The last few weeks, I feel like I've been through another endless ordeal, where one thing after another goes wrong without a break.
It started July 20, when I woke up with what felt like a corneal abrasion. I have experience with this, because after my 2013 surgery, I woke up with 2 corneal abrasions. They were very severe, much more pain than the surgery had caused, pain that was untouched by my post-op opiates. This was clearly not that severe, but I would consider it a moderate corneal abrasion. Pain was a level 9 initially. I had severe burning, stinging, tearing, and nasal dripping. I was unable to keep the eye open for three days. The pain and the sinus leakage triggered a mast cell reaction and a migraine. It was horrible.
On July 21, I woke up with a milder corneal abrasion in my left eye with a pain level 7. So, I had severe burning and tearing in both eyes. It hurt to open my eyes or look around. Reading was impossible. So was watching TV and playing games on my iPad. My eyelids were swollen and red. The facial pain on the right side became worse with the barometric pressure dropping and storms outside, so I had a consistent pain level 8.
On July 22, there were more storms and low pressure, so the facial pain continued at the same level. I also still had some photophobia and difficulty opening my eyes.
On July 23, the pain was lessening, although my eyes were still burning. Unfortunately, I was exposed to perfume in a restaurant (we risked going out to celebrate our wedding anniversary). I developed left facial pain that started gradually and worsened overnight.
On July 24, the left facial pain was worsening (from the perfume exposure). I then was also exposed to hospital scents for a doctor's appointment that day. The left facial pain was an 8 by the time we got home. The pain persisted and worsened to a 9 by bedtime. I also had burning in my chest and face (with a temperature of 99.0-which is elevated from my baseline by a couple of degrees).
Over the next few days, there were no new exposures, but my whole body was in pain and exhausted from all of the reactions. And the facial pain persisted at a level 6-7. The eye burning continued, as well. I now believe I have developed chronic dry eyes. I have been using gel and drops many times each day and night.
On July 28, I had widespread body pain worse than usual. I also had nausea, facial burning, and lethargy. Then, in the afternoon, I developed a spell of extreme weakness and reduced consciousness.
On July 29, I decided to try my compounded Zantac (cornstarch in a gelatin capsule) in the afternoon. It was rough day for various reasons. I had another spell of reduced consciousness/weakness in the afternoon. Late night, I developed left facial pain and a headache. Very late at night, I was extremely emotional with hysterical sobbing until 3:00 AM (probably unrelated to the Zantac trial).
On July 30, I slept for four hours, then awoke with a pounding heart and was unable to sleep more. I had lingering facial pain.
On July 31, I slept okay, but developed a burning face and diarrhea. For some stupid reason, I decided to try another compounded Zantac, to try to confirm which symptoms were related to the Zantac.
On August 1, I only got 5 hours of sleep before waking with low blood pressure (88/55) and a pounding heart which lasted for hours, unable to sleep anymore. I then developed abdominal cramping, abdominal pain, bloating, and diarrhea. I also developed new hives on my chest and face.
On August 2, the Zantac reaction persisted. I had more abdominal cramping and diarrhea, plus burning face. I also had burning, stinging eyes that day, along with lack of balance. Then, I risked cheating on my diet and ate half a taco. It was just chicken in a tortilla, but I developed burning lips and chest, itching throat and ears. I had to take a Benadryl. The extra anti-histamine dried out my eyes too much, and I ended up with another eye injury.
On August 3, it was a stormy day, so I had head and facial pain and nausea from the storm. Unknowingly, I also started a new formulation of Omeprazole that day. (This has been a daily medication for a long time with no known side effects for me. But my pharmacy mailed a different manufacturer with a totally different list of ingredients, 15 new ingredients that were not in the previous formulation.) That day, I developed abdominal cramping and gas, and diarrhea again. It was a severe cramping sensation in my upper middle stomach area that lasted all day and night. There were also storms that day, so I had a throbbing temple going on as well.
On August 4, I was still unaware of the change in Omeprazole, so I took it again. I had continued abdominal pain all day and night. My stomach became very tender to the touch, unable to tolerate a bra or a waistband. My diet had become mostly saltines and rice.
On August 5, I finally realized that the Omeprazole was probably the new culprit. I had continued abdominal pain all day, but no diarrhea. Without Omeprazole, I developed severe heartburn, for which I took baking soda in water many times to reduce the acid. I also experienced severe bloating.
