Hot weather and other factors, autoimmune disease, and psychosis

I’m thankful to bloggers who wrote about their experience with diet and depression. I’ve learned through the blogs and then my own observation that I was making my mental health worse by eating gluten in all possible forms – pasta, sandwiches, Subway, wraps, tempura, soy sauce. I have also established that casein in cow’s milk makes me more psychotic, so I had to give up a lot of delicious habits – taro bubble tea, cheesecake, easily ordering a coffee with milk at Denny’s – I now usually carry goat milk in a cooler with me everywhere, in case I want to add it to tea. This post won’t be about diet though, I have posted on diet previously:

Autoimmune Encephalitis and Diet

This post is about the fact that changing your diet may improve your mental health but it won’t necessarily cure you. I think it’s important to remember that in order to not constantly blame yourself. I used to do that when I was on strict AIP diet – I used to blame myself for feeling depressed. After I noticed that the AIP diet was actually helping, I became convinced that I would soon be cured, as long as I stay on the diet. Probably I’ve read too many blogs claiming that grains contain lectins that cause brain inflammation and therefore depression. There are a lot of success stories online with bloggers stating that their depression vanished after going on AIP diet or paleo or keto or vegan, you name it. It’s easy then to start blaming yourself each time you feel depressed again – if all those people were cured, maybe then I am slacking, not avoiding enough foods, not being strict enough. I think we may go into the blaming state because we want to believe that we can have full control of our mood and it would be nice if as long as we didn’t eat certain ingredients, we would never be depressed or psychotic.

Blaming yourself only makes you feel worse though and it doesn’t let you accept the reality that mental health problems are caused by many factors. I think yes – you should definitely strive for a healthy diet – avoid fried foods, high glycemic foods, red meat, etc., but should you feel guilty about the brown rice bowl that you ate yesterday because AIP and paleo bloggers claim that all grains cause inflammation? No, I am not sure if there is any evidence that grains are an issue, some research actually suggests that the healthiest diets are ones that include whole grains – such as the Mediterranean and MIND diets. I think we have to accept that there are other factors affecting our mental health and some we cannot control. Periods are definitely one of them and they suck. I find that my paranoia and obsessive thoughts are definitely exacerbated during the first three days of my period. Can I cure this issue with diet? I don’t think so. Being female, my hormones will always fluctuate with the menstrual cycle, there is nothing I can do about that. I can remind myself that it’s only worse for three days and it will get better, I am not always psychotic, I can try exercising more, going for a walk. But cure? I don’t know of one.

Menstrual Psychosis: A Forgotten Disorder?

I have recently realized that heat increases my intrusive thoughts. I had observed for a while that hot weather makes me lethargic and quick-tempered, but now I have also correlated hot weather with psychosis. It had occurred several times during the past month when I experienced exacerbated negative commentary in my head. I noticed that each time this happened on a weekend when I was away, camping. Supposedly camping is better than work  – I was not alone, I was with friends, eating meals together – just as I like. Also I was moving – swimming, kayaking. Getting enough vitamin D. Definitely sniffing a lot of soil (reference to the antidepressant bacteria Soil Bacteria Work In Similar Way To Antidepressants), always bringing my own food in a cooler – tempeh, mung beans, buckwheat, freeze-dried vegetables, oatmeal. Stuff that I usually eat, so that was a constant factor. When analyzing what caused an event, we have to look into the differences, and the only factor that I could think of is heat. This summer has been very hot in Ontario, multiple days above 30 degrees. Every weekday though I am in an extremely air conditioned air building where I often wear my shawl. At home I have two functioning ACs. It was only during the camping that I was exposed to extreme heat for many hours in a row. I think I have to accept this fact – I love camping, but hot weather increases my aggression and psychotic symptoms.

There is also research supporting the idea that heat exacerbates mental health problems. “Above a threshold of 26.7°C, we observed a positive association between ambient temperature and hospital admissions for mental and behavioral disorders. Compared with non–heat-wave periods, hospital admissions increased by 7.3% during heat waves.

The Effect of Heat Waves on Mental Health in a Temperate Australian City

Heat exposure associated with mental illness – A mental hospital-based study in Hanoi, Vietnam looked at if there is a relationship between heat exposure and mental health problems. The results showed significant increase in hospital admissions for mental illnesses during periods of heatwaves, especially during longer periods of heat exposure.

