Long post warning…
On Wednesday, 7-15-26, I had two episodes during the day that were quite unsettling. I completely lost my ability to comprehend or think clearly enough to describe what was happening to me. That was coupled with what I think was an anxiety attack. I wasn’t really panicking, but I felt unbelievably overwhelmed and anxious. There was nothing going on at the time to cause me to feel that way. In the past, I have had moments when my mind went blank, but they were seconds. These episodes lasted for minutes. Several minutes. By the time I went to bed that night, I had convinced myself that I was fine. It must have been a fume reaction or something random.
I woke up between 1:00 and 2:00 a.m. having another anxiety attack. My heart was pounding, and I didn’t feel good at all. I wasn’t sick, but my whole body just didn’t feel right. I grabbed my pulse ox, and, as I expected, my heart rate was all over the place. By about 3:30 I was feeling really really bad, and I couldn’t figure out what was making me feel like that. I was really concerned that I was going to pass out. It finally occurred to me to take my blood pressure. It was 213/165. By this time my heart rate was staying pretty consistent around 160. That’s when I decided to call for an ambulance. I don’t know how long I looked at my phone before I remembered how to use it, but I managed to make the call at 4:19 a.m.
The ambulance personnel were very nice, but a little impatient until I was able to make it clear that I was struggling with brain fog from AGS. I’m sure they thought I was on something. I couldn’t answer any of their questions without taking time to process the question thoroughly. Everything from how to spell my last name to when I was diagnosed with AGS (which I never did remember) seemed to take a ridiculous amount of time to comprehend and answer. I remember saying, “I’m not a genius, but I promise I’m a relatively smart person. This Alpha-gal brain fog is unreal.” I’m not sure how I even put that sentence together when I could barely give them my home address.
One of the things the EMT’s wanted to do was an EKG. I refused that because the last time I had an EKG I had a bad reaction to the adhesive on all of the little electrodes. My contact reactions are much worse now, so I was very concerned about getting worse while they were trying to help me get better. They communicated my concerns to the hospital.
I’m not sure what time I arrived at the hospital. I think it must have been about 4:45. I was really not feeling well at all. I was extremely weak and trying not to pass out. And I was in a position of having to self-advocate in an emergency room with between 4 and 6 people all doing different things. I could tell they were getting ready to set up an EKG, and I told them again about my concerns about reacting to the adhesive. They said they had to do an EKG because of my heart rate. I agreed. Meanwhile, they put a pulse ox on my left index finger, and a very nice nurse was trying to find a vein for an IV. There was also a doctor asking me questions that I couldn’t answer. At some point I weakly and sadly uttered, “Oh… so many stickers…” and an RN very sternly and loudly said, “You came to the emergency room with a heart problem. We can’t help you if we don’t do an EKG. I understand that you may be allergic to the stickers, but we are a hospital, and we are prepared to handle that.”
I wish my brain had been working better, because I really needed to remind her of that statement throughout the rest of my visit. No one had any idea if there was mammal in any of the medications they were giving me. When I asked, the answers I got were, “I don’t know.”, “I don’t know why there would be.”, and “No one has ever had a problem with it.” Thankfully, my daughter arrived after I had been there for about 45 minutes. I requested the names of everything they had used, and we looked everything up. The meds turned out to be safe, but not because the hospital personnel were knowledgeable or cautious.
While I was in the ER, I was having a contact reaction to something in spite of the Benadryl I was getting in the IV. My main initial contact reaction is shaking uncontrollably. I thought it was the electrodes, but my daughter saw that they had given me some type of wet wipes when I used the restroom before she got there. I never even thought about it. At this point I don’t know what brand they were, so I can’t verify that they were adding to my reaction, but I wouldn’t be surprised. On the plus side, I didn’t develop any rashes from the electrodes, and a little quick research showed that they may not have had mammal in the glue after all.
I don’t remember how long I was in the ER, but I think it was a little over 3 hours. When I left my BP and heart rate were perfectly normal, just like they always are when I am not reacting. All of my blood work came back good. Liver – fine. Kidneys – fine. Electrolytes – fine. Chest x-ray – fine. If I wasn’t so sick, I would be extremely healthy.
My daughter brought me home and watched over me while I slept off the Benadryl for most of the day. When I was awake we tried to figure out what on earth I was reacting to. I’ve been dealing with Alpha-gal for about 2 years now, and I have done, and continue to do, massive amounts of research. All of my products and foods are safe. I’m not a risk taker, so I don’t eat things that are questionable. The only thing that we can figure out is that the last tick bite (June 6th) reversed a lot of the healing I’ve done and I’m fume reactive again.
The next day I had a follow-up appointment with a cardiologist. All of my doctors have been very kind, but out of all of the doctors I have seen, he was the most knowledgeable about Alpha-gal. He offered me a pill form of the rescue med they use in the hospital, and he looked it up on Pill Clarity to be sure it was safe. He talked about the tests he wants done and the safety of each of them in regards to my contact reactions. He told me not to do anything that I was uncomfortable with. He even admitted there is a lot that doctors don’t know about Alpha-gal and he is aware of how reactions vary from person to person.
I have more appointments and tests coming up, but they aren’t looking for anything new. We all know what it is. We are just establishing a base to watch for any heart damage or other changes.
Meanwhile, I have reverted back to the person that stands in the middle of the kitchen trying to remember where the coffee cups are – and I don’t have any doors on my upper cabinets! This morning I was gluing something with a high temp glue gun and I stuck my finger right in the hot glue. Ouch. I have to read/listen to something at least 3 times before I can comprehend it. When I made my breakfast this morning I couldn’t remember how to set the timer on my phone. I set my phone timer for all kinds of things throughout the day, but my mind was completely blank. I took something out of the cabinet and set it on the counter by the stove, then went back to the cabinet to look for it again. I found it when I went to add it to my grocery list. And I’ve lost my shoes. I wore them to the cardiologist and haven’t seen them since. What on earth would I have done with my shoes?
I know that everyone has those moments when you walk into a room and have no idea why you are there. You go back to the room you came from and you remember. Then you complete whatever task you set out to do the first time. That’s not what this is. This is a mind that goes completely blank. I can’t go back to the room I came from because I don’t know what room I came from. I have never experienced anything like it. I will try to figure out how to explain it more in another post.
Meanwhile, thank you all for being a part of my journey.
Stay safe.
Bye for now.
~Cynthia