Fear of the dark

I was diagnosed with mast cell disease in 2012. By the time this diagnosis came, I was emotionally numb. I had been sick for years with terrifying and increasingly severe symptoms, had lost most of my hearing and repeatedly tested negative for dozens of things, rare and otherwise.

Less than a month before, a neurotologist who I will never forgive told me that I needed to see a psychiatrist because I was faking my hearing loss. I had stopped taking all my meds two weeks earlier because I was just done. I called my immunologist and told him that I no longer believed that this disease was killing me faster than the variety of risky meds I was on without a firm diagnosis.

I honestly just wanted it to be over. I didn’t want to kill myself and I didn’t want to die. But I wanted it to be over. I was sleeping through entire days, waking dripping with sweat and this acrid smell emanating from my pores, shaking and trying not to fall over when I finally got out of bed. I was in a truly unbelievable amount of pain and sleep was my only respite. I wanted to close my eyes and just…leave.

After I was diagnosed, I learned a lot about anaphylaxis and started learning about mast cells. I fixated upon anaphylaxis that occurred while sleeping with an unhealthy intensity. Despite not having serious breathing issues, I became convinced that I would stop breathing and die in my sleep. The oblivion that had been a comfort only a few months ago was now a sinister presence, watching from the dark corners of my bedroom when I turned out the lights. I would lay awake wondering if I would be aware of my death if I died, if I would stop breathing and be forever alone in some infinite darkness, until panic seized me.

A lot has happened in the years since. I have developed new, rational fears, like forgetting one of my medications while traveling (which I have since done), being labeled hysterical/unreliable by doctors, or being served food that I have explicitly stated as unsafe. Mast cell disease is unpredictable and the fact that I can’t always anticipate what will or will not make me react is a wellspring for many of my fears. The fact that something was safe the last hundred times doesn’t mean it will be this time.

Fear is important to self preservation. It is evidence of a primordial necessity of being scared. I was very scared of the dark when I was growing up, long before I knew that the dark could offer sanctuary to any number of terrible things. It is something inherited, a vestige of its utility thousands of years ago. Being fearless with a disease like mine is cavalier and dangerous. Every person, every place, every thing offers the possibility of triggering a reaction.

Fear is also a big reason why so many of us are diagnosed with anxiety or panic disorders before ultimately garnering a mast cell diagnosis. Mast cell mediators can cause a wide array of severe neuropsychiatric symptoms and our body’s response to allergic inflammation, including release of epinephrine, can bolster anxiety or panic. A psychiatrist once asked me what I was so afraid of like the things I was scared of were benign. After I told him, he responded, “Well, I guess I would be scared of those things, too.”

Fear does not ruin my life or control it. I have a complex relationship with fear. I compensate for the unpredictability of this disease by trying to anticipate all possible outcomes of a situation and building redundancies and failsafes into my personal management of this disease. I do a lot of yoga and meditate (less than I should) and walk a lot. I do visualization when I am very anxious, but to be honest, I’m still very high strung. I’m very high strung and I am about half as anxious as I used to be.

We are all of us trying to control a disease that we can’t fully control. That is upsetting and sobering and also liberating. I am getting better about doing things and going places where I can’t control things as much and trying not to compulsively explain to people who don’t know me what to do if I start shocking. I am trying to do things that scare me, like taking on additional responsibilities, taking formal classes and having recurring obligations beyond those that are essential to my life and health. Sometimes things go well and sometimes they don’t. I’m trying to be okay with that. I’m not always okay with that.

I don’t really remember what it was like before, when fear wasn’t a dark horizon in the backdrop of my life. And I’m tempted to say that I’m not scared as much anymore, but I don’t think that’s true. I’m not scared as much at this exact moment while I am writing this post. But tonight, I’ll shut off the lights, and I will still be scared of the dark.

21 Responses

  1. Ducky June 10, 2016 / 8:09 pm

    I just left the new family therapist’s office. Took months for the VA to approve the care. Every time they’d ask me “What is your greatest fear right now?” I’d respond with a simple answer “Dying in front of my kid.”

    For most people, that’s a pretty.. irrational fear. So over and over I’d have to explain this diagnosis to people who haven’t ever heard of mast cells. Gah.

