The Face of Ramsay Hunt and Recovery
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- Опубликовано: 16 ноя 2018
- Fifteen days ago I woke with extreme ear pain. I can’t remember when the facial paralysis began. I don’t know if it came on slow, or while I was sleeping. I just remember trying to talk and my face wasn’t acting right. Unknown to me I now had the face of Ramsay Hunt Syndrome.
On Wednesday, November 14th, I was diagnosed; I do not have Bells Palsy, while it looks the same, what I have is a version that only impacts 5 in 100,000. It is called Ramsay Hunt Syndrome.
This video is to show my progression as I recover from the paralysis. There is very little information found online and limited details on why this happens. The more we share, the more we can learn from this disease. If you have any comments, tips, tricks, and treatments that have worked for you, or maybe some that haven't. Please leave a comment below, maybe it will help someone.
I am not a doctor and I do not play one on TV but below is the link to the Mayo Clinic regarding the disease. Ramsay Hunt Syndrome via the Mayo Clinic:
www.mayoclinic.org/diseases-c...
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Joy Newcomb creates and sells wanderlust-inspired photography and art. She shares stories of art, daily life, and small business endeavors. When she’s not working events she travels part-time with her little adventure dog, Sawyer.
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Struggling with Bells and your video is very helpful. ❤️
Your experience is so similar to mine with the wrong diagnosis in Urgent Care, followed by 2 weeks of increasing paralysis. In the mend. God bless. My ENT doc is a saint but i wasn't allowed to see him for 2 full weeks as my pcp told me that there were no appts available. ENT would have squeezed me in if anyone had bothered to call him. He ended up calling me after he was contacted by the sharp ER doc. So much precious time wasted. Im about 60% better i think.
Yes, I also was diagnosed wrong. Happy to hear you are recovering. ❤️🩹
I appreciate you posting this. My wife has had this for three weeks. It’s helpful to see other’s real life data like yourself. Im sorry you’re dealing with it. But again, thank you for posting as your experience is helpful for us to gauge the slow healing reality of this crazy illness. 🙏
Thank you! It is definitely a hard thing to handle, deal with and honestly have anyone understand what you are mentally and physically going through. Tell her to get plenty of rest. Sleep as much as.possible and try to cut back on stress.
I am also struggling with RHS. I read that Magnesium helps nerve growth and i also take Tumeric to reduce the swelling. And vitamin B as well as you and Vitamin D. Acupuncture really helped my eye to blink and close 95 percent. Also my tongue is no longer numb due to acupuncture. Also its good you are doing exercises but you should also do facial massages daily. Hope this helps. As i write this i am at 3,5 months. Good luck and i congratulate you on your courage to share your journey.
Thank you. I think Acupuncture really helped me also, however I only did 4 sessions - was too costly and insurance didn't cover it 😩
So sorry to hear that you’re dealing with this. I was diagnosed 1 1/2 years ago. I was only 37 years old. I developed RHS exactly 2 weeks after knee arthroscopy. Unfortunately, my paralysis never recovered. In March, I had facial reanimation surgery. It’s been a daily nightmare with pain, swelling, vertigo, etc, ever since day 1. I’ll be praying for your speedy recovery! It’s an emotional roller coaster.
linzb255 thank you so much for sharing! It’s definitely scary because you have no idea when it will end. I’m sorry you went through it as long as you have. Was the surgery helpful?
Awaken Your Joy Yes, it definitely helped! I am extremely grateful for it, however, I definitely don’t look like I used to, or talk like I used to. Are you seeing any improvements yet? It’s still very early, so don’t be discouraged! They told me in the ER that I would be better in about two weeks, LOL. So when 2 weeks passed, I was devastated! My heart aches for you. Thank you for allowing the viewers to go on this journey with you. I found Facebook groups extremely helpful, as well.
linzb255 thank you. Saw my ENT doc Thursday, no real Improvements. Scheduled MRI to see what’s going on. Have appt with acupuncturist next week, hoping that helps.
