Ramsay Hunt Syndrome 5 years later
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- čas přidán 16. 06. 2024
- Can you believe it's already been 5 years? Watch to see how I'm doing and where I'm at in my life. If you're struggling, you are not alone.
#Ramsayhunt #ramsayhuntsyndrome #chronicillness
Keep your head up and bravely walk through life. I too had Ramsay Hunt syndrome 2 and a half years ago. My face is 90% back. I still have some minor effects but we don't need to go back. Only unlike you, I had a rash in my mouth and tongue, not on my ear. I know what you've been through. Thanks for sharing this video.
Hi Tanya. It’s reassuring to know that I’m not alone in suffering the after affects of RHS. I was struck down with it in October 2022. Completely out of the blue.. no prior illness or stress. Initially before the paralysis I had a week of excruciating ear pain resembling an icicle being driven into my right ear. Then I woke up with the paralysis and numbness. The early symptoms were pain, lethargy, vertigo and a feeling of disconnection with the real world around me, as if I was living a video game!
Thankfully those symptoms have gone now and I have regained about 90% of my fascial muscle control. Drinking from a bottle is still a challenge and I don’t think I’ll be whistling any time soon. Occasionally I get a dull ear/headache that worries me. I dread the return of the syndrome. I was given steroids on day one but only started antivirals on day six as the ear blisters only appeared then. I worry that this delay might have negative effects on my recovery. All my research only offers advice for treatment immediately after the attack but no advice on how to prevent a reoccurrence of RHS. This plays on my mind greatly. Can you offer any advice on preventative measures?
Regards
Liam
Re the whistling - I miss this at work when I'm on my own 😢 We also have a dog and I still forget when we're out that I can't whistle 🤦♂️
Hello Tonya,this is the third video of yours that I watched. I have shingles it is very painful. 💕NonnaGrace 🐓
Thanks for this update, helps a lot!!
Wow you are a fantastic speaker. So well spoken and kind.
I just looked you up because I thought you may be a news anchor I saw on TV last night! So glad to hear you're doing well!!!
You look and sound great! Thank you for your videos and your update. I will say as someone dealing with RHS finding your videos when I was diagnosed was incredibly valuable and informative. So happy to see you doing well and thriving in career and living. We ARE a global community of RHS warriors that need each other’s support. Sending love 💕🦓
(zebras represent rare diseases for anyone wondering)
Thank you for sharing ❤
I’m so grateful to you for your candidness & boldness to show yourself on camera and share your thoughts and experiences.
I was diagnosed with Bells Palsy, but then quickly realized (through my own research) that I actually had RHS.
It’s almost 6 weeks now. I went to ER first thing in the morning when I noticed my lips not pursing. Had a dose of steroids and antivirals.
My pain subsided after a few weeks. Still some, but not as bad as it was.
I have little pustules all over my skull, mostly the right side (paralyzed side), and in my ear and on my neck.
My questions are:
1. what tests can be done to see if you still have the virus raging in your body?
2. Can they test to see if your nerves are dead?
3. Should I see a Neurologist, ENT or only someone in the same group as your guy?
Hi! Thanks for the video and I'm glad to know the progress you've made!
I hope everything goes well for you now
Oo and btw Mika looks so cute ;)
Hi Mika!❤
Great to hear you're doing so well now.
I'm just shy of a year in, still have intermittent tinnitus and sensitivity. Facially I'm still struggling with my eye care and mouth tingling. If I'm eating or try talking a lot, my eye drops closed now rather than being wide open. I get twitching of the eye when tired too. ENT say I'm doing well and a year+ is normal for full(ISH) recovery.
Thank you for your posts, they really helped during those dark early days.
Stay well 🤗
So glad my videos were able to help Mark!! My hearing sensitivity can still act up if my nervous system is in a heightened state. Hope your recovery continues to go well and you continue to see progress!!🦋
thank you very much for sharing. I feel less alone knowing that other people have experienced the same symptoms. It's been 2 years now for me. I made a lot of progress by working very hard. I'm even back to work full time. I still have a lot of difficulties and fatigue because my brain works very hard. My left vestibular system is dead. I would like to participate in studies on the disease because here in Quebec it is not well known. if anyone has any information, I am ready to travel to improve medicine. thank you very much.
Thank you for the videos. I'm 3 months into RHS & Bell's palsy. Your videos give people hope that life will return to normal.
Did you get the covid vax? Wife did and now has RHS
@@frankzonneveld7946 no
Tanya you are such an inspiration. I was diagnosed with RHS in December of 2019. I am physically 90-95 recovered, but mentality and emotionally still struggle. Miss my old life, job, face etc...Family/friends don't understand the impact this has had on me. Don't know how to embrace my new life. I know I am futurnate, but still angry. How do I move on?
Our identity from before RHS compared to after is a tough process. It's normal to feel angry and confused. I, myself, leaned into the emotions I was feeling. The more we try "not" to feel something, we often then just feel more of. If there's a way for you to feel safe in sharing with family/ friends in a way they could consider what it's been like for you could maybe help in time, as that's also a process to get through. Finding things that help you not feel so alone in this journey can also help. Best wishes to you!!
