Shingles pain seems to be killing my dad.

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My father got shingles in July and it's now early October. It has been debilitating for him and I'm worried that he's not going to last much longer.

The doctors have tried so many different drugs trying to get the pain under control, but nothing seems to work. He isn't eating a lot and he's definitely not getting enough fluids even though we try to get him to drink Gator Aid regularly because his sodium levels have been so low.

He has fallen a number of times and three times he's been taken to the ER because of it. Each time we find out his sodium levels were extremely low and he was dehydrated, but I cannot stand over him and make sure he keeps getting enough fluids.

He's 88 and my mother is 93, and we are very fortunate to have them in a wonderful assisted living facility. My mother, who has dementia, is flourishing, while my dad seems to be getting worse. I feel so sorry for him and it's very difficult to see him suffering and not be able to help.

Also, I don't want to keep either of my parents going when their quality of life is no longer good. I don't want that for myself. If my dad can get better and enjoy life again, that would be wonderful, but if he can't than I pray for an end to his misery.

I'm hoping someone can tell me their experience with this sort of thing. This is such a difficult time for everyone and I hate the hills and valleys, although I know that's part of the process.

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Thank you, TheirDaughter. Wishing you many blessings.
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Thanks for the update. I'm so glad you're doing a lot better! Maybe this will be helpful to others, too. I know caring for a parent, spouse, or anyone can really add to stress. Hope you just keep feeling better. Meanwhile, I'm also sorry about your dad. I know he's grateful for your help and good advice.
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Just following up on the above. It's now been about 7 weeks since my shingles symptoms started. During the first month my pain was typically 4-6/10, with occasional 7-8/10 pain. Since then it's improved steadily, week by week. At this point it's more like a mild itch than a pain and between 0-2 in intensity. Barely noticeable most of the time. My throat irritation resolved. I can eat or drink anything now, even tomato products. I no longer need Tylenol PM to get to sleep. My ear sometimes itches but does not hurt now.

The 3rd and 4th weeks were my worst, pain wise. (I gave up on using the RectiCare because it seemed to irritate my facial skin.) What helped me most when the pain got really intense was to go into the bathroom and wash my face with warm water and hydrating cleanser and then put a light amount of Vasoline on it. I often had to do this 15-20 times a day.

My worst day was this one Saturday when Mom and I were in an outdoor shopping area where bathrooms were few and far between. I couldn't get to a water faucet. The pain got so bad that I started crying. After that I carried my facial cleanser, a towel, and a jar of Vasoline with me whenever I left the house and only went to places where I knew I could get to running water quickly.

I feel very fortunate that my shingles pain/itching is mostly gone now and that I don't have facial scarring. The red areas of my face have returned to normal and there's only one small area on my chin that's still pitted.

I've made changes to reduce my stress level and am watching myself more for signs of stress...like if my neck starts to hurt or if I start feeling like I've had about 10 cups of caffeinated coffee when I've had none. Or if I start to feel overwhelmed in some other way. (In the months before I got shingles it had gotten to the point that I was feeling this way almost every day.)

When the above happens, I back off and take a break as soon as I can, even if it's just for 15 minutes to take a warm bath or to put a microwaved hot pack on the back of my shoulders or to relax with a cup of hot tea. I'm going to the Y now twice a week for one hour. I'm joining a free weekly meditation class next week (meditation had been suggested by my doctor). I've kept off the five pounds I lost during the first few weeks of my shingles symptoms. Over the holidays I tried to do less and expect less and just enjoy the precious time with loved ones. Maybe I'm starting to learn how to just savor the moments.

All these changes have made a huge difference in my daily joy. I quite honestly haven't felt this good in several years.

When my dad has awakened during the night with postherpetic itching, I've reminded him to do two things: 1) make sure he's thinking about positive things, not negative ones (sometimes he awakens with itching after a bad dream) and 2) try and relax all his facial muscles. Fortunately he only rarely wakes up with itching during the night--like maybe once or twice a month. When he does, I'll continue to be there for him with RectiCare or hot water on a washcloth, whichever he tells me he needs. I'm grateful his itching has become less and less over the past three years and that he doesn't have it every day like he did in the beginning.

I've read that medical knowledge is currently doubling about every two years. I pray there will soon be some real solutions available to end the misery that so many with shingles endure.
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TheirDaughter, I'm so sorry for the loss of your dad in 2012.

My elderly, disabled dad got trigeminal shingles at age 87. He was in the hospital with a secondary bacterial infection the first week, then spent another week in rehab. He said he wouldn't wish the pain of shingles on his worst enemy.

He had severe postherpetic itching for about a year before it started letting up. Even today he wants what he calls "The Good Stuff" (topical RectiCare, which is 5% Lidocaine) applied with a Q-Tip around the right side of his nose before bedtime, just in case he starts to itch during the night.

During the first months he would be awake at 2 in the morning and want me to boil some water and bring it into the room and dip a washcloth in it then apply the washcloth to the right side of his face. That was the only thing that relieved his pain and itching. It seemed too hot to me, but it felt so good to him, he said. Later we discovered that vibration also helped reduce his symptoms, so he used a Neutragena microdermabrasion device (without a cleansing pad attached), held against his face. We tried the Lidocaine patch, but it was hard to keep it in place on the face. RectiCare cream (which is also 5% Lidocaine) has worked much better. Sometimes petting a cat would help his itching go away for a while. But most of the time he was miserable. Such a brave soul, he almost never complained and never showed signs of the discomfort in his face.

