My Battle with Histamine Intolerance

Histamine Intolerance
A medical mystery article.
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I have always been sick, for as long as I can remember. It all started when I was 16 and I unexpectedly found myself pregnant. I ended up miscarrying, and it seems as if all my problems began after I lost the baby. I went through a period of depression as I grieved the loss of my unborn child. Sure, I was just a child myself, but I had lost a part of myself when I lost my baby and regardless of my age it was painful.

During the grieving period, I experienced a strange “brain fog” that caused me to feel out-of-sorts, lack mental clarity and experience difficulty with my memory. When I tried to describe the fog to others, they thought I was crazy. I suppose in a way I thought I was crazy, too.

The depression and brain fog disappeared after a few months and I thought I was cured. However, I was so wrong. While the depression was gone, the brain fog returned with a vengeance. By the time I was 19, I was happy and my life was on track, but the brain fog became a constant occurrence in my life. Nothing I did to get rid of it worked, and in fact, some things made it worse. Over the years I realized that eating certain foods, feeling stressed-out and taking most supplements increased the severity of the fog. Sometimes it becomes so severe that I felt drunk or like I have taken a drug of some sort.

The brain fog has always made me feel dumb or stupid, because it seems as if others can see right through me and see the mind-numbing fog that surrounds me. It’s like a plague of some sort. The brain fog steals my life away and causes me to feel negative and depressed. I notice on “good” days when the fog is at its lowest, that I feel positive and happy. However, on “bad” days, I feel really negative and I find myself obsessing about undesirable topics like growing old and dying. I’m a lot more irritable when the fog is at its worst, and I hate being a grouch. I think my husband has gotten used to it, though, and he is always very supportive and encouraging.

In the beginning, doctors always blew me off when I tried to describe the brain fog to them, and stated I was simply depressed and gave me antidepressants. I know that the way I described the brain fog to the doctors that it sounded strangely similar to depression, but I knew there was a difference. The medications they prescribed never worked, and many of them only intensified the fog. I learned to live with the fog, but the older I got, the worse it became. I also started to develop a host of additional symptoms, as well. Joint/muscle pain, headaches, numbness in my extremities, rashes all over my body, sun sensitivity and so many more that it would take me forever to name them all. There isn’t a part of my body that isn’t affected by what plagues me.

Even holistic doctors were unable to help. I went to chiropractors, naturopaths and other alternative doctors. An ex-boyfriend’s mom even paid for me to go to “healing hypnosis,” but nothing worked. It got to the point that I was so tired of getting my hopes up whenever a practitioner would tell me: “I know what your problem is and I guarantee you’ll get better.” That happened so many times that I have lost count. One naturopath in Michigan who promised I would get better in a month even refunded me for one visit. He felt so bad for telling me I would definitely get better taking the high doses of vitamin C that he recommended for me.

Over the years I have been diagnosed with so many different conditions that it isn’t funny. I had two doctors to argue, one saying I had lupus while another said I had rheumatoid arthritis. Another doctor, a supposed “renowned” neurologist in Knoxville, TN, told me that I had cervical dystonia. She explained that it is a spastic condition that causes the muscles in the neck to contract uncontrollably. I have to admit, I do have neck muscle spasms, but I knew that my condition was something different than the diagnosis she gave me. She tried to get me to begin the expensive treatments that would entail injecting Botox directly into my head and neck. Not only did that sound painful, but it also sounded like it would worsen my fog. Needless to say, I never went back to this doctor.

I traveled to Pennsylvania in 2009 to see a Lyme disease specialist. I had read a great deal about chronic Lyme disease and felt that it could explain all of my symptoms. Although this doctor was very nice, caring and attentive, and he did test me for Lyme disease, in addition to numerous other viruses and conditions, he diagnosed me with severe allergies and prescribed me Allegra-D! I was very disappointed, because we had paid for a rental car and hotel rooms for nothing. Also, my husband took time off work to drive all that way there for me to be prescribed a common allergy medicine! I could have gone to an allergist ten minutes from my house!

Even the Mayo Clinic couldn’t give me any definitive answers, and boy was I disappointed. I was there for two weeks total, on two different occasions, and although we enjoyed the Jacksonville, Florida area (we went in April and July), I was truly disappointed with my experience. My primary doctor was rude and I was diagnosed with “an autoimmunity” and pseudo-tumor cerebri, a condition in which excess spinal fluid causes extreme headaches and other symptoms of a tumor although no real tumor is present. They prescribed Topamax to reduce the severity and frequency of the headaches (I was having severe headaches) and reduce my weight. I was nearly 300 pounds at the time, although I have since lost 100 lbs. The Topamax caused me to become suicidal, so I had to wean myself of it.