Heat exposure associated with mental illness

Exposure to sun can also exacerbate autoimmune disease symptoms, and for me this directly means worsening of mental problems. ”

“‘Photosensitivity can trigger the whole darn disease, including full systemic flare and joint pain and kidney failure,’ Dr. Connolly said. ‘The younger patients sometimes say, ‘The heck with this, I’m tired of carrying sun block,’ and they’ll stay out there, and it’s not just that they are going to give themselves a bad rash. This is something to take seriously.’

The link between the sun and lupus flare-ups is thought to be a set of inflammatory protein molecules called cytokines, which are activated when ultraviolet light hits the skin. The skin inflammation that results can create a chain reaction of other symptoms.

A Sunny Day Can Mean All Sorts of Distress

This is all sad news, but I still want to go outside. I want to go hiking, kayaking down whitewater rivers, canoeing through uninhabited islands. I still have to accept that sometimes camping might make me feel worse. Probably I need to give up on t-shirts and always wear long sleeves when it’s hot. I do always wear a hat and sunscreen. Also going outside is important for vitamin D and we do need UV light to set our circadian rhythm. Therefore no, you shouldn’t lock yourself up in the house, but it’s better to not be out in the sun in the swim suit for too long. I’m going to stick with pants, shirts, running shoes, and caps. On the other hand I’m also not going to blame myself if I do feel worse. I did not create this disease, it’s not my fault that I react to weather, I can’t control the weather and I can’t avoid the weather. Let’s not feel worse by blaming, let’s learn from the available information and also remember that even if you are doing everything right, sometimes psychosis may still occur and we won’t know why. Maybe we will in the future and you will have this device that will tell you in real time ‘your dopamine levels are going higher than the suggested threshold, eat this scientifically advanced cookie and it will fix the problem’. I do hope for such a future, but for now it’s just science fiction. Research has shown that one way to reduce suffering during a psychotic episode is to accept the experience but not act on it. Accept also that there will be a peak of the symptoms but then they will diminish, it will pass.

Depression, inflammation, and what you could do

I am not a doctor, but I have been to many, so I am going to write out here the information that I have collected over the few years. The first step, if you are feeling depressed, would be going to a doctor. In Canada you can visit your family doctor if you have one, or you can go to ER. In October 2015 I was waiting for a subway train in the station and I thought of jumping under it. The thought was not spontaneous, I have been getting more and more depressed over a period of time. I told my boyfriend about my thoughts of jumping and he convinced me to go to the ER. I was terrified when the doctor who examined me said that I would be involuntarily hospitalized in the psychiatric unit. The first thing that came to mind was probably a scene from One Flew Over the Cuckoo’s Nest. Given that I was in a psychotic state, I imagined that my boyfriend and the doctors conspired to lock me up for an indefinite amount of time. Well, none of this happened. The law is that you can be involuntarily hospitalized for three days, and then your case has to be reviewed. Two opinions of physicians are required to maintain the detention.

Involuntary hospital admission – Canada

Actually I should say I got lucky that when I went to the ER I got seen by several psychiatrists and got to be examined for three days. At the moment there are not enough beds and not enough psychiatrists in Ontario, often people needing help are placed on six to nine months wait lists. Going to ER is therefore a good option because it’s more likely that there will be a psychiatrist available right away (yes, you might sit in the waiting room for five hours, but that’s not six months). Also blood tests would be performed to determine whether any health conditions could be causing your psychiatric symptoms. Tests performed could include the following:

  • TSH level to check for hypo/hyperthyroidism
  • Blood glucose level to check for diabetes
  • Iron/ferritin levels to check for anemia
  • Renal function (for chronic kidney disease)

In my experience doctors did not check for autoimmune diseases as part of the lab work, but if you are experiencing physical symptoms as well, you could ask your doctor to check this. Autoimmune testing:

  • Thyroid antibody levels (Anti-Tg and Anti-TPO antibodies) – high levels can indicate Hashimoto’s thyroiditis, also Hashimoto’s Encephalopathy (but this is quite rare)
  • C-reactive protein – marker of inflammation
  • Antinuclear antibodies (ANA) – checking for lupus
  • Rheumatoid factor – associated with rheumatoid arthritis
  • Anti-NMDAR antibodies – anti-NMDA receptor encephalitis (rare occurrence)
  • Celiac disease testing (it is also an autoimmune disorder)

