I hadn’t planned on discussing my electroconvulsive therapy (ECT) experience with many people. I found it terrible, scarring, not to mention futile and immensely embarrassing; those aren’t generally feelings I like to talk about. I still find the idea of shock therapy, well, shocking. Incomprehensible. Absolutely impossible.
[Note: I am running a survey on real patients’ experiences with, and perspectives on, electroconvulsive therapy (ECT). If you’ve had ECT and want your voice heard, please take the survey here. More detailed information on the ECT survey can be found here.]
Write About What You Know — I Know ECT
The problem with being a writer is that you write what you know, and you’re driven to write what plagues you most. At least I am. I can’t write about fluffy bunnies and sparkling rainbows, because these aren’t the things that occupy my conscious mind. But ECT. Ironically it erased pieces of my brain only to seemingly permanently occupy others. I’m acutely aware of its happening and yet find it completely unbelievable.
Caffeine is the world’s most popular psychoactive substance. So many of us love it a la Starbucks, Tim Hortons or just out or our home coffee machine. Me, I love coffee and I’m a fan of caffeine too. Coffee’s the nectar of the gods and nothing will convince me otherwise.
It seems though, caffeine can actually hurt you. I know, I never thought my beloved coffee could harm me, but I suppose anything that you abuse, will abuse you back. So, here is everything you ever needed to know about caffeine, caffeine disorders and caffeine and mental illness but were afraid to ask.
The kind people at PsychCentral have voted me one of the top ten bipolar blogs again this year. I’m honored. Thanks. Here’s what they have to say:
Caught in my Bipolar Burble.
She’s been blogging since 2003 and is consistently brilliant. Intimate and raw, very descriptive and at times hard to read. She’s been through a lot and her treatment-resistant disorder is still not responding to treatments, including a recent failed attempt at ECT (which led to the spin-off blog ECT: Electro-Convulsive Terror (has since been removed)). Harrowing.
Being called brilliant is enough to make an unstable girl cry. Again, thank-you.
For anyone who is wondering, I am currently trying a calcium channel blocker to control my mood. This is a last-line treatment really as there are conflicting reports as to whether it works at all, but when you’re me, last-line treatments are really all you have left. However, some studies say that calcium channel blockers DO work and the upside is that woman can even take them during pregnancy which typically isn’t true of psychotropic medications. I’m copying information on this directly from psycheducation.org which I link to frequently. If you’re bipolar, and you haven’t checked out that site, you need to. It has the most comprehensive treatment information I have ever seen. (There is a book with most of the information as well, which is handy because it’s much better laid out.) So, as Dr. Phelps says:
A long time ago several randomized trials were done which confirmed that verapamil had “mood stabilizing” properties. This may be related to it’s action on calcium channels, the small pores in cells that allow calcium to move in and out. Calcium seems to be part of the story of what causes bipolar disorder (for more on that subject, go to that heading from the Diagnosis Details page). However, there were two “negative” trials later, meaning that the data did not show verapamil had mood stabilizing effects.
As a result of this “mixed” evidence, interest in verapamil has been very limited (in addition, because it is available in multiple generics, there is no manufacturer willing to pump money into research and advertising for this medication, so it “looks” less attractive than it really is). I tried it with several patients and was not particularly impressed myself.
Then I met Dr. Steve Dubovsky, an eminent researcher from University of Colorado, who had done much of the original work on this medication. He said “you have to use the non-slow-release version!” So, I’ve since tried it again in that form, and sure enough, I’m pretty sure I’ve seen people respond to it, as with other recognized mood stabilizers. Then, a recent surge in interest has come along from several researchers concerned about the effects of conventional mood stabilizers on women’s hormones. They point out that verapamil may also be safe to use in pregnancy, which is not true for any of the “big three” (lithium, Depakote, Tegretol/Trileptal). And they have just published a study showing further support (although in “open trial” design, there were actually quite a few more patients in this study than in Dubovsky’s original workDubovsky; not conclusive, but strongly supportive evidence) for verapamil’s effectiveness in women with bipolar disorder. Some of these women were pregnant.Wisner et al They used the non-slow-release form, if I am interpreting their methods correctly.