    Your fear of choking to death in your sleep has haunted my wife for years. Listening to me cough and wheeze through the night, years without sleeping right. She even told a GI doctor about how bad it was listening to me, and the doc told her she “shouldn’t be so overdramatic”. Three years before she was told that yeah, that’s actually quite possible.

    Thank you again for this blog. It’s good to remember that even though this is a very isolating set of diseases, that we aren’t completely alone.

    • Linda simmons June 11, 2016 / 7:37 am

      So well written what a horrible disease we battle. Linda S

  2. Shirley Roberts June 10, 2016 / 8:53 pm

    Oh Lisa: I am so sorry but understand because I feel like giving up most of the time now. And yet I don’t want to go because it is scary & I would be hurting so many people that I love.
    I know I am not on the right mast cell medicines but I can’t get a doctor to help me after seeing so many that I have no idea how many.
    Even in my 20’s I was passing out two or more times a day. After the hospital did a lot of tests they told me it was just a nervous breakdown and put me on a lot of pills that did nothing and I had to wean off from them.
    Now over forty years later I finally know I have EDS, POTS, mast cell & autonomic disfunction. But still the only thing I take is Allegra, Pepcid & two Benadryl six times a day trying to fight the mast cells but not doing a very good job.
    I am now stuck in bed almost all of the time because I can’t walk more than a few steps without my heart rate over 200.
    But I really do feel bad for you. You are so smart, have so much to live for, help so many people and I hope you have a long and happy life.
    Maybe you can do what my daughter did when she was young that she never told me about until she was grown. She had a favorite teddy bear she had in bed every night to protect her but more than that she filled up all of the space under her bed so no monsters could get under her bed. You can just see me always trying to get her room clean and taking everything out from under her bed just for her to put it back that night. We laugh about it now but when I found out that she had been doing it I felt so bad because she never told me. Somehow I know if she had I would have come up with something to help her.
    What can we find to help us!

    • Lisa Klimas June 11, 2016 / 2:38 am

      Thank you for the suggestion of a teddy bear bodyguard. I like that a lot. When I was growing up, I would put one big bear on my left side, my little bear on the right side, some miscellaneous stuffed animals by my feet and my blanky on top. Clearly this activated an anti-ghost and spooky things force field. Maybe I’ll resurrect this protocol. Thanks for reading!

    • Patrick Jordan June 11, 2016 / 9:20 am

      Your list of acronyms and conditions are all related to genetic mutations via vaccines. I affectionately call autonomic insufficiency Adult Onset Autism. All of these diseases are part of a continuum. That is little comfort without a way of rewriting the mutations. I am getting the sense from Floridamommio and Lisa and friends that perhaps there is a hormone connection during the sleep cycle. I will look into the melatonin aspect of it, all the while keeping in mind that if cytochrome coding has been damaged that even taking supplements might not work the mojo unless specific foods and drugs that suppress necessary cytochromes are removed.

      • Lisa Klimas June 11, 2016 / 10:14 am

        Then why do people who haven’t been vaccinated get them, too? How are some kids born with SM if it is caused by vaccination? How is it hereditary then?

        • Patrick Jordan June 11, 2016 / 2:43 pm

          Anyone born in a hospital after the 1980s is guaranteed to have at least the tetanus and/or hepatitis B vaccine at birth. With or without the parent’s consent. They have it down to such a shuck and jive confidence game that when they spirit away the kid to ‘measure and weigh’ them they jab them as quickly as possible because their federal funding depends on percentile compliance. A very large part of the genetic damage came from the polio vaccines beginning in the 1950s to where mutations and retroviral inclusions got into the germ cells of the parents, therefore a vaccine is no longer required for that damage to be passed in perpetuity. A mother simply has to be tricked into prenatal vaccines for the pollution to be embedded in mother and baby in utero. I’ve been at this insanity for over 30 years and although I have heard the legend of unvaccinated adults and children I have never met any despite traveling around the world. Quite often the hypnotized masses will go to the doctor for some kind of upper respiratory ailment and come back to me to report:
          ‘They gave me a shot”. There was no informed consent on whether the shot was antibiotics or a vaccine or both. The patient never asked, never called the facility to ask when I asked them to find out, and simply didn’t care. So, when folks casually report that they never had a vaccine in their lives, they operate in such an untethered mode that they would never know if they had even if the drug insert was hung around their necks. The easiest thing to grasp out of all of this is that the horrific kinds of diseases we are discussing could never arise out of a vacuum or some freak of evolutionary bad luck. They fit patterns and are epidemic. Our job is to effect the gene repair cycles.

