bugs. There was peace in my brain after it ended. However, my brain is starting to feel agitated. It feels like I’m barreling down tracks towards a cliff on a runaway train. The only thing I can do is brace for the fall. I can tell I’m about to have an episode, I just can’t tell what type I’ll have. The beginning always feels the same and that is how I’m feeling today. I’ve been feeling this way for days and it’s a guessing game as to what I need to prepare for.

When my diagnosis was simply bipolar, there were only three sorts of episodes I had: depressed, manic, or mixed. Now that schizophrenia is part of the equation, there are a few more ways for my brain to go. On top of the three types of bipolar options, I can now experience hallucinations, grand delusions, or both. It’s interesting to me that going into any of the episodes feel the same because each type is vastly different. I’m used to them all and I know that each one will pass and I’ll hopefully get a bit of a break to catch my breath before the next begins.

If a cure happens in my lifetime, how long would it take me to adjust to having peace in my head at all times? I can’t dwell on that hypathetical question for too long. I have more important things to spend my brain power on. My brain is warning me that it’s time to bunker down and concentrate on not going completely over the edge. Knowing that an episode is about to happen comes with the knowledge it will pass. With every beginning there is an ending, and then a beginning, and then an ending. The time in-between will last however long my brain feels like letting the episode last. Whatever type of episode it will be, I’ve been through it before and it will go through it again. As vague as my brain is, I’m glad to have the warning. Now it’s time to brace for whatever’s in store for me next.

 

 

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Psych meds, weight gain, a stroke, and weight loss.

Weight gain is an unfortunate side effect of psych meds. It’s one that I know all too well. I went from 120 lbs to 220 lbs in eight years. I tried to tell myself that I was happy being overweight and being overweight and mentally healthy is better than being thin and in a mental hospital. While that is true, being overweight in this society comes with many disadvantages. It was tremendously hard to find cute clothing in my size. People would stare at me in general, as though I was a repulsive object and not a human being. (Which, didn’t help the paranoid schizophrenic aspect of my disorder) I had numerous strangers come up to me and offer me weight loss advice because if I didn’t lose weight I was going to get cancer, diabetes, or both and die young.

I tried not to care for a long time but in 2016 I had a stroke. The stroke had nothing to do with my weight. I had bilateral carotid dissection. Both my carotid arteries had torn and when I walked into the ER, the ER doctor estimated I had less than 36 hours to live. I almost became stories to my sons. The interesting part was my arteries were clear of plaque buildup. No one knows why what happened to me happened. It was crazy nonsense. However, my neurosurgeon told me I needed to lose between 70 to 100 lbs or else my stents wouldn’t be able to sustain my weight. This time, I took the weight loss talk seriously. I was still holding on to my baby weight from my second child and a 100 lbs loss would put me at 140 lbs. After 4 months of trying to lose weight and failing, my general practitioner recommended bariatric (weight loss) surgery.

I saw a baratric surgeon and he almost refused to perform weight loss surgery on me because of my mental illness. He outright said “no” to the gastric bypass because my body would stop metabolizing my psych meds. He finally agreed to the gastric sleeve (stomach stapling) surgery. I would be able to take my medication but I wouldn’t lose as much as I could with the gastric bypass. That was fine with me. Any weight loss would be better than no weight loss.

I asked him how many patients gain all their weight back and he said 20%. I thought 20% was a lot of people and I wasn’t sure if I’d be able to stay on track to keep the weight off. Then I switched it around and told myself 80% of people are successful and, heck, that was a B average and I was a B average student throughout high school and college. I had faith I could take the weight off and keep it that way.

It’s been over a year and a half since I had the surgery and it’s been hard, but I managed to lose 70 lbs and keep it that way. My general practitioner wanted me to weigh anywhere from 140-165 lbs. I reached 165 lbs and my body was like, okay, but that’s it. I have been 165 lbs for over a year now and no one stares at me and no one has approached me with doomsday advice. I feel fantastic, and most important, I will be around to watch my sons grow up.

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When I think other people can hear my thoughts.

After the birth of my first son, I developed postpartum psychosis. Everyone on my mental health team assumed postpartum depression would come knocking on my door. About three weeks after the birth of my son, I found myself hiding in the closet holding my son tight because that’s where the government couldn’t find us. I knew right then that my mental state was way beyond depression. It was psychotic.

As I began the treatment for the disorder, an interesting symptom came about. I started to believe with all the fibers in my being that people could hear my thoughts. There was no place safe for me. I had a hard time getting out of the house because of the paranoia that evil would somehow ruin my day or my life. I believed drivers behind me were serial killers trying to kidnap my son and me so they may kill us. When I could manage to talk myself back into sanity, another paranoia would strike. People knew what I was thinking. I could think about how much I needed to pee and a couple next to me would laugh. Yes, the two events have nothing to do with anything but there I was knowing that they were laughing at the mother with an infant child, who needed the toilet. It became worse because then thoughts that I had never thought before would enter my mind. I would think about a murder I didn’t commit and then I would have a detailed description of where the body was buried. I knew I was going to be arrested and hopefully let go when the place I “buried” the body turned up nothing.

