First Dose of Pfizer on 09/14/21 Lot #CW0167
Second Dose of Pfizer on 10/07/21 Lot #FF2589
Delaware
Q: What was your life like before you got the vaccine?
My life was really good. I was working 12 hour shifts as an RN and had recently returned to a department I really like. I was always on the go, doing things with my kids, friends, or in the community. My husband and I had just celebrated our 25th wedding anniversary and we had just moved into a beautiful new home. We had just gotten our youngest settled at college and since he is on the swim team, we were looking forward to traveling to meets to watch him swim, and explore the surrounding areas. We were also talking about the extra time we'd have now that our children were grown and had discussed taking ballroom dance lessons (something we had done, and enjoyed early in our marriage, before kids). Basically just a normal 46 year old, no health issues, looking forward to all of the positive new changes ahead.
Q: What was your reaction, symptoms, & timeline?
Exactly one week after my first dose I had a tremendous headache and I felt very off balance/dizzy. The vertigo was intense but mostly resolved after about 24 hours. I did notice it intermittently in the following weeks, if I moved my head too quickly or changed positions quickly. The headache also resolved after about 48 hours. I remember feeling "off" and was hesitant going into my second dose. I mentioned it to the pharmacist before getting my second dose and he said just drink a lot of water.
I received my second dose on 10/7/21, in the evening. The following morning I woke up with a horrible headache and just felt awful in general. I know this is a normal side effect, so I just rested, took Tylenol, slept on and off. I was scheduled to work 7pm-7am on the 8th, but ended up calling out because of how terrible I was feeling. The headache continued and I began feeling very "foggy". Like my head was stuck in a cloud, and I just didn't feel like myself. I felt very fatigued, and slept a lot over the next few days. I was scheduled to work overnight on the 10th of Oct as well, and I forced myself to go to work that night. I felt awful, but swore I could get through it. That night is when I noticed that my balance was off again. By morning I was running into things, and I had to hold onto things to walk. I felt so off balance and foggy it was as if I was drunk. The headache remained. I called my husband to pick me up from work, because I felt so disoriented, I didn't feel safe to drive. 10/14 my symptoms had intensified to the point I was worried I was having a stroke. I couldn't concentrate at all, I was dropping things, my balance was still very off, and my headache was almost unbearable. I went to the ER and ultimately was admitted to the hospital for 4 days. They did a CT scan, and MRI, bloodwork, and EKG and honestly I'm not even sure what else. Once all tests came back negative for a stroke, the focus became controlling my "migraine." They did mention that I was anemic, with hemoglobin 9.8, which I found odd, as I donate blood every 8 weeks, and my hgb is usually around 16. I was started on iron supplements. While in the hospital the dizziness and brain fog intensified. It got to the point that the entire room felt like it was moving even just sitting in bed. I had to have someone walk me back and forth to the bathroom. I felt like I had no idea what was going on. Ultimately, I was told there was nothing more they could do. They sent me home to follow up with a neurologist. About two days after getting home I woke up with very blurred vision. Everything seemed distorted. All of the other symptoms remained as well, and are still there today.
Q: What is your life like now, after getting the vaccine?
