I’m also here because of Justin, him spreading awareness really opened my eyes. Sure I’ve never been through this, but the amount of “he deserves this” or “he should lay off the drugs” is so upsetting to me.. like… HES A HUMAN.. I imagine this is a terrifying experience, and understand this isn’t something from drugs and know he’s cleaned up A LOT since he got roasted… sorry I’m rambling.. Thank you for spreading awareness about this illness and showing everyone you can recover from this, most of all thank you for being so encouraging and motivating to everyone and anyone regardless of if they are suffering from this illness.. I wish I could give you a hug and say thank you because humanity has really let me down today.❤️❤️
I just came here in searching all I could about the syndrome, you should know it reached JBieber also and fortunately he shared it with us because I didn't have no idea it existed. I'm really glad of have got presented to you by this video, your speech and being is fully light and hope, so thank you for sharing all of this you also with us, and the same wishing I'm sending to him I take it to you equally! May your recovering process gets consolidated more and more in favour of your health and well-being, please! Have a good week and thank you very much for it all! 🙋🏻♀️🙏🏻🌈🌻♥️
You're such a soulful person. I'm bummed you don't have any recent videos. Aside from Ramsay Hunt talk, you have the personality to be impactful on others. I really enjoyed this video for the Ramsay Hunt information, but overall the positive and outlook you have had really brightened my spirits. Thank you!!
Thank You for documenting this Syndrome. I wish I would have seen earlier. I was also missed diagnosed with sinus infection and Bells. 3 weeks later a rash appeared and Ramsay Hunt was the issue. I''m now at week 7 and I woke up yesterday with full use of mouth and lips. My eye is still not blinking and I wear patch but everyday I notice more and more improvements I still have a ways to go. Thanks again you are a blessing .
Sorry to bother , but I am on day 15 having RHS and my face still no change. May I ask did you notice any difference before week 7 when you woke up and parts of your face was back to normal? Hope you are all well now. Thank you
Comparing yourself to who you were before all this happened and how you can't do this anymore as that person doesn't exist; that was so well stated. It is a common unfairness people subject themselves to and it undermines what is tomorrow's potential and today's reality. That only causes us to feel negativity and negativity does not help growth. As always, well said and relevant to expressing a good life.
Way to go! Keep on going keep on resting, keep on getting up! I got Ramsay Hunt Syndrome when I was 10, though miraculously I got to the emergency room, had it RECOGNIZED, and had Acyclovir treatment within ~20 min of my mom spotting blisters in my ear and hair. I only had the Palsy for a short while, but everything else you talk about in your article I had to struggle through for the next ~4 years, with lingering symptoms even now, 10 years later (thanks to complications, I had many more outbreaks of shingles and hospitalizations leading to full-body nerve damage and CRPS/RSD). I cheer you on, it's really tough to deal with, and I'm happy to see you succeed - many people never keep pushing for recovery, not giving themselves a chance to retrain their nerves. No pain, no gain, you have to bear it to obtain the grin.
Amazing... this young girl has incredible insight, determination, optimism... she is an inspiration to me, a 57 year old who is newly diagnosed wuth Sjogren's Syndrome. Thank you, thank you, thank you...
Thank you, thank you, thank you!!!! I am recovering from shingles, lots of pain, lots of dizziness and fatigue. I have moments of energy, hunger, and desire for life, but my face makes me feel like a monsters. Listening to you is giving me so much hope, specially because I was diagnosed 3 days after discomfort started and got on meds. You are a beautiful soul. BTW, I’ve heard some people reset their pain sensibility by cold water shock, as in swim in cold water for some minutes..
Hope you’re doing better this week, I went through treatment back in October that helped decrease my chronic pain by 95% and balance issues are totally gone. I have a playlist of videos about that journey if you’d like more information for the future
Tanyatastic Talks Thanks so much, today I can eat regrular food, get out to bed, shower and be awake for a few hours at a time; the pain has diminished a great deal, but I am still dizzy when walking, i get easily tired, and I lost about 28 pounds, not a diet I recommend. I will keep following you here. Again, THANK YOU, THANK YOU, THANK YOU!!! Best wishes to you on your recovery and treatment. I look forward to seeing how it goes for you.
I was diagnosed almost 9 weeks ago, and I look similar to your day 5 but it's still a great improvement from where I was. I'm frustrated with my progress, and I stumbled upon your video. I didn't think to wear noise canceling headphones I'll have to try that.
I had Ramsey Hunt Syndrome back in Jan into Feb. I'm still dealing with a lot on the side I had it on.. I pray that you will continue to recover. I had face paralysis for 13 days. I do beleive I had internal shingles.. It took a month for my hearing back.. In still dealing with some nerve pain... I pray that this will soon end.. But I will continue to move forward!! Push forward!! Thank you for sharing..
This was super encouraging to me to see. I'm so grateful my primary care provider did the right thing and gave my antiviral along with the initial Bell's diagnosis. Went back in four days later because I was -confident- the lesion on my ear was Ramsay Hunt. Fortunately, the only thing we changed was to get even more aggressive with the antivirals. I'm only 9 days in and it's so discouraging sometimes. Face gets so floppy at the end of the day. I'm terrified I'll never smile again without looking like a Batman villain or an old-timey Las Vegas pit boss chewing on a cigar. Thanks so much for this.
I just wanted to thank you so much for the courage and the videos all this information has helped me. It was May 24,2020 in the pandemic it happened to me. This was the worst timing everything was closed I feared for my life and went to the ER woke up with my face twitching and awful ear pain blisters in my right earlobe and I was also miss diagnosed with Bell’s palsy, The Dr saw me from a computer monitor due to the pandemic they were even afraid to go in person. I was not getting any better after taking the medication they prescribed I cried from the severe pain in my ear and vertigo severe fatigue and insomnia. I started to search for ways to get better since everything was closed including my regular DR. And I found your videos and once the DR office reopened I pushed to see a neurologist and finally got a confirmation it was Ramsay Hunt now I’m in therapy and a year later my face is almost healed I still have fatigue and pain in my third facial nerve but glad I know what is going on. Thank you so much God bless you.
Thank you so much for sharing your story!! I’m glad you’re doing better now and I know how scary and awful this syndrome is. I was able to find treatment with a centre called Ottawa Performance Care in Canada - they are apart of an international association called IAFNR: International Association of Functional Neuroscience Rehabilitation- that really was able to help with the other symptoms I had - like the fatigue you’re talking about, the nerve pain etc. I have a playlist about that on my channel. Maybe you can find a place like that where you live! Let me know if you have any questions!! All the best to you!! Further healing can be possible!! 🦋🦋
Hi there. Your story sounds exactly the same as mine. Bell’s Palsy then Ramsay Hunt. It’s horrid, depressing, scary. Not treated or diagnosed in time. Your motor functions look much better but I know how you are feeling personally. It’s still not right is it? Mine has returned 95% but still not perfect. The fear it may return is worse than anything. Along with nerve pain which few people seem to understand. I agree with noise cancelling headphones. They really help. Still, could be worse. 🙂 I feel 100% the same as you do. Love you for sharing your video. Wish you all the best. X
Just in time hi! I agree it is a really unfortunate thing to have to go through, I do hope the medical community improves their ability to diagnose these things properly and promptly. You should check out my latest video. I went through treatment for a week back in October and it’s removed pretty much all symptoms that I’ve had that were left over from RHS. I’m still re-adapting to normal situations (loud places etc.) but I haven’t had to wear my noise cancelling headphones since the second to last week in October and my nerve pain is virtually gone. I hope your symptoms do improve and if you find they aren’t, maybe treatment like I did can be found near wear you live. It’s changed my life, I didn’t think I’d be walking into the New Year feeling this way. Wish you all the best as well. Thank you for watching!
I was diagnosed with RHS in March & I lost my hearing in my right ear. My smile isn’t 100% back, my right ear wiggles just a little and that’s about it. I found that it really does affects your brain from your mood, confusion and so much more. I knew I wasn’t myself but I couldn’t help it, and I felt / feel crazy :( I’m still going through all of that on top of being deaf still. I’ll be so glad when it’s all Over
Sorry to hear about the hearing loss and the lack of movement. I know for many people it takes months to see improvement, not easy I know. If you’ve seen my some of my recent videos, I went through treatment that helped with residual effects of RHS and another condition I developed because of RHS - anxiety, brain fog, chronic fatigue among many other symptoms went away. Maybe you can find something similar in your area!
Felt motivated after watching your video Rt now I am also suffering from Ramsey hunt syndrome since 2 months same I was not given antiviral for 5 days my condition is also severe but now after watching your video I am 100% sure that I will be fine Thanks
Omg I jst love you, I was diagnosed with bell palsy 2 1/2 yrs ago and my face has not completely formed back to normal and I’m currently dealing with the changes, I used to have a beautiful smile, I jst want that back again..
