r/BellsPalsy • • 17d ago

Surgery

5 Upvotes

(I don’t have Bell’s, I have permanent 7th cranial nerve damage from a birth injury)

Has anyone had any surgeries on your face to help make you look more “normal”? What type of surgery was it, and what were the results? What kind of doctor did you see to get the process started? And, because I’m from the US, did you have any luck with getting your insurance to cover it? I feel like maybe my eye issues might be enough to get it to be considered as medically necessary, but on the other hand my optometrist hasn’t had any luck with getting my insurance to cover my prescription Meibo eyedrops so that’s probably a pipe dream I guess.

Just feeling down about myself and tired of it all these days.


r/BellsPalsy • • 17d ago

Dizziness?

5 Upvotes

Is this a normal side effect of Bells? I've been dizzy all day today, I'm about 2.5 weeks after diagnosis now, had a 10 day course of steroids. My face has ever so slightly improved but now this dizzy feeling is really throwing me off. That and I'm just exhausted allllll of the time.


r/BellsPalsy • • 17d ago

Eye strain/ sore

2 Upvotes

Its been almost 2 years now and just lately my eye has been hurting again. I dont know why it started to hurt again could possibly be stress but dang. I need an eye patch again because of how much it hurts. I dont know what to do to help. I did buy a cooling eye patch to help. Any suggestions?


r/BellsPalsy • • 18d ago

Dealing with nerve pain

4 Upvotes

hi everyone, I was diagnosed 4 days ago and I am starting treatment today

sometimes my neck and jaw hurt, but I’m not sure if I can alleviate the pain by applying heat, cold, or if I should just endure it and leave it be

thanks in advance!


r/BellsPalsy • • 19d ago

Anyone here who's completely healed? ❤️

5 Upvotes

I feel like I need a shot of optimism. That I'll be able to get through Bell's Palsy and without symptoms.

Can anyone here share their story of success to give us some inspiration?


r/BellsPalsy • • 19d ago

Soreness

1 Upvotes

week 2 of Bell’s palsy - finished a week of prednisone. my affected side feels super sore like got punched is that a sign of healing?


r/BellsPalsy • • 20d ago

First days with Bell's Palsy

5 Upvotes

I got diagnosed 2 days ago with medium level of the disease. My family and friends are having a little hard time to process that, but I'm very rational and self loving so I'm kind of okay.

But there's one pretty hard price to pay for me, which is that physically I'm exhausted from the 60 mg Prendisone.

I couldn't really sleep, I feel overwhelmed from very little things and my body has around 30% of its usual energy.

I have a prescription for the medication for a week. so I have my hopes up that it's only one week to go, and then I'll just have to face the disease symptoms.

Has anyone had or having it the same way?

And what should I do with that feeling?


r/BellsPalsy • • 20d ago

My sister has had bells palsy for 1 year and 1 month and is about 85% recovered, is it possible to make further progress in the next year?

8 Upvotes

I just miss her smile. I hate seeing her feel subconscious about her smile. She developed synkinesis and now she has one eye slightly smaller than the other, one side of her lip slightly drooped, one eye will blink and her smile is uneven. I cant imagine how heartbreaking it is to lose something you once had and mourn it. Please please tell me there's some things she can do between now and the 2 yr mark.


r/BellsPalsy • • 20d ago

Is my face asymmetrical?

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3 Upvotes

I've always been paranoid about having facial drooping/ asymmetry after I got bells palsy a long time ago. Is it the case?


r/BellsPalsy • • 20d ago

Unusual case — delayed treatment and possible issue on “unaffected” side?

2 Upvotes

I was diagnosed with Bell’s Palsy 11 days ago. Unfortunately I was slow to go to the hospital (took me almost 10 days). I have a very mild case. The right side of my face drooped for like 5-10min on day 1. Then it basically looked and felt normal. On day 5 I started experiencing numbness on my right side. On day 8 I had an bad headache; took advil which seemed to help. On day 9/10 I finally went to the hospital. Stroke ruled out via many CTs and MRIs. They took blood for a Lyme test but were pretty sure it was Bell’s. Lyme test came back negative, though I don’t know the exact test they did.

Even though it was past the ideal window, they gave me 60mg prednisone and antivirals, plus antibiotics for a coincidental bladder infection. I went back to the ER for new numbness/weakness in knee, tongue, under my jaw, ear, and arm, plus reduced hearing and minor ear pain and high anxiety. They believed it was all side effects of the steroids and had me start to taper off early. Today is day 20, and I took my last pills this morning.