          • Lisa Klimas June 11, 2016 / 4:08 pm

            Um, not all patients are from countries with mandatory vaccination. Also, what about children born at home with mast cell disease? I know two, one in the US and one in South America.

            People with mast cell disease didn’t get it by being too stupid to understand the world around them. I find your comments rude and condescending. “Hypnotized masses.” “Tricked.” Just stop.

          • Patrick Jordan June 11, 2016 / 8:17 pm

            You are absolutely correct. My comments were rude and condescending to those who I personally know who took as much interest in their own lives and health as cattle nuzzling the food trough. I meant no disrespect to you or anyone else on your blog. I will no longer post here.

  3. floridamommio June 10, 2016 / 10:43 pm

    I am no longer afraid of any of it. The mast cell attacks, the headaches from Intercranial Hypertension that make CSF drip from my ears, due to a Chiari Malformation.
    And now the latest dx : Mitochondrial Disease. That explains my overwhelming fatigue anyway.

    I lost my PCP earlier this month, and now my pain doctor, as well. Both are moving out of the area. I just don’t have the energy to find new doctors again.

    And so I sleep. 18 to 20 hours each day, I sleep. I don’t care anymore, whether I wake up or not, which has freed me from anxiety!

    I have appreciated your posts so much and I hope you continue to find coping mechanisms that help. I don’t know where you get your strength, but I very much appreciate that you care to light the way for others.

    Thank you,
    Kay Boling

  4. Patrick Jordan June 11, 2016 / 12:39 am

    Your personal insights are appreciated. My bumper sticker reads: Life Sucks — and then you keep Living.

    When I read what you and others describe as reactions to things that you had not previously reacted to or had not reacted in successive episodes, it does not have the same ring as allergen ‘spreading’ as found in multiple chemical sensitivity. Food reactions in MCS are often dealt with by rotating diets but this simply idles the immune system and the slightest slip will prime it again. Rotation diets might also stem the tide of digestive enzyme depletion leading to leukocytosis in the gut, but unless you are religious and rich there is no way to sustain something like that. When I read mention of food or environmental exposures being benign and then triggering a severe reaction for seemingly no reason, I can’t stop looking at it like a matrices. Was it the peanut or the aspergillus mold? Was it even the peanut or was it a week’s worth of industrial chemical overload that caused the peanut and/or the mold to push the body into I Can’t Take It Mode? Could you eat peanuts every day for a week and not have a problem until you picked your clothes up at the dry cleaners? So, there could be underlying causes that are not immediately apparent, or…there could be cycles. I used to get New Moonitis. Sick every New Moon, until I aggressively assaulted the microbes that liked to bloom under a dark sky. It took months of tracking the cyclical pattern. Could a reaction one day with no reaction the other be related to gut microbe reacting to food and environmental exposures following its incubation period? I had identified that there was a microbe in me that did not like the smell of burnt bakelite (phenolic plastic) because that was one of its waste products, therefore it did not like living in its own waste. The bug would not make its presence known unless I was exposed to burnt ballast in a fluorescent light or smoking power supplies in electronics. Burnt brakes cannot be praised highly enough in this zipcode of Hell.

    If you don’t mind, please restate or give more details on how you can be fine with some trigger one day and then devastated the next. There are quite a number of people out there suffering the same fate.

    Word choice is significant as well.

