I was misdiagnosed late jan 2024 with Bells Palsy, only to be diagnosed with RHS a week later. Although I was prescribed steroids i wasn't given any antiviral medicine until a week later. I find your find journey with RHS very inspiring and has given me hope. Thank you for posting your video.
I was diagnosed november 2020. Still haven't fully recovered. Recurrent shingles is ear over several years and finally turned into full blown Ramsay hunt. I couldn't get the help I needed when diagnosed in november because of. Covid - it was horrible! My whole life has been turned upside down. Thank you Tanya for being my voice! Your videos are so 100% my voice. I am frustrated because my family doesn't understand my pain-ect I live with. I have a team of drs but even some of them don't understand either. So frustrated.
Got RHS last month in my left ear, have all the symptoms that you had/have. Has been a horrible month, thanks so much for sharing your story it has inspired me a lot. I can see that it will be years before I make a full recovery if i ever do. 32 year old male. The hyperacusis is really bad but at least the pain is gone which was horrible. All the best.
I'm glad I watched your channel ☺️ I was diagnosed with bp in 2017 but I'm going to go see another neurologist to see if it could be the condition you had. I've tried chiropractor treatment,b12, steroids and acupuncture. I'm sure I will figure it out. thanks for sharing!!
Thank you so much for sharing this information I had facial paralysis back in May 24, 2020 and they diagnosed me with bells palsy but I have many of your symptoms
Hi, Thank you so much for making these videos . I had it 9 Years ago on left side, then this past Saturday night again on right side, I know right ? Wtf. I actually watched it happing in the mirror, went directly to ER got Pred & AV. Anyway I just wanted to say thank you, it’s really nice to listen to & see someone that’s recovered so well. 👊🏻👊🏻. Cool channel BTW
You've been so helpful and enlightening! I'm on day 8 of this illness. Got the official Ramsey Hunt syndrome on day 6. God bless you for sharing your story as you move forward.
I’m in my second week with Ramsey hunt syndrome and shingles on my right side of my face. This sickness is very painful because I have both things the pain in my jaw and this sores in my face plus my eye (R) is complete swollen 😫😖I’m think 🤔 it was a time where I cry 😭 about too much pain! But thanks God that I didn’t have damage in my face only I still have headaches and my eye gets tired and a little swollen!
Thank you for posting! It's comforting to see someone doing so well that has this difficult syndrome! May i ask what treatments you underwent and the general time from of those treatments? Im about 6 months post onset - and doing OK - thanks!
I got RHS back in 1997 following the birth of my 3rd son since then I’ve had endless attempts to ease the pain from acupuncture, alternative medicine to GON injections every 3 months and regular meds. Now over 23 years later and still on the meds and injections the pain has become excruciating in the last couple of months. The neurologist changed the injection and the new one is supposed to be every 6 weeks ( I should mention they are bi lateral) but the pain is still no better even after a increase in medication. I’m a full time carer to my disabled son with no help and I am constantly sleepy and tired . Though the neurologist doesn’t like me to take painkillers on top of the prescribed meds my GP is very sympathetic and understands my difficulties so prescribes me cocodamol . I have to take 2 of these 4 times a day to function and look after my children. To get an appointment with my neurologist is like getting blood from a stone . It’s a year away from now ! The pain in my ears is horrendous and I’m getting things all mixed up ( getting dates wrong etc ) . I’m also pretty giddy and nauseous most of the time . Unfortunately I also have hypothyroidism which is seriously annoying. This is the first time I’ve looked up to see if anyone else suffers anything like myself because I feel no one understands and thinks I’ve got a migraine. I do not have a migraine I actually wish I did :( Some days i really don’t want to take any more and feel there’s something about to snap in my head and once it does that’ll be the end of me . I’ve really had enough .
Tanya hi.My daughter 3 months with palsy Ramsey hunt but I feel good not pain or dizinnes..stay hospital 10 days.recovering not yet..Sorry for English.kisses from Greece🇬🇷😍
Hey girl! I was diagnosed with ramsey hunt about 6 months ago. Would love to chat if you are open to it about what you were experiencing and how you dealt with it. Let me know!