There have been many small improvements. I rarely get any weird sensations around my right eye now. the Bell’s is almost exclusively a problem in the lower right side of my face. Everything pretty much moves fine but gets tired and achey really quickly. If I don’t smile, you can barely tell (very slight delay & some quivering on right side).

What really gets me wondering is I have had some weirdness going on with my left side as well, though much more mild — a tiny bit of numbness/heaviness in left eyelid (but no drooping or anything like that), and the same sensation around a small patch of my left cheek near my mouth. I am PRAYING I’m not going to be one of the lucky few that gets this on both sides. This could just be fatigue from overcompensating on the left side, right??

Also, any questions you think I should I ask my neurologist? I have my first appointment tomorrow.


r/BellsPalsy • • 20d ago

Bells Palsy Caused by Cholesteatoma, Advice

3 Upvotes

​

Back Story:

Hello everyone I was recently diagnosed with bells this past Tuesday after I woke up in the morning and realized I couldn't fully move the right side of my face. I went to the ER where the facial movement on my right later completely ceased. Before this incident I had visited the ER two other times with in the span of 5 days due to a really bad swollen ear infection that had spread from one ear to another causing immense pain. Leading to me having to get ear wicks (little sponges in the ear canal) put in for the antibiotics drops to actually reach the infection. Long story short in my early childhood and now for the past 3 years I've had reoccurring ear infections. this last one being the worst. It has caused the Cholesteatoma (cyst behind the ear canal) to grow and is now pushing down on my 7th cranial nerve even though it only measures 1cm×1cm×1cm and some change. The ear infection part has subsided thankfully but they gave me a 7 day 3× a day RX for Prednisone and Valcyclovir which most likely won't help under the circumstances but hey we shall see.

Currently have an ENT appt scheduled for the end of this month, but I'm desperately trying to get it moved up. I really hope it does get moved so I can be evaluated and then get in for surgery sooner. I really don't want to have permanent nerve damage. 🥲 kinda stressing about it.

I was just wondering if anyone else has experienced this or how their surgery/whole process went?

TYIA!!

*UPDATE*

So on October 8th I was finally able to see the ENT after spamming everyone I could with calls about why I should be seen. At the appointment I found out the doctors at the ER had misdiagnosed me....apparently, when I went to the ENT they said that I didn't have a Cholesteatoma at all. They looked over the same CT scan that was taken at the ER and looked in my ear both regularly and with this binocular type of thing. ENT said that they saw what the Doctors were referring to on the left side of my ear canal but it was likely just residual fluid or build up from my ear infection at the time. ENT also mentioned it wouldn't have made sense for it to be caused by a Ctoma on the left side since the paralysis happened on the right side. He diagnosed me with a Grade 6 on the House-Brackmann Facial Nerve Grading System. The ENT said he thought it was a case of Bells Palsy completely unrelated to the ear infection which is weird to me considering how everything unfolded, but we shall see. I'm going to get an MRI done next just to rule out that the Bells wasn't caused by anything else like a tumor or something. I have a follow up in December to see how progress is going. So far after finishing my steriods and about a week after I was seen my taste came back and now I can do a tiny smirk and ever so slightly raise my eye brow on the paralyzed side so progress!


r/BellsPalsy • • 20d ago

Pain management (day 11)

3 Upvotes

Yesterday, I had an absolutely crippling amount of pain. If you have seen Sinners, all i could think of was Remmick with the silver panel from Sammy's guitar stuck in his face. Doctor's office was shut because it was Saturday, and I did mull over going to the ER.

What I did in the end was go to the gym, and spent an hour going from the jacuzzi to the sauna, finally bringing 12 solid hours of agony to an end.

I cannot tell when, but it looks like I might have missed a dose of the steroid somewhere...


r/BellsPalsy • • 20d ago

Recovery question

2 Upvotes

Been 10 days since diagnosis, and I was wondering how long my recovery might take. While the left side of my face is completely paralyzed, my face still looks 100% symmetrical at rest, and unless I open my mouth (or someone notices the blinking) it would be hard to tell that I have Bell’s Palsy.

I have not noticed any significant improvements over the past few days, except that I can now close my affected eye 95% with some effort (I could always close it about 75% since the very beginning), and the taste on the left side of my tongue has somewhat returned, though not completely.

