Bloggers

1234sam

1234sam

antonio

antonio

Barbara

Barbara

I am almost 70 years young. I am an artist, currently doing murals and painted furniture for children's rooms, as well as other small personalized items that I sell.

I have four daughters, three of whom are married, and I have six grandchildren, ranging in age from 15 years to 11 months. I live on Long Island, NY.

I have an active busy life that I never felt was particularly stressful. We were planning a two week vacation in California to visit my husband's cousins at the end of March. I had cooked and frozen almost all of the food for our Passover dinner and was just beginning to pack when I got my first symptoms.

It all happened rather fast - over about seven days - but fortunately my doctor and I had done our homework and knew what was happening to me.

bdkirby

bdkirby

My name is Bill. I am 54 years old and have enjoyed very good health as an adult. I work as an IT specialist here in Fort Collins, Colorado and write software and design databases. I have been married for 34 years to my wife Donna and have 3 children and 5 grandchildren. I run 4 days a week and occasionally run in races for fun. In February of this year I changed life insurance companies and qualified for their best rate. Thank goodness I did it then.

bmichel

bmichel

My experience with Ramsay Hunt goes back to 1992. As you read my diary you will see that knowledge of this affliction was limited even among doctors. No doubt earlier specific treatment would have limited the damage. And, of course, there was no world-wide support like this excellent site.

I would judge my experience with RHS as not being nearly as severe as some noted on this site. For all practical purposes, I recovered after two years. I am physically active and still working at 65. Any physical limitations are due to other issues and just plain getting older. The message for those discouraged during the early days of the course of the disease is that recovery is possible. I still have some residual paralysis and problems, but they are liveable.

Most notable about my experience were: the onset had nothing to do with any stress; I had very little pain directly from RHS but severe eye pain due to a related viral infection; early misdiagnosis as simply Bell's Palsy and not RHS; and full recovery of balance and hearing.

The one impact of this disease was it stopped any political ambitions. I soon discovered that I could no longer "talk out of both sides of my mouth at the same time".

The support of my family was most important to my recovery. I thank them all but especially, Dagmar, my wife of 41 years.

Caitriona

Caitriona

Posts

Cheryl

Cheryl

danfor

danfor

I am a 29 year old male, living in Stockholm, Sweden with my girlfriend Linda (since 10 years) and our dog, Nikki (miniature Schnauzer - a real stubborn one). I make a living as a business development manager at a company dealing with CAD and special effects software, I'm responsible for the special effects stuff as I have a background in the field with my own company.

I'm a classic type A personality. I was very good in school, went on to higher studies just when IT started to be interesting and decided I didn't need formal education - the future was happening outside school, NOW! So I dropped out and started my own company, ending up doing lots of websites for big companies who didn't have a clue about the net. Later went on to work more with animation for film and video.

During the time when I ran my company (9 years), I worked constantly. I tried to stay relatively healthy through mountain biking and gym-work, and also tried not to neglect feelings, family and friends.

I am 100% sure I got Shingles due to a weakened immune system as a direct result of long-term stress. I was always looking for the next step, never enjoying the moment or what I already had.

As you'll see when you read my diary (IF you are still reading after my intro-rambling), my symptoms have been mild this far - so I am lucky.

If there is a moral to my story, it would be:

- Don't neglect symptoms and instinct. I was worried since day one - but chose to neglect worries in favor of more comfortable explanations. See a doc directly if your symptoms are out of the ordinary

- Trust yourself. Demand the service that you need from the medical care, don't let anyone dismiss your symptoms.

Most important lesson for me personally: Apparently I am not immune to stress, and the life I have is not worth risking over details. I will continue to strive to do my best, but I will be much more patient with myself and those around me. I don't have to excel at everything. Value life, enjoy it - have fun!

Deo60

Deo60

flappymcp

flappymcp

My name is Katie; I am a 33-year-old mother of an amazing 11-year-old little boy and have a wonderful Husband of two years (I always though he was wonderful but after going through this with me I now know just how wonderful he really is). I adore my job at a very busy family planning clinic and have been a very busy person.