Really depends on the person, age plays a factor, overall health before RHS, if he is able to rest and remove stress from his life. If he was able to find treatment early in the process versus being misdiagnosed or treated late with medication
I got Ramsay hunts syndrome before I gave birth.. and I’m in 6 weeks of face paralysis.. I did therapy but stop now cause it’s to far and I need to take care of my baby. What best treatment for this ? Hope for your reply
I’m going through the same syndrome at the moment. It’s about six months since I was been diagnosed. And the whole process was awful and I was deeply depressed. Can you share some of the treatments that you think it works on you to make ur face better? I am getting better but just very slowly. 😭😭😭
Hi Olivia, I know it’s a horrible process. I didn’t do any treatments on my face specifically. I know that for some people they only experience improvement in their facial nerves and movements at 6 months. I took vitamin b12 to help with nerve regrowth. Are you experiencing any pain??
@@TanyatasticTalks Thank you for replying. I only feel painful when I press my face hard, especially on parts of face where they’re not completely recovered, like nostril, jaw. I got some steroids and antivirus after I got the syndrome and keep taking vitamin b1 and mecobalamine for six months. Also, I was doing a lot of acupuncture and some electrical stimulation which I wasn’t sure if it makes me better or worse. My face can move now, but just not as good as before. I can’t smile the way it did before (looks ugly). And I found facial muscle atrophy on my left face. It’s hard for me to accept what I look like now, so I am still seeking treatments. Don’t know if there’s any operation in repairing the nerves.😭😭😭😭
Thanks Tanya! I appreciate your videos. I'm 18 months in RHS and all of a sudden my fatigue is overwhelming. Did you find that the fatigue comes and goes?
My fatigue was getting worse. I also came down with a different condition because of My brain being caught in this unending loop. Do you have any other symptoms? The treatment I had really helped with my fatigue. I felt like I had been hit like a truck every day, the feeling would never leave. Couldn’t do more than an hour of multiple people in a conversation. It was really tough.
@@TanyatasticTalks I need to look into that treatment more - I previously messaged you about it but investigated and found it expensive. However, my other symptoms still persist (painful ear which is sensitive to high-pitched noises, and walking in wide open spaces is a real challenge due to whatever is going on with my vestibular system). So - once this lockown ends, I will call them again!
I’d say it’s worth it, way cheaper than $10,000 programs I previously looked into. Do you live in Canada or the states? Maybe it depends where you go. Mine was less than $1800 for me, it is still money, I understand. It’s resolved my balance issues etc. I’ll be making a video about my progress 7 months post treatment this week
Can you share with me how you handle stress and what effects it has on you. I am about 1.5 years through and I find that my face tightens up when I am emotional or dealing with stressful situations at both home and at work. What have you done to minimize this? Thank you!
Awesome question, I should make a video about this since there are some updates on my end. Part of me doesn’t always know I’m stressed but my body will definitely tell me when I am. I have other neurological symptoms that show up for me like a hand tremor that will let me know my nervous system is on high alert. So it’s all interconnected. How I try to help myself is to validate the stress of anxiety I do feel in the moment instead of trying to push it away. I try to also find thing that are able to bring me joy and calm, whether that’s through art or a walk around the block. I do have people I’m able to talk to when I am in periods of high stress. I’m recovering from a 3rd bout of the shingles again, my nerve pain shot up immensely and my sensitivity to sound was more pronounced, that allowed me to take inventory of what was happening in my life even in terms of cumulative stress that built up that I guess part of me wasn’t able to release. My body acts like a barometer that allows me to check in with myself to see what’s really going on underneath the surface.
MJ no I didn’t do acupuncture. I have a playlist of the treatment that I received here: ua-cam.com/play/PLA1cah_mP4cP70X1KnfiJa1aulxCWGZ6C.html I’ll be doing an update this week 7 months post treatment
I was misdiagnosed late jan 2024 with Bells Palsy, only to be diagnosed with RHS a week later.
Although I was prescribed steroids i wasn't given any antiviral medicine until a week later.
I find your find journey with RHS very inspiring and has given me hope.
Thank you for posting your video.
Thank you for watching, glad it spoke to you and I hope your healing journey is swift!!
I was diagnosed november 2020. Still haven't fully recovered. Recurrent shingles is ear over several years and finally turned into full blown Ramsay hunt. I couldn't get the help I needed when diagnosed in november because of. Covid - it was horrible! My whole life has been turned upside down. Thank you Tanya for being my voice! Your videos are so 100% my voice. I am frustrated because my family doesn't understand my pain-ect I live with. I have a team of drs but even some of them don't understand either. So frustrated.