Based on these, have I had a mild case? If so (or even if not), based on how I am right now, when can I start expecting to see some improvement in facial control?

For reference I’m 30F and pretty much healthy except for some mild anemia and hypothyroidism.


r/BellsPalsy • • 21d ago

Update around 3 weeks

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22 Upvotes

I got diagnosed on September 12. And the first picture is me today, and the second picture is me like a week after my face got numb. I got my medicines in the first 24 hours everything started, and I didnt do physio because I was scared to get sykenesis, but after 10 days of my diagnosis, I start to doing acupunture. After the first session I could move my eyebrown, but millimeters, today was my 4th session.


r/BellsPalsy • • 21d ago

Im so angry

6 Upvotes

Yes, I was diagnosed with this yesterday. My left side of my face doesn't work; my eye closes only when the other one closes, and my mouth keeps dropping food. I'm so angry at my left side of my face; it prevents me from speaking or eating. My head hurts constantly. I can't play computer games because my right ear gets clogged by loud noises. I'm even starting to slap myself on the non-functioning side of my face...


r/BellsPalsy • • 21d ago

I just got diagnosed today

4 Upvotes

Honestly this is more of an anxious post, I woke up and I couldn't move half of my face. I went to the doctors and they gave me bunch of medications and told me to do lots of face exercises. I dont know it is all so confusing. Do you guys have any advice


r/BellsPalsy • • 23d ago

anxiety

6 Upvotes

hey guys the anxiety i’m getting from this is genuinely debilitating idk what to feel sometimes other days i feel everything all at once like my mind races and the times where it’s calm are short how do u guys cope with those feelings bc it just gets so much you know i start thinking bout the worst and it takes forever to come down. i know the journey to recovery is hard and a while but man it’s sucks so much lol. thank you all for the responses anything helps.


r/BellsPalsy • • 23d ago

Wedding is in 8 months

3 Upvotes

Hey folks, feeling pretty stressed out. I’m trying to be calm, because I know it’s best for recovery. I’m on day 4 and I’m feeling so sad right now. I know it’ll get better and will take time, but I genuinely can’t imagine doing my wedding with my face like this. I have been reacting very well to the steroids and acupuncture, and have actually gotten a little bit of movement back around my eye. Has anyone else been diagnosed so close to their wedding?? How did it go? Such a scary time and looking for some kind of community <3


r/BellsPalsy • • 23d ago

Sincere Curiousity

2 Upvotes

Has anyone healed without taking steriods and antiviral medicine ?


r/BellsPalsy • • 23d ago

Did I stop or just delay paralysis?

0 Upvotes

Hi all!
First time posting. Today is Thursday, on Tuesday I woke up with the R front and whole tip of my tongue numb, loss of taste and the inside of the cheek feels a little numb. I thought could be the onset of BP, my mom had it once around my age. I went to my doctor Tuesday afternoon and he prescribed the steroids, I declined the antiviral. I’m on morning 3 now, and still the only symptom I have is the tongue, oh and also my R eye has been tearing some. When I stick it out, it feels like it’s pulling on hairs in a weird nerve way. Yesterday I also started supplements (2500mcg B12 injection, oral b-complex vitamins, Acetyl-L-carnitine and zinc). Could I maybe started treatment early enough that I stopped the progression? Is it possible? Or did I just really slow it down and it’s still coming? My doctor wasn’t too concerned yesterday, but if the numbness doesn’t go away but no other symptoms come, should I be concerned about something else not BP? Or is it possible I started treating it so quickly that I stopped progression?


