This all sounds too familiar

Good morning Juliana,

Thank you so much for your reply.  I'm finding more and more that I have no one to talk to about how I feel and how bad the pain actually is!  I understand that if you've never experienced it you might think we are stretching it but that is so not the case.  I am calling my doctor today to see about getting the Lidocaine patch. As you know, that pain can go from 0 to 100 in a blink of an eye.  I cannot even imagine the pure agony of having it in your ear!!!!  I would be taking a club to my head to ease the pain.    There seems to be more information online that refers to Shingles with the rash/blisters.  This is my first time not having them.  I was given 100 mg of the gabapentin but to take only one at bedtime.  I know of others that take it 3 times a day with a much higher dose. The pamphlet also said it can't be combined with the hydrocodone that I take for chronic nerve pain. I stopped the gabapentin because I basically had to choose which pain I could live with.  I'm obviously questioning if I picked the wrong pain. Of course, it doesn't help that we are to leave on a long weekend out of state to visit family. Tomorrow.  What to do, what to do.  I appreciate your kinds words and caring.  It shows that those of us that have to deal with this virus are tough cookies!  If we can get through this....we can handle just about anything!  

May I ask where you live? You said, out of state, so I wonder if you are American, rather than from the UK... Actually, the first time I had it, I didn't know what it was, obviously. The rash did not show on my outer ear for three weeks. I saw my allergist, who knew I was sick. The first two ENTs thought I was faking, "it was all in my head," which of course, the Zoster was. The last one was an otoneurologist, who knew I was really sick. After I saw the otoneurologist, blisters appeared on the ear drum and in the ear canal. I had my 7 year old Joshua trained to use my otoscope. It didn't dawn on me it was Zoster when he reported the blisters. When I saw the blisters on my outer ear and called the otoneurologist, he said, well, Merry, it sounds like good Ole Ramsay Hunt, Herpes Zoster Oticus. I literally wanted to cut out the right ear, it hurt so much. I had no pain medication, and was a single mother, rocking on my bed. I lost about 70% of my hearing on the auditory Nerve in the right ear due to Zoster. At least I can help others. who suffer. I would obtain a script for Opioids today and rest if another adult is willing and able to do the bulk of the work. Frankly, you can take gabapentin and hydrocodone together. You should not drive while using Opioids. Also, Famcyclonic and Valcyclovir are slightly more effective than Acyclovir. I would ask your doctor a script that you can take the hour you notice the onset of pain. The sooner you start, the less pain you will feel.

If your family is less than sympathetic regarding the Zoster, and expect you to pitch in with work, when you can barely move due to pain, are exhausted due to the viral disease, don't go! My family understands that I just go to bed and rest for a few days.

I live in Delaware, US3

you guessed right.  I am American.  I live in Ohio.  I can understand wanting to cut your ear off!   I had to look up the Ramsay Hunt syndrome.  Just one more "joy" to add to the mix.  My husband is actually very helpful and understanding even though he has no clue how bad it hurts.  I have an office job and they are aware of what's going on, too.  I tend to think that I can just fight through the pain but as you know...that isn't always possible.  I have had to lay in the oddest positions to keep pressure off of my back.  He's always asking me if I'm comfortable.  Of course I'm not but it's the best I can do at the moment.  He wishes he could help me or take away my pain.  I feel very lucky to have such an understanding husband.  I will be more than relieved when this episode comes to an end!  We, in the states, can't get the vaccination for free until we hit age 60.  Talk about a crock of manure!  Even if you have a history of it you have to pay for it yourself, out of pocket, and it runs $280. Somewhere there is an idiot on the board of insurances that has decided this makes sense.  Oh well.  Does me no good at the moment but hopefully there will be change in the future.  We can always hope, right?  

HI Susan,

I get recurrent Herpes Zoster Oticus in my right ear every three to five weeks for the last 19 years. I had the vaccine, but it did not help stop or lessen the recurrences. Just wanted to let you know. ...

Merry Juliana 😊

Hi Susan.  You guessed right!    My husband called me that when we first met, 34 years ago, and it has stayed with me.  I can understand how you might think it was your hip.  I thought mine was my kidney.  It is amazing how it can be fine one second and the next....bam!  My first time, with the blisters, was right on my spine and, of course, right under my bra!  Just adds insult to injury, doesn't it?  By the way, I have family in Ontario.  They live at Rice Lake in Hastings!  Lovely country and I sometimes take a "mental vacation" to that lake when I need to de-stress.  I've been doing that a lot over the last 4 weeks!  From what I've read on different sites, the "no blisters" version tends to be more rare.  They both are pure misery!  I'm thinking that is why others, as well as doctors, don't take it as seriously since there is nothing visable.  It makes me even more sympathetic to those with an illness you can't see.  

So sorry you had it. Was this your first episode? How much did the Lyrica help you? I know Lyrica causes weight gain in a lot of people, but if you are just using it short term, I suppose it wouldn't matter.

thank you.

MerryJuliana

My first episode was nineteen years ago in which I had excruciating right head pain. I wanted to cut out my right ear. I understood Vincent Van Gogh's cutting off his ear during his temporal lobe epilepsy. First I thought it was the worst migraine of my life, but even they don't last three weeks. My allergist knew I was sick, and sent me to two ENTs who thought it was "all in my head." Well, it was. The third was an otoneurologist who knew something was wrong. Then my 7 year old son Joshua saw blisters on my ear drum and e a r canal. I had trained him to use my otoscope. When the blisters hit my outer ear several days later on a Monday, it dawned on me to call the otoneurologist, Dr Vaughn, who said, Well, Merry, it sounds like good Ole Ramsay Hunt Syndrome-Herpes Zoster Oticus to me. I lost most of my hearing on the Auditory Nerve in my right ear.

I usually get Zoster every 3-5 weeks now, but use Opioids, Topamax, and Auralgon, to relieve the pain as soon as it starts. That first episode I rocked in my bed in agony for there weeks. That is why I am so empathetic to shingles sufferers. The two ENTS were horrible to me.

The amount of ignorance by physicians is abysmal. Very few know that it can reoccur and often.

I am 63 years, now and encourage everyone to get the vaccine.

MerryJuliana

Are you feeling better, Merry???  I feel for you and hope you found some relief.  To get it as often as you do must be terribly frustrating.  Modern medicine has yet to come up with a good, consistant solution for the pain.  I just keep trying different things to keep it under control.  Here's to hoping we all get over this sooner than later!