Gastrointestinal disorders are also associated with depression. Individuals with gastritis are more likely to suffer from anxiety, panic attacks and depression. Depression and anxiety is also more often present in people with irritable bowel syndrome. If you experience any gastrointestinal/abdominal pains and discomfort, it’s important to visit a gastroenterologist. You can be tested for celiac disease. New research also indicates that many people who considered themselves having a gluten sensitivity actually had issues with high FODMAP foods. These are fermentable oligo di mono-saccharides and polyols, short chain carbohydrates and sugar alcohols. Personally I was diagnosed with chronic gastritis a few years ago, even before I got to the psychiatrist. The gastroenterologist who diagnosed me did not have any suggestions for me. A year ago I visited a different gastroenterologist, and she advised me to try a low FODMAP diet. I have been following it for a while, even after I stopped the AIP diet, and it definitely reduced my abdominal pains. Hopefully it is affecting my mood positively as well.

Gastritis linked to mood and anxiety disorders

Is gluten causing your depression

Once you talk to your family doctor or your psychiatrist about depression, if you do get diagnosed with depression, usually anti-depressants are prescribed. If you experience psychosis, anti-psychotics can be prescribed (on their own or along with anti-depressants). I am not a doctor, so it’s not for me to tell you which medication to take, but I just want to bring to your attention recent research on the link between depression and inflammation. I think no matter whether you do or don’t take psychiatric medication, it might be worthwhile to analyze your lifestyle and to think whether there are unhealthy aspects of it that you could change.

New research shows depression linked with inflammation

I know this may sound pointless – it may seem that no medication or lifestyle changes can help because it is life itself that is so meaningless, so emotionally painful, and how is that going to get changed? I used to get angry at suggestions by psychiatrists to attend therapy or my mom telling me to take fish oil. What does fish oil have to do with my life? How will it make me less lonely, how would it make life less dull and meaningless? The thought that helps me to try a suggestion is “what do I have to lose?” If I am already at the point where I no longer want to live, what will I lose by trying fish oil? Yes, it means I will agree to still be alive and try taking these stupid capsules, but I don’t have to be alive forever, it’s not possible anyways. I am not agreeing to suffer forever, I am just agreeing to stay alive for now, and to try.

Back to inflammation discussion – so for example you say “ok, fine, maybe I will try to stay alive, but so what? What is the suggestion?” Well my suggestion is in addition to discussing with your psychiatrist medication/therapy options, look into your daily diet and activities. From the article above, it is stated that the Journal of Clinical Psychiatry published a study with results indicating that increased inflammation in the body may be linked with depression. Inflammation is when there is a response from the immune system. Many different immune cells can be activated during inflammation and they produce different substances, such as antibodies (there are different types).

We need the immune system to be active to fight viruses and bacteria, but what the authors of the paper are saying, is that chronic inflammation does not help us and is damaging instead, reducing chronic inflammation may reduce depressive symptoms. PsychologyToday author in the article recommends avoiding fried foods, soda, white bread and pastries, margarine, lard, and red meat. In general highly processed foods and refined carbohydrates are considered to be linked with inflammation. White bread, white rice, pizza pops, hot dogs, salami, cookies, etc. In general a lot of doctors advise to follow a Mediterranean diet, which means reducing red meat, processed foods, refined carbohydrates and sweets. It includes eating the following:

  • whole grains/pseudograins (quinoa, brown rice, millet, oats, buckwheat, etc.); it is suggested to eat them whole and not in form of grain flour
  • poultry – turkey and chicken
  • fish, especially fatty fish like salmon
  • eggs (I suggest trying quail eggs!)
  • vegetables
  • berries
  • olive oil instead of vegetable and seed oils
  • legumes (checked whether you have issues with high FODMAP foods)
  • nuts and seeds (try finding those that weren’t roasted in vegetable/seed oils, you can eat raw nuts)
  • dairy – if you have issues with cow milk, there is goat milk; there is also goat yougurt and you can make goat kefir
  • some fruits