There is some concern about immediate-release versions of verapamil having a negative effect on heart function. American Academy… But this issue is still being studied (e.g. Hilleman) and does not appear to be an issue in terms of the use of this medication as a bipolar disorder treatment. For a patient who has known heart disease, or for a patient who is already on a blood pressure medication, a discussion with her/his doctor prior to starting verapamil in either form would probably be wise.
Where verapamil fits in the list of mood stabilizers is unclear because we have so little information on it, and that which we have is conflicting (e.g. see a review by Janicak, 2000). However, it carries relatively few risks compared to other commonly used mood stabilizers and must be kept in mind for cases in which the better-studied medications have not been effective or tolerable. It is also a consideration for a woman contemplating pregnancy, if it can be established before the pregnancy that this is an effective agent, which can take months or even years depending on the woman’s usual course of bipolar symptoms.
Today, I was watching a Comcast On Demand program about the causes of bipolar. I thought I’d watch and see how ridiculous it was because obviously, no one knows the cause of bipolar disorder.
However, the spot had some interesting information on the brain, neurotransmitters and bipolar disorder, which I then transcribed so I could share it with you. (Yes, I really did transcribe the whole thing.)
It’s in fairly layperson terms, so give it a look. At the bottom is a bit more information about dopamine, norepinephrine, and serotonin. This, unfortunately, is not in layperson terms, but is interesting nonetheless.
Brain Chemistry and Bipolar Disorder
And for the info:
…but research has shown that chemical imbalances in the brain play an especially key role in the onset of the disease. Every adult has more than 90 billion brain cells, or neurons. These neurons communicate with each other through chemical messengers called neurotransmitters. Neurotransmitters help control a range of bodily functions such as thinking, reasoning, and mood. But when they don’t function properly then problems can occur.
Here’s how neurotransmitters work, each neurons is composed of an axon, a dendrite, and cell body. When a neuron fires, an electrical signal is sent to the axon, and down a long slender tube that functions like an antennae. At the end of the axon the signal is transferred to the neurotransmitters. These neurotransmitters then travel across a synapse, or gap, to a dendrite of another neuron which receives the chemical messages. Once the process is complete the neurotransmitters are pumped back into the releasing neuron.
Under normal circumstances, just the right amount of a neurotransmitter is sent across the gap to communicate with other neurons, but in cases of bipolar disorder levels of certain neurotransmitters are abnormally high or low which experts believe can trigger mood abnormalities. For example, bipolar depression has been linked to low levels of serotonin in the synaptic gap. Serotonin is a neurotransmitter that helps regulate moods. Manic episodes have been associated with high levels of norepinephrine; the neurotransmitter that contributes to our fight or flight response. And too much dopamine, a neurotransmitter effecting emotions and perceptions, is linked to psychotic symptoms such as hallucinations.
Breakthroughs in diagnostic imaging have revealed that the brain structure of those suffering from bipolar disorders also differs from those of healthy individuals. Using advanced MRI and PET scanning technologies, experts now have evidence that experiences of sever episodes of bipolar depression can lead to changes in different parts of the brain. For example, the brain has two hypocampii, each located in the temporal lobes. One of the functions of the hippocampus is to help control learning, emotions, and memory. In some bipolar patients the hippocampus appears to shrink over time. Other areas of the brain’s temporal regions may shrink as well.
Since bipolar disorder often runs in families, scientists are trying to identify the specific genes that cause the condition. But genes are likely not the only explanation. Studies on identical twins reveal that if one twin develops bipolar, the other twin has an 80% chanced of developing bipolar as well. This suggests that while genes are a primary cause, other factors may also be needed for the disease to manifest itself. People born with the possibility of bipolar may find that stressful events like divorce, job loss or emotional strain can trigger the illness…
Serontonin, the Brain and Bipolar Disorder
1. It gives us self-confidence, a feeling of safety and security.
2. It causes us to feel sleepy.
3. It increases our appetites.
The part of the brain where it does each of these 3 things is a different part of the brain from the part where the other 2 things occur. Thus, for example, increasing serotonin in the part of the brain where self-confidence is will increase your self-confidence, but not your sleepiness. Unfortunately, we have no medications to increase only the serotonin in one part of the brain. This explains why medications to increase serotonin in the brain can also cause increased appetite and sleepiness.
