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21 October, 2017, 02:12:51 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: 18 October, 2017, 07:38:32 pm 
Started by kaitlinmartin2122@yahoo.c - Last post by Prals19
Hi, my situation is similar, i really feel for you. This is so hard, I'm glad to be here and to find people that can understand! Kiss

 2 
 on: 14 October, 2017, 01:37:47 pm 
Started by singlerayoflight - Last post by DebbieL
Hi and welcome.  I've never fully recovered either, and yes, it's a pain in the bum. Statistics say that 15% or so don't have a full recovery, and I think it's worse for those of us with RHS.  I've not found a forum for non-recovered folks.  But welcome!  I'm one of you!

 3 
 on: 14 October, 2017, 12:16:12 pm 
Started by Tiamas - Last post by Tiamas
Hi guys wondering if anybody after 3 months from having bp has had the following weird tension headaches above the eyes eyebrow line etc stiff muscles down the back of neck sometimes in the shoulder
When thought about the symptoms do get worse when active they are fine twitching in the face ear can be swore and burn inside and wake me up often also very small lump behind ear I have been the doctors and they say it is fine do not worry also feel tired towards end of the day

 4 
 on: 14 October, 2017, 03:44:02 am 
Started by singlerayoflight - Last post by singlerayoflight
hey, I'm a 30-year-old who's had facial paralysis for 18 months. Ramsay Hunt Syndrome. It was total paralysis of my right side, and 3 lesions in my ear. I've had a bit of recovery. After 4-5 months, I could fully close my eye again, and my droop was completely gone. A little after that I could start twitching the muscle in my cheek. The postherpetic neuroglia went away after 10 months. And now to strangers, unless I'm really excited when I'm talking, you can't really tell too much. So, I'm very grateful for how much I was able to get back. But this morning, I couldn't let go of how I'm still not normal. Everyone who's had a chance fully recover knows that relief when you can finally raise your eyebrow again. Express yourself properly. Not worry about a strong wind making your eye water. I'm not going to get those things. I'm going to turn my face to the side every photo I can. I'm going to be lopsided kisser. I have to hold my lips if I want to whistle.

I have no one in my life who understands these problems. And I know, with perspective, these things aren't the end of the world. I can't do anything about it, so why be mad? I work in a hospital, so I had different staff stop me every day for months, making sure I wasn't having a stroke. I was appreciative of their concern, and it reminded me that I could have had something far worse happen to me. At least I still have half of a working face! But this morning...it wasn't enough. And I think that's okay. It's okay to feel sad over things you've lost sometimes. But I just don't have anyone else in my life who knows my problems because they've dealt with it too.

Most of the people I see here recover. Is there a place for those who never fully heal?

 5 
 on: 09 October, 2017, 04:51:02 pm 
Started by kaitlinmartin2122@yahoo.c - Last post by kaitlinmartin2122@yahoo.c
Hi everyone!

I was diagonosed with Bell's palsy in early march and recovered I'd say about 95-97% within about 6-7 weeks. Right before I noticed my hair felt as if it had been ripped out of my scalp on my right side and then I just felt sick and tongue lips and nose started feeling weird on that side. Within a couple of days I woke up and had zero movement on that side. About 2 days in I felt as if someone had taken a baseball bat to my face on the eighth side repeatedly and as if I should have been black and blue. Fast forward to now and I still have pain on my right side of my entire face when touched. But not nearly as bad.
I'm now experiencing a twitch right beside my right eye around the beginning of my eyebrow. You can visibly see whatever it is jump and twitch. This is causing migraines constantly and feels horrible. I don't feel well and other things don't feel what I'd call normal for myself on that side. This has been occurring since last Monday. Has anyone had this experience? Could I be getting bell's again?

 6 
 on: 07 October, 2017, 01:04:27 am 
Started by Sinful Sailor - Last post by yikes
I had two front teeth replaced with crowns about a month and a half before the onset of Bell's. It was heavy-duty dental work and of course I suspect that as a cause.