Hi there...I was diagnosed on May 25th, 2022. I've been researching and your informative video popped up!! Thank you for sharing..you gave me hope!!! Stay well you'll be in my prayers.❤️🙏
@@TanyatasticTalks Hi!! Oh I have sooo many questions!! I just got back from eye dr. He told me to use Systene Complete PF every 2 hrs and Genteal Gel at night before I patch for bed. I'm waiting for the insurance co to give authorization for MRI. They suggested I see an ENT, as well. I started Physical Therapy with my therapist of 15 yrs. She is the only person I'd ever allow touch my neck, back and now my face. I have RA, as well so was wondering if that's why I feel so exhauated. I actually posted on my FB page where my only contacts are family and closest friends, in the hopes that someone will point me in the right direction of.an ENT and neurologist that specializes, or is atleast is familiar with RHS. I live-in Monmouth County, NJ. Are these the two type of specialists that prescribed your care? I was first misdiagnosed with what they thought was osteonecrosis of jaw. They prescribed antibiotic and Ibuprofen for pain. Saw an oral surgeon next day and he said no necrosis but degenerative disease TMJ and I should see an ENT for the vertigo. Next day, I go to walk-in bc the pain is out of this world, I'm off balance and my ear is very red n puffy and she noticed my face drooping. They send me back to ER to rule a stroke. All clear and they realize I have shinglesnin ear and prescribed Acyclovir, prednisone and eye drops bc they said it's going to get worse be prepared. So sure enough..full paralysis on rt side of face. I follow-up with my amazing family dr, and he tells me you have RHS, and suggests I take gabapentin. I read the side effects and decided no way..I'll deal with the pain. So Tylenol and Advil, as needed. I'm sticking to Dr. Weil's Anti-inflammatory Diet and curcumin. I do my facial exercises 2 a day and massage often! My dr put me.out of work indefinitely, and mentally prepared me that this may not back any time soon or 100%. It will be 3 weeks June 15th, and I still feel very off balance, so tired, my ear itches and I get random sharp pain throughout rt side of head, face, neck n ear. So that's where I am today...please share or contact me if you can. I'm open to all information of this rare disorder. We will beat this along with prayers and positive vibes..we've got this! ❤️🙏
Hi Tanya, I was misdiagnosed back in June 2019. I was told at the ER I had Bell's Pasley. Five days later I had a '"pimple" in my left ear and it was so painful. by the next day I had about 5 in my ear and was in so much pain. Went to get a second opion from pcp and she agreed with me that I had RHS. I was given a steroid shot. I still deal with stiffness in the left side of my face when I am really tired. That's another issue I get tired so much. It's hard for me to concentrate on things..I Start to feel funny in my head. When I chew my left eye closes half way. Im so frustrated with all of this. I don't feel right anymore. I recently was put on Buspirone and Zoloft due to the anxiety. Watching your videos gives me hope.
You are very wise to be kind to yourself. Life has ups and downs: it is not want happens to you so much as how you deal with it. It's a learning process.
Love this! I’ve enjoyed reading your posts on the FB support group. I’m two and a half years post diagnosis and continuing to learn how to integrate my experience and remaining symptoms. Thank you for making these videos and choosing to inspire with your positivity. 🌼
Tanya, Because of Justin, I have been following threads on this. But also it's because three years ago, both my wife and I got shingles simplex. She had it first and was most miserable while she was ministering to her sister who was dying of cancer. Anyway, I got the shingles maybe a year after she did. Oh, what a terrible thing! Mine was around my middle from center chest to nearly mid-back. So this last year we both got the Shingrix shots; very costly but it should prevent anymore misery from this family of bugs. And now that I've seen your report, I'm doubly glad! A friend of ours had Bells Palsy. He's passed on, but I think he had lingering symptoms even with treatment. I still have tenderness and nerves that "act up" occasionally. My mother had Shingles around her head! People reading this, do consider getting the Shingrix shots. These diseases are nothing to fool with!
Thank you so much for making this video! I currently have RH, but was originally diagnosed with Bells Palsy. I don't have the rash but the doctor says it's in the ear canal. I have terrible nerve pain in my face, which was completely paralysed but is now showing minute signs of progress and my eye doesn't shut. I'm also getting some weird sensations in my ear, like a fluttering sound. I've mostly kept a positive outlook but today is a bad day. It helps to hear someone talk about it who knows how it feels ❤️
Thank you for watching! Hope today is a better day for you, it sounds normal what you’re experiencing (unfortunately) but I hope the pain stops and the movement returns. It can take a number of months for things to fully improve. I know my eye was the last thing to close. I had eye twitch issues for 3 years after - now my eye barely even twitches, it only sometimes shuts if I experience pain (stub my toe etc) but doesn’t come out anymore like it used to. Let me know if you have any questions!
got RHS 11 months ago at age 70 (18 months after Shingrix vaccine).Totally deaf in one ear; hyperacusis in good ear - facial paralysis with little improvement, poor balance, looking for encouragement - still working (boss won't let me quit)- thank G-d, sense of humor is still functioning, otherwise would not be good. is there a place for sharing stories and encouragement?
Hi Mark! Sorry to hear about how RHS has affected you but I’m glad you still have that sense of humour for sure! Yes there is a place for sharing stories! I am a part of a group on Facebook called: Ramsay Hunt Syndrome Support Group. We have people from all over the world share in their experiences and are able to find support
Thanks for watching!! If you’d like to see an update on my symptoms and where I’m at, I have a video about that I posted a few months ago outlining everything!!
Here because my sister was diagnosed recently. It was over a week and she was turned away by doctors thinking it was just a virtual throat and ear infection. Only when she went Into total facial paralysis did they properly diagnose Ramsay Hunt. Her is worse than your or even Justin Bieber’s. I am trying to lean as much as I can so I can be a supportive big sister. I am sad to hear there may be long term pain. But you are encouraging that one can press on and live well.
Sorry to hear her experience, unfortunately it’s common that doctors who don’t fully know the signs, misdiagnose people who are suffering. Having you in her corner is going to mean so much to her!! My family was virtual to my recovery. I hope her recovery is quick and that she rests as much as she can.
This is really nice to see. I'm in the early stages. I can deal with the hearing loss but that plus the facial paralysis is a lot right now haha. I'm so excited to be able to blink again!
manuel medina Thank you for watching - it does indeed get better! I found treatment this past October that has given me my life back. All the best to you and your family
victoria herbekian Hi, it took about a month and a half for my face to come back but it took longest for my eye to be able to close. I had to tape it at night and use special gels from May till August. Everyone is different. Some people it takes 4 months for their face to come back. I would recommend to rest, sleep as much as you can because your body needs it to heal
Hey, thank you so much for this video. Be grateful to have at least recovered especially your smile mine I would say it was 70% recovery I can’t smile like I used to, which it breaks my heart but am learning to live with it. I had rumsay hunt 2008 which at first they said it’s bells palsy, I can relate with your story.
I was diagnosed 2 weeks ago and caught early enough that I didn’t develop facial paralysis, although they noticed some abnormal eye movements and slight twitches in doing the neurological exam. I had debilitating dizziness and nausea the 1st week and excruciating pulsating headache and pressure every time I moved which I found to be a hyper stimulation of the nerves as the blood vessels pumped. I have hearing loss on the right side, but background noises are amplified… strange stuff! Also, my taste has changed… this sort of numbness on the tongue and sour/metallic taste on the right side. Cranial scalp pain remains on the right side. I also have a bright multicolored arch shaped light that randomly appears in my left eye and usually lasts a few minutes at a time. Still walk like a person with a traumatic brain injury 😅 Equilibrium is definitely off though much better. It’s frustrating though because I am a runner and can’t even walk straight right now. I notice the more visual input I have in the way of motion makes the dizzying feeling come back. I really hope it resolves fully at some point. Thanks for this video to spread awareness. I had never heard of this but am so glad that the doctor attending me at the ER did, because I went through 3 previous drs in one week that didn’t.