    Hate and rage are my muses. Liver meridian. When you use the word: Fear my first thought is: Kidney meridian. There are two forms of adrenaline: Fight or Flight. This is not a conserved function with a dual purpose. I do not discount fear of the dark, but I always wonder: is the emotion coming from the inside or is it being imposed from the outside. Some outrageous percentage (like 80%) of serotonin in the human system is made by microbes in the gut. So much for endogenous production. So much for us being in control of our own emotions. So, the question of epinephrine or its methylated cousin norepinephrine should be examined in a Fear related context and whether the production of the hormone/neurotransmitter is endogenous, exogenous and able to be methylated to a non-toxic state. How do mast cell disorders tolerate methylators? One of the kick in the gluteals is that trying different things to see if they work or cause paradoxical reactions is the time and health lost if it is the wrong thing. Butt, what the hell is a few days compared to loss of most of your life to debilitating disease? Oral B12 (methylator) helped some people with blood brain barrier problems leading to anxiety but you have to know if you are an under or overmethylator to save yourself the grief of it not working or making things worse. Where’s Monty Python when you need the Holy Handgrenade of Antioch to get things done?

  5. Kathy June 11, 2016 / 9:36 am

    Lisa,
    Thank you once again for “speaking ” the unspeakable. I was diagnosed with MCAS 2012, and have have been sick probably since infancy. I was and am a small person, and I compensated by being doing what everyone else did faster and harder. I was always afraid but the monsters in my life were real. As a teen and adult I became fearless and fought for those who had no voice. I was an adrenaline junky and loved the thrill of faster, higher, etc. I felt invincible. But there was always the dark shadow of something terribly awry in my body. As I became progressively sicker, my world began to shrink. Now at age 56, I find my world had become so small that I can hardly believe it is mine.
    Thank you for reminding me fear is part of this disease. I have really been struggling with this and felt a deep sense of shame; as if my fear was a betrayal of my very self. Who wouldn’t be afraid living with such an unpredictable disease?
    Thank you for your willingness to share. It helps so much.
    Kathy

  6. becca June 11, 2016 / 11:02 am

    I even learn from your “Feelings” posts. How does anaphylaxis occur at night with, presumably, no new trigger?
    How long after ingestion can a food item present a challenge?
    How can we tell what we’re allergic to if the reactions are divided?

    • Lisa Klimas June 11, 2016 / 11:49 am

      Histamine spikes overnight so for people like us who react based upon histamine level, that is a possibility. Reactions can also delayed or biphasic. It can take a few days to react to food, in theory as long as it’s in the GI tract. It’s very hard to know. That’s why it is hard for us to avoid triggers sometimes.

  7. Angel June 11, 2016 / 7:16 pm

    I had very strong fears of suffering anaphylaxis in my sleep when I was first diagnosed. I slept on my couch while my husband studied. I left the tv on. Sometimesvi would find my husband staring at me to see if I was breathing. Recently, I had a slight asthma attack while I was sleeping. Thanlfullt, I bolted upright and knew what to do. I have had delayed reactions before but not after my diagnosis. My daughter does not have mcas but we sleep with a baby monitor because we are heavy sleepers and she has had a few reactions. This disease is scary. I am always wary when my tongue remains slightly swollen or I eat at a restaurant and have to start downing meds because of cross contamination. I am petrified of surgery and dental work. I am allergic to every painkiller around except Fentanyl. And I was starting to develop the itch after 24 hours. This disease is just plain scary.

  8. Michelle Dellene June 11, 2016 / 7:17 pm

    My not-so-irrational fear lately has been death by wasp sting, to the point of asking my immunologist about venom immunotherapy because I have a history of anaphylaxis and wasp stings. Then I read Dr. Afrin thinks that mast cell disease may cause spontaneous human combustion. Thanks, Dr. A for giving us another thing to worry about!

  9. Jeanice Barcelo June 13, 2016 / 12:08 am

    FYI – Solitary Mastocytoma Arising at a Hepatitis B Vaccination Site

    https://www.researchgate.net/publication/13336896_Solitary_Mastocytoma_Arising_at_a_Hepatitis_B_Vaccination_Site

    Solitary Mastocytoma Arising at a Hepatitis B Vaccination Site
    Article in Cutis; cutaneous medicine for the practitioner 63(1):37-40
    · January 1999 with 32 Reads
    Abstract
    On the first day of life, a healthy infant was given a recombinant
    hepatitis B vaccine. Over the following year, a 3 by 4.5 cm,
    well-defined, erythematous patch with an overlying white, reticulated,
    smaller plaque gradually appeared on her thigh at the vaccination
    site. Darier’s sign was elicited at the site. Examination of a biopsy
    specimen showed an upper dermal mast cell infiltrate. This is the
    first reported case of a solitary mastocytoma appearing in a
    vaccination site.

