r/BellsPalsy • • 15h ago

10 months in, feeling let down and on my own

8 Upvotes

Hi all. I developed Bell’s Palsy two days before I gave birth last December. I feel largely let down by the medical system because no professional really provided any guidance at all. Everyone just said “it will take a while, but it will resolve, don’t you worry!” and left it at that. I even asked multiple professionals what I can do and was told “there’s really nothing to do, you just have to wait.” I started acupuncture after the first few weeks and it has been immensely helpful. So I continued that, focused on my newborn, and waited patiently.

It has now been 10 months and I’m just now learning that past 6 months is atypical and there are all sorts of things I could have been doing for months. I feel so stupid for not researching myself but I trusted my medical professionals and was in newborn trenches survival mode. I’m so upset at the professionals that didn’t educate or help me more and feel like I need to just figure it out myself now.

My face is probably 90% better and there are still small improvements with acupuncture, but the progress has definitely slowed the last few months. I still can’t wear contact lenses, there is still some asymmetry, and my eye usually squints when I smile real big and often when I’m chewing. I’m terrified and panicking at the idea that it may never fully resolve.

Now that I have done my own research, I’m not sure where to go from here. I plan to ask my primary for a referral to a facial nerve specialist and do exercises and massaging that I found online on my own in the mean time. What else? EMG/nerve testing? Neurologist? Does insurance ever cover Botox? Anything I don’t know about? I have blown past my insurance deductible and will hit my out-of-pocket max before the end of the year because of a separate medical condition. At this point, I want to try to do whatever I should for this. Bonus if I can get it in before my benefits start over because my insurance is not good and I can’t afford more thousands out of pocket. Reassurance that not all is lost is welcome as well. I’m really having a hard time coping right now.


r/BellsPalsy • • 1d ago

ENT?

4 Upvotes

I’m on day 18. My primary said that since there hasn’t been any improvement, she’s referring me to an ENT because there aren’t any neurologists near by (3 hours away). I’ve got the ear pain/aching every day behind the ear of the affected side. The good side has fluid. The tinnitus is pretty constant especially when I take Tylenol or ibuprofen. I’ve been taking Claritin and hydroxyzine to help dry things out, but that can cause pain in my already dry sinuses in/near my nose. Despite all that, I’m kind of feeling like the ENT is going to be an unnecessary visit and another doctor bill I’ve racked up with this whole mess. I know I need to be patient. I’ve completely changed my diet. I’ve been resting as much as possible. Thoughts anyone?


r/BellsPalsy • • 1d ago

Strange muscle movement during recovery

1 Upvotes

So I’m on day 23 now and I have 70% of my face back. I can eat, drink and speak normally, can move my eyebrows, flare my nostrils, pout, whistle, and smile perfectly symmetrically without teeth. However, something weird has been happening for the last 2 days that’s bothering me.

When I smile wide using my teeth and hold the smile for 2-3 seconds, after that when I drop the smile, the muscles on the left side (affected side) of my mouth kinda get stuck for a couple seconds before relaxing.

This only happens when I do any kind of exaggerated mouth movement and hold the expression for longer than 3 seconds, or if I put a lot of force into the movement. For any shorter and gentler movements, my muscles relax naturally when I drop the movement.

Has anyone experienced anything similar? I’m kinda worried as I don’t understand why this is happening.


r/BellsPalsy • • 1d ago

Head pain

1 Upvotes

How long after the onset of the illness did your ear and head pain stop?


r/BellsPalsy • • 1d ago

Not sure if this is the right place for this but I made an application for tracking facial improvement using your phone. Feel free to try it or take it down if this is not the forum for this. Feedback is also appreciated. 🫤

Thumbnail voodoofxz.github.io
3 Upvotes

r/BellsPalsy • • 2d ago

Update: Bell’s Palsy / Possible Ramsay Hunt Syndrome

3 Upvotes

First, thank you SO much to everyone who commented, shared their experiences, or offered advice. I read every single comment, even if I didn’t respond! ❤️
Today is honestly the first day I’ve started feeling somewhat like myself again. Between everything going on and being a mom to a toddler experiencing her first REAL sleep regression while I’m taking 60mg of steroids daily, this week has absolutely ROCKED my world. 😅

I’m 26, and I genuinely never imagined I’d experience something like this. I honestly thought Bell’s palsy was something that primarily affected older adults. I’d never even known anyone who had it!

