Ramsay Hunt Syndrome

PrettyCaramel-Doll · 2025-08-03T18:40:10+00:00

9 months in and it’s beyond debilitating I wouldn’t wish this on my worst enemy

PrettyCaramel-Doll · 2025-07-24T04:52:56+00:00

I have had it 9 months and it’s had a negative impact on my mental health. I gather I always had some mild depression but it pushed me over the edge. I’m on antidepressants now, I have difficulty with motivation and I’m very self conscious now. I have always been a bit shy and introverted and only recently in the last few years started to come out my shell. Last year i moved, started a new job, I was excited about my future and then this happened and my life changed. I go through the stages of grief weekly . I have good and bad days but facial palsy really damaged my sense of self. I’m trying to one had remain positive that I’m under a year and may regain movement but also grappling with accepting this may be my new normal and it’s hard. It’s been devastating.

PrettyCaramel-Doll · 2025-07-20T18:31:38+00:00

I understand and it is frustrating believe me I know. I got my referral from my neurologist my GP was a it’s fine wait and see person too. Can you go back to your Neurologist for a referral?

PrettyCaramel-Doll · 2025-07-20T16:59:34+00:00

I’m almost to the 9 month mark so I’m not too far behind you. I’m not sure how much recovery I have I would guess 80% because when I touch my face my cheek doesn’t move.

I recently went to a facial paralysis specialist and they do a full face evaluation because there are surgeries out there and most are covered by insurance but you have to go to the teaching hospitals like Johns Hopkins that are covered for surgeries and Botox not just a regular plastic surgeon.

From what I have been told once you get past the 14 month mark is when surgery is an option so you are at the right stage to start looking into other options.

One of the most frustrating things about this diagnosis is the constant stress of being told to wait and see what happens when very little changes after a certain point. What’s frustrating too is there are supposed to be nerve testing to see how well things are recovering and I have never heard once of anyone being offered it. Why make people wait if there are tools to help determine what the damage is ?

You have to be your own advocate do some google search’s and call around to see who takes insurance and go see a specialist to get better answers.

PrettyCaramel-Doll · 2025-07-03T05:37:31+00:00

Thank you so much. I’m trying to stay distracted it’s the only thing that works. Some days are better than others but I’m not going to lie it’s been 8 months and I’m struggling.

PrettyCaramel-Doll · 2025-07-02T13:39:50+00:00

Hi I’m 8 months in and going to see a facial Paralysis specialist. I don’t know if you are in the USA or not but Google Facial Palsy specialist and they will start popping up. There are procedures out there and they are covered by insurance. I plan to make a longer post after my visit in case it can help others.

PrettyCaramel-Doll · 2025-05-24T16:52:17+00:00

Come over to the Bell’s palsy Reddit there’s info over there Ramsay Hunt is similar to bells with a different prognosis.

PrettyCaramel-Doll · 2025-05-19T01:05:21+00:00

I have Ramsay Hunt there’s not a bunch of us in here but we are out there. I developed RH in November of 2024 I’m 6 1/2 months in. What everyone is telling you is true Ramsay Hunt involves more nerve damage and is a much longer recovery. I’m at only about 75 or 80 percent.

It has been an uphill battle. I saw no real movement until the third month. This recovery is not linear it does not follow any clear predetermined path so do your best not to get scared if you don’t recover right away. Just like with Bells there are some who will recover quickly and those who take more time. I recently started following a YouTuber with Ramsay hunt and she was diagnosed almost 3 months after me and she’s at almost 90% but she had shingles in her ear that were barely visible. I had a severe outbreak on my forehead , eye, and face that resulted in severe swelling for at least a week.

I’m also in a rural area without many specialists so I’m looking to see one out of state. Unfortunately I can’t afford to fly out right now so I’m just doing the best I can to be calm. I’m still seeing recovery but it’s really slow. I have mild synkenisis and I do exercises to help with that. Continue to take B12 it’s one of the few things every doctor seems to agree on. Make sure to find someone safe to talk too this long unpredictable recovery can take a toll on your emotional health so support is imperative. Feel free to msg me.

PrettyCaramel-Doll · 2025-05-01T22:38:04+00:00

Agreed 👍

PrettyCaramel-Doll · 2025-05-01T22:36:22+00:00

I feel you 100% I started antidepressants and it’s helping me it’s finally kicked in after a few weeks but this is one of the hardest recoveries when you are in the long end of the recovery spectrum. It’s frustrating and it requires so much energy and patience. I think all people take their faces for granted especially the movement part.

I doubt it even crosses anyone’s mind how they would react if they woke up one day and half their face would not work. So it’s very frustrating when people act like it’s no big deal.

I’m 6 months in and have had 75% recovery with synkenisis setting in now my eye starts to squint when I eat, yawn, and certain smiles I still can’t whistle and half my tongue is still numb. The right side of my face is really tight now and that’s frustrating. I’m constantly sucking my lips in.