After about a year he was signed up to have speech/swallow therapy, including the Vital Stim device. During the time he was being treated with Vital Stim, his postherpetic itching went away completely for almost a month. I kept a daily log and it was amazing during this time. The speech therapist said it may have been due to the Vital Stim because she had seen other Vital Stim clients with shingles see a reduction in their post-herpetic pain/itching during treatment too. (His itching eventually came back after that treatment, but with less regularity. The itching became intermittent, sometimes going away for days at a time and lasting on average less than 1 hour a day, if that.)

Ironically, my dad's trigeminal shingles was in Nov 2012 and I got it almost exactly three years later, in Nov 2015. Mine is on the left side of my face. It's been 3-1/2 weeks since my symptoms began. The first three weeks my pain was mild-to-moderate, but the past few days it's been worse. I'm wondering if it's because I was isolated in my home for over two weeks, taking it easy, while my parents had 24x7 caregivers from the agency to care for Dad. Whereas now I'm back at my parents house, being a caregiver again and having more stress.

But I'm determined not to let trigeminal shingles get the best of me. I'm working on the way I handle my stress. I'm finding ways to lessen my workload, doing less each day, remembering to say no where needed, and spending more time being relaxed, learning to take a breathe and just enjoy my time with my parents. I'm a type A person by nature but determined to form more healthy habits and take better care of myself.

My pain seems mostly in the 3rd division of the trigeminal nerve (ear pain, tooth/gum pain, throat pain, and near the lips), but some is higher up, in the 2nd division on the left side of my face (cheeks, hairline, etc) Over the past weeks I've taken only a couple of pain pills and 5 or 6 Tylenol PMs. I started using the RectiCare on my face this afternoon and it seemed to help the most with this annoying burning pain I'm now having that's higher up on my cheek.

Oh, and I forgot to mention that right after Dad got shingles in 2012, my mom and my sister and I all got the shingles vaccine. (I was age 56 at the time). Both the ENT I saw last week and my dermatologist are calling the shingles vaccine a failure in my case. My dermatologist said the reason my dad's pain was worse than mine is because he is very elderly--that the older you are, the more severe pain you'll have. My dermatologist also told me my shingles case was NOT a mild case--it was pretty typical of what she sees. As for the shingles' other expected benefit of reducing the risk of postherpetic neuralgia, I guess we'll see how it goes. Shingles pain is supposed to last 3-5 weeks. One of my dad's doctors had it at age 53 and said his pain lasted about 6 weeks. I'm so hoping mine goes away like it should. If there's a chance the vaccine helps with that, then I'll consider the vaccine worthwhile in spite of getting the shingles three years afterward.
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I am so sorry for all of your losses. I had shingles at the age of 38 (four years ago) and I still to this day remember how absolutely excruciating it was. I have ulcerative colitis, another extremely painful condition, and was on a strong anti inflammatory that shuts off my immune system, which is why I got shingles so young. Seriously I wouldn't wish it on anyone. I can remember being at work, and having my cotton shirt graze my arm, and screaming from the pain. I am very grateful that I do not have post shingles nerve damage or pain but I am worried that it will come back, and worse next time. I am too young for the vaccine (FDA has not approved it for my age group) but I will get it as soon as I'm able. I remember one night laying in bed and trying to decide if it would be better to amputate my right arm...of course I didn't, but I seriously had those thoughts, that's how painful it is. I have an extremely high pain tolerance due to my chronic illness. I also have a full back tattoo and lots of piercings and have had cancer 3 times...I'm no stranger to pain but I can't imagine an elderly person or someone with dementia dealing with this. My poor mother questions her actions when I was a child...everyone TRIED to get their child to have chicken pox as it was thought the disease was so much worse in adulthood. No one ever would have thought that this would be the consequence.
Angel
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I'm very sorry about your father AngryDaughter. But, I doubt that the shingles vaccine caused your father's cancer. This is where we got into problems with childhood vaccines. A certain number of children are going to be autistic no matter what. Unfortunately, because they're children, that's also when they're being vaccinated, so parents tended to see a cause and effect that most likely wasn't there. On the other hand, anytime a lot of people are vaccinated, some are going to have a bad reaction. But, you have to look at the overall welfare of the majority. Now, because so many parents quit vaccinating we're seeing a reemergence of some horrible childhood diseases, like measles. Shingles is horrible, too, and I think the risks are low enough that I'll take my chances with the vaccine. A lot of my dad's friends have gotten it with no ill effects.
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My Father had a shingles shot in the end of February. 3 weeks later he develops a rash. Not a bad one. Next he develops a golf ball sized bump on his rt jaw. Then the right side limbs began to swell. his hip started to hurt really bad. Within 1.5 months he couldn't walk. Next thing was lung and bone cancer. I really believe that this shot is dangerous. Shingles is an auto immune disease. If you have cancer, and don't know it, or your immune system is already weakened this could put you in grave danger. He was 69. He died on the 10 of June. I feel that the shingles shot exacerbated whatever illness he may have unknowingly had. I feel it killed him. Please make sure you or your loved ones are in perfect health and your immune systems are ok before you consider getting this shot..
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Thank you grandaughter. I just spoke to a friend of my dad's and she had shingles two years ago and is STILL having problems with pain. The doctor told us that the pain might suddenly quit only to start up again months later. If nothing else, I pray that more people will become aware of how horrible this virus is and how important it is to get vaccinated. My dad was going to get vaccinated, but got shingles before that happened.

Not every elderly person gets it, but it is more common and much more devastating as we age. I wouldn't wish it on anyone.
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So sorry for your loss, I undersstand how shingles can mean the end for so many It is just hard to believe after living thru so much that something like shingles takes them away.
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Thank you also lildeb. Yes, it's easy to forget about flu shots, too. Both are so important.
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