Bells palsy/facial paralysis/ R H S ..

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richie
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Bells palsy/facial paralysis/ R H S ..

Post by richie » Thu May 18, 2006 5:12 am

http://www.bellspalsy.org.uk/membership.htm


Bells palsy/facial paralysis/ R H S ..

take a moment to look at these links

http://home.ix.netcom.com/~jscheer1/index.html


http://www.changingfaces.org.uk/
_________________

Hi guys I at last found a site for fellow suffers 600 members Its got forums like ours and guests can read the posts [just click the link on my signature to get to the forums on left side of site] Have a look. There are some very sad stories one concerning A mother who got it over the last week and just asked “please Help me” very sad as she has three children.

The link is on my signature the other link on top of this thread is for donations Any help would be appreciated our british government seam
Uninterested their is an american site listed also for your help in this.

Cheers
Richard
------------------------------------
PAIN

I walk these sinuous paths, ever winding around these endless tortuous days, hoping for those echoes of forgetfulness. A velvet cushioned seat, sinking within the shadows, once more Longing for sleep Lost in the weary flow of time, monumental in its grandeur. Bringing the burning pain again, as I kneel broken beneath the vastness of utter desolation. Once more I walk in the garden of my own Gethsemane’ among the ghosts that cloth me in garments of sorrow.

Richard
2006
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Last edited by richie on Sat May 20, 2006 1:49 am, edited 3 times in total.

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Post by Friend_forever » Thu May 18, 2006 7:09 am

You are suffering from Bells Palsy? I have had 3 attacks already... actually got my first attack when I was 11... really injures your personality and self esteem... considering you cant talk proper... the "P" is so hard pronounce...

I pray you recover like I have been lucky to recover the last three times...
And as I watch you in this light
I never realized your eyes were full of
So many colors.
~ Jadynara

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ninian
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Post by ninian » Thu May 18, 2006 8:20 am

I had Bell's Palsy at 16, mostly recovered in about 6 months and had no residual effects after a year. I find the range of experience interesting. I don't recall having a huge amount of pain, I do recall having one eye watering all the time and the inconvenience of the timing - the initial paralysis occured a week before school pictures. It's been over 20 years and I've never had a recurrence or any residual issues.

Ninian
Anyone can be passionate, but it takes real lovers to be silly.

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richie
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Post by richie » Thu May 18, 2006 9:49 am

hi freind i'm very pleased you are ok and pray you never go through it again i may talk proper on here but afraid i don't in real life my right lip is not better and that effects all talikng and eating and drinking

richie

http://home.ix.netcom.com/~jscheer1/index.html


http://www.changingfaces.org.uk/
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Last edited by richie on Fri May 19, 2006 4:45 am, edited 1 time in total.

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Post by Friend_forever » Thu May 18, 2006 10:07 am

Oh I understand completely... only half the eye closes... and the left lip is completely useless...

What helped me was chewing lots of things - like chewing gum a lot and chewing on sugar cane.... carrots etc... and practicing funny faces and trying to wink with the left eye and also massaging the left side of my face...

Maybe you can try those... massaging your temple nerve especially because thats the one that supplies blood to that side of your face...
And as I watch you in this light
I never realized your eyes were full of
So many colors.
~ Jadynara

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richie
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Post by richie » Thu May 18, 2006 10:28 am

Definition of bells palsy

http://home.ix.netcom.com/~jscheer1/index.html


http://www.changingfaces.org.uk/
_________________

Bell's Palsy is facial paralysis, normally affecting one side of the face, and can last from a number of weeks to a number of years. In most cases (approx 80%) the condition recedes after 3 months though for a proportion of sufferers the symptoms can continue indefinately. Most patients suspect they have suffered a stroke when first faced by it's effect and a visit to the doctor helps alleviate their fears. Symptoms normally include; a drooping or sagging mouth, facial pain, drooling, loss of taste, inability to close the eye resulting in tearing ......Bell's palsy is an acquired weakness of one side of the face, due to an injury to the facial nerve. The symptoms on the affected side typically include inability to close the eye, to smile, wrinkle the forehead and whistle. Speech may be mildly slurred. Tearing occurs because the eye does not close completely. Taste sensation may be diminished on the front half of the tongue. Sounds may appear louder on the affected side (hyperacusis) -- this may be caused by paralysis of the stapedius muscle but also occurs independantly. Papillitis may be seen of the fungiform papillae of the affected side. Bell's palsy usually develops over hours to days. The peak involvement usually happens within several days. Mild pain behind the ear is common at onset, as is a subjective sensation of "numbness" of the affected side. Usually it is first noticed when a persons observes it in a mirror, or on eating because food tends to collect between the cheek and gums.