Mediterannean diet plan

I think no matter what you were diagnosed – depression, schizophrenia, bi-polar, etc., a healthy diet is very important. It’s very important for anyone. Our brain is just an organ like all other organs and it needs proper nutrients and can also get damaged, like other organs, by chronic inflammation. At first I was very skeptical about the correlation between diet and my thoughts, but then as I started experimenting with changes in what I eat, I noticed that it does affect what I think. Sometimes I am really tempted to buy ice-cream or something like that, but I just remind myself that for me it’s not worth it, it can take me to a very dark place. I just have to accept that as someone with diabetes has to watch their carb intake, I also have to watch what I eat because of my chronic autoimmune condition. This is just how it is, I have to accept that it’s chronic, and that I can’t just go to the food court and buy whatever I want. I mostly bring food from home or I buy from places that list all of their ingredients, so that I can make sure it doesn’t have gluten, cow’s dairy, a lot of sugar, high FODMAP items, etc.

Yes, it’s not pleasant having to worry about the ingredients each time you eat, but the benefit for me was a change in my thought process, and I find that the most valuable. Our thoughts and emotions are what matters because that is our experience of life, so that is the number one thing that I want to change myself, I want to have a positive life experience.

 

Auditory Hallucinations Simulation

I hope technology will help us to simulate others’ experiences. This is especially needed in psychiatry. I often found myself lacking appropriate words to describe what I felt. My previous psychiatrist misdiagnosed me with schizophrenia. There is currently no lab test to verify whether someone does have schizophrenia, my diagnosis was based on a verbal consultation. I don’t know what people with schizophrenia experience so I can’t know whether my experiences were actually similar or not. Did we all feel this extreme fear in the same way or was ‘fear’ just a common word that we used but our experiences were actually different? I’m sure many people out there, like me, dream of a machine that would allow us to project our feelings onto someone else. We don’t have such an invention at the moment, but the first step is through the use of audio and video. I discovered an interesting representation of auditory hallucinations on YouTube, link below. I know that it doesn’t convey the emotions that a person could be experiencing along with the hallucinations, but it is a start in explaining how schizophrenia/psychosis can affect a person.

Auditory hallucinations – representation

It’s better to listen to this audio in headphones in order to get a better simulation of the surrounding sound. Put on your headphones and try to go through the whole length of the audio. It’s quite unpleasant. It’s nice to know that any second you can pause the video. With real psychosis unfortunately you don’t know when it’s going to end. Psychosis also is usually not just hearing voices that aren’t there, it’s thoughts and emotions – panic, fear, distrust. How can someone know that they are having a psychotic episode versus rational thoughts that are unpleasant? The line is not clear. Recently I had an episode at work during which I kind of heard my boyfriend’s voice inside my head saying that what I did was a ‘low level job’, ‘it was pointless’, that he wouldn’t do such a job, that I was wasting my life. Was that a psychotic episode caused by my immune system acting up or does everyone experience such moments? I would say it was closer to psychosis as it was similar to the audio representation – the voice was not part of my thoughts, it was inside my head, but I could not control it. This seems similar to what people with schizophrenia describe about auditory hallucinations, but then many people without schizophrenia also complain about inside negative ‘voices’. Perhaps by ‘inside voice’ in general people really mean thoughts, and these are more under their control, unlike the hallucinations.

Below is another video of schizophrenia simulation. As one comment states, “This is KINDA accurate but you can’t really recreate the feeling of panic and doubt and paranoia. During an episode you’re possessed by so many emotions that a video just can’t convey.”

Schizophrenia Simulation

What I experienced in the most acute stages of encephalitis also could not be portrayed well with just audio or video. What I experienced was primal fear. Imagine maybe being in an airplane, a long trans-Atlantic flight. You are going 900 kilometers per hour, ten thousand meters above the ocean. Suddenly there is severe turbulence. You’ve experienced turbulence before, but not of this magnitude. You hope it will cease soon, because the pilots know what they are doing, right? But it doesn’t, there is another fall through the air, you can feel it. Perhaps before the turbulence started you were reading a book, do you think you will be able to continue? Or you were talking to the person you are flying with about housing prices, will you be able to hold the conversation, or will you be overwhelmed with the primal fear? The fear that we experience when we are suddenly reminded of our mortality with an added rush of adrenaline. And not just our mortality, but also the mortality of people who for us make our world. That’s what acute encephalitis episodes were like for me. It was like constantly being in that passenger plane above the ocean in severe turbulence. And if that goes on for long enough, when the fear is constantly present, you may then actually start to wish for the situation to resolve in any way, as long as it resolves quickly. I mean that you may wish for the plane to just fall quickly, you no longer believe in safe arrival, but you just want to already escape the fear and the anticipation of pain.