    http://www.dogbreedinfo.com/care/mastcelltumor.htm

    Mast cells originate from the bone marrow and can be found throughout
    the body’s connective tissue. They are normal components of the immune
    system, but can form into growths called mast cell tumorsn (MCT).
    About 20% of tumors in dogs are mast cell tumors, a type of tumor
    consisting of mast cells. Some mast cell tumors are malignant cancer,
    but some are benign. The tumors release high levels of histamine into
    the body. Mast cells also respond to tissue trauma. If you push on the
    tumor sight you can actually aggravate the tumor causing it to spore
    out and spread in other parts of the body. Mast cell granules contain
    histamine, heparin, platelet-activating factor, and other substances.
    The chemicals the mast cell releases into the body can cause itching,
    gastric ulcers, flatulence, allergic reactions, loss of appetite,
    vomiting, diarrhea, anemia and internal bleeding.
    There are four stages of mast cell tumors.

    Stage 1 – refers to a single tumor with clean margins and no signs of
    spreading. Outlook and recovery is good.

    Stage 2 – refers to one or more tumors with or without regional lymph
    node involvement. Outlook and recovery is good.

    Stage 3 – refers to progressively greater signs of invasion, perhaps
    to local lymph nodes, demonstrating dirty margins, or presenting as
    multiple tumors. The prognosis is iffy.
    Stage 4 – refers to systemic metastasis to an organ or wide spread
    mast cell presence in the blood. The prognosis is grave.
    For a dog who is prone to these types of tumors a poor diet, stress,
    illness and vaccinations can bring them on. When a dog is vaccinated a
    tumor will sometimes appear at the sight of the injection or on other
    places of the body. The dog’s body often cannot handle what is in the
    vaccine. There have been cases of mast cell flare ups from the rabies
    vaccine, Bordetella vaccine (Kennel Cough) and flu vaccines as the
    dog’s body cannot handle the stress. Some say mast cell tumors are
    caused by over vaccinating, while others claim vaccinating only causes
    the tumors if your dog already has a compromised immune system. What
    we do know is dogs who do get mast cell tumors have some form of
    compromised immune system. The argument is if the immune system
    weakness is the cause or the effect. It is possible that both can be
    correct depending on the dog, the amount of vaccinations given and the
    age they were administered. If your dog is prone to mast cell tumors
    ask your vet about getting a rabies medical waiver.

    • Lisa Klimas June 13, 2016 / 12:30 am

      Thanks for the reference, I will be sure to mention this in an upcoming post on mast cell tumors.

      Please keep in mind that the staging described here for dogs is not analogous to humans. In humans, a benign tumor with no malignant features is called a mastocytoma. When it has malignant features, it is a mast cell sarcoma, which converts quickly to mast cell leukemia.

  10. cornelia June 13, 2016 / 4:31 pm

    lisa that was so beautifully written!

  11. Abby June 22, 2016 / 3:30 pm

    You wrote in this blog entry that you walk and do yoga. Before you were diagnosed and were sleeping days away and having severe nightsweats were you able to do all that? Walk/yoga

    • Lisa Klimas June 22, 2016 / 11:40 pm

      Yes and no. I have always walked a lot, 2-3 miles most days. In 2010, I started having severe reactions and would not be able to walk or exercise for 1-2 weeks. On good weeks, I would do maybe an hour of yoga. But in late 2011-spring 2012, I was too sick to do much of anything. Couldn’t walk far and no stamina for anything else. In late 2012, I had been on mast cell meds for several months and I was out of work so I had more time to walk and exercise. At that point, I started doing 5-6 hours of vinyasa/ashtanga yoga a week. In 2013-2015, I walked a lot and did yoga maybe 3-4 hours a week but couldn’t do more than 20-30 minutes at a time. After my surgery in 2015, I did a reconditioning program that helped with my stamina in a huge way. I was able to go jogging last fall, a huge deal for me. I do 5-6 hours a week of vinyasa/ashtanga yoga at home and probably walk 20 miles a week between commuting, walking the dogs and just getting around town.

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