The week of June 14th I came down with a very strange flu. I was at work on a Friday and I had been busy all morning. It was just about time for my first brake and I started getting dizzy and felt hot. I thought that if I ate something I would feel better but after my break it just got worse. I ended up being down for a solid week with terrible stomach discomfort and all that goes with it.

I went back to work the following week.

Fran

Fran

Introducing myself, I am a 61 year old woman (in 2003), a retired patent agent. I feel fortunate to be retired, and can’t imagine how those younger than I can manage a job and family, and get the rest needed to recover from RHS. Although several hobbies and volunteer jobs keep me busy, my schedule is my own. I am married with two grown children and five grandchildren, and live in Massachusetts, US, in the greater Boston area.


Rob suggested I start a diary of my Ramsay Hunt experience. Unfortunately, this was about 2 ½ months into my illness, and my memories of the early days were a bit foggy. A good reason to start a diary as early as possible! I sent an e-mail to my family, friends, and prayer partners to see if there was anyone out there who is not as diligent as Hubby and I about cleaning out old e-mails. Thanks to our less compulsive friends, this diary is much more detailed than I had feared! I have included some quotes from these e-mails, since they give a better sense of just how shocked and confused we were when this illness hit.


Preparing this diary was a lot harder than I thought it would be. I would think I was finished with a time period and start in on the next one, then something that I remembered from that new week would trigger another vein of thought, so I would start again back at the first week and insert everything related to that thought all the way through, and so on. I remembered more and more as I worked on it! And it was good to remember. Things were happening so fast at the beginning, and I was so overwhelmed, that I never really "processed" events in my mind and came to terms with them. Writing this diary has certainly been a learning experience!


The more I read of other people's descriptions of the onset of RHS, the more I realize how much stress contributed to my illness as well. For example, from the first of the year to early March, 2003, my daughter-in-law was on total bed rest with a difficult pregnancy...her 4th...then had immediate post-delivery surgery. So Nana got to take care of Mama, 3 little kids, housework & laundry for my son's family while Hubby held the fort here at home. Also, our new grandson had some preemie issues to overcome, which worried us very much for several weeks.


Then my mother, a true pack rat and daughter of the original pack rat, finally sold her house, the house in which she was born. My siblings and I got to comfort Ma, help her settle some financial matters, and clean four generations worth of 'stuff' out of her house. Cleaning out the house included finding buyers for most of her furniture, as well as rummaging through a squirrel-infested attic, sorting a lot of junk from precious family treasures. All this had to be done with a firm deadline of October 30. We finally finished, turned the keys over to the new owner, and got Ma on her way to her home in Florida on Oct. 24. The weekend before that, October 16-18, Hubby and I had houseguests, in the middle of the most rushed two weeks I can ever remember. I didn't realize it but, by the time Ma left for FL, I was experiencing the early symptoms of RHS, and was hospitalized three days later.

Janet

Janet

I live in Peterborough which is where I was living at the time I had RHS. Originally I am from London. I moved to Peterborough in 1988 when the Co I worked for relocated there. I was 30 when i got RHS.

janine

janine

I am a 39 year old first-time mom. I’ve been very healthy my whole life. No broken bones, no major illnesses. Worked out since I was in high school, and I’ve always eaten healthy.

Got pregnant 11/01. Nornal pregancy until 7/1/01 when I went on bedrest due to preterm labor. Had emergency c-section end of 8/02.

Baby is fine.

Ended up with an infection in the incision and major post-partem depression.

Around 10/02 started having upper back pain and muscle spasms.

I breastfed the baby until a week before I got Bell’s Palsey. I thought I was getting mastitis, since I was having major breast pain. The day before I got BP, I just started my period for the first time since 11/01.

Looking back it really started Friday night 2/21/03. I remember telling my husband, Dale, that my right eye was twitching. I thought maybe I was lacking some vitamins.

