Monthly Archives: September 2014

Complication Damage Control

After last Friday’s realization (regarding the delusional state I’d been overtaken by) I contacted my psychiatrist. He prescribed me the ODT (orally dissolving tablet) version of Rispiridone as I haven’t been able to stomach lactose recently and lactose is an inactive ingredient in several (if not most) psychiatric drugs.

The lactose acts as a base for the medication to be applied to in most tablets, but usually isn’t used in extended release tablets, capsules, and orally dissolving tablets. I figured this out after a delirious game I played last week called, “why are certain drugs making me vomit?” The result? The vomity drugs were the ones that contained lactose as an inactive ingredient. I was not surprised, since I haven’t been able to tolerate lactose in food for over a month now.

Had this not been an issue, I would have just taken my typical emergency dosage of rispiridone right away… but at the (very slow) rate my stomach has been healing I have been doing everything in my power not to upset it and in conjunction, not further upset my mental state.

By the time my psychiatrist and I got this plan sorted out it was already late afternoon on Friday and I had spent most of the day with my hands clenched on either side of my head. I don’t know if I was hoping to squeeze out the delirium or if I was simply trying to make lemonade out of lemons, but I figured if I could wait until I got the prescription filled everything would be relatively ok.

Of course, that was assuming any of the pharmacies in a five mile radius of my apartment had the ODT version of rispiridone. Not one did. I called them all, and yelled at the technicians who worked at most of them. The best they could do was have it by monday and I didn’t know if I could make it.

I also didn’t know what the alternative would be. Would I have to go to the emergency room again? I’ve already been to the emergency room four times in the last six months, and I was even more concerned that doing that would result in being given more medication I would have no control over, having more bad reactions (triggering uncontrollable vomiting), and starting over (again) in terms of trying to give my stomach a leg up.

I trudged through the weekend by being about 10% mentally present in everything that took place and trapped in my own head, full of a horrible amount of noise, the other 90%.

The noise. Every time I mentioned it I imagined myself with the snarled, green face of the Grinch who stole Christmas.

I have tinitus (ringing in the ears) anyway, but since starting up wellbutrin again the ringing has become exponentially worse. When I feel alright I can kind of ignore it by pushing it to the back of my mind, but when I don’t feel alright and all of that stuff near the back of my mind gets giant neon signs shaped like arrows pointing at it, the ringing joins hands with the other noise (negative thought chatter, obsessive thought loops, and internal radio station playing the first ten seconds of five different songs in a loop in my brain) that takes place when I become agitated and though bad enough on its own, it easily combines with ambient noise to form a wall of noise I can’t get beyond.

When I get trapped like that by the noise, that’s when things get truly dicey. I become very desperate and impulsive, and when I’m already in a suicidal state I fall into red-alert really quickly.

The first thing I did yesterday was contact my psychiatrist and negotiate reducing the wellbutrin dose in hopes of helping the ringing. Today I can say that this change has helped, so I am really feeling relieved in terms of that already.

I have also still been having a significant amount of nausea, dizziness, and blurry vision that did not improve after stopping the seroquel. I am hopeful that this might be linked to the wellbutrin and by lowering the dosage I can get a reduction in these symptoms.

After procuring and taking the ODT rispiridone last night I must say that it was probably the most awful thing (well, medication) I’ve ever tasted and even this morning it made my taste-buds act funny.

Despite that fact I woke up after a night free of nightmares (something that hasn’t happened in several weeks) and even though I hear a little, high-pitched whine, my mind feels considerably less cluttered. I generally consider the typical tablet form of rispiridone to provide relief in the form of a foggy stupidity, but I feel much more alert today than I expected. I can’t say for sure that this is only due to the rispiridone because I am also taking half as much wellbutrin as I was two days ago, but either way I am very glad to get some relief.

The bad side? Welllllllll… my hands did start twitching uncontrollably after imbibing the rispiridone last night, so I need to spend a little more time talking to my healthcare team before I could consider attempting to take it in an every-day fashion (and not as needed as I have been) but just the fact that I have something I can take in an emergency at this point makes me feel significantly less stressed.

These mixed episodes with psychosis have usually come on in waves for me, so even though I feel good about making it through one I am not going to try to fool myself into thinking this is the end of that super fun delusion time. I’m just hoping that if I can continue to be gentle with my stomach and not rock the boat, the waves that come next might be a bit less severe.

More Rest, More… Butter?

Very quick update.

Please do not be offended if I do not answer your calls, texts, or emails in the next few days. Between the physical illness I’ve been having and intense insomnia I have stumbled into a place of extreme irritability, confusion, delusion, and paranoia.