Sort of sad, really. I can't work. I can't drive. I'm unable to walk outside my home without having someone guide me. My balance is completely off and I often have the sensation that I'm going to fall. My vision is blurry and distorted making everything appear like it's moving or wavy. I was hospitalized for my son's first college swim meet. I mention this because it's a very big deal to me. I have worked my entire career around my children's lives, and never miss anything. I have since been able to attend a meet with the help of my husband and the experience was completely overwhelming and exhausting. The movement of the pool intensified all of my symptoms. I have had a headache every single day since 10/8/21. It never goes away. On days of therapy the pain level increases significantly. I usually spend the rest of the day sleeping and trying to recover after my 45 minutes of therapy. Thankfully, with time I have learned to navigate our home pretty well, and I can confidently get around inside the house as long as it's well lit. If it is dark, I feel as if I'm blind. I feel overall, like I improved some, because when I first got home from the hospital I couldn't even get to the bathroom by myself. I didn't leave my room for the first week. Also, I couldn't watch tv, read, or be on the computer for more than about 30 minutes in the beginning, but that time limit is increasing slowly. I do sort of feel like I've hit a plateau in my recovery though, as I've not seen much change in the past 3 weeks. I'm not myself. I'm dependent on people to get me to therapy, to the doctors, anywhere I need to go. I'm doing my best to remain positive, but I'm sad and frustrated - longing for my old life and what was supposed to be. Travel, my new job, decorating our new home - all on hold. And - obviously, we aren't dancing. :-( I find myself conflicted because I'm incredibly thankful that I'm not as sick as some whose stories I've read, but as time goes on, I keep thinking - I thought I'd be better by now, and the fact that I'm not starts to worry me about when and if I will get better.
Q: Share your experience with any medical care and any diagnoses you have received:
I have seen a neurologist - who only addressed the headache, and promptly discharged me saying that she thinks it's stress related. My PCP has acknowledged that this is a vaccine related reaction and has been instrumental in attempting to help. I have seen an eye specialist and was told that I have central serous retinopathy (which is essentially like a blister on your retina and the fluid causes distorted/blurred vision - usually resolves on its own and takes anywhere from 6 weeks to 6 months.) The eye doctor told me the cause is most often stress. He also said "literally millions of people have gotten the vaccine and I haven't heard of anyone having a reaction like this." I'm currently going to vestibular therapy twice a week which works on balance. After two months of waiting I was finally able to see an ENT who ordered vestibular testing - which I had done yesterday. They said that it definitely shows that I have vestibular nerve damage on the left (which happens to be the same side I had both vaccines in and it's also my left eye that has the retinopathy), but I will not know the full extent of the damage until the doctor reviews the report, or if there is anything that can be done to help. He also referred me to a headache specialist, awaiting the appointment.
Q: Was your reaction reported, and what was the response?
I reported to the VAERS website. I got an email saying they received my report. Nothing further.
Q: Is there anything that has helped, and have your symptoms improved?
People who have reached out letting me know I am not alone, and that I'm not crazy has helped. Reading others stories. My family and friends checking in and their support has helped so much - mentally.
Physically, not much has helped. I think vestibular therapy may be helping slightly, but it's hard to tell as the vision affects the balance as well. Excedrin migraine and Tylenol help manage the headaches. Taking things slowly and not having big expectations for myself help with the brain fog. Lots of naps help the fatigue. I am taking several vitamins now, including iron, but have no idea if it has helped as I have not yet had repeat blood work.
Q: What do you wish others knew?
I just wish that the medical community was more willing to admit and accept that sadly there are going to be vaccine reactions. It's unreasonable to think otherwise. I wish that doctors would stop acting as if reactions don't exist and dismiss people with such lame excuses as "stress or panic attacks." Statements such as "I've never heard of such a reaction" or "Do you know of other people who have had these symptoms from the vaccine?" are not helpful. I wish that the vaccine injured were getting the same respect, sympathy, and help as those who have Covid, or any other illness. I also feel that it's important for people to know that there seems to be a major disconnect in the reporting of adverse reactions. It's taboo to speak out about this particular vaccine reaction, which in itself is a major concern. I wish there was some response from VAERS or other reporting systems letting the injured know that we are being heard and that they believe us, and that research is being done to work on answers! I wish the concentration wasn't on when the symptoms started, resulting in being dismissed, but rather how the symptoms can be helped!!!
I wish all of the people who are so pro vaccine knew that it is ruining peoples lives. I wish that they knew how many people have reached out to me to tell me their stories since I started telling mine. I wish more people would recognize that reactions are not as rare as the media wants everyone to believe. I wish people would realize there's more than one side to the story and how frequently our side (the injured) is being silenced!
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