Medications which increase serotonin in the brain (SSRI’s such as citalopram, escitalopram, fluoxetine, paroxetine, and sertraline and SNRI’s such as venlafaxine and duloxetine) give us more self-confidence, and a feeling of safety and security.
By the way, serotonin also exists in our gastrointestinal tracts. In this location, it stimulates digestion. This is why such medications can cause gastrointestinal upset. But they can also help constipation.
Norepinephrine, the Brain and Bipolar Disorder
Norepinephrine is a catecholamine with dual roles as a hormone and a neurotransmitter.
As a stress hormone, norepinephrine affects parts of the brain where attention and responding actions are controlled. Along with epinephrine, norepinephrine also underlies the fight-or-flight response, directly increasing heart rate, triggering the release of glucose from energy stores, and increasing blood flow to skeletal muscle.
However, when norepinephrine acts as a drug it will increase blood pressure by its prominent increasing effects on the vascular tone from α-adrenergic receptor activation. The resulting increase in vascular resistance triggers a compensatory reflex that overcomes its direct stimulatory effects on the heart, called the baroreceptor reflex, which results in a drop in heart rate called reflex bradycardia.
Dopamine, the Brain and Bipolar Disorder
Dopamine has many functions in the brain, including important roles in behavior and cognition, voluntary movement, motivation and reward, inhibition of prolactin production (involved in lactation), sleep, mood, attention, and learning.
A common hypothesis, though not uncontroversial, is that dopamine has a function of transmitting reward prediction error. According to this hypothesis, the phasic responses of dopamine neurons are observed when an unexpected reward is presented. These responses transfer to the onset of a conditioned stimulus after repeated pairings with the reward. Further, dopamine neurons are depressed when the expected reward is omitted. Thus, dopamine neurons seem to encode the prediction error of rewarding outcomes. In nature, we learn to repeat behaviors that lead to maximize rewards. Dopamine is therefore believed to provide a teaching signal to parts of the brain responsible for acquiring new behavior. Temporal difference learning provides a computational model describing how the prediction error of dopamine neurons is used as a teaching signal.
I’ve written about this before, but due to the amount of misinformation on the internet on this topic, I feel compelled to write about it again.
- Omega-3 and Depression
- Folic Acid and Depression
- Low-Carb Diets and Mood
Now, first off, I do not believe you can cure depression or bipolar using diet. Let me be clear, people who tell you this are mostly flakes. There are ways though that you can possibly improve your treatment plan using dietary components.
Omega-3 and Depression
Omega-3: This is the most well-known and probably well-studied supplement, and it shows a lot of promise. Omega-3 also has been studied for other reasons too and it appears to be good for your heart also, so there are actually a few good reasons to take it.
Omega-3 is, of course, a long chain monounsaturated fat found in a number of foods including fatty fish like salmon. However, understand that you cannot eat enough fish to actually get into a clinical range to help depression. Feel free to eat salmon all you like, but don’t expect it to make you better. Again, people suggesting that you “eat more fatty fish” just really don’t know the research.
Omega-3 Over-the-Counter Supplement
Omega-3 supplements over-the-counter are a little different. They can bump up your omega-3 intake by quite a bit. But don’t by fooled. The big number on the front of the bottle is NOT the amount of omega-3’s you actually get in each capsule. Turn the bottle around to see the ingredients and you’ll see that the amount you get in each capsule might be only a third or less than the number reported on the front. So you might be thinking you’re doing something good for yourself, but just not getting the benefit from it.
So what’s going on here? It’s simple really, supplements are not regulated by anyone and so you never really know what you’re getting. If you’re trying to treat a life-threatening illness, I don’t think this is OK.