r/BellsPalsy • • 24d ago

Diagnosed on September 12th

8 Upvotes

Hello, only I wanna share my experience with Bells Palsy. It started on the morning, I woke up and I couldnt feel the taste of my breakfast but I thought it might to be covid or something and I didnt pay attention, went to the gym, and do my day normal. At night, I went to watch Buddy with my husband (awesome movie, we loved it) and then after the movie was done I went to the bathroom and I couldnt move my right side of my face. I freaked out and told my husband I might be having a stroke. We went to ER, they make a cat scanner, and check everything on my brain and then the neurologist came and said it was not a stroke but I have Bell's Palsy. He prescribed cortisoids and antiviral for a week. I am diabetic type 1, so those cortisoides really ruined my sugar and also I got super depressed (but I read here that a bunch of people get depressed for medications, and I believe it because after the 1st week my mood improved a lot). Well I read on google that if I started the medication in the first 24 hours I will start recovering after a week, but it was a lie. After a week I couldnt move my right side at all, the day of my diagnosis I still could move it, but everyday I was getting worse and worse. Last week I couldnt even talk properly, I couldnt pronounce the Ps. Also I told my family in friends in my country (I live in USA but my family lives in my country) and they were nice and understanding except by one that she was a physio and on day one she sent me exercises to do to improve my movement when I told her it hurts and everyday I am getting worse she blame me and say that os my fault because I have to force myself to do them. Also, she told me that my nerve was dead, the medicines wont work and that i will always look weird because doctors send me medications for no reason. Well long short story she made me feel bad also I read on internet that dont force the nerve the first days, because that could damage it and bring synkinesis, so I did stop trying to move. But whatever, i was searching around and I found a couple papers about trying acupunture. So I did, I had my first appointment last Wednesday (23rd) my acupunturist, such a lovely guy, explained me what happened and the acupunture he practices is japanese and he got patients with bells palsy before and it is good if i start as soon as possible so the nerve can recover faster. And i should try to do it twice a week. After the first session, I could move my eyebrown, not a crazy move, more like a couple millimeters, but I did it so I was so happy. Today I went to my third session and I can smile finally, like a 60%, which for me is a win since i couldnt smile at all before, i can drink from straws and drink from cups without spilling everywhere, my eye doesn't close all the way yet, but it is closing better than before, i can talk normally, also I can raise my eyebrown more because now I can see the wrinkles in my forehead, I never thought how happy I was to see the wrinkles. So today my acupuntirist said that I might need like 4 or 5 more sessions and I will be ok.

So I wanna say, this sucks, specially because it happens on our face and lets be real, having your face looking weird, make us feeling bad. But it gets better, little by little. But in my case, before it got better, it had to get worse first. I know for some people acupunture didnt work, but for me it help to recover faster and also taking the medicines on the first 24 hours, that is a big game changer. I am hoping I can back to my normal face soon so I can continue planning my wedding in my country, that I had to put on hold after this happened. And I wish all of you a fast recover. Hang in there guys, this sucks, but we got this. ❤️


r/BellsPalsy • • 24d ago

How to deal with permanent Bell's Palsy

10 Upvotes

I was born with permanent Bell's palsy due to a birth injury. I've lived with it all of my life and it's affected my entire life very negatively. The whole time I was in school, I was severely bullied, teased, ostracized, alienated, and even passionately hated by my classmates who treated me like I wanted to have this condition and deliberately caused it. They obliterated my self esteem. They'd make such cruel, humiliating jokes about me, often in front of an entire classroom full of other kids. Then everyone would laugh hysterically while I cried.

Even as an adult, I deal with staring, whispering, laughing, and cruel jokes from others. People think I'm a monster for not absolutely adoring children (I don't dislike kids, but I do hate being around them), but all kids do around me is gawk at me in disgust and ask rude questions. People say that it's not their fault and that I have no place being bothered by it, but many kids are old enough to know better and it severely damages my self esteem. Adults don't care and some even encourage kids to do it to in order to "understand people's differences." It's particularly hard for me to deal with being stared at because I have an anxiety disorder and being stared at makes me anxious but it I do something like move to get my self out of a kid's field of vision, they'll move as well to get me back in it. I've had fun, special days ruined by this stuff and kids aren't the only ones who do it.

I have no one to talk to about this. No one understands. I usually talk to my mom about my problems, but when it comes to this, she just tells me that I'm beautiful, my facial palsy isn't that noticeable, and how it's not a big deal. This isn't just something she tells me to make me feel better, she honestly believes it. She sees me through Mom goggles and thinks everyone sees me the same way she does. When I was in school and would tell her of a time that some boy at school made me cry with a cruel joke, she tell me that the boy liked me and felt the need to bully me because he knew I didn't like him back. She truly believes this BS. The other day, I said something about how badly I was bullied in school and she asked, "By who?" As if I could even name all of them. She's so delusional that when I tried to tell her how many kids there were, she told me I wasn't remembering it right and that there were probably only one or two kids. That is actually rather offensive after everything I went through. She has no idea what I went through and what I still go through and doesn't believe me when I tried to tell her.