Thank you very much for giving out this information, I am experiencing exactly what you had, Ramsay hurt, then bell palsy, tinnitus and it's two months and three weeks already. What I will want to deal with as fast as possible is my smile and facial movement. I still have problems with smiling, my left side lips are tight making my talking and smiling awkward. please how did you handle this aspect? I will be so glad to hear from you soon, thank you once again and God bless you. 🥰
Thank you very very much, you are such a great encouragement. I thank God my facial symmetry is returning gradually after five months. Please what I am facing now is that I have tinnitus,phyteracusis, spinning in my head and I have visited three different ENT doctors, they said there's nothing anyone can do about it. Please from your experience can you give me any useful advice? It's really affecting me,I can't stay in office, church and any loud noisy environments. Please let me hear from you. Thank you
I think I am right when i say ;-Sufferers have Less need for medicine & more need for Inspiring, motivating, goading Life Guides like you!! Your instilling of confidence in them gives them energy to do the hardwork. And they come out successful though it takes time
Hi Guys i ve been fighting against that R H syndrome for over a month and a half .My face had gone back to normal .But still got headache slight vertigo tingling in the ears.Had Mri done doctors said its normal ( thanks God)My question to you guys is does any of you experience strange weakness like a tremal in the neck going towards your left( in my case ) or right arm ? Thanks you for the Great video my dear.and I wish you all speedy recovery.And be positive guys ! ♡♡♡
I have been affected with Ramsay Hunt Syndrome from 28th July 2024. I have similar symptoms as you. I am under steroids and physiotherapy and hope I will be completely recovered.
How are you today? I ask bc.I got this Ramsay Hunt Syndrome,on Friday March 24... And it is Sunday March 26 today. I've been hospitalized,but now I'm home,with medicine and some Factual things I need to practice 10-20 times a day... I am in my mid 40's and consider myself as lucky,since it might aswell could have been a stroke.... I hope to gain at least most of my normal functions of the right of my face back,and I have guarded myself with patience.... ❤❤❤
I am doing well, I’m my case because I wasn’t treated for the shingles on time the shingles keeps getting activated in my system, the last occurrence in January. Other than that I’m doing very well. I’d just focus on resting as much as possible. I’d wait for exercises and such, just to give your body a break, but I know how scary and overwhelming this is. Vitamin b12 helps with nerve regrowth as well.
Hello , thank you for sharing My mother has the same thing she is 56 years old and has DM2 and it’s been almost 3 months . Doctors figure it out within 3 days and gave her antivirus medicine immediately , but so far there is no progress and we are so worried that the damage is permeant . How long did it take until your face return to normal ?
Hi. I'm almost 6 months into the RHS. I've recovered 85 - 90%. My smile isn't normal yet and my eye is smaller than the other one. How much had you recovered at 6 months. Just really losing hope of complete recovery. I still have tinnitus and balance issues
Hey my friend I've got yhe same thing as well.. this is my second months i have it but i don't see any improvement.. what about you after how much time did you see improvement? Thank you
I've already recovered from shingles and facial palcy it's already a month but hearing loss and tinnitus is still there. Because of the shingles spread inside the ear my left ear drum ruptured... I'm really disappointed...
your so lucky, I was diagnosticated with S. R. H at 2006, and still have facial paralisis 😞 I can't smile, and think I never more will do, many doctors watch me hadbmany fisio teraph and nothing happend just get close my left eye finally after 2 years, but even cry every time I eat, ibgurss push nerv or something, whatever i realky don't know why I still have this paralisis in my face 😢
Hi, thanks for your encouragement. I've been suffering RHS for 4 months and I'm still into it. I noticed just a few millimetres of improvement... I've got a question: did anybody suggest you to make any vaccine to exclude a new activation of the virus? Thanks 😉.
@@cristinamaltinti4103 hi, are you talking about the shingles vaccine? My drs wouldn’t allow me to get it because of my age. Since this video I’ve had 3 more reoccurrences with shingles being active in my system. I now have antivirals on hand just in case another flare up happens. Thankfully RHS hasn’t repeated itself.
Thanks a lot, I'll talk to my doctor and I will take a decision about it but only after an year from the beginning of the symptoms... Here in Italy they suggest to vaccinate against the reactivation of Chickenpox, yes I'm talking about shingles vaccine...however I'm older than you I'm 58...thanks again for your answer🤗.
@@cristinamaltinti4103 you’re welcome, let me know if you have any other questions! Hope you continue to heal well, I know it’s a long hard process. If you’d like more support there is a Facebook group called: Ramsay Hunt Syndrome Support Group
Thank you for keeping us informed. Question? Did you get the shingles vaccine after having Ramsey Hunt? I was advised to do so but wonder if it could trigger it again. It’s been a year for me, my face still pulls when I try to smile or laugh. My biggest problem now is balance , can’t move too fast cause I can easily loose my balance. Vertigo By the way I’m 72
I did not. My doctor said I was too young to get it as there isn’t enough research for people under the age of 50 and its efficacy. Sorry to hear you’re still experiencing tough symptoms. I understand your concern, I’d be afraid too. I haven’t heard of people having it be reactivated from the shingles vaccine itself although there may be a reactivation of some pain etc but not long lasting from what I’ve heard.
Creo que lo que ayudó a que mi cara volviera a la normalidad fue una dosis decreciente de prednisona. Por desgracia, cada persona se cura de una forma diferente. No recibí ningún tratamiento para la parálisis facial. El ojo fue lo que más tardó en recuperarse, incluso cuando el resto de la cara recuperó el movimiento. Ojalá pudiera ser de más ayuda.
Thank you so much for this encouraging video. I am currently on my 10th day with this virus. I caught it in 72 hrs for treatment. I still have facial paralysis an lots of dizziness. Can you tell me how long did it take you to recover?
Thank you for watching! You’re still early in recovery, I still had facial paralysis then and dizziness among my other symptoms. It took my face about 6 weeks to recover but my eye took a few months to close (which is normal) everyone’s system is different in terms of healing. My hearing hypersensitivity didn’t leave until I found treatment 2 and a half years later. I hope you recover quickly, rest as much as you can and avoid stressful situations as much as you can as well!
I was misdiagnosed with Bells Palsy but my symptoms shown it is RHS. I had antiviral for 7 days only. Its been two months now and im into Vitamin B12 only and therapy. Is it enough treatment for me?
@@jaimeblanco1216 Hola, mi cara volvió a la normalidad a los pocos meses pero tuve graves problemas neurológicos que persistieron durante 2 años y medio, algunos de los cuales sigo padeciendo más de 7 años después. Algunas personas tardan muchos meses o más de un año en encontrar una mejoría. ¿Tiene otros problemas de equilibrio, concentración, visión o audición?
@@TanyatasticTalks ahorita no recupero el movimiento total de la cara, problema de audición y movimientos involuntarios de la cara, todavía no logro sonreír por completo 😭
I'm happy you are are doing better. Did at any point the hyperacusis or tinnitus go away at the beginning? like coming and going. I'm on day 33 and my balance ⚖ and face is way better but loud noises are an issue only sometimes and my tinnitus seems to be less loud. Seems transient. at it's peek I had a seizure do to a high pitch sound. It's amazing that I'm not in psychiatric care just yet so intense.
It took a number of months for my tinnitus to calm down - my hypersensitive hearing was so intense for 2 and a half years. I found treatment that helped with that and all my other symptoms that you saw In this video. I’m now 98% recovered. Are you in Canada or US? I went to a specialist trained in functional neuroscience
@@TanyatasticTalks I'm now in Switzerland 🇨🇭 I spent 42mins in the MRI machine today, and my poor ears. After 8 visits to the hospital in Canada they still said bells palsy.. Yeah right. So now I'm in Switzerland with real doctors and people that seem to care. They took my blood yesterday and are testing for everything under the sun ☀. They are concerned because I'm having involuntary muscle twitches all over my body to the point where it actually making my muscles weaker. Massive mood swings also, fatigue. I'm just hoping the twitching is stress but this has never happened before. I was prescribed anti biotics yesterday because they noticed my right ear looked infected or red. The paper for the MRI tech said suspected encephalitis.
@@Masterstockli I hope you find answers quickly!! Thanks for letting me know what’s happened, keep me posted!! If for some reason they don’t provide treatment (if it’s FND) then seeing someone trained in functional neuroscience will hopefully help, as you know it’s changed my life
Hi! I was diagnosed with bells palsy last april 9, 2021 and a week after it became RHS when all those blisters on my left ear. Now seeing your recovery on this video, i wanna ask what are the treatments and procedure you have done to win the battle for recovery? Thanks for the response. Keep safe dear! 🙏😇
Hi! Firstly, I rested as much as I could, was off work because of all of this, so that helped. Vitamin B12 - I took that every day as it helps with nerve regrowth. I had a lot of pain that persisted and intensified, took medication for that but what really helped was seeing a chiropractor who has further training in neuroscience- you can see the treatment on the playlist I have. I developed a horrible neurological condition because of RHS but thankfully found treatment for that and it helped with hearing hypersensitivity that I had that was left over from RHS and the pain as well.
Anyone got tinnitus after Ramsey Hunt? My face come back to normal but my left ear is tingling and ringing. Also get tired easy and ringing? Is there a fix?
You may benefit from seeing someone trained in functional neuroscience like the centre I found treatment at - Ottawa Performance care. Depending on where you live you may be able to find a centre like them. They are affiliated with the association called IAFNR
Hi , 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 , I am having more trouble eating/talking and ear still hearts but not as bad. I am going to try to sleep longer as recommended by another youtuber wit RHS 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 did you do acupuncture? Please let me know if anything, Thank you. BTW you look like you're doing really good through out this really hard experience.
