Fran's blog

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.

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Light at the end of the tunnel!

I know that most sufferers from RHS will regain their energy in a few months to a year, and others within two years, but my fatigue was severe for the end of 2003 and most of the way through 2004 then very gradually improved.... then it seemed to reach a plateau after three years. I pretty well adjusted my life to accommodate the new limitations, pacing myself to get done what I needed to do.

However, without realizing it, I must have been slowly improving all along!

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Follow up with Dr. Priesol

I had a follow up appointment with Dr. Priesol, the neuro-otologist at Massachusetts Eye & Ear Infirmary, today. The results of the vestibular testing weren't really a surprise. There is no damage to my left ear that would prevent my brain from becoming fully compensated for the loss off vestibular input from my right ear. And the damage to my right vestibular nerve is just about total... Negligible input from that side... So There is no confusing signals coming from the right side to confuse my brain.

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Vestibular testing at Massachusetts Eye & Ear Infirmary

Well, the testing is all over. The only glitch was that because there was hard wax in my ears, Helen, the vestibular technician, couldn't finish the last test on June 30.

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A visit to the neuro-otologist

I just got home from a visit to Massachusetts Eye & Ear Infirmary to see Dr. Priesol, a nuro-otologist. What I thought would be a one day/most of the day deal turned out to be a preliminary visit and a couple of tests. The big deal comes later. :roll:

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Back in Vestibular Therapy

I've been continuing vestibular therapy. The vestibular therapist told me some interesting stuff today, like I should never swim in the ocean because my brain can no longer tell me which way is up! And that I will have to do the exercises daily for the rest of my life to keep my compensation level strong. Not happy about that, but I'll do anything that may keep me upright!

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Another round of vestibular therapy

I feel a lot better today. Still not quite 100% on energy, and I'm often a bit light-headed, but the pneumonia's gone.

I had my evaluation for vestibular rehab therapy (again) this morning, so I'm extra tired and a bit woozy from all the push-me-to-the-edge-of-my-tolerance stuff Cricket had me doing to see what I could handle.

The good news is that there's no BPPV component in my dizziness!

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Pneumonia = Decompensation

Just got out of the hospital a couple of days ago, after four days of IV antibiotics. I had a cough for a few days last week, then woke up Friday night dizzy, but got back to bed OK. Then woke up Saturday morning even dizzier, made into the bathroom, started to make may way back to bed and felt like a rope was tied around my chest pulling me backward. I tried to sit down on the floor, but I absolutely could not lean forward to bend down to sit. Then it felt like someone yanked hard on the rope and over backwards I went, banging my head on the tile floor, hard.

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Five years - Progress report

I just realized that three days ago was the 5th anniversary of the onset of symptoms of RHS for me. Both a happy and sad remembrance for me.

Sad, because it changed my lifestyle and appearance permanently, because my relapse was ignored as something that couldn't happen.... but did.

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Two years - Progress report

Today is the 2 year anniversary of the onset of RHS symptoms!!! And I can testify: YES, there is life after RHS.

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One year - Making progress

It's been exactly one year today since I felt the first, unrecognized symptoms of RHS... It's hard to believe it's been that long!

Although I haven't recovered as thoroughly as I had hoped, I certainly do feel a lot better than I did then, after getting to the point that I was afraid I might never feel "good" again!! :D