First Dose of Johnson & Johnson on 05/23/21 Lot #21C10-05
Dublin, Ireland
50 yrs old
Q: What was your life like before you got the vaccine?
Normal! Busy mother to three. Good circle of friends etc. walk 7/10k a day. Previous diagnosis of pots syndrome in 2005. Lived normally and managed pots very well. Was excited and looking forward to traveling to Italy for my 50th birthday with my husband.
Q: What was your reaction, symptoms, & timeline?
Immediately after I had tingling in my throat and mouth. I took an antihistamine and was ok. The following day I felt disconnected and dizzy but assumed it was a typical short lived side effect of my immune system doing it’s job.
As the days progressed I started experiencing some pins and needles in my legs and feet and very severe headaches. My blood pressure was really high and I was tachycardic. If I tried walking I was dizzy and had vertigo. I had strange internal tremors. The pins and needles spread to my spine, hands and head. The headaches become constant and I felt like my head was in a vice grip. Constant nausea and fatigue.
Q: What is your life like now, after getting the vaccine?
Scary is my honest answer. I have had nights where I genuinely wondered would I wake up the next day. The anxiety around the physical symptoms has been difficult. Since taking the vaccine my life was put on hold, no traveling, no social life. I spent my birthday in bed and wondered should I head to A&E. I can no longer drive other than very local as I feel faint on longer journeys. Most days consist of just getting through.
Over time my symptoms have improved. My headaches are not as severe and less frequent. My blood pressure has stabilized and my heart rate has improved. I can walk again, although not the distances I used to.
I still have constant pins and needles in feet and legs and occasionally hands, spine and head. This is my remaining issue and is incredibly uncomfortable. Can range from burning hot sensations to Ice cold feelings.
Q: Share your experience with any medical care and any diagnoses you have received:
MRI head was reported as “normal” Consultant immunologist blood tests showed IGG kappa in gamma region on immunofixation of 1.75. She dismissed it as sensitive test/accidental find.
Cardiologist gave me beta blocker for BP/HR but side effects were awful! I’m awaiting cardiac scans still and have been sent an appointment review for January 2023! Cardiologist suggested I had long Covid type symptoms that should “resolve eventually “.
Both immunologist,cardiologist and my GP suggested I see a neurologist for possible small fiber neuropathy symptoms.
Neurologist appointments are really hard to get but I was lucky to get in to see one in December (2021).
I was seen in clinic by a nurse who was very kind and said she had seen some of their migraine patients report a worsening of symptoms after vaccine. When I got in to see the neurologist and discussed my symptoms and how the started after vaccine he dismissed SFN, said vaccines don’t cause it, did no testing. Told me I had migraines and everything else was related to my central nervous system and my existing POTS syndrome. He gave a four leaflets with drug recommendations that I could try “if I wanted to”.. he said I should take a booster vaccine and could “try another brand” and see how that goes. His parting comment to me was “you have a choice her if some mild side effects from vaccine or possible death from Covid”. I left his clinic completely deflated and defeated.
Q: Was your reaction reported, and what was the response?
I self reported to HPRA and they responded twice for updates but have heard nothing since.
Q: Is there anything that has helped, and have your symptoms improved?
I believe time has helped the most but also I felt my headaches really improved with the introduction of high dose turmeric and low dose SSRI as prescribed by my GP. Things have slowly improved apart from the neuropathy. I still suffer bad days, occasional headaches and fatigue. My life is slower now and I can’t push myself too far without problems recurring.
Q: What do you wish others knew?
I wish others knew how scary it is, how utterly isolating it has been, predominantly as a result of not being believed or helped by medical professionals. Every symptom I have had has been put down to my Dysautonomia, not just by Drs but also friends and family. I know my own body and baseline and this is not it. I feel broken. Finding others like me in support groups/websites has validated my issues and for that I am extremely grateful. I miss me, I miss my life, I miss joy and peace but I still have and am hanging on to hope. I will never let go of hope…
REAL NOT RARE DISCLAIMER:
Real Not Rare does not diagnose medical conditions, offer treatment advice, treat illnesses, or prescribe medicine or drugs. Anything contained on this website or conveyed in the blog stories or groups, is not substitute for adequate medical care, diagnosis, and/or treatment from a medical doctor. It is strongly recommended that prior to acting upon any information gleaned via Real Not Rare or their representatives, you at all times first consult a physician. The views and opinions expressed are those of the individual being interviewed in each story, and do not necessarily reflect the position of Real, Not Rare as a whole.
