Living with Ramsay-Hunt syndrome?
a little over 2 years ago was diagnosed with Bell’s Palsy. After doing some research I have discovered that this is a symptom of Ramsay-Hunt. 28 months later I still have some paralysis and some of the symptoms of Ramsay-Hunt are evident (headaches etc.) In the last few months I have been prone to pains in the back of my head/neck that come and go. When less severe, it feels like a neck strain. When more severe my right eye flutters and tears and sometimes I am physically ill and in significant pain. I would like to hear from others out there that may have some first-hand experience with this. Unfortunately my Dr. has offered my little in the way of what I can expect in the future in terms of recovery, symptom management etc. Any advice (or hope) is sincerely appreciated.
Find a doc that knows and believes rehab is possible and sees no other way. Is essential= you’re in bad hands, believe me! Don’t give up, have a total recovery! Syndromes are for life but might be controlled and your quality be the best one
I know you didn’t ask for this information, but thought it might help:
Ramsay-Hunt Syndrome
General Discussion
Ramsay-Hunt syndrome (RHS) is a rare neurological disorder characterized by paralysis of certain facial nerves (facial palsy) and a rash affecting the ear or mouth. Ear abnormalities such as ringing in the ears (tinnitus) and hearing loss may be present. Ramsay-Hunt syndrome is caused by the varicella zoster virus (VZV), the same virus that causes chickenpox in children and shingles (herpes zoster) in adults. In cases of Ramsay-Hunt syndrome, previously inactive varicella-zoster virus is reactivated and spreads to affect the facial nerves. The disorder is named after James Ramsay Hunt, a physician.
Resources
American Pain Society
4700 West Lake Avenue
Glenview, IL 60025-1485
Tel: (847)375-4715
Fax: (847)375-4777
Email:
Internet:
Bell’s Palsy Web Site and Online Support Group
c/o Annette Lemke
65 Calle El Avion
Camarillo, CA 93010
Email:
Internet:
Bells Palsy Research Foundation
9713 Lookout Place
Montgomery Village, MD 20886
USA
Tel: 3013303223
Fax: 3012162477
Tel: 8006886914
Email:
Internet:
VZV Research Foundation
24 East 64th Street
Floor 5
New York, NY 10021
Tel: (212)371-7280
Fax: (212)838-0380
Tel: (800)472-8478
Email:
Internet:
Jack Miller Center for Peripheral Neuropathy
University of Chicago
5841 S. Maryland Ave, MC 2030
Chicago, IL 60637
Tel: (773)702-5800
Fax: (773)702-5577
Email:
Internet:
American Academy of Audiology
11730 Plaza America
#300
Reston, VA 20190
Tel: (703)790-8466
Fax: (703)790-8631
Tel: (800)222-2336
Email:
Internet:
Ramsay Hunt Syndrome Type I, also known as herpes zoster oticus, is a neurological disorder caused by an infection of the facial nerve by herpes zoster( shingles,chicken pox virus). I’m hopeful that has been explained to you. It is characterized by a painful, red rash with fluid-filled blisters on the ear drum, external ear canal and the roof of the mouth. Other signs and symptoms:
1) facial weakness ( as known as palsy) on the side of the infection( which ear is affected)
2) ear pain (intense)
3) hearing loss
4) sensation of things spinning or moving around you ( vertigo)
5) a rash around the ear,mouth,face,neck,and scalp
6) tinnitus ( abnormal or ringing sounds in the ear)
7) taste loss in the tongue, dry mouth and dry eyes may also occur.
Some casesof RHS( Ramsay Hunt Syndrome) Type I do not require treatment.When treatment is needed, medications such as antiviral drugs or corticosteroids ( steroids) may be prescribed. Vertigo( dizziness/spinning) may be treated with the drug diazepam( Valium). Generally,the prognosis ( long term outlook) with RHS Type I is good. However, in some cases, hearing loss may be permanent. The vertigo may last for days or weeks. Facial paralysis may be temporary or permanent. I think that your Doc is probably trying to consult with an expert in this area, therefore, she/he is waiting to discuss this with an expert. Probably, this is why your Doc” has offered little info.She/he wants to be certain of the facts,options etc. before alarming you when it may not be necessary. If your case was too complicated or too serious, you would not be left ” wating in the wind”. I understand your frustation but, let your Doc handle it. If your symptoms worsen or persist, contact your Doc ASAP. I think that you are in good hands. I hope that this helps. Ruth
Hi Brendan
I was diagnosed with RHS in Dec 2006. I also am experiencing the same symptoms as you, headaches,eye pain and eye flooding,my left eye has been stitched closed twice, extreme pain in my face (left side still very paralysed) severe vertigo and general unwellness. I also had Encephalitis thrown in as well so I am paralysed down my entire left side, so I can sympathise with you.
My doctors are very attentive and helpful but they have not dealt with RHS very much so they are not able to give much information about what the future will bring.
So to help myself get fit and healthly again ,I use to run about 10klms a day I have developed a program that is really good for me (keeping in mind the medications I am on for pain make me feel pretty sleepy and tired).
Hopefully this might help you with some of your RHS issues.
Mornings.
3am – 4am-Meditation,I find this to be an invaluable resource for healing mind and body, early mornings are something very different, a time just for yourself to enjoy the silence and just be still
4am -4.30am-slow very slow martial arts practice, very good for people trying to strenghten their body,regain their balance and learn to walk again such as myself
4.30 am- 8am sleep, eventually this sleep time becomes the most extremely peaceful sleep time of all, to move through the pain I find that I need to sleep a restful sleep not a kaleidoscope of mindful activity related to personal and professional issues that can turn my night sleep time into hell
Eating slowly,taking plenty of fluid and soft fibre/protein has helped me minimise eye flooding – lots of chewing can create lots of eye flooding yuk!
Eye Protection using category level three sunglassess for outside environments and category level one sunglasses for indoor environments day and night lessens the glare and helps my eyes adjust, this has resulted in much less eye pain over the past nine months
Lighting, I use only low 40watt lights in the house, really helps minimise eye pain can also create a rather romantic type of environment
Rest, Rest and Rest again has been a great mantra for me, I have to remind myself to rest during the day so I lay down and I stay down no matter what for at least 30 mins every two hours
Evening rest after dinner -no television- no pillows just one hour flat out on the floor and stay still, use heated wheat pack on face and neck and other areas of pain, long term use of heated wheat packs has really helped with pain and lessened facial paralysis. I also take heated wheat packs to bed helps with sleep
I also sleep with a beanie, keeps my head warm during the night and lessens head pain due to cold
My doctor is currently discussing the options of botox injections to be administered by a specialist neurologist in some parts of my face to help with paralysis
I know that some of this might seem a bit strange but believe me it works, you see this is the second time I have had to recover from Encephalitis the last time it took me two years and I didn’t have RHS thrown in
I hope you recover well