Hope you’re feeling a bit better this week! I didn’t do acupuncture for my face. My ear didn’t get majorly swollen, my neck was a bit and took some time to go down (where the nerve shoots out from the ear - beside the jaw. What I feel helped save my face was being on prednisone for a few weeks so it gave my body and system a break to recoup. Resting, yes, is super important and to not engage in things that stress you out as that can make some symptoms more intense- like pain, tiredness etc.
@@TanyatasticTalks Hi and thank you for your reply. My ENT doctor tapered down the prednisone after my 5 day course was finished to 50mg x 2 days 40mg x 2 days 3mg x 30 days etc. until finished and I had to literally beg a neurologists who is in the same network to bring it back up. I was down to 20mg x 2 days and I am back to 60mg x 2 days 50 x 2 days etc. until finished. They also took away Valactclovir which I took for 7 days and I was only able to get 3 more extra days. I don't know if there is a test to show that the virus is gone, did you have that test? I feel my medical team has very little experience or they just don't really care. From all the reading I've done it seems like a lot of people continue to use both medicines. I was wondering for how long did you take each one and how much did you take. Thank you in advance and thank you again for your reply
@@gogoluna1983 I was on Prednisone for a few weeks - I think it was 40 mg for one week, then 30, then 20 then 10, but I'm not exactly sure of the dosages but I was tapered off well. Hope you have seen more recovery!!
@@TanyatasticTalks Hi, I got some movement around three weeks in and I am at about 55% movement now, the movement came back and it sort of stopped but seems to be progressing very slowly. Unfortunately my other side is feeling numb and I am also having spasms on that side and some tingling in my ear just like the my afected side and spasms, even my good eye is dry too. My limbs are also numb with some pain, I had a hard time extending my antivirals as my doctor, ENT and Neurologist don't know anything about RHS a they say there is no more evidence of shingles to continue taking them. I bought a book written by ENT doctors and clinics (fix my face) that treat facial paralysis and also read on several places from clinical studies that RHS patients should get at least 5 weeks of antivirals to have a better outcome and I only got them for 7 days then I asked for more and got 3 days more days then asked for more and this time I got another 7 days tapered at half dose but I don't think that was enough. I've been off the antivirals for a while now a d I feel like the virus is stronger than what is should have been by now.
I have RHS and I'm feeling so hopeless about it. My face is constantly on fire but numb at the same time. But the worse is the facial paralysis that justs gets to me. It's been almost a month+ I have not recovered any facially function
BAMBAMM1 it takes time unfortunately, rest as much as you can and try to avoid stressful situations as much as you can. I hope the pain decreases. Hopefully they can maybe put you on nerve pain medication to help
I have been suffering from this for the last 10 years on and off minus the paralysis! The shingles seems to be localized thank God but it’s triggered from stress and boom I get an outbreak in my ear 👂 the outer part...I wish we didn’t have to go through this
We gotta be so careful about our stress levels! Whenever I get any type of pain in my ear whether it’s nerve pain related or whatever, or any bump, I always think oh no is it happening again?
Tanyatastic Talks yes I am making an appointment with an Infectious Disease Dr to get tested and see if I qualify for some sort of vaccine to prevent it from coming. The longest I have gone without it has been 3 years and then if I get too stressed it comes back, its so annoying and completely debilitating 🙄😰😰. I also picked up MRSA infection in my hand one time about 4 years ago from a simple pimple so that’s why I want to make sure things are Okay with my body or at least find out what’s out of balance! Taking antibiotics only makes matters worth for an already compromised body...good luck with your situation and I hope you never get it again! 🙏🏻
Kirthi Kiran Jupelli Hi no I did not, but I know it’s recommended to wait many months before trying anything like that. If you start too early there can be a risk of synkinesis
My doctors have recommended physio therapy, and is been 2 weeks now. I have started within days s time , after my face nerve has effected. My eye is not completely closing, cannot blink and had to tape it.
Fluffy虎虎 Hi, I don’t know if I did, the 2 MRI’s I had I don’t think showed that being swollen but it could have happened- although I didn’t have to have anything drained. From what I know it was my 7th cranial nerve that was completely swollen, my neck and jaw area were swollen because of it and a lot of pain in my face, neck, jaw, ear. It was awful. I wasn’t given medication for the pain so that made my long term recovery worse. Hope your lab result comes back okay
@@TanyatasticTalks Hi i suffered from Ramsey hunt too :(.Glad to hear you recovered .Its been 1 month and my face is back to normal , but still have vertigo at times and some strange weakness in my neck .My question is do you think that swollen nerve is cousing that weakness in my neck ? And did you guys experience that too ? Thanks
@@marinpetrov629 I’m not sure but I know you’re early on in the healing process. I’d continue to monitor what you’re feeling and see if maybe you can make an appointment with your doctor or an ENT specialist to follow up on what you’re experiencing. If the vertigo doesn’t subside then see if you can find a specialist in vestibular therapy or in functional neuroscience where you live.
Seems to me 100%recover I got this dizziness since one week now and sometimes my right arm feels heavier and i just experienced a little numbness on my right jaw i went to the hospital and did some neurological tests they were 100 percent good,but this numbness on my jaw it really scared me and when i touch the floor with my head i feel the pressure on my ears but i had that checked too and they saw nothing Did you have any of these signs? Just for the record i dont have any pain at all except light pain 2 to3 times on my right ear and its gone now Thnx
menar davud I haven’t had your specific symptoms but is the numbness in your jaw when you touch your face or as if you can’t move it? Is it constant or does it come and go randomly?
amigo dei uma olhada rapida sobre seu problema, veja essa americana, q passou pelo mesmo problema q vc esta passando, th-cam.com/video/LHmiO-hgi4A/w-d-xo.html siga o tratamento vc ira voltar seus movimentos,
I’m also here because of Justin, him spreading awareness really opened my eyes. Sure I’ve never been through this, but the amount of “he deserves this” or “he should lay off the drugs” is so upsetting to me.. like… HES A HUMAN.. I imagine this is a terrifying experience, and understand this isn’t something from drugs and know he’s cleaned up A LOT since he got roasted… sorry I’m rambling.. Thank you for spreading awareness about this illness and showing everyone you can recover from this, most of all thank you for being so encouraging and motivating to everyone and anyone regardless of if they are suffering from this illness.. I wish I could give you a hug and say thank you because humanity has really let me down today.❤️❤️
I just came here in searching all I could about the syndrome, you should know it reached JBieber also and fortunately he shared it with us because I didn't have no idea it existed. I'm really glad of have got presented to you by this video, your speech and being is fully light and hope, so thank you for sharing all of this you also with us, and the same wishing I'm sending to him I take it to you equally! May your recovering process gets consolidated more and more in favour of your health and well-being, please! Have a good week and thank you very much for it all! 🙋🏻♀️🙏🏻🌈🌻♥️
You're such a soulful person. I'm bummed you don't have any recent videos. Aside from Ramsay Hunt talk, you have the personality to be impactful on others. I really enjoyed this video for the Ramsay Hunt information, but overall the positive and outlook you have had really brightened my spirits. Thank you!!
Thank you for watching!! I go back and forth with starting up making videos again, I should do another updated one as to where I’m at with everything.
Thank You for documenting this Syndrome. I wish I would have seen earlier. I was also missed diagnosed with sinus infection and Bells. 3 weeks later a rash appeared and Ramsay Hunt was the issue. I''m now at week 7 and I woke up yesterday with full use of mouth and lips. My eye is still not blinking and I wear patch but everyday I notice more and more improvements I still have a ways to go. Thanks again you are a blessing .
Sorry to bother , but I am on day 15 having RHS and my face still no change. May I ask did you notice any difference before week 7 when you woke up and parts of your face was back to normal? Hope you are all well now. Thank you
@@electrikwayzhey
How are you now ?
Comparing yourself to who you were before all this happened and how you can't do this anymore as that person doesn't exist; that was so well stated. It is a common unfairness people subject themselves to and it undermines what is tomorrow's potential and today's reality. That only causes us to feel negativity and negativity does not help growth.
As always, well said and relevant to expressing a good life.
Way to go! Keep on going keep on resting, keep on getting up!
I got Ramsay Hunt Syndrome when I was 10, though miraculously I got to the emergency room, had it RECOGNIZED, and had Acyclovir treatment within ~20 min of my mom spotting blisters in my ear and hair. I only had the Palsy for a short while, but everything else you talk about in your article I had to struggle through for the next ~4 years, with lingering symptoms even now, 10 years later (thanks to complications, I had many more outbreaks of shingles and hospitalizations leading to full-body nerve damage and CRPS/RSD). I cheer you on, it's really tough to deal with, and I'm happy to see you succeed - many people never keep pushing for recovery, not giving themselves a chance to retrain their nerves. No pain, no gain, you have to bear it to obtain the grin.