After 25+ years of suffering and going from doctor after doctor only to receive inaccurate diagnoses and treatments that made me feel worse, I finally discovered what has been causing me to be so sick, all on my own: histamine intolerance.

I had never heard of histamine intolerance before. Sure, I’ve always known that histamine is a chemical that the body releases in response to the body encountering an allergen. But histamine intolerance? The more I learned about histamine intolerance, the more I realized that it described what I had experienced for so many years.

Unfortunately, most doctors aren’t familiar with histamine intolerance. I found out about its existence by performing online research. I came across numerous blogs, forums and university websites that offered information about this condition. Evidently, numerous people just like myself have been suffering with this mysterious illness for years and couldn’t find a doctor to properly diagnose them.

So how do you cure histamine intolerance? Unfortunately, there is no cure for histamine intolerance, only treatment. However, finding a treatment that is effective is a challenge. The main treatment is to follow a low histamine diet. This is tricky, because low histamine for one person may not be considered low histamine for another. Sure there are foods that are known for being high in histamine, but there are also other foods that aren’t necessarily high in histamine but they’re considered histamine antagonizers, which really makes things complicated. Also, each person has his or her personal threshold of how much histamine they can tolerate before they begin to experience worsened symptoms.

When I first learned about histamine intolerance, I was in denial. Although I believed that I very well suffered from this condition, I wasn’t ready to give up the foods that I loved to eat. I kept telling myself that there had to be another way to get well. Food brought me comfort—or so I thought it did. I later realized that the food only brought me pain—and lots of it! I tried to find other reasons for my symptoms, but none of the treatments worked. I went on gluten free diets, conducted liver cleanses and flushes, underwent colonics, and more. I even ate all organic foods and drank health drinks like kombucha. After various disappointing attempts to get better in other ways, I finally had to face the fact: excess histamine was stealing my life away.

After accepting the fact that histamine intolerance was the source of my brain fog and all the other horrible symptoms, I began thinking about all the foods and drinks I had consumed while on gluten free and other cleansing programs that were supposedly healthy. I remember feeling sick immediately after drinking kombucha, and I later discovered that fermented and cultured foods/drinks are extremely high in histamine. No wonder I always felt like extremely hot all over my entire body and as if I had injected heroin whenever I drank this “health” drink.

Right now, I am only able to tolerate a few foods, which I am really getting tired of eating. I eat cabbage, chicken, turkey, beef, lettuce and potatoes. Sometimes I can tolerate a few other foods like garlic, maple syrup, almonds and pears, but not always. There are even some days when even the foods that I’m normally able to tolerate make me sick. It all depends on what’s going on in my life at the time, which dictates how it will affect the histamine levels. It is really hard to only be able to eat a few foods, especially when holidays and birthdays roll around. Most of the time, however, it’s not difficult to resist “bad” foods because I know how horrible I will feel if I eat them. I wish it were that easy to resist all the time, because sometimes it becomes extremely difficult. It certainly doesn’t make things easier when I’m the sole grocery shopper and meal preparer in my home.

I have been trying to find a supplement that would help improve my brain fog for years, and in the past, I had only found products that made me feel worse. Some of them worsened the brain fog, while others caused other undesirable symptoms to pop up. I have been lucky enough to find supplements that actually improve my brain fog instead of worsen it.

Stress really ramps things up and makes my body overproduce histamine. I also find that I am very sensitive to stress and I have a difficult time coping. Whenever I am stressed-out, upset or worried about something, I notice that the severity of the brain fog skyrockets. Luckily, I have discovered some amazing meditations as well as prayers online. These relaxing meditations and prayers work wonders for calming my body and eliminating stress. In the beginning, meditating didn’t work, as I would always fall asleep. However, with persistence and practice, I was able to stop falling asleep and actually derive some benefit from it.

I am not sure if I will ever find a cure for my histamine intolerance, but as long as I live, I will never stop trying. I don’t have horrible days every day, and I must even admit that I have a good day every now and then, which I savor. My research has enabled me to enjoy some reprieve from this horrible and mysterious illness, but I have faith that one day I will be able to eat anything I want or even wear my favorite perfume without experiencing the wide variety of debilitating symptoms that have plagued me for more than 26 years.

 

 

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