Got RHS last month in my left ear, have all the symptoms that you had/have. Has been a horrible month, thanks so much for sharing your story it has inspired me a lot. I can see that it will be years before I make a full recovery if i ever do. 32 year old male. The hyperacusis is really bad but at least the pain is gone which was horrible. All the best.
I'm glad I watched your channel ☺️ I was diagnosed with bp in 2017 but I'm going to go see another neurologist to see if it could be the condition you had. I've tried chiropractor treatment,b12, steroids and acupuncture. I'm sure I will figure it out. thanks for sharing!!
Thank you so much for sharing this information I had facial paralysis back in May 24, 2020 and they diagnosed me with bells palsy but I have many of your symptoms
Hi, Thank you so much for making these videos . I had it 9 Years ago on left side, then this past Saturday night again on right side, I know right ? Wtf. I actually watched it happing in the mirror, went directly to ER got Pred & AV. Anyway I just wanted to say thank you, it’s really nice to listen to & see someone that’s recovered so well. 👊🏻👊🏻. Cool channel BTW
Brandon Crutchfield oh no! I hope you recover quickly!! Hope the pain isn’t totally horrible! Thank you for watching
You've been so helpful and enlightening! I'm on day 8 of this illness. Got the official Ramsey Hunt syndrome on day 6. God bless you for sharing your story as you move forward.
Thank you! Hope you heal and rest well, if you have any questions please feel free to let me know!
I’m in my second week with Ramsey hunt syndrome and shingles on my right side of my face. This sickness is very painful because I have both things the pain in my jaw and this sores in my face plus my eye (R) is complete swollen 😫😖I’m think 🤔 it was a time where I cry 😭 about too much pain! But thanks God that I didn’t have damage in my face only I still have headaches and my eye gets tired and a little swollen!
Really hope you feel better soon. I know it can feel like it won’t end but it will calm down with rest and time. 🦋🦋
Thank you for posting! It's comforting to see someone doing so well that has this difficult syndrome! May i ask what treatments you underwent and the general time from of those treatments? Im about 6 months post onset - and doing OK - thanks!
I got RHS back in 1997 following the birth of my 3rd son since then I’ve had endless attempts to ease the pain from acupuncture, alternative medicine to GON injections every 3 months and regular meds. Now over 23 years later and still on the meds and injections the pain has become excruciating in the last couple of months. The neurologist changed the injection and the new one is supposed to be every 6 weeks ( I should mention they are bi lateral) but the pain is still no better even after a increase in medication.
I’m a full time carer to my disabled son with no help and I am constantly sleepy and tired .
Though the neurologist doesn’t like me to take painkillers on top of the prescribed meds my GP is very sympathetic and understands my difficulties so prescribes me cocodamol . I have to take 2 of these 4 times a day to function and look after my children.
To get an appointment with my neurologist is like getting blood from a stone . It’s a year away from now !
The pain in my ears is horrendous and I’m getting things all mixed up ( getting dates wrong etc ) . I’m also pretty giddy and nauseous most of the time . Unfortunately I also have hypothyroidism which is seriously annoying.
This is the first time I’ve looked up to see if anyone else suffers anything like myself because I feel no one understands and thinks I’ve got a migraine. I do not have a migraine I actually wish I did :(
Some days i really don’t want to take any more and feel there’s something about to snap in my head and once it does that’ll be the end of me . I’ve really had enough .
Praying for you. I’m sorry you’ve had so much pain. I really hope you’ve had some relief.
Tanya hi.My daughter 3 months with palsy Ramsey hunt but I feel good not pain or dizinnes..stay hospital 10 days.recovering not yet..Sorry for English.kisses from Greece🇬🇷😍
I pray for a quick recovery!! Rest is one of the most important things in the beginning of recovery!
@@TanyatasticTalks Thank you so much.Καλημερα💞
Are you sure it’s not Trigeminal Nueralgia? I’v had TN for 5 years now and I have so many of the same symptoms.
Hey girl! I was diagnosed with ramsey hunt about 6 months ago. Would love to chat if you are open to it about what you were experiencing and how you dealt with it. Let me know!
For sure, are you on the Facebook group for Ramsay Hunt Syndrome Support?
Hellous! is there any face/head/neck exercises you can do to make the healing proses faster?
How Long time does it take to get better?