Amazing... this young girl has incredible insight, determination, optimism... she is an inspiration to me, a 57 year old who is newly diagnosed wuth Sjogren's Syndrome. Thank you, thank you, thank you...
Glad I was able to help Lisa!! 🦋
Thank you, thank you, thank you!!!! I am recovering from shingles, lots of pain, lots of dizziness and fatigue. I have moments of energy, hunger, and desire for life, but my face makes me feel like a monsters. Listening to you is giving me so much hope, specially because I was diagnosed 3 days after discomfort started and got on meds. You are a beautiful soul. BTW, I’ve heard some people reset their pain sensibility by cold water shock, as in swim in cold water for some minutes..
Hope you’re doing better this week, I went through treatment back in October that helped decrease my chronic pain by 95% and balance issues are totally gone. I have a playlist of videos about that journey if you’d like more information for the future
Tanyatastic Talks Thanks so much, today I can eat regrular food, get out to bed, shower and be awake for a few hours at a time; the pain has diminished a great deal, but I am still dizzy when walking, i get easily tired, and I lost about 28 pounds, not a diet I recommend. I will keep following you here. Again, THANK YOU, THANK YOU, THANK YOU!!! Best wishes to you on your recovery and treatment. I look forward to seeing how it goes for you.
cristobal garza I wish you a speedy recovery! Rest as much as you can!
You are talking about herpes zoster oticus Right?
@@buddhikagunarathna4224 Yes.
I was diagnosed almost 9 weeks ago, and I look similar to your day 5 but it's still a great improvement from where I was. I'm frustrated with my progress, and I stumbled upon your video. I didn't think to wear noise canceling headphones I'll have to try that.
I had Ramsey Hunt Syndrome back in Jan into Feb. I'm still dealing with a lot on the side I had it on.. I pray that you will continue to recover. I had face paralysis for 13 days. I do beleive I had internal shingles.. It took a month for my hearing back.. In still dealing with some nerve pain... I pray that this will soon end.. But I will continue to move forward!! Push forward!! Thank you for sharing..
This was super encouraging to me to see. I'm so grateful my primary care provider did the right thing and gave my antiviral along with the initial Bell's diagnosis. Went back in four days later because I was -confident- the lesion on my ear was Ramsay Hunt. Fortunately, the only thing we changed was to get even more aggressive with the antivirals.
I'm only 9 days in and it's so discouraging sometimes. Face gets so floppy at the end of the day. I'm terrified I'll never smile again without looking like a Batman villain or an old-timey Las Vegas pit boss chewing on a cigar.
Thanks so much for this.
Totally get you, I know it’s hard. I hope you’re not in too much pain!!
I just wanted to thank you so much for the courage and the videos all this information has helped me. It was May 24,2020 in the pandemic it happened to me. This was the worst timing everything was closed I feared for my life and went to the ER woke up with my face twitching and awful ear pain blisters in my right earlobe and I was also miss diagnosed with Bell’s palsy, The Dr saw me from a computer monitor due to the pandemic they were even afraid to go in person. I was not getting any better after taking the medication they prescribed I cried from the severe pain in my ear and vertigo severe fatigue and insomnia. I started to search for ways to get better since everything was closed including my regular DR. And I found your videos and once the DR office reopened I pushed to see a neurologist and finally got a confirmation it was Ramsay Hunt now I’m in therapy and a year later my face is almost healed I still have fatigue and pain in my third facial nerve but glad I know what is going on. Thank you so much God bless you.
Thank you so much for sharing your story!! I’m glad you’re doing better now and I know how scary and awful this syndrome is. I was able to find treatment with a centre called Ottawa Performance Care in Canada - they are apart of an international association called IAFNR: International Association of Functional Neuroscience Rehabilitation- that really was able to help with the other symptoms I had - like the fatigue you’re talking about, the nerve pain etc. I have a playlist about that on my channel. Maybe you can find a place like that where you live! Let me know if you have any questions!! All the best to you!! Further healing can be possible!! 🦋🦋
Hi there. Your story sounds exactly the same as mine. Bell’s Palsy then Ramsay Hunt. It’s horrid, depressing, scary. Not treated or diagnosed in time. Your motor functions look much better but I know how you are feeling personally. It’s still not right is it? Mine has returned 95% but still not perfect. The fear it may return is worse than anything. Along with nerve pain which few people seem to understand. I agree with noise cancelling headphones. They really help. Still, could be worse. 🙂 I feel 100% the same as you do. Love you for sharing your video. Wish you all the best. X
Just in time hi! I agree it is a really unfortunate thing to have to go through, I do hope the medical community improves their ability to diagnose these things properly and promptly. You should check out my latest video. I went through treatment for a week back in October and it’s removed pretty much all symptoms that I’ve had that were left over from RHS. I’m still re-adapting to normal situations (loud places etc.) but I haven’t had to wear my noise cancelling headphones since the second to last week in October and my nerve pain is virtually gone. I hope your symptoms do improve and if you find they aren’t, maybe treatment like I did can be found near wear you live. It’s changed my life, I didn’t think I’d be walking into the New Year feeling this way. Wish you all the best as well. Thank you for watching!
What was the additional treatment that you had?
I was diagnosed with RHS in March & I lost my hearing in my right ear. My smile isn’t 100% back, my right ear wiggles just a little and that’s about it. I found that it really does affects your brain from your mood, confusion and so much more. I knew I wasn’t myself but I couldn’t help it, and I felt / feel crazy :( I’m still going through all of that on top of being deaf still. I’ll be so glad when it’s all Over
Sorry to hear about the hearing loss and the lack of movement. I know for many people it takes months to see improvement, not easy I know.
If you’ve seen my some of my recent videos, I went through treatment that helped with residual effects of RHS and another condition I developed because of RHS - anxiety, brain fog, chronic fatigue among many other symptoms went away. Maybe you can find something similar in your area!
Felt motivated after watching your video Rt now I am also suffering from Ramsey hunt syndrome since 2 months same I was not given antiviral for 5 days my condition is also severe but now after watching your video I am 100% sure that I will be fine Thanks
Thank you Tanya. Its nice to know I'm not the only one :)
Omg I jst love you, I was diagnosed with bell palsy 2 1/2 yrs ago and my face has not completely formed back to normal and I’m currently dealing with the changes, I used to have a beautiful smile, I jst want that back again..
Hi there...I was diagnosed on May 25th, 2022. I've been researching and your informative video popped up!! Thank you for sharing..you gave me hope!!! Stay well you'll be in my prayers.❤️🙏
Let me know if you have any questions!! Hope you recover well! 🦋🦋
@@TanyatasticTalks Hi!! Oh I have sooo many questions!! I just got back from eye dr. He told me to use Systene Complete PF every 2 hrs and Genteal Gel at night before I patch for bed.
I'm waiting for the insurance co to give authorization for MRI. They suggested I see an ENT, as well. I started Physical Therapy with my therapist of 15 yrs. She is the only person I'd ever allow touch my neck, back and now my face. I have RA, as well so was wondering if that's why I feel so exhauated. I actually posted on my FB page where my only contacts are family and closest friends, in the hopes that someone will point me in the right direction of.an ENT and neurologist that specializes, or is atleast is familiar with RHS. I live-in Monmouth County, NJ. Are these the two type of specialists that prescribed your care?
I was first misdiagnosed with what they thought was osteonecrosis of jaw. They prescribed antibiotic and Ibuprofen for pain. Saw an oral surgeon next day and he said no necrosis but degenerative disease TMJ and I should see an ENT for the vertigo. Next day, I go to walk-in bc the pain is out of this world, I'm off balance and my ear is very red n puffy and she noticed my face drooping. They send me back to ER to rule a stroke. All clear and they realize I have shinglesnin ear and prescribed Acyclovir, prednisone and eye drops bc they said it's going to get worse be prepared. So sure enough..full paralysis on rt side of face.
I follow-up with my amazing family dr, and he tells me you have RHS, and suggests I take gabapentin. I read the side effects and decided no way..I'll deal with the pain. So Tylenol and Advil, as needed. I'm sticking to Dr. Weil's Anti-inflammatory Diet and curcumin. I do my facial exercises 2 a day and massage often!
My dr put me.out of work indefinitely, and mentally prepared me that this may not back any time soon or 100%. It will be 3 weeks June 15th, and I still feel very off balance, so tired, my ear itches and I get random sharp pain throughout rt side of head, face, neck n ear.