Yesterday I shampooed my hair three times because I couldn’t figure out which bottle was which. I also snapped at my poor old granny on the phone, which is why I am instigating a period of Sarah-radio-silence until I can talk like a civilized human being to people again. Or, at least, civilized-ish.

On the upside, after some really fun biopsies of my stomach lining I do not have celiac disease (thanks doc!), I have finally slept four hours in a row (thanks benadryl!), I’ve been enjoying a John Cusack movie marathon, and I ate 1/8 teaspoon of butter this morning on an otherwise very dry bagel (weee!). This is huge progress (especially since I spent a big chunk of time earlier this week doing more vomiting) and I hope it means I will soon be able to stop putting olive oil and salt on my noodles and eating with my eyes closed pretending it is butter.

Once I get better at the not-hating-everyone bit I should hopefully be on my way to recovery on all fronts (well, that and once intestinal infection is ruled out). Usually the emotional instability part takes a bit longer to catch up, but who knows… maybe if I drink enough smoothies I’ll start to feel peppier.

Crisis Text Line Charts Outline When & Where Teen Crises Strike

Most of you already know that I am a huge fan of charts and graphs that can provide a visual representation of the things many of us go through, from anything like stress or anxiety to those situations involving having thoughts of suicide or self harm. Mood charting has been has had a huge impact on the way I view my own mental health, and on the way I can convey what I experience to others.

Crisis Text Line, a New York based non-profit, is geared toward teens in crisis. The service allows users to text the crisis line about their crisis instead of having to call, making the subsequent conversation less intimidating and less likely to be overheard in public places (like schools or parks) where teens often spend much of their time.

This new format creates interesting opportunities, as text messages do leave behind a certain amount of data. This data has been combined and sorted allowing anyone to visit their website and select different types of crises and see the  time of day, day of the week, change over time, and crises per state based on the volume of text messages received about each type of crisis at any given time.

I realize that is a lengthy description, so here’s an example:

If you combine “time of day” and “anxiety” you will see that crisis texts involving anxiety peak between 7-8 am and at lunchtime.

If you combine “time of day” and “depression” you will see that crisis texts involving depression tend to peak around 8-9 pm.

Really, no description could do justice to how comprehensive and great these graphs are, giving us a unique opportunity to consider how we can help teens -or potentially anyone who is experiencing a crisis situation.

I would highly recommend checking this out, crisis topics range from eating disorders to bullying to sexual abuse and beyond, so there is a multitude of information here, not just that pertaining to depression or suicide.

You can find the Crisis Text Line website here, and their page specifically for the charts and graphs here.

There is also an article over at The Atlantic that contains a few more details I have not provided here if you are looking for more.

A Missed Dose

In the last 28 years I have not skipped or missed a dose of medication.

Wednesday night as I huddled in the ER (for the second time in two weeks) the team of doctors and nurses surrounding me looked started as I told them this fact. I guess it never occurred to me that this might be unusual in any way, but in an emergency room where they’re relatively used to patients with mental illness suddenly stopping their medication and sailing into big episodes that might be landing them there… well, I quickly felt that the staff probably did not believe me.

It is true, though. And while most people would try to praise this as an act of good self control or healthy living I fear that the truth is actually somewhere in the realm of the opposite.

You see… when I was 17 I was taking an antidepressant that (little did I know) was slowly dissolving any semblance of sanity I had left at the time. Despite the fact that it was making me worse and worse, I took it religiously. At the time I was being treated for obsessive compulsive disorder, and frankly there were many things in my life that I needed to do religiously or I firmly believed I would die very suddenly.

I have always been the sort of person that once a routine has been established I have a very very hard time deviating from that routine, even when it is harming me. For the last several months, for example, I have eaten one large fried egg over medium and a slice of buttermilk toast for breakfast every day (at least, every day that I could eat). There are times when I struggle with the notion that I probably shouldn’t eat so many eggs (hello cholesterol), but the best I can do when I feel really ballsy is switch out the buttermilk toast for an english muffin. Not eating this breakfast is… well… wrong.

Anyway, at 17, taking said antidepressant religiously and spiraling into a very dark, weird place I was quickly in an psychiatric inpatient hospitalization situation. Within 24 hours I became outrageously ill, and I’m talking the most ill I had ever felt in my life up to (and even after) that point. Eight hours of uncontrollable vomiting and dry-heaving, and dizziness to the point of being unable to even dress myself.

This also happened to be the time when one of the nurses decided to display an abuse of power, laughing at my sudden illness, yelling at me, accusing me of having an eating disorder, and refusing to help me for several hours. By the time I was able to deduce that I was having withdrawals from my usual medication regimen, the damage was already done, and the fear this experience had instilled in me took root very firmly.

