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.

Investigating ECT

Yesterday I had a consultation with a local ECT specialist.

ECT (electroconvulsive therapy) is generally considered a last resort treatment for people in severe manic or depressive states whose symptoms have not responded to medication. The procedure works by producing a controlled seizure in an anesthetized patient by means of a low controlled electric current passed through the brain.

I can probably guess what you’re thinking at this point, and yes… it is a serious procedure. Though this form of treatment has undergone significant improvements since its early usage it is still highly stigmatized, even by many of those within the mental health community. At the same time, it is one of the few “proven” (i.e. studied) treatment options for people who experience severe symptoms that do not respond to medications (like mine).

I also feel inclined to note that I have not made any solid decisions regarding this form of treatment yet and I still consider myself to be in the investigative phase.

Thus the consultation.

Frankly, I am not sure why I was so nervous heading into my appointment. I knew I wasn’t headed toward receiving ECT yesterday and I have generally reached the point in my  life where I don’t let doctors boss me around anymore. Still… I guess I was worried that, like most doctors, this one might try to shove his agenda down my throat without letting me make an important decision like this on my own.

Turns out I was completely off base, and the man I met with (a psychiatrist who I believe I may have encountered while hospitalized in 2011, though it is hard to remember) was extremely straightforward with me and seemed genuinely empathetic to my situation. Those two qualities are ones that I look for in particular from my healthcare providers, and after talking with him for 45 minutes to an hour I was convinced that if I were to receive ECT treatment he is someone who would genuinely do his best to help me. That was a breath of fresh air, let me tell you!

He told me the treatments would be 2-3 times a week for 6-12 treatments (depending on how I responded) and though the procedure only takes 20-30 minutes, the anesthesia would require me to spend about three and a half hours at the hospital. He performs the procedure in an outpatient setting, which is what I would prefer. My regular psychiatrist gave me the option of speaking to someone at a hospital much closer to where I live but they would require me to be inpatient during the entire course of the treatment which sounds, frankly, like a huge bummer to me.

I was surprised when he told me flat out;

“There will be nausea. There will be headaches. There will be body aches… but those are all things we can treat when they happen.”

No “might-be”s or “possibility of” side effects talk from him, which I also really appreciated. He has been doing this work for a long time, so he knows the routine and had no need to beat around the bush.

When the topic of memory loss came up, he said, somewhat forlorn, that that is not something that can be treated when it occurs and short term memory loss (being able to remember things from years ago but not what happened twenty minutes go) is pretty prevalent for people who have received ECT, but the memory loss he has seen has improved and dissipated within one month to six weeks after the treatment.

Obviously that is the big-scary when it comes to ECT (for me anyway) but again, I appreciated that he was up front about it.

One thing he told me that I didn’t know about previously was that ECT performed on bipolar patients for a depressive state can (rarely) trigger mania.

He said that for his depressed bipolar patients the procedure had a 70% success rate of reducing depression, however there is also a 40% relapse rate within 2-6 months after the procedure (which may require patients to undergo “maintenance” ECT sessions once a month or every few weeks).

Walking away from the appointment, my biggest concern was that he told me I could not be taking Lithium while having ECT (something I never heard before), and though the 1200 mg of lithium I am on is having no positive effects for me anyway, I am a little nervous about coming off of it because I had a hell of a time reaching my current dosage. With the prevalent side effects I experience, it isn’t uncommon for me to experience side effects when reducing or coming off a medication (in addition to going up or starting one).

After looking into the lithium/ECT issues when I got home it seems that research about mixing the two has not been completely straightforward (some studies have shown it works out fine, others have had big problems) but it appears that if lithium is something that even could cause a problem I certainly wouldn’t want to risk it.

Basically, my goal with this consultation was to speak with an ECT specialist and see if this is something he would recommend for me. Honestly when he heard I had already tried 14 medications with no luck (and some doctors refer for ECT after only 3 medications not working) he told me that while he considers me to be a good candidate for the procedure he wants to give me plenty of time and resources to help me think about it.

I told him flat out that even though I have been experiencing several months of worsening depression at this point, I consider ECT to be something of a last resort. It is important to me to learn what I can about it now, because if my depressive symptoms start getting worse (and trust me, they aren’t particularly hunky-dory now) I know I can enter into a place where I would trade my soul to the devil for one small moment of relief. There are definitely situations I can foresee where ECT will be on the table as an option, but I don’t want to leave that decision to a moment where my only deciding factors are based on desperation and not reason.

His response was not what I expected.

“Well, I really hope your depression lifts before then.”

As it stands now, he is scheduling three weeks out, which is a significantly shorter wait time than I expected honestly. That might increase once winter comes on, but knowing that I have ECT as an option with a relatively short wait time (at least, for mental health services in the Pacific Northwest) gives me a bit of solace.

Of course, I got home and had more questions… but he gave me his phone number and said I can (and should) call and ask him any more questions I can think of.

Despite the terror I felt walking in, I left the appointment feeling slightly optimistic. I am in no rush to make any decisions, and I am proud of myself for exploring this before the depression turns my brain into oatmeal.

Or, at least, overcooked oatmeal.

The Increase/Decrease Game

After seeing my psychiatrist last week he agreed that reducing the amount of quetiapine/seroquel I am taking was a good idea after the laundry list of side effects I had been having.

My dosage was cut in half (from 50 mg to 25 mg) and though it took four or five days, my digestive issues seem to have improved somewhat over the course of the last week. They still aren’t stellar, but I am having significantly less pain so I feel confident the quetiapine/seroquel was a big part of that.

The hair loss I was experiencing was almost immediately reduced by at least 50% which really makes me feel better. Even though I am probably still losing a bit more than normal, it isn’t four times the normal amount I was experiencing two weeks ago.