So that's where I am today...please share or contact me if you can. I'm open to all information of this rare disorder. We will beat this along with prayers and positive vibes..we've got this! ❤️🙏
Hi Tanya, I was misdiagnosed back in June 2019. I was told at the ER I had Bell's Pasley. Five days later I had a '"pimple" in my left ear and it was so painful. by the next day I had about 5 in my ear and was in so much pain. Went to get a second opion from pcp and she agreed with me that I had RHS. I was given a steroid shot. I still deal with stiffness in the left side of my face when I am really tired. That's another issue I get tired so much. It's hard for me to concentrate on things..I Start to feel funny in my head. When I chew my left eye closes half way. Im so frustrated with all of this. I don't feel right anymore. I recently was put on Buspirone and Zoloft due to the anxiety. Watching your videos gives me hope.
Hi. We had the same case. I wish to know how are you nowv🙂
You are very wise to be kind to yourself. Life has ups and downs: it is not want happens to you so much as how you deal with it. It's a learning process.
Thank you 🙏🦋
Very wise. Amazing outlook on life. Thanks for sharing your story Tanya
I wish you healing. I like your positivity.
Love this! I’ve enjoyed reading your posts on the FB support group. I’m two and a half years post diagnosis and continuing to learn how to integrate my experience and remaining symptoms. Thank you for making these videos and choosing to inspire with your positivity. 🌼
Can you share the Facebook group?
Tanya,
Because of Justin, I have been following threads on this. But also it's because three years ago, both my wife and I got shingles simplex. She had it first and was most miserable while she was ministering to her sister who was dying of cancer. Anyway, I got the shingles maybe a year after she did. Oh, what a terrible thing! Mine was around my middle from center chest to nearly mid-back. So this last year we both got the Shingrix shots; very costly but it should prevent anymore misery from this family of bugs. And now that I've seen your report, I'm doubly glad!
A friend of ours had Bells Palsy. He's passed on, but I think he had lingering symptoms even with treatment. I still have tenderness and nerves that "act up" occasionally. My mother had Shingles around her head!
People reading this, do consider getting the Shingrix shots. These diseases are nothing to fool with!
Thank you so much for making this video! I currently have RH, but was originally diagnosed with Bells Palsy. I don't have the rash but the doctor says it's in the ear canal. I have terrible nerve pain in my face, which was completely paralysed but is now showing minute signs of progress and my eye doesn't shut. I'm also getting some weird sensations in my ear, like a fluttering sound. I've mostly kept a positive outlook but today is a bad day. It helps to hear someone talk about it who knows how it feels ❤️
Thank you for watching! Hope today is a better day for you, it sounds normal what you’re experiencing (unfortunately) but I hope the pain stops and the movement returns. It can take a number of months for things to fully improve. I know my eye was the last thing to close. I had eye twitch issues for 3 years after - now my eye barely even twitches, it only sometimes shuts if I experience pain (stub my toe etc) but doesn’t come out anymore like it used to.
Let me know if you have any questions!
got RHS 11 months ago at age 70 (18 months after Shingrix vaccine).Totally deaf in one ear; hyperacusis in good ear - facial paralysis with little improvement, poor balance, looking for encouragement - still working (boss won't let me quit)- thank G-d, sense of humor is still functioning, otherwise would not be good. is there a place for sharing stories and encouragement?
Hi Mark! Sorry to hear about how RHS has affected you but I’m glad you still have that sense of humour for sure!
Yes there is a place for sharing stories! I am a part of a group on Facebook called: Ramsay Hunt Syndrome Support Group. We have people from all over the world share in their experiences and are able to find support
Thank you!!! I really appreciate this. Omg!! Thank God for you.
Thanks for watching!! If you’d like to see an update on my symptoms and where I’m at, I have a video about that I posted a few months ago outlining everything!!
Thank you for your courage and for sharing your story. Wishing you all the best and hoping that you continue in your recovery.
Keep fighting the good fight and I’m keeping you in prayers and lifting you up 🙏🏻
Jonathan Macaw thank you!! 🙏
Here because my sister was diagnosed recently. It was over a week and she was turned away by doctors thinking it was just a virtual throat and ear infection. Only when she went Into total facial paralysis did they properly diagnose Ramsay Hunt. Her is worse than your or even Justin Bieber’s. I am trying to lean as much as I can so I can be a supportive big sister. I am sad to hear there may be long term pain. But you are encouraging that one can press on and live well.
Sorry to hear her experience, unfortunately it’s common that doctors who don’t fully know the signs, misdiagnose people who are suffering. Having you in her corner is going to mean so much to her!! My family was virtual to my recovery. I hope her recovery is quick and that she rests as much as she can.
This is really nice to see. I'm in the early stages. I can deal with the hearing loss but that plus the facial paralysis is a lot right now haha.
I'm so excited to be able to blink again!
Thank you for sharing with us, my best wishes to you, stay always strong and positive. you just lit our horizon.
manuel medina Thank you for watching - it does indeed get better! I found treatment this past October that has given me my life back. All the best to you and your family
Hi, how are you? Im having ramsay hunt. I want to know how many time takes you to recovered your face movility complete? Thank u very much! :)
victoria herbekian Hi, it took about a month and a half for my face to come back but it took longest for my eye to be able to close. I had to tape it at night and use special gels from May till August. Everyone is different. Some people it takes 4 months for their face to come back. I would recommend to rest, sleep as much as you can because your body needs it to heal
victoria herbekian mee too
That was wise what you said aboute keeping the faith, all the support, get well soon ❤✌
How many time take to get normal? Justin 🥺
you can stay amazing and beautiful. Thank-you for sharing. I loved this video🙂
Thank you !!! Today is my day of sadness so much going on and then my body is fighting with other things besides the Ramsay hunt.it’s hard .
I know it’s not easy, how far along are you in your recovery?
Thanks for sharing. God bless you!
Hey, thank you so much for this video. Be grateful to have at least recovered especially your smile mine I would say it was 70% recovery I can’t smile like I used to, which it breaks my heart but am learning to live with it. I had rumsay hunt 2008 which at first they said it’s bells palsy, I can relate with your story.
Thank you for sharing your story
Thank you for watching!!
I was diagnosed 2 weeks ago and caught early enough that I didn’t develop facial paralysis, although they noticed some abnormal eye movements and slight twitches in doing the neurological exam.
I had debilitating dizziness and nausea the 1st week and excruciating pulsating headache and pressure every time I moved which I found to be a hyper stimulation of the nerves as the blood vessels pumped.
I have hearing loss on the right side, but background noises are amplified… strange stuff! Also, my taste has changed… this sort of numbness on the tongue and sour/metallic taste on the right side.
Cranial scalp pain remains on the right side.
I also have a bright multicolored arch shaped light that randomly appears in my left eye and usually lasts a few minutes at a time.
Still walk like a person with a traumatic brain injury 😅
Equilibrium is definitely off though much better. It’s frustrating though because I am a runner and can’t even walk straight right now.
I notice the more visual input I have in the way of motion makes the dizzying feeling come back.
I really hope it resolves fully at some point.
Thanks for this video to spread awareness. I had never heard of this but am so glad that the doctor attending me at the ER did, because I went through 3 previous drs in one week that didn’t.
hi justin bieber brought me here. thanks for educating me ❤️
Thanks for watching!
Just Bieber got me here.
Welcome! Haha
same
Me too :)
Me too
Thank you very much for giving out this information, I am experiencing exactly what you had, Ramsay hurt, then bell palsy, tinnitus and it's two months and three weeks already. What I will want to deal with as fast as possible is my smile and facial movement. I still have problems with smiling, my left side lips are tight making my talking and smiling awkward. please how did you handle this aspect? I will be so glad to hear from you soon, thank you once again and God bless you. 🥰
Thank you very very much, you are such a great encouragement. I thank God my facial symmetry is returning gradually after five months. Please what I am facing now is that I have tinnitus,phyteracusis, spinning in my head and I have visited three different ENT doctors, they said there's nothing anyone can do about it. Please from your experience can you give me any useful advice? It's really affecting me,I can't stay in office, church and any loud noisy environments. Please let me hear from you. Thank you
I think I am right when i say ;-Sufferers have Less need for medicine & more need for Inspiring, motivating, goading Life Guides like you!! Your instilling of confidence in them gives them energy to do the hardwork. And they come out successful though it takes time
Hi Guys i ve been fighting against that R H syndrome for over a month and a half .My face had gone back to normal .But still got headache slight vertigo tingling in the ears.Had Mri done doctors said its normal ( thanks God)My question to you guys is does any of you experience strange weakness like a tremal in the neck going towards your left( in my case ) or right arm ? Thanks you for the Great video my dear.and I wish you all speedy recovery.And be positive guys ! ♡♡♡
My arm is weak did yours heal
Has anyone found away to smile again. Its been 10 mths. I do exercise 2 times aday
I have been affected with Ramsay Hunt Syndrome from 28th July 2024. I have similar symptoms as you. I am under steroids and physiotherapy and hope I will be completely recovered.
