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20 August, 2017, 10:53:15 am
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WELCOME TO THE ONLINE FORUMS FOR THE BELL'S PALSY ASSOCIATION | Charity Reg. 1094039


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 1 
 on: 19 August, 2017, 02:26:24 pm 
Started by clarebear - Last post by Bernadette
Hi Clare,

Glad the blood taking went well and you have won the nurse over!  Cheesy Also great that you are enjoying the animals. I love them, too!

Those sound like very healthy foods and the addition of the B12 and Vitamin B complex  is a good idea, I think.

I would say one thing though and that is that many of those foods are high in potassium and low in sodium which can be a good thing. Nuts and seeds are particularly high in potassium and low in sodium http://nutritiondata.self.com/foods-012122000000123000000-w.html?maxCount=44
Nerves need both potassium and sodium to conduct. The balance of those is generally under tight regulation by the control systems of the  body.  However, I know of two people who developed Bell's palsy after suffering from very severe night-time menopausal hot flushes to the extent of being saturated with perspiration all night. They hadn't had a virus prior to the Bell's palsy either. Can only assume that the night sweats could have lead to hyponatraemia (low sodium blood levels)  - there's research which shows that nerve conduction is affected by low sodium levels http://onlinelibrary.wiley.com/doi/10.1111/eci.12597/full Sodium is lost in high concentrations through sweating, and potassium (and magnesium and calcium) are lost in low concentrations through sweating.

Hyperkalaemia (high potassium levels) can actually lead to a Guillain Barre type paralysis too http://www.annalsofian.org/article.asp?issn=0972-2327;year=2012;volume=15;issue=4;spage=339;epage=343;aulast=Naik

This is not a subject which has been researched in Bell's palsy generally because no blood tests are taken.

You might be able to get some information about your sodium and potassium levels when the blood tests come back. Might not be relevant in your case because the sores seem to indicate Ramsay Hunt, not Bell's palsy or Guillain Barre syndrome.

Something else to take to your doctor Cheesy


 2 
 on: 19 August, 2017, 01:43:05 pm 
Started by clarebear - Last post by clarebear
Hi Bernadette and Debbie,

Thank you for your replies and support. Sorry for the delayed reply. It has been quite good to have been busy getting ready for this pet sit and then settling in here. The animals are lovely, although it is on an incredibly steep hill and I have no choice but to brave it for walks. I was shattered yesterday but then I had been busy getting ready, then quite a long drive here and then the new steep walk. I'd been taking it easy and walking on the flat when doing my regular dog walk (someone else is filling in for me while I'm here as I'm living in rather than just visiting while the owners are working at my regular walk) so it was a bit of a change.

The blood taking went well but I kicked myself for not asking what the tests were. The nurse managed to find some blood which was good as sometimes my veins hide. I didn't tell her that before hand but did congratulate her afterwards which made her smile after a frosty start. Maybe she was having a bad day.

Anyway, I am waffling! Just wanted to say thank you both. I might start a new thread but was wondering if anyone had any tips on good foods to eat to help repair nerve damage?
I have had a look online and found some ideas but was surprised that I couldn't find much. After all I firmly believe that we are what we eat. I find it strange that there isn't more dietary advice in the medical profession. I am careful with my diet as I don't eat meat or dairy but do eat eggs as we have our own rescue chickens. I have added in vitamin B12 and a vitamin B-complex just to be sure during healing. Avoiding tea! Please, I'm British! Seriously though it is known to reduce absorption of B vits so I'm trying to have herbal instead. I assume this goes for caffeine too. Also, alcohol and sugar. Omega 3 is important I know and Vitamin D (tricky with the UK summer as it is!)
Here are a few suggestions I've seen so far, most of which I eat regularly but good to know to have more often:
Leafy greens (Kale, cabbage, lettuce)
Sweet potato
Brazil nuts
Walnuts
Flaxseed
Pumpkin seeds
Tofu
Avocado
Fresh pineapple
Oats
Almonds
Sesame
Wheat germ
Spirulina
Celery
Courgette
Carrots
Hemp seeds
Mushrooms (vit D)