Your brave good luck !!
I am thankful I found your posts here. I came down with RH in May of 2021. I have some lingering paralysis in my face and similar to what you describe - it feels bad underneath, especially when stressed. Question, did you ever try Botox? I am guessing not since your face got better very soon. Do you know of others that got Botox? I did. My first round went okay but my 2nd and 3rd not so much as they tried higher doses. Would like to know your thoughts about what if anything you know about Botox. I am thinking about discontinuing further doses.
I just got diagnosed two days ago felt the symptoms kicking in for two days before I got the anti viral and steroids I’m able to close my eye a bit and have some movement not total loss.. my luck got a big day coming up and this just rained down it’s life tho this journey makes ur stronger thank you for your videos
28 years old and never thought this could just happen I mean you just wake up one day and boom life as u know has changed
Totally get you, I was 27. Hope you can rest as much as you can and recover well!
Hope you are doing okay in 2023.
Since my diagnosis of RHS, I've had time to read about RHS & learn about it.
I've always been a "numbers guy", meaning I like to look at data and make comparisons.
Let me put this into perspective.
Today in the USA, roughly 2,466 people will be diagnosed with heart disease in just this one day (24 hours).
This week, roughly 36,538 people in the US will be diagnosed with cancer.
In the next year, 365 days, less than 17,000 people in the US will be diagnosed with RHS.
Most people just don't understand the entire aspect of RHS. (BTW I was misdiagnosed with an ear infection 3 separate times over 6 days) In my case, the vertigo & loss of balance was so bad that I was stumbling/falling so often that I had to use a cane to walk. The vertigo was so bad that anytime I tried getting up to go to the bathroom, the nausea kicked in & I was vomiting. The constant vomiting caused me to become dehydrated. Dehydration can cause kidney damage, which why RHS should be treated very, very seriously..
Thank you for sharing your story. I was diagnosed with Bell's Palsy two days ago, started on antiviral and prednisone. However, I am still experiencing severe vertigo and ringing in my ear, this morning I woke up with ear pain and notice lesions in my ear. Research led me to your videos and I'm quite sure I have RHS..I am praying for full recovery everyone experiencing this🙏🏼❤️
Really hope you recover fast! I know it's not easy. Let me know if you have any questions about any of it!!!
Hi Jessica, I highly suggest that you watch this video (czcams.com/video/VO2cN8FTpS4/video.html) immediately. If you have been misdiagnosed, which is common, it could make the difference between full recovery and a life of misery. Most doctors are ignorant of the latest research and just follow outdated protocols. You MUST take charge and not passively expect to get proper care. In a case of Ramsay Hunt, too much is never enough. Good luck and I wish you a rapid and complete recovery. It took me 14 months to learn that I had been misdiagnosed and believe me I am paying for it.
@@TanyatasticTalks right now I'm just overwhelmed but trying so hard to stay positive, I've also joined the fb support group. I'm taking this one day at a time and pray for the best. Thank you❤️
Hi Tanya i wanna ask you about Ramsey Hunt .. how much time it took you to recover from it and had full control of ur face again ... since its been a year now that i had the same problem and i could only move my cheek part but still very low control on other parts .. so hope i can hear ur advice about that .. i will be very thankful to read about treatment cause some people say that its very late to have full control of ur face like the way i used to do .
Thank you for sharing I've just come across your video I have the same problem my left side is kinda paralyzed I can't hear or close my eye or make facial expression I have had it since 2019 been on medication and nothing has improved
Sorry to hear that, it’s a difficult thing to go through for sure
I m following you since i come across your video 3 years ago I have Fnd Rhys cfs can you please tell me are you on any diet or food wise x congratulation on baby Mikkia i feels so alone within trap in my body love ur words love x
Her doc said keto. Cut out carbs and eat clean. He also put her on curcumin and glutathione. We have to get rid of our inflammation.
I'm 1 year From onset of Ramsay Hunt. I've been experiencing fatigue, dizziness with horrible headaches and some neck pain. All these symptoms started about 3 months ago and have been getting worse. What type of medication and or treatment did you receive? The pain is getting to the point where it's effecting my career and taking a toll on my family. Any help would be much appreciated.
I’m on gabapentin for the nerve pain. I had been on Lyrica for a few years but it stopped working for me. I received treatment from a place called Ottawa Performance Care, if you contact them, depending on where you live they may know of centres that do what they do near where you are.
I had extreme fatigue, nerve pain and a bunch of other symptoms that you can find in other videos. I have a playlist about the treatment that I went through that can give you a lot more info than what I’m able to write here. I know it’s an awful experience! Really hope you’re able to find some answers and relief. To me (and I’m no medical professional) it makes sense that you’re experiencing some of these symptoms, we don’t know how our systems/ brains are going to try and process and make sense of all that has happened to us.