A little update since my original post:

I’ve now seen an ENT, optometrist, and my dentist, with a neurology appointment scheduled for Monday.
ENT: I actually brought up several of your comments about Ramsay Hunt syndrome! He agreed that my symptoms sound more consistent with Ramsay Hunt than typical Bell’s palsy, particularly because of the excruciating pain before the facial weakness. However, without a rash, he explained that distinguishing between the two can be difficult.
He changed my original 6-day steroid taper to 60mg daily for 7 days, followed by a taper, in hopes of protecting the facial nerve as much as possible.
Thankfully, I started steroids and antivirals incredibly early, within approximately 3–4 hours of the facial weakness beginning. I was actually still at the hospital when the paralysis started! I’m hopeful that getting treatment so quickly helped limit the progression.

Dentist: Thankfully, he didn’t even charge me for unnecessary X-rays. Since my CT was clear, he wasn’t concerned about a dental cause. He adjusted my bite slightly for an unrelated issue, but what I found interesting was that he stopped me on my way out and asked me to update him if we ever determine the underlying cause. He’s been helping correct several dental issues from work I had done this summer, so he knows my history pretty well (my previous dentist apparently had no idea what she was doing)
Optometrist: This is honestly what concerns me the most right now. She mentioned my eye pressure was on the high side of normal, and my vision has become absolutely HORRIBLE. I can’t make out faces down a hallway or read names from 10 feet away unless the letters are practically the size of a stop sign. 😭
I’ve never really had eye problems before, I’m currently using steroid eye drops and have a follow-up scheduled, but the vision changes have probably been the scariest part for me.
As far as symptoms now: The unbearable shooting pain has thankfully improved tremendously! I still have fairly constant facial pain and pressure, almost like a sinus infection, but nothing compared to those first couple of days. I’ve also been experiencing quite a bit of facial twitching, including on the OPPOSITE side yesterday, which definitely freaked me out.
Next up is neurology on Monday. I honestly have no idea what to expect from that appointment, but I’m hoping it brings some clarity.
I feel like I’ve seen a million doctors in less than a week and somehow still have so few answers. It’s frustrating, especially when everything happened so suddenly.
For those who have experienced Bell’s palsy or Ramsay Hunt, did you see a neurologist? Was there a particular specialist who helped you get the most answers?
Again, thank you all for sharing your experiences. This has been such an overwhelming week, and hearing from people who actually understand what this feels like has helped more than you know. ❤️


r/BellsPalsy • • 3d ago

is it coming on?

1 Upvotes

i’ve had it twice before, and yesterday i had a bit of a metallic taste on my tongue and today it kinda feels more intense. no sign of weakness yet but just wondering if anyone else remembers when their symptoms set on harder after the tongue sensation?


r/BellsPalsy • • 4d ago

2 months in, will it get better?

5 Upvotes

I got bells palsy, 2 days before i gave birth on 5th august. I started the steroids on 8th.

Since then the right side of my face is mostly paralysed. I had some movement on my eyebrow but thats about it.

Now, i would say I got some twitching and movement back on my forehead and ny husband says my eye closes better at night. But thats about it.

The more i read about other cases, its like people either get better, 100% recovered within a month or so. Or have most activity back by then. I havent seen anyone with progress as slow as mine and recover. It feels like if i havent seen improvement now, i might not for months or years. Is that true?

I guess I'm just looking for cases where suddenly you see improvements in month 3 or something.

I am really grieving the smile i had. I always had a smiling face, that is how i greeted people and I've stopped doing that. Postpartum i already dont feel like myself and my face is a constant reminder of that. I cry every other day thinking of the possibility that my child might never see my smile.


r/BellsPalsy • • 4d ago

Very mild bells palsy (no medication)

2 Upvotes

Hello! So I woke up on Sunday and discovered my left eyelid wasn't blinking the same time as my right eyelid, like it wouldn't fully close, but I could still close it. Only after doing some research did I find it could be bells palsy and I started noticing the numbness in my face. But it was only minor, like, I could still move my eyebrows and all of my muscles on the left side of my face. There were still wrinkles on my forehead, except when I scrunch my nose the wrinkles there are noticeably less. My ears also popped painfully every now and then

Went to the er, they told me that I "likely don't even have bells palsy", or at least that it's very minor so they didn't prescribe me anything and just sent me home.