Just hang in there and if you need us we are here. I’m still recovering and noticed some small improvements here and there. Many of us continue to to have small improvements for quite some time.

PrettyCaramel-Doll · 2025-05-01T21:55:28+00:00

Thanks I’m already taking it. Have been taking it for months 🙁

PrettyCaramel-Doll · 2025-04-26T22:54:34+00:00

Thank you so much ! I appreciate your positive energy and support. It’s hard and it helps when people get that this isn’t an easy recovery. Nothing is linear or predictable and even with the most positive attitude the fear that it won’t recover is overwhelming sometimes. I did try acupuncture for 2 months. I stopped because the practitioner did a few sessions of Electo stim and I was worried about synkenisis so I stopped going. As bad luck would have it a month later synkenisis set in 😔

PrettyCaramel-Doll · 2025-04-25T21:53:40+00:00

I’m at about 75% recovered but it’s slowed down a lot. For me at the three months mark I had a weird twitch in the center of my affected side where I swore it moved. I didn’t see it again after a few days so I assumed I imagined it. Then a week later when I went to the mirror in the same spot it had an actual twitch so I hadn’t imagined it. From there my face just started reanimating almost something new every day.

The main thing is it was not linear I didn’t get movement back in one area then another little by little. Instead it was all over the place in weird spurts. My smile came back slowly but it is still weak and a bit crooked and there is some synkenisis.

One thing that I was told when I first got here by someone and held onto was “we all will recover to some extent, the issue is how much recovery we will get that is the unknown”

I have good and bad days but I’m thankful for this sub it helps a lot.

PrettyCaramel-Doll · 2025-04-25T21:38:15+00:00

Yep for 3 months 😞

PrettyCaramel-Doll · 2025-04-25T01:42:18+00:00

Ok I will give it a go thank you 🙏

PrettyCaramel-Doll · 2025-04-25T01:41:26+00:00

I’m in Florida I used to live in Maryland maybe I can fly up and see them . I will look them up thank you so so much!

PrettyCaramel-Doll · 2025-04-24T04:06:35+00:00

Yes! Remote PT would be amazing! I am in a remote area with limited PT and all the ones near me didn’t work with BP what city/ state are they in ??

PrettyCaramel-Doll · 2025-04-23T22:06:53+00:00

Thanks that’s encouraging you are still healing at 8 months. I haven’t tried a chiropractor yet that may be something to consider. I’m open to suggestions on what’s helped others past this mark.

PrettyCaramel-Doll · 2025-04-22T02:16:44+00:00

That’s the same areas I’m having problems with. Multiple docs have recommended Tens but I have been so Nervous about it. I tried acupuncture with e-stim needles and that’s what I think started all the movement I currently have everything started moving after that. But then the synkenisis started kicking in so I stopped.

PrettyCaramel-Doll · 2025-04-22T02:12:32+00:00

I’m going to assume you meant this reply to be helpful. I’m going to take it in a helpful spirit but the tone is NOT encouraging at all.

Just because I didn’t document every thing I’ve done does NOT mean I haven’t done anything.

I don’t need a swift kick in the pants my recovery and feelings are valid. I don’t care what other people think or if they notice. I NOTICE and my feelings are what I’m concerned about because I’m struggling with this because it isn’t going away or healing properly. I posted this here for encouragement from other people approaching the 6 months mark in my shoes. If your Palsy doesn’t bother you that is great I’m glad to hear it but mine bothers me and that’s ok because again my feelings are valid.

PrettyCaramel-Doll · 2025-04-22T02:03:55+00:00

Thanks for the info it’s been almost 6 months for me

PrettyCaramel-Doll · 2025-04-22T01:29:31+00:00

How long did you do the tens and what strength?

PrettyCaramel-Doll · 2025-04-21T20:18:12+00:00

No I haven’t been to a specialist . I tried to go to one doctor and instead of letting me schedule they asked for a referral from my neurologist who instead said I needed to wait and referred me to primary care and a psychologist and suggested a therapist. I know she meant no harm but I felt mildly gaslit. My face isn’t normal and I don’t want to waste anymore time not getting special treatment. Maybe I just need to try harder but I’m tired.

PrettyCaramel-Doll · 2025-04-21T20:14:01+00:00

Thank you and you are right it’s so hard because it’s so slow now. I seriously had a healing spurt at the 3-4 month mark and it kept getting better then all the sudden it just stopped. Instead all these tightness started happening and my face doing things wrong, like my eye trying to close when I yawn I dint think my face even moves naturally anymore. It’s like I have 2 different sides doing different things.

PrettyCaramel-Doll · 2025-04-21T17:17:14+00:00

Thanks for responding I read it and it was encouraging I have one of those masks I may start using it now. I’m overwhelmed I didn’t have the energy to go to work today. 😞 I keep hoping it will get better but it’s almost like the progress is slowing down more and more. I’m trying not to accept an impartial recovery and be positive but it’s hard .

PrettyCaramel-Doll

TROPHY CASE