@@vinitdeepak3694 wish you all the best in your healing and recovery!!
@@TanyatasticTalks Thank you
@@vinitdeepak3694Have you recovered fully and how many days you feel pain around ear and jaw rplyy plz
How are you today? I ask bc.I got this Ramsay Hunt Syndrome,on Friday March 24... And it is Sunday March 26 today. I've been hospitalized,but now I'm home,with medicine and some Factual things I need to practice 10-20 times a day... I am in my mid 40's and consider myself as lucky,since it might aswell could have been a stroke.... I hope to gain at least most of my normal functions of the right of my face back,and I have guarded myself with patience.... ❤❤❤
I am doing well, I’m my case because I wasn’t treated for the shingles on time the shingles keeps getting activated in my system, the last occurrence in January. Other than that I’m doing very well. I’d just focus on resting as much as possible. I’d wait for exercises and such, just to give your body a break, but I know how scary and overwhelming this is. Vitamin b12 helps with nerve regrowth as well.
Hello , thank you for sharing
My mother has the same thing she is 56 years old and has DM2 and it’s been almost 3 months . Doctors figure it out within 3 days and gave her antivirus medicine immediately , but so far there is no progress and we are so worried that the damage is permeant . How long did it take until your face return to normal ?
I m having a Ramsey hunt last ten year I m not recover my face back.what can I do.plz give me some tips.thnx
I also have this disease from childhood.I am 18 now can it be treated?please reply..
Thanks for sharing story ❤️❤️❤️
Hi. I'm almost 6 months into the RHS. I've recovered 85 - 90%. My smile isn't normal yet and my eye is smaller than the other one. How much had you recovered at 6 months. Just really losing hope of complete recovery. I still have tinnitus and balance issues
Hey my friend I've got yhe same thing as well.. this is my second months i have it but i don't see any improvement.. what about you after how much time did you see improvement? Thank you
I've already recovered from shingles and facial palcy it's already a month but hearing loss and tinnitus is still there. Because of the shingles spread inside the ear my left ear drum ruptured... I'm really disappointed...
She is so inspiring.
So my dad has this and he can’t take the pain do you know any treatments at home for this like when you would get in a lot of pain
Hi,mam im suffering from samsay hunt ,my right side face lapsy ,how long time get take to recovery......pls
your so lucky, I was diagnosticated with S. R. H at 2006, and still have facial paralisis 😞 I can't smile, and think I never more will do, many doctors watch me hadbmany fisio teraph and nothing happend just get close my left eye finally after 2 years, but even cry every time I eat, ibgurss push nerv or something, whatever i realky don't know why I still have this paralisis in my face 😢
Hi, thanks for your encouragement. I've been suffering RHS for 4 months and I'm still into it. I noticed just a few millimetres of improvement... I've got a question: did anybody suggest you to make any vaccine to exclude a new activation of the virus? Thanks 😉.
@@cristinamaltinti4103 hi, are you talking about the shingles vaccine? My drs wouldn’t allow me to get it because of my age. Since this video I’ve had 3 more reoccurrences with shingles being active in my system. I now have antivirals on hand just in case another flare up happens. Thankfully RHS hasn’t repeated itself.
Thanks a lot, I'll talk to my doctor and I will take a decision about it but only after an year from the beginning of the symptoms... Here in Italy they suggest to vaccinate against the reactivation of Chickenpox, yes I'm talking about shingles vaccine...however I'm older than you I'm 58...thanks again for your answer🤗.
@@cristinamaltinti4103 you’re welcome, let me know if you have any other questions! Hope you continue to heal well, I know it’s a long hard process. If you’d like more support there is a Facebook group called: Ramsay Hunt Syndrome Support Group
@@TanyatasticTalks thank you 😘😘
Thank you for keeping us informed. Question? Did you get the shingles vaccine after having Ramsey Hunt?
I was advised to do so but wonder if it could trigger it again. It’s been a year for me, my face still pulls when I try to smile or laugh. My biggest problem now is balance , can’t move too fast cause I can easily loose my balance. Vertigo
By the way I’m 72
I did not. My doctor said I was too young to get it as there isn’t enough research for people under the age of 50 and its efficacy. Sorry to hear you’re still experiencing tough symptoms. I understand your concern, I’d be afraid too. I haven’t heard of people having it be reactivated from the shingles vaccine itself although there may be a reactivation of some pain etc but not long lasting from what I’ve heard.
I am 8 months into dealing with Ramsey Hunt....it's so exhausting, I've had enough of it !!
I know it’s a lot to deal with, i really hope you experience relief soon
Hola, qué tipo de terapia usaste para poder volver a sonreír? Llevo 4 meses después del síndrome y aún no logro mover nada de la mitad de mi cara 🥲
Creo que lo que ayudó a que mi cara volviera a la normalidad fue una dosis decreciente de prednisona. Por desgracia, cada persona se cura de una forma diferente. No recibí ningún tratamiento para la parálisis facial. El ojo fue lo que más tardó en recuperarse, incluso cuando el resto de la cara recuperó el movimiento. Ojalá pudiera ser de más ayuda.
@@TanyatasticTalks y cuánto tiempo tomaste la prednisolona?
Thank you so much for this encouraging video. I am currently on my 10th day with this virus. I caught it in 72 hrs for treatment. I still have facial paralysis an lots of dizziness. Can you tell me how long did it take you to recover?
Thank you for watching! You’re still early in recovery, I still had facial paralysis then and dizziness among my other symptoms. It took my face about 6 weeks to recover but my eye took a few months to close (which is normal) everyone’s system is different in terms of healing. My hearing hypersensitivity didn’t leave until I found treatment 2 and a half years later. I hope you recover quickly, rest as much as you can and avoid stressful situations as much as you can as well!
I was misdiagnosed with Bells Palsy but my symptoms shown it is RHS. I had antiviral for 7 days only. Its been two months now and im into Vitamin B12 only and therapy. Is it enough treatment for me?
Hola hace 9 meses me dio este síndrome, todavía no me recupero, quería saber a qué mes dejaste de tener sinconesias y recuperaste toda la movilidad?
@@jaimeblanco1216 Hola, mi cara volvió a la normalidad a los pocos meses pero tuve graves problemas neurológicos que persistieron durante 2 años y medio, algunos de los cuales sigo padeciendo más de 7 años después. Algunas personas tardan muchos meses o más de un año en encontrar una mejoría. ¿Tiene otros problemas de equilibrio, concentración, visión o audición?
@@TanyatasticTalks ahorita no recupero el movimiento total de la cara, problema de audición y movimientos involuntarios de la cara, todavía no logro sonreír por completo 😭
I'm happy you are are doing better.
Did at any point the hyperacusis or tinnitus go away at the beginning? like coming and going. I'm on day 33 and my balance ⚖ and face is way better but loud noises are an issue only sometimes and my tinnitus seems to be less loud. Seems transient. at it's peek I had a seizure do to a high pitch sound.
It's amazing that I'm not in psychiatric care just yet so intense.
It took a number of months for my tinnitus to calm down - my hypersensitive hearing was so intense for 2 and a half years. I found treatment that helped with that and all my other symptoms that you saw In this video. I’m now 98% recovered. Are you in Canada or US? I went to a specialist trained in functional neuroscience
@@TanyatasticTalks I'm now in Switzerland 🇨🇭 I spent 42mins in the MRI machine today, and my poor ears.
After 8 visits to the hospital in Canada they still said bells palsy.. Yeah right. So now I'm in Switzerland with real doctors and people that seem to care.
They took my blood yesterday and are testing for everything under the sun ☀.
They are concerned because I'm having involuntary muscle twitches all over my body to the point where it actually making my muscles weaker.
Massive mood swings also, fatigue.
I'm just hoping the twitching is stress but this has never happened before.
I was prescribed anti biotics yesterday because they noticed my right ear looked infected or red.
The paper for the MRI tech said suspected encephalitis.
@@Masterstockli I hope you find answers quickly!! Thanks for letting me know what’s happened, keep me posted!!
If for some reason they don’t provide treatment (if it’s FND) then seeing someone trained in functional neuroscience will hopefully help, as you know it’s changed my life
Do you have synkinesis or vertigo problems?
Hi! I was diagnosed with bells palsy last april 9, 2021 and a week after it became RHS when all those blisters on my left ear. Now seeing your recovery on this video, i wanna ask what are the treatments and procedure you have done to win the battle for recovery? Thanks for the response. Keep safe dear! 🙏😇
Hi! Firstly, I rested as much as I could, was off work because of all of this, so that helped. Vitamin B12 - I took that every day as it helps with nerve regrowth. I had a lot of pain that persisted and intensified, took medication for that but what really helped was seeing a chiropractor who has further training in neuroscience- you can see the treatment on the playlist I have. I developed a horrible neurological condition because of RHS but thankfully found treatment for that and it helped with hearing hypersensitivity that I had that was left over from RHS and the pain as well.