JimB

JimB

So I just took what I felt was a somewhat pointless survey question! hahaha Trying to figure out the value in asking those of us with RHS if we "believe that stress played a part in causing your RHS?", when that's essentially what we've been told (by doctors/literature/AND this very-own website) since our diagnosis! Is there some undercurrent of doubt to that claim that I'm unaware of? Thought, since it was first thing out of the doctor's mouth as a cause, that it was a given ... notsomuch?
Anyway, I'm feeling like putting down the timeline of events of the first week leading to diagnosis, as I remember them, since they are still relatively vivid (being only two weeks ago). It'll be so much harder to recall all of this a month from now. And while it's still fresh in my head, I think I want to commit it to paper. (as it were) Not gonna lie, this posting isn’t the “easy-read” kind; this is likely to be long and descriptive . . . In some odd way, I don’t want to forget any of this.

junebug

junebug

My story begins in June 2004. As I write this, it is more than a year later. And, as with many RHS sufferers, my story continues.

I am an Early Childhood teacher and had just begun my summer vacation. I had made plans to GET IN SHAPE, and lose the weight that Hypothyroidism and Early Menopause had zapped me with over the past years. I was totally motivated to succeed in that goal and return to work a new woman! Little did I know that I was to be zapped again, out of nowhere.

First I was diagnosed with a sinus related condition, since I was experiencing horrific, debilitating left ear pain, swollen gland and a sore throat. Then BP occurred, and that became the diagnosis. As my husband and I researched BP, we came across a site that referred to RHS. I read the symptoms and thought that it sounded like what I was experiencing, except, I had no herpetic blisters. As I read more about RHS, I flat out decided that there was NO WAY that I was going have THAT! The doctor said BP and I just pushed it out of my mind. But the thought kept creeping back in, and nearly 4 month later, I was correctly diagnosed with RHS.

Although I had visited this site a few times to read diaries and posts, I never became a member until 3/2005. This site has taught me so much and the support has been the greatest. I want to thank those who encouraged me to try to retrace the past to write my diary

Unlike some other members, I can’t figure out why I got RHS. It really hit out of the blue. I hadn’t been under stress. I’m pretty healthy. But, I guess for some, RHS just happens!

Here is my story, or at least as much as I can recall. Some days or weeks are a bit foggy, as I try to remember…

jwelis

jwelis

kaleem11

kaleem11

Posts

liz hawker

liz hawker

Why write a diary? I’ve never kept a diary before & didn’t intend to start one. But nine weeks into recovering from Ramsay Hunt & I was amazed how reassuring it was to read Rob’s diary.

I was going through a low patch at the time & thought that maybe writing a diary of my own would be a good project to work on. Since starting my own account I am amazed at how much more honest I am with myself. For instance it has enabled me to reflect on my progress, my emotions, the symptoms & some of my fears too. It has enabled me to be more positive about my recovery & I hope my account will help others ….even if just sends them to sleep – the rest will do them the world of good!!.

I am an active 29 year old & have always played sports & enjoyed outdoor activities. My diet is relatively healthy. I have a demanding job working in a primary school with 25 seven to eight year olds. I love my job but do find it stressful at times & the hours can be very long.

I have always been healthy but unfortunately had to have major surgery less than two years ago. I seemed to recover well at first but returned to work quite hastily & I think I am suffering the consequences now.

Ramsay Hunt Syndrome came so out of the blue back in February of this year (2003).

I have learned one thing from this illness, & that is that the body is not invincible & cannot & will not be pushed beyond its limit. When your body says it’s had enough, it sometimes has to take drastic action to get through to the ever active mind.

This time I want to make a full recovery. This time I’m going to do it properly.

martyp

martyp

Having been lucky with my health for so long I think I began to take it for granted. Very little seemed to warrant a visit to a doctor and I was a healthy active 25 year old. I had travelled to many exotic countries and had no allergies or conditions at all.

My family is also generally healthy and normal although one thing that really intrigued me was that my mum had this strange thing she could do in a way of saying 'err' in like something was disgusting. She could lift her top lip up on one side, completely independent of the other side.

This was really familiar to me and I asked her how she could do it and she said it was from having Bells Palsy when she was in her teens. She told me she practically just woke up and half of her face couldn't move. Her younger brother had it too and being a brass player panicked that he'd never be able to play again. Both cases went in a couple of weeks. Both my mum and and uncle are 100% today. I believed this was some kind of prevalent condition in the early half of this century and didn't occur today...little did I know...