Autoimmune Encephalitis vs. Schizophrenia

I don’t have schizophrenia so I can’t say that I experienced it, but I was misdiagnosed with it, therefore it’s possible that some of my experiences are similar to those of people with schizophrenia. Unfortunately autoimmune encephalitis is often  misdiagnosed as a psychiatric disorder. I spent a lot of time in the Understanding Hashimoto’s Encephalopathy Facebook group and after talking to the women there, the commont story that emerged was that most of them were initially referred to a psychiatrist and treated with antipsychotics/antidepressants/benzodiazepines. I say women because the group members are mostly female, probably over 90%. Autoimmune diseases affect women more often than men and this seems to hold true for autoimmune encephalitis. Schizophrenia on the other hand is more common among males.

I am not a schizophrenia expert, but since my psychiatrist assumed that I had it and I was treated for it, from experience I can say that schizophrenia is usually treated with antipsychotics such as risperidone and olanzapine. Psychotherapy can also be recommended but in addition to the antipsychotics, it would not be enough on its own usually. Autoimmune encephalitis does not improve with antipsychotics. AE is inflammation of the brain that is caused by the immune system and it required immune suppression such as IV steroids, IVIG or plasmapheresis. Many patients have to stay on oral immune suppressants such as prednisone or Cellcept. Some get regular Rituxan infusions. Some patients do take antidepressants or antipsychotics in addition to the immunosuppressant treatment, but the first step should really be suppressing the immune system.

Autoimmune encephalitis often does cause psychiatric symptoms such as intense fear, panic, paranoia, delusional thoughts and depression. All these symptoms could be present in patients with schizophrenia. Schizophrenia is also much more common than autoimmune encephalitis, it affects about 1% of population. Since psychosis due to autoimmune reaction is quite rare, it’s reasonable for a psychiatrist to assume schizophrenia, schizoaffective disorder, or psychotic depression. I do think though that if the psychosis is present along with physical symptoms, a blood test for autoimmune conditions should be performed as well. I don’t think schizophrenia is associated with facial swelling, lightheadedness, brain fog, extreme fatigue, etc. Autoimmune encephalitis on the other hand does cause all these physical symptoms and more severe ones as well such as seizures and going into a coma. Also I think that if a patient has tried different antipsychotics for several months and has not responded to them, it’s probably time to consider that there might be a different cause and perform further testing. My psychiatrist for some reason did not consider this. I was not aware of existence of autoimmune diseases, it was my mom who suggested specific blood tests.

BBC – Some psychosis cases an immune disorder

Further on, once I started reading more about causes of panic, anxiety, and mood swings, I bought a glucometer and decided to check my blood glucose. My fasting blood sugar was checked previously at the hospital and it was fine, but after performing my own measures, I noticed a problem. After specific meals that contained high glycemic index foods, my blood sugar could stay at higher than 11 mmol/L two hours after eating. Diabetes UK states that blood glucose over 8 mmol / L two hours after a meal is of concern. Later on I spoke about these results to a doctor and she said I may have hyperglycemia. I also noticed feeling psychologically worse when my blood sugar was high. My point here is that if you are not responding to antipsychotics, there are further things to investigate. There is autoimmune testing – high levels of thyroid antibodies could indicate Hashimoto’s encephalitis, there are also other types of autoimmune encephalitis with different antibodies (NMDA receptor encephalitis, for example). TSH, free T3, and free T4 is a standard test to check the thyroid function, hypo/hyper thyroidism can also cause psychosis. Diabetes/hyperglycemia can affect your mood. Usually fating blood sugar is checked, but I would also verify blood glucose levels two hours after a meal with high glycemic carboydrates.

Diabetes UK – Diabetes and Hyperglycemia