 3 
 on: 19 August, 2017, 12:29:56 am 
Started by Mrsxkitty - Last post by DebbieL
Most people only tape their eye shut at night.  I used these.   http://www.nexcare.com/3M/en_US/nexcare/products/catalog/~/Nexcare-Opticlude-Orthoptic-Eye-Patch?N=4326+3294529207+3294631529&rt=rud
Here's a good article on eye care:  http://bellspalsy.ws/eye-protection/

Every single case is different.  No one can say when you will recover... days, weeks, months.  All you can do is rest, let your body heal.  Don't force anything, no heavy massages (gently rubbing moisturizer on your face is ok, but gently), no zapping it with electricity, no staring at the mirror every 5 minutes trying to make your face move.  Seriously, the skill most needed to recover is patience!!! 

Best of luck.  Please try to be patient and don't freak!

 4 
 on: 18 August, 2017, 11:00:08 pm 
Started by Mrsxkitty - Last post by Mrsxkitty
Thank you ❤️❤️❤️ I heard if you do face massages it could help and always my eye is twitching a lot today. Iím not sure if that is improve or normal.

 5 
 on: 18 August, 2017, 09:24:16 am 
Started by Mrsxkitty - Last post by Bernadette
Hi Kitty!

Don't worry too much, it is almost certain that you won't have this forever.

Most people recover almost completely by four weeks. The facial nerve starts conducting impulses again.

That does not apply to everyone, however. If the nerve is more seriously damaged, then the body will get rid of the axons of the nerve cells and they will  have to regrow and resupply (reinnervate) the muscles of the face. This inevitably is a fairly slow process. It can take up to six months for everything to start working again. Unfortunately, there can be some problems when this happens. The nerve is new and may  respond too readily leading to spasms etc. Later,  spasms etc (optionally) can be treated with Botox.

Pains while you have this seem to vary. Often they can be worse just before the nerve starts to function again. I was in severe pain at about Day 10.

The problem with sound is caused by the facial nerve not conducting. As soon as the nerve starts working again the sound problem will end.

Perhaps a good idea to put some big sunglasses on and go for a walk - it will make you feel brighter. Nobody will notice anything is wrong with you.

I went once to the GP to get a prescription for the steroids and that was it. My face came back to normal.

Debbie is the expert on eye care.

Hope you have a quick recovery!

 6 
 on: 18 August, 2017, 07:51:52 am 
Started by Meyzin - Last post by Meyzin
Hi, I am here to seek help for a random topic. I was diagnosed with Bell's Palsy two months before. I was partially paralyzed on the left side due to this disease.
While researching online, I found that tooth infection can cause Bell's Palsy. My upper wisdom tooth has decayed and has fallen into pieces. I was planning to have wisdom teeth removal from Toronto next week. But, I am scared whether this could worsen my condition.
I was wondering whether anybody over here had a similar experience. I have been told my doctor that wisdom tooth has nothing to do with the paralysis. Anyways, I am scared and confused. Is there anybody over here who can help me with this? Please give some genuine replies and suggestions. Thanks in advance.

 7 
 on: 18 August, 2017, 04:03:19 am 
Started by Mrsxkitty - Last post by Mrsxkitty
Iím only on a week, Iíve done tons of research honestly itís has consumed everything Iíve done. Everyone told me this was at the most 3 months before recovery. But reading everyoneís story and see some people still havenít healed for over a year is really freaking me out. I feel so ugly, and gross. My smile is my pride and joy, my eye is so saggy and my whole left side is way way lower. I donít want to be seen by anyone. I tried different tapes to hold my eye down, but not I just have this crazy red marks around my eye. I have never even heard of this illness and honestly when I first got it.. I couldnít find out what it was. Does this come back after you heal? Will I have it forever? What is the best drops because nothing is working. I tried regular and gel. Will the pain behind my ear go away or will it be here until Iím fully healed? I canít take light or even sound. Iím totally freaking out about all this. I have to many questions and concerned and honestly I way to overwhelmed to think of any of this when I was at the doctors. Should I have a recheck up?