I could not and would not ever stop taking any medication suddenly for any reason again if it was in my power, and the paranoia and fear that manifested from this situation has often swung me into the danger zone in the opposite direction. What I mean is that while I don’t feel compelled to stop taking my medication suddenly (or act cavalier about keeping up with taking it), I have become even more obsessive and paranoid about taking these pills. To top it off, I’ve had many instances of not being able to remember if I took them or not, and then accidentally taking them several times over just in case I had forgotten.

Realistically this doesn’t provide a much more safe environment, and suffice it to say that withdrawal of many drugs is probably extremely preferable to overdose.

I had been feeling really rough on wednesday, a lot of the dizziness and nausea from the week previous had returned. By the time I took my dosage of lithium for the night, I vomited it back up in a matter of minutes.

Though I had already been advised earlier in the day to go to the ER by my doctor to receive intervenes nausea medication and fluids, it wasn’t until the panic of suddenly being lithium free for the first night in four years set in that I was heading straight for the hospital. I was certain that if I didn’t feel horribly sick already (and I did) I was headed for a night of fire and brimstone.

By the time I got to the ER I was hitting patches of uncontrollable crying. I was terrified, and even though the seasoned internet sage reported I would likely only experience mental and mood symptoms from the missed dose, the way my body reacts to medications (or lack thereof) has been significantly different than the norm in almost every situation. I had no way to know what might happen next.

So the doctors dealt with the nausea and the fluids, and when I brought the idea of “missing” (or losing, rather) my lithium dose that night the doctor instinctively told me to take it again when I got home.

Now, given my history, this is something I had already considered myself. However, I had been pretty dehydrated for a week or so and I was concerned because dehydration can lead to lithium toxicity. When I said this to the doctor, I also mentioned that I have already experienced lithium toxicity before and wouldn’t like to do it again. His conclusion was that they would check my lithium levels in the blood they had already taken earlier when I checked in.

Thirty minutes later he walked into my room and commented that my lithium levels were a bit higher than he expected. He advised I wait until the next night to continue with my lithium.

Among the papers I was given when I headed home for the night was the lab report that included my lithium level. It was nearly twice my regular level.

When I read that I was immediately glad I had gone to the ER and not just taken the lithium again. If I had, I would have undoubtedly experienced lithium toxicity, as I was nearly there already. For the first time I felt grateful for having vomited… and I can’t help but feel slightly mystified at the possibility that my body was rejecting the excess lithium all on its own.

I am now back on track with my medications and working with a GI specialist to try to pinpoint the source of my stomach issues. It is a little funny how not eating can make eating something as basic as plain white rice taste amazing!

Wrapping Up the Seroquel Journey

Things with seroquel have gone from bad to worse to emergency status.

After lowering my dosage from 50 mg to 25 mg a couple weeks ago my GI issues seemed to get slightly better. The intense pain I was having subsided, and I was no longer running to the bathroom every thirty minutes. I took this as a sign that the bulk of the abdominal issues I’ve been having have been triggered by (and if not, largely fueled by) the seroquel.

I wanted to give the remaining 25 mg of seroquel time to let the side effects from reducing my dosage subside so I could see if 25 mg would still be causing me problems. After three weeks the nausea I was having in the evening started to grow. I found myself needing to pop a tums every hour, and then every thirty minutes, and then every ten minutes. I used pepto bismol and pepcid and drank ginger ale, and by the time I could see where things were heading, I tried to make an appointment with my GI doctor. That appointment still hasn’t happened yet, it takes place later this week.

Soooooo the only thing I could do was to contact my psychiatrist and express (quite urgently) that I needed to be taken off the seroquel completely. He consented, but by that time it was too late.

The nausea became completely overpowering, and I became so dizzy I couldn’t look at the television screen or even the screen on my phone without vomiting. My stomach pain (like the nausea and dizziness) grew exponentially and last Thursday I quickly found myself in a situation where it had been 24 hours since I could keep water or food of any kind down.

My doctor had given me some anti-nausea medication that wasn’t working. By the time I got to the ER they shot me full of two more kinds that didn’t help. The third helped, but made me dizzy until I became nauseated again. Well that, and it gave me hallucinations.

By Thursday night I had only been able to eat about 600 calories total over the previous three days. I’d had three hours of sleep (because the nausea was so intense). And even though I’d stopped taking the seroquel the day before (after shit started hitting the fan so I knew this wasn’t a product of withdrawal) things continued to escalate for another 24 hours.

