10 months and waiting

I am coming up on 10 months with Bells Palsy. I am still waiting for my tears, saliva, , taste buds and full blink to return. It is on the side that my good eye is on. I have low vision in the other eye. I have to patch my eye much of the time since it is so, so dry - which means I see very little while its patched. I started being able to close the eye 2 months ago. But blink is not fully restored and I need tear to return. Constant dry, dry mouth. Everything taste bad. I've lost 28 pounds. Difficult to eat when things taste bad. When I try to move my face, I have noise in my ear and ear is sensitive to loud sounds. I am at the end of my rope with this illness. I have little quality to the life I am having to live. Has anyone else had an experience like mine and how did it turn out?

11 Replies

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  • What have the doctors recommend? Have you tried acupuncture? My eye is dry and I hate not tasting anything either. I'm only a couple of weeks onto this so can totally understand your upset.

    I would keep at the doctors though, they must be able to help you more. Keep strong.

    Isabelle.

  • Thank you Isabelle. It helps to read your kind words. Even thought I have family, I have felt very alone at times while dealing with Bellls Palsy. Hard for those who haven't had it to understand. I pray a lot each day and I keep telling myself to be patient. My husband has been amazing at taking care of me during this. I had to give up my job since I couldn't read from the uneffectef eye. I am 59. Didn't expect to have to retire early. Doctors tell me it's just a waiting game to determine how much I will recover. I am seeing improvement, it is just a slow process. Thanks again!

  • They say it's slow, I'm only a couple of weeks in and I agree it's so difficult but I am trying to stay strong for my self and my family. I would defiantly go back to the doctors and ask for extra help somehow although I'm not sure what they can do. You have to keep as strong as possible but remember, we will get better!!! I am thankful it's not a more serious illness even though it's VERY hard to be dealing with it's going to go away!! Keep thinking that and it will!! Take care. I

  • Hi Janet... Try to stay as positive and relaxed as you can. Sometimes its a long process with Bells Palsy its awful , I know.

    Try your GP again , I would use the Facial Palsy web site and use their resources, they will probably be more help than your GP in terms of guidance, or they will guide you as to where to be referred to depending where you live.

    Stay strong

    Debbie xx

  • Thanks Debbie. It helped to read your kind reply. I am seeing improvements, but it is s slow process. I pray for healing many times s day. I had to give up my job. The boredom had been really rough since my vision is limited when my eye is taped shut. I try to remind myself that I will get through this. Some days are harder than others. Thank you for your reply and kind words.

  • It sadly is a long recovery and can be frustrating. I've had it since 2000 and have never fully recovered. Had a major relapse in 2013, by which time more was known and I've been having treatment since, seeing progress, but it is slow. I had a mini relapse last year and currently off work again having had another relapse. I'm lucky in that there's a facial palsy unit at a hospital near me. But keep going back to your doctor and use the facial palsy website. There is things they can do to help, but the theory is less is more to start with as it can do more harm if too much done too soon. Took nearly a year before i saw a facial physio and a bit more to see an eye specialist. For your eyes can I suggest a wheat eye bag. You need one with linseed or flax in. It helps with the moisture level in your eyes and is also great to help you relax. Something that is also important. Try wheatybags.co.uk for eye bags. Just take seconds to heat in microwave. I was lucky with my taste buds. Once I get rid of the taste of the steroids (last dose Saturday, thankfully) I'm fine, although I did prefer spicy food for a while. I've got use to it all after 16 years and just take it in my stride. I will admit I do get frustrated at the lack of energy I have for a while after. My philosophy is have that little cry of frustration and then give myself a kick and tell myself to stay positive. Harsh, but it works for me and until this recent relapse my smile had finally become normal again after 16 years. Touch wood steroids are working and won't set me back to much. I hope this all helps.

  • Thank toy for you reply. It has helped the mental part of this in the past week to hear from others who understand what it's like to have Beel's Palsy. I don't know anyone who has had it and have felt very alone. I live in the US. Doctors here look at you and say, oh it's a nerve issue, nothing we can do......you just have to wait it out and see how much you recover. They did steroids and antiviral so in the beginning. I've been struggling with nerves and depression, but medications dry the eyes and mouth too much. Will be starting with talk therapy in two weeks. I have always been a stong, in charge, look after others type of person. With this, I feel I have lost control of my life. This has devasted me. A few weeks ago I was ready to leave this world. I will do my best to stay positive and move on with life. I have been in a pity party for several months and I have to find a way out of that behavior. I have read about others who have had it as long as I have and they still see more recovery occurring. Praying I will be one of those. Thank you for your kind words and support.

  • I'm happy to help others who suffer. The care across the uk varies. Many doctors don't know much about it either. Keep fighting for care. There's plenty of options depending on your issues where the Bells palsy is concerned. Not needed speech therapy myself, but assessed for it. I see a facial physiotherapist to help retrain my facial nerves and muscles. Not sure if that available in US. I know its hard, but don't let it beat you. Stat positive it helps the recovery and judging by what you've said, your probably still at early stages of recovery. It can be a long haul.xx

  • Hi Janet I am so sorry that you have had to give your job up , progress will be slow but there will be progress, and you will get through as hard and horrible as it is, you will get there. xx

    Debbie x

  • I'm 10 months with Bell's palsy I have good days and bad days and quite a few melt downs I'd say I was 90 per cent better I still get dry eye and found hypromellose eye drops brilliant and I had the same noise and sensitive in my ear as you. I went to the doctors because it got so bad he sent me for a ear test that came back fine he said my ear drum was ok it was my ear canal that was swollen and red what was coursed by Bell's palsy he gave me a spray called Ear calm for infections of the outer ear one spray three times a day on the 4th day of using the spray my ear was back to normal . Hope this helps x

  • Yes, this helped! Thanks for the Ear Calm information.

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