How common is Bell's palsy ?


-----------------------------------------
SOME COMMENTS AND REPLIES ON THE SITE FROM SUFFERS

first time having BP. Please someone tell me how to keep my eye shut? Its burning its so dry but the tape and the gauze are not keeping it shut I have been given the steroids and the antivirals i will start it tomorrow. I am so distraught..scared......upset.....HELP 34 yr old woman with 4 children a full time job. I dont have time to rest let alone be sick! I also just lost my dad weekend before last, this just all sucks!!




CopingWithBPBPA
I'm sorry to hear about your father. I've just been diagnosed as well. It's hard finding something to keep my eye shut. I know they say we're supposed to sleep with the eye patch but I don't. I've just been applying the eye drops every hour. It is very frustrating. Now for the first time in my life I know what it feels like to be half blind and to actually have to turn my head to see what's behind me or next to me.

----------------------------------------


Hi Stress plays such a major part in bp...so sorry about your loss. I am newly diagnosed as well...in my first week and just trying to go day by day with this. I truly just feel that i want to isolate from everyone until i start to look and feel normal again. Being a mom like you and having a job makes that almost impossible...hang in there...take your meds...try to get help so that you have some rest time. It seems to be key with me...when im tired my symptoms are so much worse...feel free to e mail me if you want to talk....take good care Andrea
----------------------


I had Bells Palsy for only 3 weeks but i am left with quite distressing residuals, the right side of my face spasms at night and i look as though my cheek has a dent in it, this goes on for hours and when i eventually get to sleep i wake up and it has stopped, until the next night. My partner actually sat beside me and watched it happen he could see my face pull in and contract before releasing, it felt very uncomfortable. It is important to have support from your friends and family, as i did, i was very depressed at first almost suicidal, but thanks to that support i got through it. YOU WILL GET BETTER xx
Last edited by richie on Fri May 19, 2006 4:46 am, edited 6 times in total.

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moonflower
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Post by moonflower » Thu May 18, 2006 4:19 pm

so sorry to hear you are still suffering from the symptoms richard..i hope they improve soon!..dont stop writing!..you are in my thoughts..

:grin:
inside each soul there is music...let the music play..

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richie
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Post by richie » Fri May 19, 2006 12:32 am

thank you love very kind i am blessed more than these poor people bells can be a nightmare any support will be appriciated or just messages of support to any of these sites they will except your poems too



http://home.ix.netcom.com/~jscheer1/index.html


http://www.changingfaces.org.uk/

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richie
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Post by richie » Fri May 19, 2006 12:58 am

ninian wrote:I had Bell's Palsy at 16, mostly recovered in about 6 months and had no residual effects after a year. I find the range of experience interesting. I don't recall having a huge amount of pain, I do recall having one eye watering all the time and the inconvenience of the timing - the initial paralysis occured a week before school pictures. It's been over 20 years and I've never had a recurrence or any residual issues.

Ninian
http://home.ix.netcom.com/~jscheer1/index.html


http://www.changingfaces.org.uk/
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quote from Ninian


I find the range of experience interesting. I don't recall having a huge amount of pain, -

I don't think I find intresting a word i'd use in regard to bells more like "nightmare" perhaps you where lucky ninian as for the pain it too is a nightmare AS those with the side effects of R H S .. will tell you i hope you don't ever get it again
Last edited by richie on Fri May 19, 2006 5:13 am, edited 2 times in total.

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Mystified
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Post by Mystified » Fri May 19, 2006 4:28 am

Its actually R H S .. Ramsey hunt syndrome.. The facial aspects are the same however the pain and other symptoms that go along with it are a nightmare for sure..