♡
Just watched all your videos on Rasmasy Hunt, I was diagnosed with it a couple of months ago. Can you confirm if you ever got your taste back on the effected side? I’m lucky and was diagnosed very quickly so have no lasting effects other than loss of taste. Thank you 😊
Thank you for watching, just finding comments I never replied to now! I hope you’re doing better now. Yes, I got my taste back on the affected side, no problem with that
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. Please i send this same message to your other video link. Hopefully i I will hear from you. I really happy to see you like this.
I would look into Vestibular therapy - that will help with balance and in calming your nervous system down. Depending on where you live there often are centres that help deal with vestibular issues etc.
@@TanyatasticTalks you are such a beautiful soul to have responded. I live in Nigeria, I don't know whether the ent doctors here are not really familiar with stuff like this,I have seen two ent consultants and two ent residents doctors,none has given me any information on what to do, they all said *nothing can be done about it.* Is really discouraging,that is to say, I should go and live with it? Please from your experience are there any exercises or proscription,or things to avoid or do ? Thank you very much.
🥰🥰🥰
Thank you,I just googled and got some exercises for vestibular system. I am grateful my dear friend 💞.
God bless you, I always open page when discouragement is setting in, so as to be strengthened and encouraged again
❤ 5:07
Таня, здравствуйте! Вы отлично выглядите.
Сколько времени восстанавливалось ваше лицо?
Hi! It took about a month and a half for my face to look almost normal again but took my eye 4-5 months to close properly. I credit that with getting prednisone on a tapering dose
@@TanyatasticTalks у Вас прекрасная улыбка. Через сколько она стала симметричной?
У меня это случилось 8 месяцев назад, так лицо почти восстановилось, но улыбка немного асимметричная
@@user-bn8lk4lo5u my smile took a month and a half to two months. I was fortunate it came back so fast. Yours can still come back, some people don’t see a lot of improvement in a year. Synkinesis can develop where the nerves regrow incorrectly which can result in asymmetrical issues in the face. Some people get Botox to help with the pulling sensation that can happen because of facial paralysis. This can help the appearance of symmetry in the face
Hola, hace 2 meses me dio Ransay Hunt, estoy con terapia sin embargo sigo con la mitad de la cara completamente paralizada, ya estoy desesperado ya que no veo mejoras, que me recomiendas hacer?
Hola, todavía estás muy al principio de tu curación. A menudo se tarda unos meses en ver progresos. ¿Te han dado la medicación adecuada? Controlar tu estrés y tomarte tiempo para descansar te ayudará. La vitamina B12 puede ayudar al crecimiento de los nervios.
@@TanyatasticTalks sí correcto, ya el virus no lo tengo, ahora estoy con terapia, y también me inyectó B12, le agradezco mucho la respuesta que me brindaste.
Dear Tanya! you look so good thanks for the video! I suffer from horrible tinnitus. have you had this?
Yes I have, it’s not fun!! I still experience it but it’s on a lesser level than a few years ago!
Thank you for your reply and I'm glad you're better! what helped you cope with the tinnitus when it was really hard?@@TanyatasticTalks
Thank you for your reply and I'm glad you're better! what helped you cope with the tinnitus when it was really really hard?@TanyatasticTalks
@@user-uz1wy7ku6b I used noise cancelling headphones a lot before I found treatment that helped calm my nervous system down, which did in turn reduce my tinnitus. I still experience it now but it's livable. Having background noise to take your mind off of focusing on it all the time also was helpful. If you check out my other videos you can find out more about the treatment I received. I had other neurological issues I was dealing with and so we weren't sure if anything about my hearing would be improved upon or not (tinnitus and hypersensitive hearing).
Sorry to reply so late, but I want to thank you very much for your reply. I think I found your video where you talk about this treatment. Could you write down the exact name of the treatment so that I know for sure if I have found a good one.
Hello my wife has ramsay hunt syndrome and her 7th cranial nerve is damaged and other nerves. She get this pressure in her head that makes her rock back and fourth and shake do you have an idea what could help also her dr has her on verapamil to keep Inflamtion down but it's not working what can she do or some help. Thanks Mr.Garcia
My gf got these shots from mexico called combedi dx. We tried a lot of things but this helped with getting movement back and relieving pain. It helps that we live near the border. Im not a doctor by any means. Just sharing what we did as last resort. Hope your wife is doing better now.
Please answer me. 10 years ago my mouth is happened Ramsay hunt sydrome I'm 27 ,can you help me, I'm tired, I've lost my confidence, what should I do, I hate myself. Am from Ethiopia 🇪🇹 appreciate
Find the positive in the now as hard as that may be, I know i cried A LOT today. Try not to stress. Possibly get on antidepressants or anxiety med of some sort for a while. Eat healthy clean keto, lower your Inflammation. Detox .. look into curcumin and glutathione. Love yourself no matter what. God bless you!
What name of the clinic in Ottawa?
Ottawa Performance Care
How Long does it takes to finish this
It’s different for everyone. Sometimes your face can take a month and a half to recover, or a few months or a few years. Everyone’s system is different in how it heals
@@TanyatasticTalks I wish everybody the best
And got health
Sorry for my Englisch 🤣
Thank you very much for your answer
@@daaridaari9300 I wish your brother a healthy recovery!! Greetings from Canada