Luckily, there is an easy way to solve this problem. There is a pharmaceutical grade omega-3 supplement available for purchase. You just need to go to your doctor or psychiatrist and ask for it. Keep in mind, you should be asked for at least 2 GRAMS of omega-3 because that’s what the studies used. 3 grams would be OK too (and is what I take). Bring in the study abstract for your doctor for review if you don’t think he would be up on it, but it’s pretty widely known. And make sure he knows about the possible side-effects from taking large amounts of omega-3s. Thinning of the blood is one that I know of and so omega-3s should always be stopped several days before surgery. Definitely make sure that your doctor discusses with you anything that may effect yoaffectsonal medical issues.
Assuming you don’t have any specific risks, I have seen no side effects. Yay!
Folic Acid and Depression
Folate / Folic Acid: to be clear, folate is the substance in the body, and folic acid is the supplement you find on the shelf (pregnent woman are generally advised to take it). Folate definitiancies have been studied in depressives along with several other nutrients like B12. However, it appears that folate itself is not the part that’s definitiancy, it’s actually l-methylfolate, which is a compound that is created from folate. And the key here, is that one study has found that no matter how much folic acid you consume, your body may not be able to create enough l-methylfolate to actually fix your deficiency. So by telling you to take folic acid you may be doing absolutely nothing.
Again, luckily there is an easy fix. Your doctor can prescribe you a cheap pharmaceutical grade l-methylfolate supplement. Keep in mind, the number of people who respond to this supplement is very low, but as there don’t seem to be any side-effects (talk to your doctor) there’s no real downside to trying it.
Both of these supplements can/should be taken in addition to your conventional treatment.
Low-Carb Diets and Mood
And one final note. There is some thought that a low carbohydrate diet (like Atkins or South Beach) may adversely affect the serotonin in your brain which may effect mood and cognition. However, there is also evidence suggesting that this is not that case. Personally, I think long-term extreme low-carb diets may be a concern, but over the short term, no difference will probably be noticeable. However, if you have a serious mood disorder, like me, that might affect your choice of diet even if the evidence isn’t clear.
I like to think I know almost all there is to know about mood disorders, but I was pretty shocked when I read this:
The Surgeon’s General Report
Mood disorders are sometimes caused by general medical conditions or medications. Classic examples include the depressive syndromes associated with dominant hemispheric strokes, hypothyroidism, Cushing’s disease, and pancreatic cancer (DSM-IV). Among medications associated with depression, antihypertensives and oral contraceptives are the most frequent examples. Transient depressive syndromes are also common during withdrawal from alcohol and various other drugs of abuse. Mania is not uncommon during high-dose systemic therapy with glucocorticoids and has been associated with intoxication by stimulant and sympathomimetic drugs and with central nervous system (CNS) lupus, CNS human immunodeficiency viral (HIV) infections, and nondominant hemispheric strokes or tumors. Together, mood disorders due to known physiological or medical causes may account for as many as 5 to 15 percent of all treated cases (Quitkin et al., 1993b). They often go unrecognized until after standard therapies have failed.
I’m shocked. No one ever mentioned anything about birth control pills to me and I’ve been on them for years. YEARS. This is yet another reason why doctors so often get on my bad side.
This quote was taken from the Mental Health: A Report of the Surgeon General. The whole report is a good read, but very long. It’s everything you wanted to know but didn’t know you needed to ask.
In a small number of cases people who take Lamictal or some other anticonvulsance can develop a deadly rash named Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) (a more severe version). Again this is rare. However, if you develop a rash, here is a description of SJS leisions.
If you this there is even a small rash is related to this syndrom see a doctor immediately and tell them what medications you are on. Again, without treatment this can kill you.
1. The rash begins as a round erythematous papule, which enlarges up to 1 to 2 cm over 24 to 48 hours. The periphery of the lesion is erythematous and raised or edematous. The center becomes more cyanotic looking and can be white/yellow or gray. This is the pathognomonic “target lesion,” but it may not be present in all cases. If a blister forms in the middle, the term “iris lesion” is more appropriate.2. Lesions are generally symmetrical, with acral to central spread including extensor surfaces, face, palms, and soles. Mucosal lesions indicate a more severe type; bullae with sloughing in large sheets suggests TEN.
Now, understand that depression impinges on memory function and the correlation below may not be the rTMS improving memory per se but the relief of depression actually causing memory to function like it did when the brain was not depressed.