The reason I went to the ER was because after going so long without water (and subsequently becoming dehydrated) I knew I would need some fluids or I would run the risk of experiencing lithium toxicity again. That and I needed something to help with the nausea because I wanted desperately to sleep.

Two sacks of fluid via IV and (I think) three types of anti-nausea medication later (frankly I can’t remember a lot after the hallucinations took place) I asked them to let me leave. The staff seemed in no hurry to find “the cause” of my intense pain and nausea/vomiting and I wasn’t concerned about that because I largely believe it to be the seroquel. I also have that appointment later this week with my GI doctor anyway who knows my history and seems like a pretty smart lady, so all I wanted was something to help me make it through the week to the appointment.

Though I had expressed my theory about the seroquel, there were several other theories going around. Maybe an ulcer was to blame, or pancreatitis (which it isn’t, the test came back negative later), or any other number of things.

The concoction of medicines they injected me with in the ER allowed me to sleep for the first time in several nights, and while on Friday I was sill experiencing pain and extreme fatigue my nausea was improving. I also managed to eat half a bowl of soup, and a few crackers without incident.

By Saturday my appetite was slowly returning. I felt hungry for the first time in over six weeks (as the seroquel had suppressed my appetite over that entire time) and my energy and alertness were beginning to return. Though I was still having stomach pain and nausea, they were largely only taking place after eating and in the evening again.

On Sunday I felt relatively normal, despite only being able to eat very small amounts and being fairly dizzy upon walking around. The pain was still present, but again, mostly after eating and in the evening when my stomach is the most full.

I have been avoiding all foods that don’t mix well with ulcers (dairy, caffeine, pretty much everything I was avoiding before this anyway when my symptoms were getting worse) just in case an ulcer is playing some kind of role in this situation.

At this point just the fact that my symptoms have been improving like this (and within 48 hours of stopping the seroquel) I feel certain that if that medication wasn’t causing the bulk of the issues, it was at least feeding the fire. My issues seem to be receding now instead of ramping up, so either way I feel like I’m on top.

Bipolar Disorder and Hygiene

While this isn’t a topic discussed very often, hygiene is one of the elements often noted by psychiatrists and therapists when diagnosing or tracking depression, bipolar disorder, schizoaffective disorder, and schizophrenia in patients. Poor hygiene can be a big indicator of depression, psychosis, or mania, and I thought today I would discuss my own experiences with this a little bit.

The simplest place for me to begin is probably with depression. I often use a three-tiered rating scale for my depressive symptoms, where a 1 is considered mild and a 3 is quite severe.

My hygiene usually starts to slip in phase two. At that point I have been struggling to keep up with things like daily chores, social situations, and my motivation might be completely devoid or I have lack of caring for most of the things going on.

When I feel overwhelmed and like I can’t catch up with all of the things I am supposed to be doing, it usually means I start cutting corners. I’ll eat my eggs with a spoon so I don’t have to do the dishes. I’ll wear the same thing every day for a week so I don’t have to figure out a new outfit. Likewise, my time in the shower will start to slip from every other day to every three or four days.

Part of it is about not feeling like I have enough time to get everything done, but another part is simply about not wanting to. When I am forcing myself to attempt to get the dishes done, it takes a lot of time and energy to do so. Generally the more depressed I get, the less energy and motivation I have. Activities that may have happened on a daily basis become less and less frequent, and that includes everything from leaving the apartment to showering.

Another aspect of the hygiene problem for me comes from the shower itself. If I am on the couch I might be able to keep my mind somewhat occupied by the TV. If I am in bed I could try to read a book. When I’m in the shower though, I am left entirely with my own thoughts. If I am depressed and take a shower, I feel almost exclusively worse coming out than I did going in. So what do I normally do in regard to triggers? I avoid them.

When phase 3 of depression rears its ugly head it means I am grappling with severe suicidality. Every minute feels like a constant battle with myself, and I care less and less about the things around me. In this place it is far more than a lack of motivation that keeps me from taking care of myself, it is like being caught in a net in my own mind, and if I don’t spend every waking moment trying to free myself from that net I will be trapped there forever.

When that happens, good hygiene is not even remotely on my radar. Everything external became extraneous, and I can’t help but be convinced that shaving my legs wont have anything to do with making it through the episode alive.

As far as mania is concerned (as I can perform everything fairly well while hypomanic) the issue is similar to phase three of depression, except that attention that I have turned inward when suicidal is turned outward when I experience mania. The attention and focus I have on one small detail often consumes me, and my priorities around normal external things (like sleep, eating, bathing) evaporate. It isn’t about losing motivation, on the contrary -I find my motivation so consuming I can’t think to focus on anything else.