On August 6, the abdominal pain was less, but still persistent. I went back to my normal diet and requiring Miralax. I had a lot of bloating and was still very uncomfortable. I tried OTC Prilosec for the GERD, until my pharmacy can sort out getting me a new prescription for the previous manufacturer of Omeprazole.
On August 7, the upper middle abdominal pain has still persisted. The bloating and cramping have, too. The pharmacy is arranging for the safe Omeprazole to be ready tomorrow. I really hope everything will calm down after that.
My thoughts:
Diarrhea is a really unusual symptom for me, since I have chronic constipation (since age 18) requiring daily doses of Miralax. So, when I have diarrhea without Miralax, my system is really upset and irritated. I really hope my digestion can calm down soon. I had gotten to the point where I was pretty regular and digesting my food without too much trouble. But now, I'm back to major GI symptoms throughout the day. I would love to load up on probiotics, but I don't have one I can tolerate right now (although I just ordered a new one to try, when I'm up for trying something new).
After 3 weeks of almost constant reactions and symptoms much above my baseline, I am really ready for a break. I desperately want to avoid all triggers and give my body a rest. I won't be trying anything new this week.
This means I still have a few medicine trials to get through before my next immunology appointment. I still need to try the Zantac again, as well as the Ketotifen, but without the capsule. There is a good chance I am reacting to the gelatin capsule. The difficult thing about that is that you can react to some gelatin but not others. The same is true for cellulose as an ingredient in medicine. Some is from wood and some is from cotton. It's possible to tolerate some cellulose and not others. But none of it will be labeled, so it's almost impossible to sort out.
I am still very scared to try anything new, and I desperately hope I can get back to a comfortable baseline before I try it.
I haven't been able to wear my contacts in three weeks due to burning, stinging, sometimes tearing dry eyes. Unfortunately, my glasses give me a headache, so I really hate wearing them all day every day, and I am totally blind without them. I should probably try to see an ophthalmologist, but getting to appointments is difficult, they are always scented, and who knows if I would even tolerate the treatment. I will try to do this when things calm down (I have a long list of things to get done if things ever calm down!).
I have identified a few new triggers recently.
*First, I realized I was getting burning in my chest from drinking cold water or eating hot food. Everything needs to be room/body temperature, which is a real pain and generally less enjoyable.
*Then, I realized I was reacting to blueberries. After eating about 1/3 cup of blueberries, I would develop a spell of reduced consciousness/extreme weakness for at least an hour. These have been happening for a long time, but are still very scary spells for anyone around.
*Next, I replaced my blueberries, which were my only fruit, with grapes. For a while, they seemed to be pretty safe. Maybe, I got too bold in my portion size. But I started developing the same reaction to grapes. Now that I have removed all fruit from my diet, I am not having these reactions anymore. Which is a relief, but really sad. I love fruit! I am hoping finding the right medicine for my mast cells will help broaden my diet.
*Then, I developed a contact reaction to potatoes. Wilma has potatoes as a main component of her diet. Unfortunately, the process of peeling and chopping potatoes now triggers itchy hands and face.
*I know for certain that I am reacting to one of three ingredients in my compounded Zantac (Ranitidine, cornstarch, and gelatin) with a prolonged, multi-stage reaction. Trying it twice was painful, but did make it clear which symptoms it was causing.
*I now know I cannot tolerate a specific generic Omeprazole (Kremers Pharmaceuticals). I now think of my previous brand as the only safe brand, since it's impossible to sort out which ingredient is triggering me in a pill that contains 20+ ingredients. I have to find a way to make sure that my pharmacy only ever fills this manufacturer.
It's hard to see these new reactions develop, because I have to acknowledge that my mast cell disease is continuing to progress. Hopefully, some of the new compounded medications without the capsule will end up turning things around for me. Because it feels like nothing can stop this progression.
It was also really sad to be so symptomatic during my husband's vacation week (although it was really only a few days, since he was at a conference). It was rough on us to try to find something to do for our anniversary, and have that cause me so much pain in the end, too. We did make it to a beach. It was a handicap-accessible beach, so I was able to go in my wheelchair. I even went in the water a bit, although I lost circulation to my fingers, since the water was so cold. We didn't stay long, but at least we can say we got out.
I hope everyone is doing well. I'm still here. Still plugging along. I've had some really depressed days, but otherwise I'm managing. Just exhausted from the constant fight.