A few other links include...

http://www.bellspalsy.ws

http://www.bellspalsy.net/forums.php

http://www.ramsayhunt.org/forum/

http://www.geocities.com/crookedsmiles2003/ (a poetry one)

http://brain.hastypastry.net/forums/ (scroll down to the bells palsy section)


A word of warning before you proceed.. Alot of people have different idea's of whats helpful and whats not. I suggest you really study up on treatments for residuals before accepting anyone's word for it.. There are alot of Myths when it comes to healing BP.. and some of them can be more harmful then good! There is no "cure" to bells palsy other then allowing your face to heal within its own time.. There are however treatments for residuals...


Take care
"It's better to be hated for who you are, than loved for who you are not!" - Unknown

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richie
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Post by richie » Fri May 19, 2006 4:39 am

Thank you mystified I’m sorry about the abbreviation I will Put that right on the British site they where asking for help that Is why I posted this they do so much to ease peoples minds and Are a godsend to those who are afraid and seam helpless I will do anything I can to help in any way those Who suffer from this terrible illness?

Take care and god bless

Richie

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Post by Mystified » Fri May 19, 2006 4:41 am

Richie you have a good heart my friend.. Dont change!!!

Take care

Myst
"It's better to be hated for who you are, than loved for who you are not!" - Unknown

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Wraith Chimera
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Post by Wraith Chimera » Fri May 19, 2006 3:10 pm

Richie my heart goes out to you and all the sufferers of Bells. I have a very dear friend that has been suffering from this. I will check out thi links that you and Mystified have posted up. Thank for sharing these sites with us. :hugs:

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richie
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Post by richie » Sat May 20, 2006 8:23 am

Thank you for responding and reading if you look at the photos in the links you will see people wh are hurting but also notice smiles that is the human spirit which endures and overcomes.

cheers
:hello: :grin:

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richie
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Post by richie » Thu Jun 01, 2006 1:24 am

After a fascinating debate in the "Stress" thread, it has been suggested that a thread about dealing with stress through "spiritual" methods like meditation, for example, should be posted for the benefit of all.

The best method I personally know of for dealing with stress, or generally just to calm the mind and help to develop Pure Awareness, is through Zazen meditation, meditation used by Zen Buddhists.

I have already made a thread about this with detailed instructions on how to go about this here. Read, absorb and practice.

There are other forms of meditation available as well, endeavouring towards different mental states of peace, compassion and equanimity.

One method is known as the Compassion Meditation.

First, practice the Zazen Meditation and calm the mind to a sufficient level. Then, once your mind is calm and your breath is slow and steady, picture in your mind a person you really love. Imagine them smiling happily at you, and in your mind give them a big, warm, loving hug. Feel the love and warmth for that person suffuse your entire being. Feelin' the love? Good.

Next, imagine this extreme loving and compassionate feeling resonate from you in a loving circle of warm light. Now, what you're going to do is extend this circle to include friends and acquaintances, people who you meet with most days and like. Include them with the same loving, compassionate feeling that you have for your special loved one. Give everyone a big hug! Go on! You'll feel great.

Once you've developed, in your mind, the ability to be able to include loving your friends and acquaintances, extend your circle further to include those people who annoy you. You might have to meet them a few times for business or whatever. Include them in your circle of love. See them do something to you that really annoys and instead of reacting like you would, smile at them dearly, cherish them, suffuse them with your warmth and love. Give 'em a big hug! Well done!

Finally, there's the last test. Think of someone you truly detest. You can't stand them. The sight of them truly makes you grit your teeth and clench your fists. Guess what? Extend the circle of loving and warmth you've developed. Go on, you can do it. Suffuse this detestable person in warm light of love and compassion. See them do something to you that really makes you wanna scream. Smile at them. They're human, just like you. They're scared, fearful. Suffuse 'em in warm light. Then, GIVE 'EM A GREAT BIG HUG!!! SQUEEEEZE! Kiss 'em on the head. Make them smile.

Congratulations!

Practicing this everyday will enable you to develop love and warmth to all people, regardless and help you to approach new faces with openess and warmth rather than suspicion. It automatically reduces stress levels as well.

There are other methods of meditation. If you want to know more, let me know.

got this from a freind stress is important in palsy [to avoid at all costs]

richie

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