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Hello J, similar experience here. Got Covid before there were antibody tests so could not “prove” I’d had Covid, and the local Long Covid clinic would not admit me without a positive antibody test. After years of mysterious symptoms (memory issues, amnesia, fatigue, nerve pain, lack of appetite, 50 pound weight loss, change in smell) my doctors were stumped. Brain MRIs came back normal. I thought I was dying and begged my doctor to see if he could get me admitted to the LC clinic. He was able to get me admitted. About 3 months into the LC clinic, I had a seizure and was diagnosed with Epilepsy. Covid messes with the hypothalamus and the vagus nerve as you mentioned, and can cause seizures. I recently had a sleep study done which confirmed focal seizures and epilepsy. There seems to be a disconnect between primary care physicians and doctors that work in hospitals. My physician and my neurologist seem unaware of the Covid-seizure connection, but the sleep study MD confirmed hospitals have been seeing Covid-related seizures, going back to late 2019, before the first “official” case in early 2020. Early studies suggest 1 in 100 people who get Covid may develop seizures within 6 months of infection. Seizures can cause nausea and may explain some of your symptoms.
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Thankyou for resonding.I am so sorry that you are going through this as well.When this all started I had a few panic attacks.I have never had a panic attack in my life.I also could not swallow which I believe was because of vagus nerve damage.My Primary thought to put me on steroids which gave me the ability to eat again.I could not cough,yawn or sneeze for months.It is finally coming back,but it is still not normal because of the nerve damage.I have lost strength in my face to smile,laugh,talk,etc.I can barely walk because of the lack of strength in the trunk of my body especially my diaphram/sternum and pelvis.Even my hair changed.I use to have long nice hair and I had to cut it because it basically fused together.Now my hair looks like I stuck my finger in an electric socket.It has not grown in over two years and goes out instead of down.It is almost like my DNA was changed.I have had every test and every disease looked into.I was checked for Myasthenia Gravis and a bunch of other Neurological diseases as well as autoimmune and nothing.Brain clear,GI fine,Spine normal wear and tear for my age.High Epstein Barr titters at the beginning of this probably because covid reactivated that.The only thing found in my blood tests are low carbon dioxide in blood,low deha sulfate and low testosterone.I did have the anemia from heavy periods and was going through perimenopause.I was still very healthy and in my 40s.Exercised everyday and did not smoke or drink.The only medicine I have ever taken is synthroid and only 50 mg.The endricinologist raised it to 75 mg because my thryroud was a tiny bit off.At the beginning of this I was so skinny I really thought I was going to die.I am 5'11 and was barely 100 pounds and just could not eat.Now I have gained a massive amount of weight.I believe covid messed up my adrenal function.I got tested for Cushings and it was negative.I know low Deha can mean addisons disease,but you would lose a ton of weight with that.I have huge upper arms and legs.I wish I could find a long covid clinic that would just take me without proof.I know this has to be part of long covid.The Doctors are just not finding anything after 2 1/2 years,but it feels like I am slowly dying.It is just awful.I just told my mom that I can't even believe I am alive with the way I feel.Nothing is functioning like it should in my body.I am basically like a human vegetable,but all my tests are showing as normal.That is why it is impossible to get any help because the damage from covid must hide from conventional tests.It is so Frustrating.