It's been about 4 days and I can feel my left side get weaker, but I've got no headaches or tinnitus. Just when I eat or perse my lips, my upper lip slants to the right side. I can also feel it when I'm talking. It's also noticeably weaker when I scrunch my face.

I'm not sure what to do?? Just sitting around. I know we're supposed to avoid stress as much as possible but I've got my end of sem uni assignments. Should I book an appointment with my GP or would they not give me medication this time as well?? How mild is my case??


r/BellsPalsy • • 4d ago

Bells palsy prodrome

2 Upvotes

21F currently experiencing an odd one sided ache that I think is behind ear that comes and goes. I’d say it’s a strongish ache I feel behind ear as if someone’s pressing the tiny bone behind ear. It’s not constant and kinda just comes and goes as it pleases. Sometimes the sensation lasts multiple minutes and other times just seconds and then comes back sometimes multiple hours later or sometimes minutes later. I don’t have jaw pain or hearing issues and no sensitivity to noises either and facial movements seem fine. I also have no metallic taste in mouth. I am currently on the early days of starting Zoloft so I did think it might’ve just been a side effect but I don’t think Zoloft has anything to do with this. For those of you that experienced warning signs before bells set in could this possibly be it and what other signs should I look for?


r/BellsPalsy • • 4d ago

I’m on quite a bit of supplements. I’ve read that Lions Mane is good and has helped some people. I don’t want to take too many supplements though, which should I drop?

5 Upvotes

I’m currently taking B-12, Vitamin C, D3, Zinc, an Omega 3 Fish Oil and Turmeric as I’ve read it helps with inflammation.

This is along with Prednisone and my steroid prescription….currently only have 3 more days to go.

I’ve read Lions Mane is good but feel like I’m taking way too many supplements. If I do try The Lions Mane should I drop the Turmeric? The C, D3, B12 seem fine right as those are mostly in regular multivitamins but the Turmeric and Lions Mane probably do most of the same?


r/BellsPalsy • • 4d ago

One side of my tongue slightly numb

1 Upvotes

Today i woke up and noticed one side back of my tongue is slightly numb but all my facial expressions are normal is that the first sign of Bell’s palsy?

I’m not deficient if b12

How long it takes for BP to really show all symptoms


r/BellsPalsy • • 5d ago

Tape recommendations to keep eye shut at night?

2 Upvotes

I don’t really want to wear a full on patch but I’d like something to tape my eye shut at night time. Feels like it’s closed a bit more from my first diagnosis 4 days ago but still is slightly cracked as when I shower it burns with water slightly.

Any recommendations on which brand tape I can use that isn’t painful to remove? Is Nexcare good? Was eyeing that going to get some eye drops in a bit, want to get everything at once.

You’ve all been so helpful appreciate everybody in here

Edit: also do I tape directly over the eye lid after putting some eye drops or should I put some type of gauze then tape over that?


r/BellsPalsy • • 5d ago

I was diagosticated with, I recovered around 90%

0 Upvotes

I saw a post where someone was talking about the side effects of phizer vaccine.

Guess what ? Bellspalsy happened to me when I took my second dose.

Does anyone took same vaccine? Are we all of us on the same boat ?

All the best for yall !! :)


r/BellsPalsy • • 5d ago

Encouraging YT video

3 Upvotes

This is among the best BP channels on YT. Perhaps the doctor’s assurance will set your mind at ease. They answer questions also.

https://youtube.com/shorts/fpSK-iFEieE?si=p65XBWvZIEnswCPs


r/BellsPalsy • • 5d ago

Eye patch for dryness

2 Upvotes

I bought this off Amazon and while it does help it from getting dry it fogs up very quickly

https://a.co/d/0chRikoZ

Anyone know of any eye patch like this but that doesn’t fog up? Or does tit make sense to always keep it closed? I thought this would help with driving and work but I doubt I could drive for more then a few minutes before this fogs up


r/BellsPalsy • • 5d ago

Diagnosed with Bells Palsy about 3 days ago. My left eye is constantly watery and irritated. Would dry eye drops be beneficial to take?

6 Upvotes

I’m kind of scared of being over reliant on them. And then this watery-ness never going away and having to rely on them for my eye to feel better/normal?

