May 15, 2017

Bell’s Palsy


Here’s a free collection of resources about Bell’s Palsy- Bell’s Palsy blogs, support groups, first-hand experiences and advice from people who have Bell’s Palsy, etc.

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Bell’s Palsy Blogs

Here’s a list of Bell’s Palsy blogs- blogs by people who have Bell’s Palsy, or about Bell’s Palsy.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Bell’s Palsy Blog bellspalsy.me 2016
Hell’s Bells Palsy hellsbellspalsy.blogspot.com 2016
Holley Grainger holleygrainger.com 2016
BellsPalsy.net Blog bellspalsy.net 2015
My Bell’s Palsy Blog mybellspalsy.co.uk 2013

 

Bell’s Palsy Support Groups

Bell’s Palsy Support Groups On Facebook

  1. Bell’s Palsy Survivors Group (1926 members)
  2. Surviving Bell’s Palsy (1781 members)
  3. Bell’s Palsy 101 – Knowledge Exchange (992 members)
  4. Moms Living with Bell’s Palsy (684 members)
  5. I Survived Bell’s Palsy Group (659 members)
  6. Bell’s Palsy Indonesia (554 members)
  7. Bell’s Palsy Awareness Group (332 members)
  8. Bell’s Palsy Sucks Group (301 members)
  9. Bell’s Palsy Support Group (277 members)
  10. Bell’s Palsy Support Group UK (273 members)

Other Bell’s Palsy Support Groups And Forums

  1. Bell’s Palsy Association Support Forums (1,475 members, 16,855 posts)

 

Bell’s Palsy Survey

We’re surveying people about their experiences with Bell’s Palsy. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Bell’s Palsy**


Bell’s Palsy Symptoms

What symptoms have you experienced?

  • Pain behind left ear, watery eye, paralyzed left side of face, unable to shut eye. (Carrie L., 28 years old)
  • Pain around the left ear, numbness of the left side of my face. (Erjola, 29 years old)
  • Facial weakness, eye dryness, painful face and jaw. (Sophie, 30 years old)
  • Facial paralysis. Head pain. Facial twitching. Forgetfulness. Synkesis. (Sian A., 30 years old)
  • Facial paralysis, severe pain on affected side (behind ear and in neck), tingling sensation in neck, upper shoulder and face (affected side only), loss of taste on affected side, can’t smile, watering eye. (Katie, 32 years old)
  • Facial paralysis, pain, slight loss of hair on affected side, fatigue, eye sight issues. (Alan H., 32 years old)
  • Numbness on the affected side of the tongue, excruciating pain in the lower part of the back of the neck, in my temple, frontal area, eyebrow, cheek, mandible, teeth – all on the effected side (left side), but sometimes protruding on the right side, slightly. After reaching the peak, which took 4-6 days in total, I’ve experienced horrible pain in my lower jaw and teeth during the first night. It went away without supplemental medication (besides antivirals and steroids). (Andreea, 33 years old)
  • Droopy face, dribbling, cannot close eye, loss of taste. (Helen H., 42 years old)
  • Ear itch for two months before BP with on and off ear pain radiating from entire left side from jaw to temple. Headaches off and on before onset. The third month I woke up with mild droopiness, extreme pain in ear, jaw and front of head for five weeks. I had to quit my job for recovery. (Sara, 44 years old)
  • Facial paralysis. (April, 46 years old)
  • I had two separate Bell’s incidents, one on each side. 2010 on the left side and 2013 on right side. During both onsets, I experienced a tingling in my jaw area just below the ear. In 2010, I lost feeling and taste on the left side of my tongue. In 2013, I felt the tingling and then just woke up in the morning and couldn’t move the right side of face. The 2010 incident lasted about four months, but I was back to some normalcy in about a month in 2013. My left eye will start watering like I am crying out of the blue to this day. (Eric, 47 years old)
  • Paralysis of R.H. side of face. (Chris L., 70 years old)

Bell’s Palsy Interesting Facts

What interesting facts have you learned about Bell’s Palsy?

  • It affects everyone differently, and lasts for different lengths of time. (Carrie L., 28 years old)
  • That it’s related to stress and cold. (Erjola, 29 years old)
  • That it can be caused by an inner ear infection. (Sophie, 30 years old)
  • How life changing it really is. (Sian A., 30 years old)
  • How many different causes can have the same medical symptoms. (Katie, 32 years old)
  • How common it actually is. (Alan H., 32 years old)
  • Nerve mapping, nerve regeneration patterns, massaging techniques, possible causes of BP, side effects of treatment. (Andreea, 33 years old)
  • That no professionals know what causes it, or why it recurs, or how to prevent it. (Helen H., 42 years old)
  • Stress can cause BP. I was under a lot of stress for a year before BP. (Sara, 44 years old)
  • How to cope with it. (April, 46 years old)
  • That it can be recurring (obviously). (Eric, 47 years old)
  • The only way to confirm it is to operate behind the ear. (Chris L., 70 years old)

Bell’s Palsy Relief

What are effective ways to relieve your pain? (if applicable)

  • Massage and Ibuprofen. (Erjola, 29 years old)
  • Painkillers. (Sophie, 30 years old)
  • Medication, regular. (Sian A., 30 years old)
  • Heat compress, advil and extra strength Tylenol or Motrin combination, and sleep. (Katie, 32 years old)
  • Fresh fruit and vegetable juices! (Alan H., 32 years old)
  • Antivirals and anti-inflammatories prescribed by the doctor. (Andreea, 33 years old)
  • I found that heat helped a lot! Rest and no stress. Found facial exercises after five weeks for healing, helped with recovery. (Sara, 44 years old)
  • Ice and Motrin. (Eric, 47 years old)
  • Paracetemol. (Chris L., 70 years old)

Bell’s Palsy Difficulties

What are the most difficult aspects of living with Bell’s Palsy?