My brother got it now
Sorry for my Englisch
Greats from netherlands
Really depends on the person, age plays a factor, overall health before RHS, if he is able to rest and remove stress from his life. If he was able to find treatment early in the process versus being misdiagnosed or treated late with medication
I got Ramsay hunts syndrome before I gave birth.. and I’m in 6 weeks of face paralysis.. I did therapy but stop now cause it’s to far and I need to take care of my baby. What best treatment for this ? Hope for your reply
Hi Ms. Tanya! 😊 I’m on my Day 6 today. May I know if you underwent to any Acupuncture Therapy? Thank you! 😊
I am doing it 3 days now. The lady said I need at least 10 sessions. Good Luck!
I’m going through the same syndrome at the moment. It’s about six months since I was been diagnosed. And the whole process was awful and I was deeply depressed. Can you share some of the treatments that you think it works on you to make ur face better? I am getting better but just very slowly. 😭😭😭
Hi Olivia, I know it’s a horrible process. I didn’t do any treatments on my face specifically. I know that for some people they only experience improvement in their facial nerves and movements at 6 months. I took vitamin b12 to help with nerve regrowth. Are you experiencing any pain??
@@TanyatasticTalks Thank you for replying. I only feel painful when I press my face hard, especially on parts of face where they’re not completely recovered, like nostril, jaw. I got some steroids and antivirus after I got the syndrome and keep taking vitamin b1 and mecobalamine for six months. Also, I was doing a lot of acupuncture and some electrical stimulation which I wasn’t sure if it makes me better or worse. My face can move now, but just not as good as before. I can’t smile the way it did before (looks ugly). And I found facial muscle atrophy on my left face. It’s hard for me to accept what I look like now, so I am still seeking treatments. Don’t know if there’s any operation in repairing the nerves.😭😭😭😭
Thanks Tanya! I appreciate your videos. I'm 18 months in RHS and all of a sudden my fatigue is overwhelming. Did you find that the fatigue comes and goes?
My fatigue was getting worse. I also came down with a different condition because of My brain being caught in this unending loop. Do you have any other symptoms? The treatment I had really helped with my fatigue. I felt like I had been hit like a truck every day, the feeling would never leave. Couldn’t do more than an hour of multiple people in a conversation. It was really tough.
@@TanyatasticTalks I need to look into that treatment more - I previously messaged you about it but investigated and found it expensive. However, my other symptoms still persist (painful ear which is sensitive to high-pitched noises, and walking in wide open spaces is a real challenge due to whatever is going on with my vestibular system). So - once this lockown ends, I will call them again!
I’d say it’s worth it, way cheaper than $10,000 programs I previously looked into. Do you live in Canada or the states? Maybe it depends where you go. Mine was less than $1800 for me, it is still money, I understand. It’s resolved my balance issues etc. I’ll be making a video about my progress 7 months post treatment this week
Well update. My shingles in my left ear and my mouth along with my Bell’s palsy is almost all gone. 👍🤣But now I have COVID ind I’m miserable 😖☹️😢
I hope you get well soon
Can you share with me how you handle stress and what effects it has on you. I am about 1.5 years through and I find that my face tightens up when I am emotional or dealing with stressful situations at both home and at work. What have you done to minimize this? Thank you!
Awesome question, I should make a video about this since there are some updates on my end.
Part of me doesn’t always know I’m stressed but my body will definitely tell me when I am. I have other neurological symptoms that show up for me like a hand tremor that will let me know my nervous system is on high alert. So it’s all interconnected. How I try to help myself is to validate the stress of anxiety I do feel in the moment instead of trying to push it away. I try to also find thing that are able to bring me joy and calm, whether that’s through art or a walk around the block. I do have people I’m able to talk to when I am in periods of high stress.
I’m recovering from a 3rd bout of the shingles again, my nerve pain shot up immensely and my sensitivity to sound was more pronounced, that allowed me to take inventory of what was happening in my life even in terms of cumulative stress that built up that I guess part of me wasn’t able to release. My body acts like a barometer that allows me to check in with myself to see what’s really going on underneath the surface.
Thank you for your quick reply.
Do you find yourself trying to avoid stressful situations or have you just accepted it and deal with it when it comes?
@@bruceh6668 I know what things bring on stress so I’m able to prepare for those things to a degree before they happen (depending on the situation)
what is the treatment for RH? do you mean accupuncture?
MJ no I didn’t do acupuncture. I have a playlist of the treatment that I received here: ua-cam.com/play/PLA1cah_mP4cP70X1KnfiJa1aulxCWGZ6C.html I’ll be doing an update this week 7 months post treatment
Did you have Covid vaccination prior to onset of RHS?
No it happened May of 2017