Awaken Your Joy good luck with the acupuncture! When I had my mri, I believe it was about 2 months after, however, it did still show significant inflammation along the 7th cranial nerve. Even though it did nothing for my actual recovery, it confirmed the painful mess that was going on in my head! I forgot to tell you that I started prednisone and antivirals within 1 hour of my facial paralysis. I felt like I did everything I possibly could to slow down the damage, yet still didn’t recover, which was heart breaking. I’m praying for your recovery and look forward to your mri results! Xoxo
I got HR in 2015 and still suffering with pressure in my head and lose my hearing in the ear that had the. Shingles. I like your old Wyoming plate. it’s is very important that you get medical attention within 48 hr. I wake up and ran to HR.
It's been just over 2 years for me... I gets sharp pains in my ear still. Unfortunately, they mid-diagnosed me and I didn't receive the proper meds for two weeks. The plate was my great grandmothers, it's from the year I was there visiting her as a kid.
Felt weird hitting the "like" button 'cause nobody should like the struggle you are experiencing. I just want to let you know that I will pray for you. I am not a real social person and so I don't meet many people I would want to know better. You I would.
Wow, thank you very much. That is an amazing compliment ❤️ and yes I agree I wouldn’t wish this on anyone!
Hi Joy, I just got the RHS 7-8 days ago, I went to ER 6 days ago with the face symptoms but no rash in my ear yet until the next day or so so I decided to do some research
and got lucky late at night err should I say early 4AM when I put the two together so I begun the viral meds(valacyclovir) with the prednisone I got at ER about 4-5 days after diagnose, today being 7-8 days later I have not improved and my eye\mouth etc. looks a lot more droopy than yours from your first RHS video, I am having more trouble eating/talking and ear still hearts but not as bad. I am going to try to sleep longer as you said and I was thinking about doing the acupuncture (face not ear) but I am not sure if it is too early as my ear is still swollen. I actually feel that maybe I should be receiving IV shots of acyclovir now instead of later as my doctor said. I was wondering if your ear became swollen besides the pain and do you know if it is too early to search for acupuncture at this stage, please let me know , Thank you
Sorry you are going through RHS, not fun. I didn’t start acupuncture until 6 months in. Would recommend talking to your doctor and getting their advice on when you could start.
Hi there, I'm so happy that I found your video. I'm currently dealing with RHS. I've had it for a month now, well more than a month. I did all the treatments and after a month the shingles were gone but I'm still dealing with vertigo, nausea sometimes, facial paralysis just like you except my left eye can't even move. The struggle is real. I was just wondering if the acupuncture worked? And how did it take for you to heal completely? Thank you.
Hi Elaine, sorry you are going through RHS, it was definitely a shock to experience it. Did they begin treatment right away? I think the acupuncture worked, I am not a fan of needles and while I only went 4 times, I think it and the combination of making sure I slept as much as I could helped. I would make sure you find someone that understands Bells Palsy (which is more common) this way they can approach the therapy with a greater understanding. I did discuss it with my doctor before just to make sure it made sense. Which I recommend. I am still not healed completely. I'm about 85-90% recovered. Most people can't tell, but I still have issues with my eye sometimes, I can't smile completely. I can't really whistle anymore (need to practice) but overall I'm ok.
There is a facebook group for RHS (Ramsay Hunt Syndrome Support Group) I highly recommend joining, they are a massive help and on those days you feel down or frustrated, it is very supportive and helps you get through the rough moments. If you have any questions, you can also send me a PM through Instagram @AYJadventures.
AYJ Adventures I just requested to join the group so hopefully they’ll approve my request soon. You posted your video in 2018 and I can’t believe you are still not fully recovered. I’m scared. I did get the treatment within 3/4 days I think but I didn’t complete my 12-day steroids cuz one of the doctors said I wasn’t supposed to take antiviral and steroids together. I had no idea. So after the shingles were gone I started again my 12- day steroids. I supposed better late than never right? Tomorrow I’m gonna make an appointment with acupuncture but it’s been 5/6 weeks so I don’t know what good will do tbh. And: I just got a fever for no reason at all I don’t know if it’s related but I’ve been coughing ever since I had RHS. I’m hoping it’s nothing. 😭
Everyone seems to recover differently that's the odd part, I believe it has to do with how quickly you are treated and how much damaged was caused by the shingles. There were so many different stories about the meds people were taking, for me, I took them all at the same time, but I was also mis-diagnosed and went untreated for 2 weeks.