But I do think a lot of adults will have had dental work in the recent past at almost any time in their life. You could say I'd eaten swordfish and then gotten Bell's and an awful lot of people would agree with that. Or, I had a lot of stress and then got BP.

Certainly worth further investigation, though.

 7 
 on: 06 October, 2017, 01:19:29 am 
Started by Macazzar - Last post by DebbieL
My husband took it briefly for post herpetic neuralgia after repeated episodes of shingles.  He hated it, said it made him almost as brain dead as Lyrica.  But I have a friend who takes it rather successfully for diabetic nerve pain after being unable to handle Lyrica.  Everyone deals with various drugs in different ways

 8 
 on: 05 October, 2017, 10:18:28 pm 
Started by Macazzar - Last post by Macazzar
Dr suggested taking 300mg Gabapentin per day to help constant twitching - titrating up to 900 but I'm not convinced it will help so haven't filled prescription yet does anyone have any experience of this?

 9 
 on: 29 September, 2017, 10:55:36 pm 
Started by HippyGal - Last post by Bernadette
Hi Paul,

Just to go through the points you raised:

1. If you should have a variant of G-B, then it is possible that steroids would delay recovery (although they might have no effect at all) and might  increase the risk of developing diabetes which requires the use of insulin see for example https://www.ncbi.nlm.nih.gov/pubmed/27775812

2. If you should have Lyme disease then the steroids would quite possibly lead to a worse long-term outcome e.g increase the risk of the development of synkinesis https://www.ncbi.nlm.nih.gov/pubmed/27598389

3. There is bound to be an underlying issue in all cases of facial palsy. The assumption in Bell's palsy is that it is the Herpes (cold sore) virus that is responsible.  IgG antibodies are very important in fighting viral infections and  in mounting a defence against the herpes virus https://www.ncbi.nlm.nih.gov/pubmed/2824680  Perhaps low IgG means that your response to the herpes virus is not so effective? Perhaps you should be taking an anti-viral now?

Worth noting that corticosteroids like prednisone and prednisolone reduce the levels of IgG antibodies https://www.ncbi.nlm.nih.gov/pubmed/681628

4. It is possible to have long term Lyme disease (chronic Lyme disease), but Lyme disease was not diagnosed in 2008 and a characteristic rash usually occurs (but not always) with that condition - not just swelling around the bite https://www.google.co.uk/search?q=rash+in+lyme+disease&source=lnms&tbm=isch&sa=X&ved=0ahUKEwih2quIrMzWAhVJFMAKHdhDD_AQ_AUICigB&biw=1600&bih=794 Did you have anything like the rash in the pictures?

Hope you get to the bottom of the problem!



 10 
 on: 29 September, 2017, 06:47:31 pm 
Started by HippyGal - Last post by PaulBP
However, if the facial palsy has occurred as a result of Lyme disease or is a Guillain Barre variant then the steroids probably will do more  harm than good.

Thanks for your response Bernadette.

What sort of negative effects would the steroids have should I have G-B or Lyme?

I'm fairly sure I don't have G-B but Lyme was always something in the back of my mind since I fell ill in 2008.

I made a trip from London to Mongolia and got eaten alive by mosquitoes and I guess a few ticks could have been feasting too. I had large areas of swelling/rash around a couple of bites, then a month later I woke up with a foggy head, difficulty finding my words and weak arms/shoulders. I also had some slight balance problems but visits to numerous neurologists and the centre for infectious diseases in London couldn't pinpoint anything.

They did however find that I have incredibly low IgG and IgM, but as I don't ever suffer from infections they ruled this out as insignificant...

I had actually noticed an anisocoria in my left eye and ever-so-slight loss of tone in my left cheek 12-14 months ago. A CT with contrast showed no aneurysm behind my left eye and no other issues, so this hasn't been followed up either...

Wondering if there is some underlying issue contributing to this new case of BP...

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