Oral Shingles--Four Week and Counting Nightmare
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Wanted to share my experience to see if anyone else has had something similar and hopefully if I document my horrible ordeal this might help someone else.
I'm 51 year old female, no health issues or stressful events recently:
-Day 1: Started with 2-3 days of tingling burning sensation in my mouth, metallic taste, I thought I burned my mouth or tongue was irritated by toothpaste or something else.
-Day 3: Developed painful sores on one side of tongue and left side of tonsil and back of throat
-Day 4: Extremely painful to swallow, not able to eat or drink, went to Urgent Care. Tested negative for Strep; they mis-diagnosed me with a viral sore throat, gave me steroid pack and said I would be feeling better in 48 hours.
-Day 6: Still could not eat or drink. Shooting pain in left ear, and from left jaw up side of face to scalp. New blisters on center/left of roof of mouth. Went to primary care. Asked about shingles since everything occured on left side. They said, no, you cant get shingles in your throat. Diagnosed me with viral infection and canker sores, possible caused by Coxsackie virus. I asked for anti-virals, and they said they didn't work for what I had. They said the shooting pain was due to swollen glands pressing on the nerve and that this was common. I asked for pain medication and they prescribed me Lidocaine to numb the pain so I could eat, and said I could take 800mg of Motrin. This does NOT work!
-Week 2: Suffered horribly and just waited for the 10 days-2 weeks to be over thinking that is how long the viral infection should last. Lost 8 lbs, became very weak, pain bad at night, trouble sleeping.
-Day 12: Blisters started to go away, was coughing up yellow stuff, thought I was getting better, but very weak and still had shooting pain in ear, face and head. Could not taste food, or tolerate anything but liquids or soft bland food.
-Day 16: Became nauseas and developed hiccups that would last for hours for three days. Could not eat without gagging and throwing up. Developed airway coughing fits after trying to eat or drink.
-Day 18: Back at Urgent Care: Had lost 10+ pounds, very weak and dehydrated, was given IV fluids, and they took bloodwork to see if there was underlying cause. Bloodwork came back "normal". Extreme pain in throat and ear, conjunctivitis in left eye, thrush on tongue, shooting pain in head, extreme fatigue. Still diagnosed with a viral throat infection.
-Day 20: Went to ENT. They did a Laryngoscopy. Ear and throat looked "normal". Based on all of my symptoms and continued pain, was finally diagnosed with shingles. Put on anti-virals even though it was probably way too late for them to be effective.
-Day 28: Went back to primary care to get nerve block Gabapentin.
-Now (Day 32): Developed balance issues--walk, lean and even drive to the left. Earache. A lot of throat pain each evening and nighttime. Can eat better, but sometimes develop searing pain on tongue or in throat on left side after eating. Nagging throat cough. Extremely fatigued. Finally went back to work, but not myself yet.
-No way of telling how much longer this will last....
0 likes, 18 replies
megber amyp
Edited
Wow. I started reading this and thought I had written it. Your story is exactly mine over the past month. Tell me it gets better with time!!
cindy32853 amyp
Edited
hi 47 years old.
day one- sore throat
day 2- liquids tasted metallic metallic, by nighttime food burned and tasted like acid all liquids, except warm liquid burned and was spicy. left side was the worst.
day 3- only was drinking, warmed hot clear liquid very diluted broth still tasted overly salty baking soda like. gargling, baking soda, salt, mouthwash, in with coconut oil concentrating on the back of my throat. Actually stung. Earache pain on left side and neck. I went to local Beacon MedPoint starting to get scared and worried. Dr. dismissed it and quickly swabbed for strep and Covid. Both came back negative went home with no medication he said hang in there. Barely looked in my throat yet I had looked in my own mouth prior and saw the raised red sores on the back of my tongue, the white yuck spots on the left side and left back of my throat and tongue . Directly drove to my retired father-in-law, who is a doctor and he suspect an oral thrush possibly shingles and got me on the antiviral anti-fungal and prednisone. wanted me to get in w my Beacon DO next day for cultures and labs.
night time extremely painful to try to sleep. Pulsating pain earache in the channel down my neck, disgusting acid like dripping from the left side in the back of my throat causing over salivation extremely extremely painful.
day 4- visit in my Do.. I could tell this was not going to be a good visit because he was already perplexed as i was describing my symptoms .. He did run strep, mono and Covid again, which came back negative. I had to beg him for cultures to test the white spots which did come back as yeast, but he said it wasn’t the right kind of yeast for thrush. I didn’t tell him initially the medicine I was on because I wanted to see his conclusions. His course of action was only amoxicillin. And then oral lidocaine. . I then disclosed I was put on the three other medication‘s because of the symptoms. He didn’t think they were necessary and felt the amoxicillin should take away my ear infection within a day.
day 5 - ear pain got worse to the touch where I could not even lay on it, moving into my head where it was hurtful to touch. Still only able to consume, hot mostly clear liquids.. bumps seem to going down a tiny bit. but on roof of my mouth now.
day 6-8 kind of a blurr of pain, getting depressed, by end if day 8 mouth soreness had gone done enough to where I am trying to transition to cold.peior to that it was like i was pouring acid in my mouth. now It was tolerable. So I was able to add frozen avocado, ice, coconut, milk, smoothie to my diet. still prefer hot water and honey.
day 9 back to DO. - he still was teetering on if it is hand foot and mouth. I again begged for blood work and I wanted antibodies done. With some resistance, he finally put the orders in. Again left with no other medication..
day 10 - called the doctors office back pretty much yelling at the nurses to do something. I needed a new referral wanted to go to an ENT was not getting any better. Doctor prescribed closazpan . ENT office called. They said it was not registered as an emergency and they could not get me in until October. Complete horse hunkle. Completely feeling dismissed and not taken seriously and clearly they did not know what they were doing. Ended up calling my own ENT. I have a sooner appointment now..
day 13- meanwhile waiting... antibodies test came back positive for shingles. Other tests or -8 vials of blood later and nutrition levels were fine but gave me no specific information. Call from doctor office was cold no compassion or asking how i was doing just said i should be feeling better by now. i literally laughed in their face and clearly they had no compassion or understanding the severity. I again explained my ongoing symptoms, weight loss, head pain, mouth soreness etc. I could not believe that they not push through an ENT appointment and take it seriously. I could have gotten an ear drop to help numb nerves..
day 20.- pain in the ear and the head. Still there’s random kind of electrical pulses. Pain in the throat and tongue are better but I still there have kind of a swollen throat feeling like I could choke on my food. The left side of my tongue still feels like it’s healing from a bad bite. . I have yet to get back to work because of fatigue and now the new coughing and head pain.. waiting on ENT this week.