The antipsychotic Latuda went a long way in helping this type of paranoia. It took a couple of months but I went back to a 90% confidence rate that my private thoughts were just that- private.

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Paranoid is my middle name.

Oh look, Meaghan is paranoid again. Again, I say? How about always. I’m paranoid the driver in the car behind me, who is tailgating my car, hates me and wants to run me off the road. I’m paranoid that the driver of the car behind me, who has followed me for a few blocks, is a serial killer that wants to kill me. Then there’s the paranoia that the building I’m about to enter will blow up with me inside. Just when I think I’m safe from my paranoid thoughts, there’s the thinking that everyone in my life hates me.

I try to keep these thoughts to myself, because I know, deep down, they aren’t true. Knowing something is true and believing it’s true are two separate thought processes all together. Sure, I can tell myself that no harm will come to me while I’m in the building but the paranoia makes it hard to go through the doors. I have to fight with myself to even enter the building. Often I find myself altering the path I’m taking on the road just to prove to myself that the driver behind me isn’t going to cause me harm. Then there’s the belief that my friends and family hate me.

That one is the hardest. Especially when a loved one doesn’t return my text or phone call right away. On the other hand, I don’t return texts or phone calls because why should I when the person reaching out doesn’t actually love me? Medication has helped out with these beliefs but it isn’t perfect. The thoughts still leak through. All I can do is live with a split mind. The knowing and the believing. It used to tear my brain apart living this way, but I’ve gotten used to it. That sounds sad and in a way it is. I want to live paranoia free but I have learned to live with this aspect of my disorder and for now, that needs to be enough.

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I try and I try and I try some more…

Starting down the medication path for mental illness is an endeavor. Over the last fifteen years I have tried twelve different medications. Everything from antidepressants to antipsychotics. I’ve been on the gold standard for mood stabilizers, Lamictal, for a decade now. It doesn’t eradicate my bipolar episodes but it helps lessen the severity of them.

When I first tried Saphris (a new to the market antipsychotic) back in 2014, my insurance company was refusing to help cover the cost. My doctor had to fill out a form stating that I’ve tried all the other antipsychotics available at that time. It was disheartening to know how many medications I have tried to help me in my daily mental battle.

Why so many different medications? The three main issues are side effects that aren’t fun, the drug made my mental state worse, and those that had no effect at all. It’s scary starting a new drug and not knowing what laid in store. However, I kept at finding the best combination of medication for me because I have a need to lead as normal as a life as possible. My current regiment of three antipsychotics and a mood stabilizer doesn’t prevent the episodes from ebbing and flowing throughout my life but I now have weeks instead of minutes of calm in my brain. Since the field of medications for mental illness keeps growing and better drugs are being formulated, I have hope that one day I’ll get to know peace in my mind for months rather than weeks.

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There are flesh eating bugs in the air!

Once upon a time, about four weeks ago, I had a schizophrenic episode. There was a bit of a dauntingly massive stressful issue, that I handled just fine. As the drama was winding down, I began to feel flesh eating bugs crawling on my skin. Now, throughout the course of my life, I have felt bugs fill the air and water. The beginning of this schizophrenic episode was nothing new. What was new, was the intensity and duration of the sensation my skin was being eaten alive. I took to wearing long sleeve sweaters and hiding under blankets. I started taking Ativan, which helps calm me down in times of high mania and/or schizophrenic episodes. Then I started taking more Ativan on a continuos basis when I started to physically see the bugs eat away at my flesh. To say it’s disturbing to witness my skin disappear is to put it mildly. What makes it worse is I know it’s all in my mind.

My doctor felt the episode would pass, as all of my episodes had done before. There was really nothing to do but wait. I’m already on three anti-psychotics and I’m on a high dosage of all three. Bipolar episodes are a different beast than schizophrenic episodes. I’ve been having manic, depressed, and mixed episodes my entire life. They’re old hats that have become familiar. In a way, the flesh eating bugs was the same old story. Sometimes I can’t take a shower because of the paranoia of bugs in the water. I have covered myself head to toe because the air is attacking me with bugs. It was like my brain didn’t have the energy to come up with a new way to betray me. That is what hallucinatory schizophrenic episodes feel like- my brain is betraying me. I know what I’m experiencing visually isn’t real but I see it none-the-less.

The episode did pass and I’m feeling more like the sane person I know lives in me. I feel normal again. Well, normal until the next episode strikes. Who knows when, what type, and why that will happen. Okay, most of the time, the why can’t be pinned down (other than the obvious- that I live with a mental disorder). However, the when and what type isn’t certain. I try not to fall into the trap by playing the guessing game and simply enjoy the times of sanity. It’s what keeps me going when I’m in the middle of an episode.

 

 

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