I would say the decidedly less fun part about reducing the quetiapine/seroquel was four nights of insomnia I had a really hard time dealing with. I was waking up every 30-60 minutes and felt something close to panic attacks several times each night. After the fourth night of very little sleep and developing some big dark circles under my eyes I knew I was getting extremely irritable and was getting close to cracking.

Thankfully the next night sleep came with a vengeance and I have been sleeping like a baby ever since. Last night I only woke up once, which I admit almost never happens for me. (Hurray!)

Still no change from the bupropion/wellbutrin. My psychiatrist suggested I try 450 mg, but I didn’t want to change dosages of two medications at once (because then I wouldn’t know which effects belonged to which medications). Once I feel like things have settled down from the quetiapine/seroquel change that is most likely the next step.

Goodbye Summer, Hello Relief!

As a child, summer was always a time to celebrate. After all, there was no school, no homework, and (if I was lucky) no real responsibility in sight. Unfortunately as an adult, my feelings about summer have changed dramatically.

The funny thing is, I know that in winter I’m complaining about Seattle winter. Dark days, the constant drizzle, and experiencing days, weeks, and even months sometimes without seeing that big yellow orb in the sky.

But now, as an adult, I am finding summer to be equally as challenging. While I admit it feels quite odd to feel so depressed when the sun is shining, the issue I have is with temperature.

Living in a cold corner of the country, we get excited when things warm up at the beginning of summer to about 65 degrees. By 70-75 degrees, people are sporting bikinis. The typical home in the Pacific Northwest however has not been built for true heat, so when things start getting into the 80’s and even the not-so-lucky 90’s there is a distinct lack of air conditioning that makes these temperatures more livable in other parts of America.

With that in mind, that is part of the reason I have been somewhat absent in the blogosphere through the middle part of this week. In addition to the knuckle-dragging depression I’ve been having, my medications (which seem to constantly warn me not to get “too hot”) make it even more difficult for me to cool down. Once I get warm, I can’t seem to cool off again very easily.

In the end, there is only so much time I can spend in a cold shower, or hanging out in an air conditioned grocery store before people start getting concerned. Even with windows opened strategically and every fan we own pointed right at me I was still averaging a body temperature of 100-101 degrees, and while the internet seemed happy to suggest I “sip a cool drink” I really wasn’t kidding anyone… the heat this week left me miserable.

Usually I can tolerate a pretty significant amount of misery before becoming agitated, but after three nights of waking up every thirty minutes due to the heat I was overjoyed to see some big, grey, poofy clouds this morning. I’m hoping a little cool air can help with my irritability and give me a chance to take a nap because frankly… I’m exhausted and I am well approaching the snapping point. I can’t really imagine how this lack of sleep has not triggered mania this week, maybe that is a sign of the tight grip depression has on me at this point? I don’t know.

I know in four or five months I’ll be eating my own words and I will be desperate for a little sunshine, but at this point, at the close of summer, I feel happy to hand over the keys of summer in exchange for the cold, grey, relatively stable weather of the rainy season.

Well, Well, …Wellbutrin?

Today I have been on Bupropion (Wellbutrin) for two weeks. I took 150 mg for the first week and then I was bumped up to 300 mg a week ago. I was a little nervous about going up to 300 mg as my notes (from my first hospitalization around 10 years ago) recorded my maximum dose of Wellbutrin at the time as being 150 mg.

As usual, my psychiatrist had been very specific about keeping tabs on any mania that might be triggered by this medication but (as I suspected) nothing even remotely akin to mania has taken place so far. In fact, the only changes I have detected are:

  • increased volume in the (already present) ringing in my ears
  • dry mouth surpassing anything Lithium every threw at me -to the point where I have been experimenting with different dry-mouth remedies and medications
  • greatly increased tremor action (increasing what was already present due to Lithium)

While I don’t particularly enjoy clanging glasses of water against my teeth while trying to drink or being almost entirely unable to apply eyeliner on myself because I’m shaking so much, honestly I’d rather experience that over, say, a headache lasting two full weeks (ahem, you  know who you are seroquel).

I understand that I have not been taking this antidepressant long enough to realistically expect any improvement in my (still sinking) depression, but the few inconvenient side effects I’ve had have been extremely preferable to pretty much medications 1-14.

Having said that, my psychiatrist was insistent that I increase my seroquel/quetiapine dosage to 50 mg before starting the wellbutrin. I realize this is considered a tiny amount to most people, but even so I’ve been having a very hard time on it. Beyond the two week headache I had when I increased the dosage (which seems to have abated now) I’ve also been having a host of gastrointestinal problems involving a lot of pain, more than a little discomfort, and enough bloating to make me look like a pregnant woman by the time I go to bed.

If I need to keep taking quetiapine, a trip to my gastroenterologist is imminent. None of my previous stomach medications are working anymore, and while this is something that is probably number one on my list of concerns there is an extremely close tie for number one, namely;

hair loss.

Yeah. Nobody likes to have chunks of hair falling out, and right now I am losing at least 3-4 times the amount I would normally lose in a day. My hair is very thick (so I am sure it is not noticeable yet) but I don’t particularly want to use the fact that I have a lot of hair as an excuse to lose more. I know this is not a side effect listed for Seroquel, but  when I did a quick search online it seems I am not the only one experiencing this (by far). Also, I wouldn’t peg this on the wellbutrin because it started before I began taking it.

Thankfully, today I get to address these issues (and more) with my psychiatrist. I am not exactly looking forward to going out in public but I have definitely been experiencing some things that need to be addressed. Hopefully I can find some relief from the physical discomfort, even if I’m still waiting on relief for the emotional.