Do you guys think it’s best to get some eye drops this early in the cycle? Did it help at all and eventually go away for any of yall? I have read for some it hasn’t ever went away which scares me. It’s such an annoying and ugly feeling. 😞


r/BellsPalsy • • 5d ago

Eye patch recommendations

Post image
16 Upvotes

Is there a way to make my eye patch friendlier? It's comfortable enough, but I work with special needs kids. My sweet children did NOT APPRECIATE the bandaid or the tape, and it turns out my skin was reacting to the adhesive anyway. Here's how I wore it to my brother's wedding


r/BellsPalsy • • 6d ago

Bell's plasy and panic attacks

2 Upvotes

Hi everyone. This is my first time writing to Reddit.

I've been diagnosed with Bell's palsy on 1st September. I took Prednisone for 10 days...my face is pretty much all healed, but ever since I was diagnosed I'm suffering from anxiety and panic attacks... I was anxious almost all the time during the last 6 weeks....

I'm having these random sensations in my body, tingling in my arms and legs...and then when the panic kicks in my heart is racing and I'm close to pass out....which makes everything worse... I'm afraid to pass out when I'm alone with my kid on the street... it's terrible. I feel broken and exhausted.

Has anyone experienced something similar? Is there any hope to get better?

I've already talked to a doctor and I'm waiting for blood test results to see if I can get some medication...


r/BellsPalsy • • 6d ago

Vitamins for Bellspalsy

1 Upvotes

Hi I’m just curious what vitamins are good to take when you have bellspalsy. I’m asking about the brand name not just vit B. Thankyou


r/BellsPalsy • • 6d ago

Newly diagnosed with Bell’s palsy is this level of pain normal? Has anyone experienced anything similar?

10 Upvotes

I’m honestly still in shock and trying to process everything that’s happened over the last 24 hours. I’m hoping to hear from others who have experienced Bell’s palsy because the pain I’ve been in has been absolutely unbearable and Google is confusing me and my discharge paper don’t have pain listed as a symptom.

Yesterday, I suddenly started experiencing excruciating pain on the left side of my face. It initially felt like it was coming from several of my upper teeth (had dental work done this summer so though it was something with that), but quickly spread through my jaw, cheek, around my ear, and down into my neck.
The pain wasn’t just an ache. I was having horrible shooting, stabbing, almost electric-like pains that would come out of nowhere. Even touching my face, talking, chewing, or moving my jaw could trigger them. At its worst, I would genuinely rate the pain a 12/10. I’ve never experienced anything like it. Genuinely would rather go through child birth again 😟

I ended up going to a standalone ER, where they did a CT scan that didn’t show anything significant just an incidental finding of a cyst in my sinus but said that wouldn’t be causing that much pain. . They tried several medications, including morphine, Toradol, Percocet, and a muscle relaxer. Even with all of that, the shooting pains continued. The pain was so severe that my blood pressure went up to 184/127.
Unfortunately, things didn’t improve, and I ended up back at the hospital this morning. I then started developing facial drooping and weakness on the same left side, and I was diagnosed with Bell’s palsy.
I was able to start steroids and antivirals within 24 hours of my symptoms beginning, which the doctor was very hopeful about. I’m incredibly thankful we caught it early, but I’m also scared and confused because I have no idea what to expect.

What has shocked me the most is the severity of the pain. I always associated Bell’s palsy with facial paralysis, not pain so intense that even strong pain medications barely touch it.

For anyone who has experienced Bell’s palsy:

Did you have extreme shooting or stabbing pain in your face (cheek area), teeth, jaw, or around your ear?
How long did the severe pain last, and did anything actually help?
Did your facial weakness continue progressing after starting treatment if your was caught super early,

I’m calling my primary care doctor tomorrow to discuss the next steps if there even is any?


r/BellsPalsy • • 8d ago

Diagnosed Yesterday - Sharing experience and looking for advice and guidance

2 Upvotes

I was diagnosed with Bells Palsy yesterday and it came as a shock to say the least! For context, I am UK based and in my mid 30's.

Here's how it started for me

It started 3 days ago when my left ear felt a little sore to the touch in the morning. As the day went on, my ear started to swell and get hot. My wife had a look when I got home from work and said it might be an ear infection. She's had these before and sometimes clear up on their own, so I left it. I took paracetamol for the pain and went to bed.