It was definitely not easy and I had horrible days, I cried alot. Cling to things that make you happy, for me it was binge watching Friends (I was still in Knee Recovery). I couldn't drive yet and I really didn't want to go out to eat with friends because my mouth didn't function properly.
I know this may sound weird to say, but since most places require wearing a mask now, it will be much easier to go out in public. I really didn't want to be seen. I called myself "flat stanley" and felt like I sounded like Marlon Brando in the Godfather.
Stress doesn't help. Eat more greens and less processed foods, get plenty (and I mean 10-12 hours) of sleep; if you can. I know that's not usually possible especially if you have family or kids you have to take care of. Drink lots of water!
I figured mine out the day it happened bc I had the eye herpe.. and the rash and ear pain. The people at ER thought I was nuts and referred me to a psychiatrist. Luckily a clinic had already tested me for hsv1 and I had a prescription for antivirals. I took them immediately and it healed me sorta.. I am still numb in some areas and looking for a dermatologist that will take me for further treatment. My obgyn isn’t equipped for this. It creeps up and wants to come on again its scary.
If it’s RHS, would recommend a neurologist. When were you diagnosed?
Hi I’ve been diagnosed with RHS but it’s not in my ear , I had shingles on my forehead and temple but it didn’t effect my ears just one side of my face I can blink just I can’t show my teeth or smile yet I was diagnosed 3 rd April 22 do you think mine could be Bell’s palsy ?
Hi Hayley, did a doctor diagnose you? I would trust them, I don't think shingles need to affect your ears, for it to be RHS. From my understanding, if you have Bell's Palsy you don't get shingles. Shingles come with RHS. Hopefully, they have you on the meds and I hope you are able to sleep, rest, and relax as much as possible.
@@seekingthejoy yes a dr said I was put on prednisone high dose for two days tapering off every two days till finally off them plus anti virals and B12 I’m now off all meds except B12 I can close my eyes but they do get dry /tired after reading or watching tv , I have no pain at all just can’t smile yet or show my teeth , mine started after having Botox 6 days later came out with shingles I thought it was a reaction to the Botox , dr sent me to see a dermatologist who diagnosed Herpes zoster virus then one week later I started with my face dropping the dr sent me to a neurologist who diagnosed Ramsey hunt who kept me on the prednisone tapering off , I’m now 3 weeks since the face drop and it’s a little better my smile is straighter not as crooked but not how it was I can’t show my teeth either , or frown but that could be because of the Botox
I was just diagnosed 17 days ago. I would love to ask you a few questions.
Please do. Sorry you are going through it.
Can we talk via phone?
And if you prefer not to I understand. Thanks.
@@bigguy2928 I’m actually really busy until the new year, recently had knee replacement. We can message. Do you have IG or Facebook?
I dont have facebook but my wife does. Please send me a message at vanessa fvjf Duran. That's for facebook. Thanks.
23 September my daughter 3 months with palsy Ramsey hunt but I feel good not pain or dizinnes.
Paralysis stay😢how stay this;
I did not start actually recovering until after six months. It requires rest, sleeping, relaxing as much as possible, and patience. Sorry you are going through this. Remove as much stress from your life as possible.
@@seekingthejoy thanks for the answer.i hope soon recovery..End you stay strong💞🇬🇷
You too! σας ευχαριστώ! ελπίζω να έχεις γρήγορη ανάρρωση
@@seekingthejoy Σε ευχαριστώ πολύ κορίτσι μου 😍💞
My brother got bells palsy right after taking weed hits from the bong... true story
Sorry to hear about your brother, hopefully he has a speedy recovery.
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