Anyone got tinnitus after Ramsey Hunt? My face come back to normal but my left ear is tingling and ringing. Also get tired easy and ringing? Is there a fix?
You may benefit from seeing someone trained in functional neuroscience like the centre I found treatment at - Ottawa Performance care. Depending on where you live you may be able to find a centre like them. They are affiliated with the association called IAFNR
Hi , 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 , I am having more trouble eating/talking and ear still hearts but not as bad. I am going to try to sleep longer as recommended by another youtuber wit RHS 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 did you do acupuncture? Please let me know if anything, Thank you. BTW you look like you're doing really good through out this really hard experience.
Hope you’re feeling a bit better this week! I didn’t do acupuncture for my face. My ear didn’t get majorly swollen, my neck was a bit and took some time to go down (where the nerve shoots out from the ear - beside the jaw. What I feel helped save my face was being on prednisone for a few weeks so it gave my body and system a break to recoup. Resting, yes, is super important and to not engage in things that stress you out as that can make some symptoms more intense- like pain, tiredness etc.
@@TanyatasticTalks Hi and thank you for your reply. My ENT doctor tapered down the prednisone after my 5 day course was finished to 50mg x 2 days 40mg x 2 days 3mg x 30 days etc. until finished and I had to literally beg a neurologists who is in the same network to bring it back up. I was down to 20mg x 2 days and I am back to 60mg x 2 days 50 x 2 days etc. until finished. They also took away Valactclovir which I took for 7 days and I was only able to get 3 more extra days. I don't know if there is a test to show that the virus is gone, did you have that test? I feel my medical team has very little experience or they just don't really care. From all the reading I've done it seems like a lot of people continue to use both medicines. I was wondering for how long did you take each one and how much did you take. Thank you in advance and thank you again for your reply
@@gogoluna1983 I was on Prednisone for a few weeks - I think it was 40 mg for one week, then 30, then 20 then 10, but I'm not exactly sure of the dosages but I was tapered off well. Hope you have seen more recovery!!
@@TanyatasticTalks Hi, I got some movement around three weeks in and I am at about 55% movement now, the movement came back and it sort of stopped but seems to be progressing very slowly. Unfortunately my other side is feeling numb and I am also having spasms on that side and some tingling in my ear just like the my afected side and spasms, even my good eye is dry too.
My limbs are also numb with some pain, I had a hard time extending my antivirals as my doctor, ENT and Neurologist don't know anything about RHS a they say there is no more evidence of shingles to continue taking them. I bought a book written by ENT doctors and clinics (fix my face) that treat facial paralysis and also read on several places from clinical studies that RHS patients should get at least 5 weeks of antivirals to have a better outcome and I only got them for 7 days then I asked for more and got 3 days more days then asked for more and this time I got another 7 days tapered at half dose but I don't think that was enough. I've been off the antivirals for a while now a d I feel like the virus is stronger than what is should have been by now.
I have RHS and I'm feeling so hopeless about it. My face is constantly on fire but numb at the same time. But the worse is the facial paralysis that justs gets to me. It's been almost a month+ I have not recovered any facially function
BAMBAMM1 it takes time unfortunately, rest as much as you can and try to avoid stressful situations as much as you can. I hope the pain decreases. Hopefully they can maybe put you on nerve pain medication to help
Justin brought me here 🥺❤️
can JB be cured 100% or not 😞😞
JB is working on himself. We all hope he will be okay but his lifestyle may also contribute to it too.wish him and his family well.
I have been suffering from this for the last 10 years on and off minus the paralysis! The shingles seems to be localized thank God but it’s triggered from stress and boom I get an outbreak in my ear 👂 the outer part...I wish we didn’t have to go through this
We gotta be so careful about our stress levels! Whenever I get any type of pain in my ear whether it’s nerve pain related or whatever, or any bump, I always think oh no is it happening again?
Tanyatastic Talks yes I am making an appointment with an Infectious Disease Dr to get tested and see if I qualify for some sort of vaccine to prevent it from coming. The longest I have gone without it has been 3 years and then if I get too stressed it comes back, its so annoying and completely debilitating 🙄😰😰. I also picked up MRSA infection in my hand one time about 4 years ago from a simple pimple so that’s why I want to make sure things are Okay with my body or at least find out what’s out of balance! Taking antibiotics only makes matters worth for an already compromised body...good luck with your situation and I hope you never get it again! 🙏🏻
Question: Do you think it's safe for me to work out? I like to Cross Fit.....is this advisable or is it considered as physical stress?
Hi Lisa, how far are you in your recovery? Depends on if you’re having balance issues or intense fatigue but I’m no doctor
Juuuuustiiiiiiiinnnnn
Hi , have started my journey with RHS. Did you take any physio therapy for treatment.
Kirthi Kiran Jupelli Hi no I did not, but I know it’s recommended to wait many months before trying anything like that. If you start too early there can be a risk of synkinesis
Thank you
My doctors have recommended physio therapy, and is been 2 weeks now. I have started within days s time , after my face nerve has effected. My eye is not completely closing, cannot blink and had to tape it.
I love you so much please stay healthy and save
Thank you for your sharing. Did you experience mastoid swollen? I am still waiting for my lab result... 😔😔😔😔
Fluffy虎虎 Hi, I don’t know if I did, the 2 MRI’s I had I don’t think showed that being swollen but it could have happened- although I didn’t have to have anything drained. From what I know it was my 7th cranial nerve that was completely swollen, my neck and jaw area were swollen because of it and a lot of pain in my face, neck, jaw, ear. It was awful. I wasn’t given medication for the pain so that made my long term recovery worse.
Hope your lab result comes back okay
@@TanyatasticTalks Hi i suffered from Ramsey hunt too :(.Glad to hear you recovered .Its been 1 month and my face is back to normal , but still have vertigo at times and some strange weakness in my neck .My question is do you think that swollen nerve is cousing that weakness in my neck ? And did you guys experience that too ? Thanks
@@marinpetrov629 I’m not sure but I know you’re early on in the healing process. I’d continue to monitor what you’re feeling and see if maybe you can make an appointment with your doctor or an ENT specialist to follow up on what you’re experiencing.
If the vertigo doesn’t subside then see if you can find a specialist in vestibular therapy or in functional neuroscience where you live.
Anyone else here because of Justin? He will recover and anybody who has this In Jesus' Name! This vid gives us hope .🙏🙏🙏🙏🙏
Seems to me 100%recover
I got this dizziness since one week now and sometimes my right arm feels heavier and i just experienced a little numbness on my right jaw i went to the hospital and did some neurological tests they were 100 percent good,but this numbness on my jaw it really scared me and when i touch the floor with my head i feel the pressure on my ears but i had that checked too and they saw nothing
Did you have any of these signs?
Just for the record i dont have any pain at all except light pain 2 to3 times on my right ear and its gone now
Thnx
menar davud I haven’t had your specific symptoms but is the numbness in your jaw when you touch your face or as if you can’t move it? Is it constant or does it come and go randomly?
@@TanyatasticTalks no i can move it without problem but i can feel the numbness it goes and it comes
Nice case never seen one in my practice nice smile though 😊
Justin Bieber brought me here.
Hello!
Justin Bieber got me here happy to get some understanding 🙏🏾 thank u ❤️
Did you lose your hearing in the ear?
No I developed hypersensitive hearing - had to wear noise cancelling headphones for 2 and a half years
Justin 🥺
Anyone Come here bcs justin ?
It's caused by herpes zoster virus?
Yes the shingles activates in the ear and then causes facial paralysis on that affected side.
@@TanyatasticTalks ok
Did you experience crocodile tears?
No I did not - however my eye took a long time to close fully which is often the case with RHS sufferers
❤️❤️
Hey girl! Just FYI, Justin Bieber just got Ramsey Hunt and announced it
Yes I definitely saw, hope he recovers asap
I came here after watching justin biber
Who's here after Justin Bieber's reveal ♥️
Justin Bieber
I can to your channel after watching Justin Bieber's latest new. I hope you and Justin get well soon. Thank you.
I hope Justin Bieber heals up well from this too.
amigo dei uma olhada rapida sobre seu problema, veja essa americana, q passou pelo mesmo problema q vc esta passando, th-cam.com/video/LHmiO-hgi4A/w-d-xo.html siga o tratamento vc ira voltar seus movimentos,
Eu sou canadense :) obrigado por assistir ao vídeo e tentar ajudar outras pessoas 😊
Bieber
Can u please send me your email I'm a patient since 2017