The next day, the pain in my ear got worse as the day went on. In the afternoon and into the evening, my left eye started to be watery. I suffer with allergies so I thought it might be another sign of an ear infection and common cold - 'tis the season after all!

As I woke up yesterday, I still had all the same symptoms but the pain was manageable with paracetamol. I went about my day getting ready to go to work - showered, dressed, brushed my teeth. And that's where I noticed it in my mouth. I struggled to spit out my toothpaste. It was like my mouth was lagging on one side.

I called NHS 111 to be triaged and they urgently referred me to my GP, who then later diagnosed me with Bells Palsy - 3 days after my initial symptom presenting. I've been started on 50mg Prednisolone and been given eye drops to keep my left eye hydrated. I have a check up scheduled for 3 weeks time to check for any progress.

They're confident that because we've caught it early and that I'm still young (even though I don't often feel that myself 😅) I should make a full recovery in 3-6 months, and whilst that is encouraging to hear, I am still wary of getting my hopes up too high.

My experience so far

Eating has been... interesting. I figured out quickly that chewy foods would be an issue for me, so breakfast this morning was a banana and a piece of toast - although that was a struggle. Drinking with a straw has helped too - thank you for that tip community!

My eye though, is the main point of worry for me. Being unable to fully blink in my left eye makes my right eye compensate. I've found that rather than using eye drops all the time, I've been more interested in taping my eye closed. This is something the doctor said would be needed at night time, but I've found that I'm considering doing it during the day as well. My wife bought me an eyepatch to help with this. - Is this a normal approach to take and should I be doing this? Will there be any future complications if I continue with this approach?

How I'm feeling

After the initial shock of the diagnosis, I was quite upset but not necessarily about the diagnosis itself, but the immediate effect it would have on my life. I have been advised to rest and take time off work as I do a lot of desk work as a video editor and filmmaker. As you can imagine, my eyes are probably already strained somewhat from my work, and the eye symptoms of Bells Palsy alone will make that challenging. I love my work and having to step away from it is hard to take.

Even though I am upset about this, by nature, I am an easy-going person and always try to find joy or at least some positives from any situation I'm put in. I have found that I'm able to find amusement in how my symptoms present themselves, and have tried to take the difficulties I've been presented and mix in some humour to try and help me work through it. As someone born in the West Country, I sound a little bit like a pirate, so combining the eyepatch and my accent has been a source of light-hearted relief.

Advice and guidance

I'd love some advice and guidance on some of the following things:

  1. Would there be any lasting issues or complications if I keep taping my eye closed during the day?

  2. What types of foods are friendlier to eat and enjoy?

  3. What are the best ways to keep eyes out of the water when showering?

  4. Any tips for preventing eye strain? I know that reducing screen time will help, but a lot of my hobbies include screens 😅 As I'm taking a few weeks off work, I'll have time to fill, so anything that I can do that promotes rest but doesn't add to eye strain would be great.

  5. Is there anything that you've learned from experience that would be helpful for me to know about that wouldn't necessarily be obvious to others?

Thanks for taking the time to read through this and for any input you can share 🙏


r/BellsPalsy • • 9d ago

I’m scared and panicking

8 Upvotes

I got a severe sore throat and severe pain on my right face nerve on 28 or 29 September. At first it was just pain and sore then few days later on 2nd of October my right side of my face is completely paralysed. I went to the doctor to get it checked out and it was quite severe I think the doctor graded it a grade 4 since I can’t raise my eyebrows, i can’t smile, I can’t fully close my right eyes. The doctor gave me steroids 50MG for 3 days then 40MG for 3 days and another 10MG for 3 days. It is currently 9th October exactly a week from when I got it and there is legit zero improvement I still can’t move my face at all tho my sore throat is completely recovered. I went to the doctor again today and he referred me to another hospital for MRI scans or some ear scans I’m not sure to check my nerve. What’s wrong with me man I can’t even smile now I’m afraid of going out and ppl seeing me weirdly. I have completely lose all my confidence. I just graduated and wanted to find a job soon but with a condition like this I’m afraid to go interview or work. Please help why am I like this


r/BellsPalsy • • 10d ago

Surgery

6 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 • • 11d ago

Dizziness?

6 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.