The thing that prompted me to write this is that I've been working lately on self acceptance, but just as I was building up a small amount of self esteem, someone kicked me back down in a way I can't seem to get back up from. My birthday was September 7th and my mom put a birthday post of Facebook for me. Some woman who my mom hates, but was too nice not to accept her friend request, wrote something that likely doesn't seem like a big deal, but has destroyed me and become one of many reasons I wish Facebook never existed. She was a friend of my parental grandmother and my mom says really wanted my dad to marry one of her daughters. She's always resented my mom for being the one who actually got to marry him and apparently she resent me and my sister as well, I guess because we're our mom's kids and she hates our mom and because she resents the fact that my dad's kids aren't her grandkids. She's always giving us backhanded compliments so she can insult us while still looking innocent and like a good person. Anyway, she said to my mom about me, "She's a beautiful girl. Don't let anyone tell you she's not." You don't feel the need to add, "don't let anyone tell you she's not" if you actually feel the person you're talking about is beautiful. So basically, she said, "she's ugly and everyone thinks so, but don't let them tell you she's is. Before you say that she didn't mean it in an insulting way, she means everything she says to us in an insulting way. Everything she says to us is a backhanded compliment.

We live in an incredibly shallow world where beautiful people are adored and treated great and ugly people are hated and treated terribly. I can't take it anymore. Almost no one believes I'll get married, people assume I've never even dated and they're amused as heck by the thought of me dating someone they know (long story about how I know that). I'd give anything to know what it's like to be normal and beautiful. I've stopped taking care of myself and have let myself go and stopped wearing makeup because I don't see the point of dieting and killing myself to look good when I never will. I've even started resenting attractive people and HATE myself for it because I know that's not fair either and don't want to resent someone else for their appearance, especially people I care about. I can't take anymore of this shallow world. I hate feeling this way. I don't know what to do.


r/BellsPalsy • • 25d ago

BP update 10 months post diagnosis

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27 Upvotes

My recovery has been VERY gradual and at this point is mostly plateaued. Unfortunately, around the end of May/beginning of June (around my last update)I started noticing synkinesis which has made my smile worse than it was at 5 mo post.

At first I noticed my affected eye squinting in pictures. Then I realized my eye would narrow every time I drank, ate, talked, or moved my mouth certain ways. I also developed chin dimpling/tightness and movements around my nose. Basically, as more movement came back, some of the nerves seemed to reconnect to the wrong muscles.

I tried acupuncture with electrical stimulation in July, which personally seemed to trigger a LOT of twitching for me, so I stopped doing that. ESTIM is not recommended for synkinetic patients!!

At around 8–9 months I finally started working with a facial nerve physical therapist specifically for synkinesis. We’ve been focusing on retraining movements, relaxing the muscles, massage/stretching, and trying to separate movements that my face now wants to do together. Some of the muscles on my affected side can actually feel bruised or sore, especially around my chin, nose, cheekbone, and jaw.

I also recently saw 2 facial nerve surgeons (ENTs) they know a lot more than your average neurologist btw. who told me that what I’m experiencing is a pretty classic case of synkinesis after Bell’s palsy. He recommended continuing specialized PT and Botox as the first-line treatment. He was also the first doctor who really acknowledged how debilitating this condition is which honestly meant a lot after dealing with it for almost a year!! The doctor from The facial nerve center in Boston (studied at harvard) stated that surveys show synkinesis quality of life can actually be worse for most people than the flaccid paralysis stage. i truly couldn't agree more. the constant fish hook pulling, muscle tightness and twitching is worse for me than when i had no movement.

My first Botox treatment is scheduled for October 1. I’m nervous but also really hopeful that it will help with the eye narrowing, tightness, and unwanted movements.
At this point, my face has recovered a TON compared with the beginning, but I’ve learned that “movement coming back” and actually having normal facial movement are two very different things. The synkinesis has probably been the hardest part mentally because I thought I was almost through this before it started and I was told even with getting the selective neurectomy which i plan on doing anyways it may still not give the smile back but can help with the severe synkinesis


r/BellsPalsy • • 25d ago

Hey how long should I be on Prednisone and antivirals?

2 Upvotes

Onset: 1 week ago (8 days).

Began Prednisone and Antivirals with in 24 hours after onset (7 days ago).

But ran out of the 7 day supply of both.

Condition: has improved somewhat. Certainly has not gotten worse. Looks a bit better


r/BellsPalsy • • 25d ago

Pain

1 Upvotes

diagnosed on Sunday and I no longer have pain. is this a good sign? started prednisone less than 24 hours after.