Still good news though. Memory loss is one of the awful things about depression as it hinders your ability to not only remember your loved ones, and life, but also work.
Oh, and FYI, Wernicke’s area, which is where the rTMS is being applied, is closer to the brain stem than I would like making it less likely that I could try it (The VNS coil is too close.)
Wernicke’s area is one of the two parts of the cerebral cortex linked since the late nineteenth century to speech (the other is the Broca’s area). It is traditionally considered to consist of the posterior …
AstraZeneca E-mails Show Debate on Seroquel Risks
Associated Press – May. 20, 2009
TRENTON, New Jersey–Marketing executives at British drug maker AstraZeneca PLC for years blocked efforts by company scientists to raise concerns the antipsychotic drug Seroquel caused weight gain and other problems, saying that would harm sales, plaintiff lawyers say.
Ed Blizzard, a Houston attorney whose firm is helping to represent about 6,000 Seroquel plaintiffs, said data showing Seroquel was “not very effective” and had serious side effects “was either spun or skewed or outright concealed.”
Seroquel was AstraZeneca’s No. 2 drug in sales last year, with revenue of $4.5 billion.
In a chain of e-mails in one document, a scientists’ safety evaluation committee in June 2000 recommended removing “limited” before the words “weight gain” in the list of Seroquel side effects, because many patients gained significant weight.
Marketing staff suggested trying other explanations, such as whether patients took other drugs that could be blamed. One marketing executive, Medical Affairs Manager Richard Owen, then wrote that such a change “is potentially damaging to Seroquel.”
The change in the drug’s label was finally made in 2002. That was after Barry Arnold, the vice president for clinical drug safety, complained repeatedly to the physician in charge of Seroquel drug safety about “Commercial (executives) having such an influence.”
Yet soon after the label change, AstraZeneca trademarked the term “weight-neutral” as an advertising slogan for Seroquel, Blizzard noted. He said data showed about one-quarter of patients taking Seroquel increased their weight by more than 7 percent. (Note that this is only the 7% weight gain noted during the study which is a much shorter duration that typical treatment.)
Later in 2002, Simon Hagger, global brand manager for Seroquel, e-mailed nearly 20 marketing staffers to say “we are under clear instruction from the highest level within AstraZeneca at this time not to discuss details surrounding trial 41,” outside the company. That patient study, concluded that year, found elevated levels of blood sugar.
In April, a panel of FDA scientific advisers said Seroquel’s side effects, including weight gain, high blood sugar and potential heart problems, were too troubling to make it a first choice against depression or anxiety. On a split vote, the panel said Seroquel could be used as an added therapy for patients taking other medicines but not getting relief from depression. The FDA has yet to issue a final ruling.
AstraZeneca faces roughly 15,000 lawsuits over Seroquel, about 60 percent of them in state courts. The first state trial is set to begin in Delaware on June 29. No federal trials have been held yet.
You have to register (it’s free) to see the whole article. I can’t say enough bad things about antipsychotics, myself, but definitely worse than the drug are the marketers and executives that try to hide the dangers to thrust the horrible side-effects onto an unsuspecting public. Nail their asses to the wall say I.
I frequent poster, Herb, has introduced more information on the rTMS with VNS topic. Some doctors are saying it is possible. Additionally, if you read the whole thread, someone corrects me and notes that MRIs are possible with a VNS implant. This is, actually, true. Cyberonics has put together some physician information on this, copied below.
So it goes back to exactly what I said, no one really knows in the implications. Proceed at your own risk.
Additionally, if you read the whole thread, someone corrects me and notes that MRIs are possible with a VNS implant. This is, actually, true. Cyberonics has put together some physician information on this, copied below (no, I don’t know what this stuff means, sorry):
MAGNETIC RESONANCE IMAGING (MRI) ______
Caution: Magnetic resonance imaging (MRI) should not be performed with a magnetic resonance body coil in the transmit mode. The heat induced in the Lead by an MRI body scan can cause injury.