Similarly, there are times when I am manic where I feel sort of above the law, if you know what I mean. Something larger or more meaningful than the average person, and in those moments I can say that my slightly delusional mind finds basic hygiene below me.

The issues I have regarding hygiene and psychosis might only really make sense if you have experienced it. There have been times where I have felt so paranoid and fearful that standing behind a shower curtain (and not being able to see what is on the other side) is impossible. Other times I have feelings of violence and rage so intense I don’t feel comfortable leaving my room or the presence of another person… which puts bathing somewhat out of the question.

Honestly, I think the issues we face in regard to maintaining good hygiene is not something understood by most people. Those that have not experienced the entanglement of depression, the overwhelming focus of mania, or the abrupt fear of psychosis may fail to grasp how difficult it can be to focus on oneself and follow through when there are so many symptoms guiding me away from bathing or changing my socks or brushing my teeth.

I guess I just wanted to make a point of explaining that poor hygiene isn’t always a product of laziness or a brazen lack of adherence to social standards. There are times when a lack of energy or motivation can put the kibosh on taking care of our hygiene, as well as times when our symptoms are severe enough to engross us so fully that our goal is merely survival and nothing more.

In a society where a “bad” outfit or poor hygiene can make one the product of ridicule, I think it is important to remember that there may be factors in any given person’s situation that we may not know about. When people can be so quick to judge, sometimes I feel like the most support can come from the person who simply gives me a break.

Is Lactose Free the Way to Be?

I’ve been conducting a few small experiments and it seems the combination of seroquel and stress/anxiety has rendered me temporarily lactose intolerant.

Thankfully this is something I recognize to be temporary because it has happened before several times. Living with IBS and intense and constant anxiety has often meant that the smallest thing (whether that be stress or chemical) can throw my body completely out of whack. It has happened with stressful jobs I’ve had, antibiotics I’ve taken, medication I’ve tried for acid reflux (which is a little ironic), and as a kid the simple joy or excitement of staying the night at a friend’s house could set it off.

I didn’t understand the connection until I was in my early twenties and in a high-stress job in the fashion industry. I found myself getting exponentially more ill as the job progressed, and when I went to see a doctor (who was by no means a specialist) I was told (without any tests being administered) that I must be gluten intolerant. That diagnosis was all the rage at the time.

I was mortified, because if there is anything I love more than cheese (and it feels a little blasphemous to say this because of how much I love cheese) it is a well crafted donut or beautiful fatty-fat slice of homemade bread.

After nine months of adhering to a strict gluten free diet (and expelling a LOT of tears about having to part ways with most of my favorite foods) it was clear the diet wasn’t helping. I skipped the first doctor and went straight to a specialist, who told me within three minutes of entering his office that I wasn’t gluten intolerant at all.

I left his office and immediately found myself a maple bar straight away.

It appeared at the time that my problem was actually lactose intolerance, but within three months of quitting the high-stress job I had no problems with eating dairy anymore.

Even though this isn’t really new to me, it can be both frustrating and inconvenient to avoid certain foods (especially when they are already in my fridge).

I’ve discovered that many times I can kind of see the problem coming because the first indicator I’ve noticed that something is wrong is that I will suddenly be unable to tolerate caffeine. While I don’t drink much of it (I usually treat myself with a cup of tea here and there) I find that once caffeine begins to wreak havoc on my digestive system, other problems are not far behind.

As I’ve mentioned, this also makes things challenging when trying medications. There have been a handful of psychiatric drugs that I’ve tried that have completely disrupted my digestive system, and unfortunately it appears that seroquel is one of them. At this point I am still taking 25 mg, but I don’t expect things to remain that way for long once I meet with my gastroenterologist.

While cutting down the seroquel from 50 mg to 25 mg did improve a lot of the pain I was experiencing, the other aspects of the digestive problems seem just as prevalent as before. -And even at 25 mg I haven’t felt hungry in six weeks.

The only reason I am waiting to contact my psychiatrist about cutting it out completely is that there may be something the gastroenterologist can do. However, if the only suggestions she has are to put me on one of the drugs that has already had a similar effect on my stomach the decision to eliminate seroquel completely is an easy one.

Though I do also realize that stress is a contributing factor in this situation, having somewhat settled in to my new apartment has helped my external stress level go down a bit. Even though the stress I have been feeling has been reduced slightly, my digestive problems have been getting worse… leaving seroquel to take most of the heat as the culprit here.

I think one of the big factors that people forget about when it comes to treating psychiatric disorders is the fact that many people have other medical conditions that can make them good or bad candidates for certain types of treatment or medications. It is a part of the puzzle regarding why one treatment doesn’t fit all, and I believe it is an element often overlooked when addressing that topic.