 8 
 on: 17 August, 2017, 02:59:20 am 
Started by clarebear - Last post by DebbieL
Blood test and MRI are great ideas, but the EMG is painful and unnecessary.  I had one with my second RHS episode, and all it does is scare you because there is nerve damage, but they can't tell you when it will heal.  You already know you have nerve damage! 

Many doctors don't appreciate input from educated patients, which is a shame.  I'm very lucky to have a GP who is always learning, always mentoring Physicians Assistants in training from a local university. He offers referrals, or will tackle most any ailment if the patient prefers.  I'm currently being treated for Hashimoto's Thyroiditis.  It's made me hypothyroid and I'll be taking thyroid replacement for life, plus having ultrasounds of my thyroid every 6 months as it is causing nodules.  I had the first one biopsied, and it wasn't cancer, yay!  We discussed treatment, and he consulted with an endocrinologist who agreed that my doctor can order the blood tests, ultrasounds, biopsies, and prescribe the meds and the waiting time to see him is days, not months as it is to get into the specialist. 

But doctors like him are few and far between, and I know how blessed I am.  He's younger than I am, so hopefully I can keep going to him for many years. 

My husband and I have 4 dogs and 10 cats, we know how important your job is!!  Enjoy the week of critter sitting!

 9 
 on: 16 August, 2017, 08:26:40 pm 
Started by clarebear - Last post by Bernadette
Hi Clare!

I really wouldn't take it to heart that your doctor wasn't too pleased about your supplying information.

You did brilliantly to go there and put the points, especially when this condition really drags you down. That was very brave.

It is pretty obvious though that it is Ramsay Hunt syndrome if you had the characteristic sores.  Perhaps he wants to do the blood tests to check for the virus? This seems to be possible https://medlineplus.gov/ency/article/001647.htm Debbie will know for sure about how that works.

Fingers crossed that recovery starts soon - you'll feel so much better and happier then.

 10 
 on: 16 August, 2017, 04:35:21 pm 
Started by clarebear - Last post by clarebear
Thanks Debbie. I did take my notes but to no avail. The sores in my ear that could be seen have gone even if it still really hurts like they are still there. I got the feeling he didn't believe me and I was wasting his time as I am better than I was feeling, even if my face hasn't improved. I asked to see a specialist sooner but he said as I was feeling better than I had been that that wasn't possible. He said if there was a new cluster of sores or I felt worse again then they would consider more antivirals. He has asked me to go back for blood tests tomorrow morning to check my liver and kidney function I think he said. I will of course do that.

Something he said made me feel like he didn't believe it was Ramsay Hunt Syndrome and he's looking for another cause of my feeling unwell. The daft thing is before this all happened I was feeling great, not stressed, and even after it happened I felt pretty positive, even when I started to feel most unwell I didn't mope around. I took things easy but got on with things when I felt I could. I am a pet sitter and dog walker so self employed and things have been quiet lately. So I've been able to take things easy. It is since this weekend just gone that I feel more negative about things. Sunday was a very dark day but I do feel better now than I did that day. Although today wasn't a good day but not nearly as bad.

At the end I gave the doctor the articles Bernadette mentioned just in case he was interested in some bed time reading. He is a GP though so it isn't his field. He highlighted the one based on one case and said that wasn't they way routine treatment was done - i.e. based on one case. I know that but it made me feel small. I realise now it was probably a mistake to give them to him. Hey ho. Just need to pick myself up and get on with things. I've got a busy day tomorrow getting ready to go to a live-in pet sit for a week. It isn't as local as usual so I need to make sure I've got everything I need for the week.

Clare

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