If an MRI should be done, use only a transmit and receive type of head coil. Magnetic and RF fields produced by MRI may change the Pulse Generator settings (change to reset parameters) or activate the device. Stimulation has been shown to cause the adverse events reported in the “Adverse Events” section in the indication-specific parts of the multi-part physician manuals. MRI compatibility was demonstrated using a 1.5T General Electric Signa Imager with a Model 100 only. The Model 102 and Model 102R are functionally equivalent to the Model 100. Testing on this imager as performed on a phantom1 indicated that the following Pulse Generator and MRI
procedures can be used safely without adverse events:
Pulse Generator output programmed to 0 mA for the MRI procedure, and afterward, retested by performing the System Diagnostics (Lead Test) and reprogrammed to the original settings
Head coil type: transmit and receive only
Static magnetic field strength: ≤2.0 tesla
Specific absorption rate (SAR): <1.3 W/kg for a 154.5-lb (70-kg) patient Time-varying intensity: <10 tesla/sec Use caution when other MRI systems are used, since adverse events may occur because of different magnetic field distributions. Consider other imaging modalities when appropriate. Caution: Procedures in which the RF is transmitted by a body coil should not be done on a patient who has the VNS Therapy™ System. Thus, protocols must not be used that utilize local coils that are RF-receive only, with RF-transmit performed by the body coil. Note that some RF head coils are receive-only, and that most other local coils, such as knee and spinal coils, are also RF receive-only. These coils must not be used in patients with the VNS Therapy System.
I can’t find the source on their annoying site, but for more info, contact Cyberonics.
I’m a geek. If you know me, I deny this, but it’s actually true. Not the Star Wars-watching, video-game drenched, mother-basement living, socially awkward,virgin type, but a geek nonetheless. I do, after all, make software for a living, understand math, and make logical arguments.
A Mood Chart
So, in the vein supportive numbers, I have been charting my mood for a while. I chart depression (obviously) along with mania, anxiety, and irritation. I’ve also added trend lines for anxiety and depression (the dotted ones):
The headline is the depression is dropping while the anxiety is increasing. Looking a bit closer, you can see that Jul. 16 when I added the Zyprexa/Celexa combo, the depression dropped substantially. It’s probably the best I have felt for over a year. I don’t have the numbers to prove it, but trust me, it’s true. (I’m scared to even write that because I feel like it will be taken away from me. I feel like a higher power will reach down into my life and destroy it. I suppose a higher power will reach into my brain and start squishing it like squishing whole tomatoes for a marinara sauce. Brain sauce. Yum.)
Mood charting has two main benefits.
One, you have objective record for what is happening to you. Your doctor is going to ask you “how are you feeling?” (which is the dumbest question ever) and you have to be able to answer it. It’s harder than it sounds. Are you more anxious, or less? What side effects have you noticed? How long have they been happening? What kind of pain? How depressed are you compared to last time? Irritation? Mania? Energy level? And it would be handy if you could answer all of that in 2 minutes or less.
Seriously? Yes, seriously. You only have a few minutes with your doctor. You don’t have time to “think about it”. Mood charting can help you maintain an objective view of what is really going on. Generally, I can remember all these things because I have been doing this forever, but you may not be so “experienced”.
Two, you’ll have historic record so when you switch doctors, you know what to tell the new guy. Think your new doc will sift through the records of the old one? Well, maybe, but maybe not. It’s so much better if YOU can answer their questions and be the record for them. Then you know it’s actually accurate and right. And trust me, you won’t remember 17 drugs from now what happened with THIS antidepressant and THIS mood stabilizer combination. You just won’t. At this point, all the goddamned drugs sound the same to me. Alprozylepin. Meh. Whatever.
Try charting the numbers with drug names, dosages, side-effects, and “other pertinent info”. If every time you eat an ice cream sundae you feel super, maybe note that. Or your menstrual cycle, or whatever makes sense for you. Generally I haven’t bothered doing this because I’m so depressingly constant. I know how I am, I’m depressed. Screw off already. It just so happens that something has changed. Unbelievably. Miraculously.
See, I have the numbers to prove it.
(Child says to God, “how do I know you’re God? Show me a miracle.” God points to a tree. The child says, “that’s not a miracle, that’s a tree!”, to which God says, “let’s see you make one”.
God should have pointed to me. Let’s see you fix her.)