  • General day to day tasks – eating/drinking. Explaining to others what it is. Having a lack of confidence. (Carrie L., 28 years old)
  • Not having my smile and synkenesis. (Erjola, 29 years old)
  • Constant pain every day. (Sophie, 30 years old)
  • Not letting it beat me. (Sian A., 30 years old)
  • Cosmetic (different appearance), unbearable nagging pain that brings me to tears sometimes, and loss of function (I can’t close eye to sleep, and need to tape it down). I can only drink with a straw, etc. (Katie, 32 years old)
  • Facial paralysis. (Alan H., 32 years old)
  • The prospects of possibly having permanent after effects, synkinesis, social anxiety, the fact that doctors don’t really know what’s causing it and how to prevent it. The prospect of having another/other episode/s in the future. (Andreea, 33 years old)
  • Lack of confidence, self esteem, not been able to close my eye, or drink/eat properly. (Helen H., 42 years old)
  • Still recovering from it, but when I had extreme pain, I was not able to live my life. (Sara, 44 years old)
  • Someone laughing at you. (April, 46 years old)
  • The frustration in my 2010 bout was infuriating. I thought I was never going to be normal again. The speech thing was difficult too…talking on the phone was super difficult. (Eric, 47 years old)
  • First few weeks. (Chris L., 70 years old)

Bell’s Palsy Advice

What words of encouragement/advice can you share with others who have Bell’s Palsy?

  • Remain hopeful, stay strong, rest as often as needed, take one day at a time. Buy lots of straws ;). (Carrie L., 28 years old)
  • Patience and lots of facial exercises. (Erjola, 29 years old)
  • The movement gets better – keep with the physio exercises. (Sophie, 30 years old)
  • Let people help. (Sian A., 30 years old)
  • Hang in there. There are worse things to get. Count your blessings, find a support group. (Katie, 32 years old)
  • The main symptoms will pass. (Alan H., 32 years old)
  • The vast majority of surveys published so far say that most people fully recover within 2-3 months after onset. There is hope. Stay healthy, rest a lot, eat very healthy, and strengthen the immune system. (Andreea, 33 years old)
  • Take time off from work, limit stress. (Sara, 44 years old)
  • Just keep smiling. (April, 46 years old)
  • Hang in there…it got better for me…twice. (Eric, 47 years old)
  • It usually improves to some extent. (Chris L., 70 years old)

Bell’s Palsy Treatments

What’s been your experience with treatments (medication, massage, etc.)?

  • Amitryptline helped with the pain, but made me extremely tired all the time. (Carrie L., 28 years old)
  • I used B Complex for almost three months, had cortizone, and had facial massages and electrodes for six weeks. (Erjola, 29 years old)
  • Steroids (Dex) were very effective in the first few days and strong painkillers too. (Sophie, 30 years old)
  • Tegretol, amptriptyline, co-codomal, various eye drops. (Sian A., 30 years old)
  • Keeping myself relaxed as possible and valtrex helps me too. I get massages a few times a year. (Katie, 32 years old)
  • Medication, very little use, relaxation, and natural treatments have sped up recovery. (Alan H., 32 years old)
  • Meds – steroids and antivirals. (Andreea, 33 years old)
  • Steroids and anti virals only. (Helen H., 42 years old)
  • Slow and soft massaging helped and heat. The only medication that helped for five weeks of onset was only Dilaudid meds. After quiting my stressful job I did not have to take the medication anymore. I had mild head pain I could deal with. (Sara, 44 years old)
  • I only used the anti-viral meds (valtrex I believe), motrin and time. (Eric, 47 years old)
  • Waste of time. (Chris L., 70 years old)

Bell’s Palsy Recommendations

Anything you would recommend for someone with Bell’s Palsy?

  • Straws!! Laugh at yourself or you’ll end up miserable. (Carrie L., 28 years old)
  • It seems like you’ll never be like you used to be, but you need lots of patience, and be happy for the little progress day after day. (Erjola, 29 years old)
  • Use tape and eye drops for eye dryness, and try to be patient although it’s hard. (Sophie, 30 years old)
  • Get advice from fellow bells sufferers. (Sian A., 30 years old)
  • Keep your affected side warm and covered up in the winter, and get lots of rest. (Katie, 32 years old)
  • Floatation Therapy. (Alan H., 32 years old)
  • Stay healthy, rest a lot, eat very healthy, and strengthen your immune system. (Andreea, 33 years old)
  • Make sure you take steroids early. (Helen H., 42 years old)
  • Limit stress!!! If you don’t have lymes rest. (Sara, 44 years old)
  • Be patient!!! (Eric, 47 years old)
  • Be patient. (Chris L., 70 years old)

Bell’s Palsy Resources

What specific resources have you found most helpful?

  • I didn’t find much information on it. (Carrie L., 28 years old)
  • Internet. (Erjola, 29 years old)
  • Facebook groups. (Sian A., 30 years old)
  • Info from my doctor and my online support group. (Katie, 32 years old)
  • Internet. (Alan H., 32 years old)
  • YouTube, videos of people who suffered from BP, Facebook groups. (Andreea, 33 years old)
  • We bit from U.K. On BP. (Sara, 44 years old)
  • Nothing. (Chris L., 70 years old)