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Old 11-16-17, 06:44 PM  
tigerbaby
 
Join Date: Sep 2007
I'm one of the unlucky ones...

In March of last year, I got Ramsay Hunt (RHS). I spent the better part of 7 days desperately trying to get diagnosis for what was the worst pain I've ever experienced in my life. Doctors were clueless as the condition is rare, and by the time I was diagnosed and treatment began, I had not only RHS but meningoencephalitis and mastoiditis. I was hospitalized. Because the treatment window was missed, I have permanent right sided facial nerve paralysis, right sided deafness, vestibular damage and cognitive damage. My whole world has changed. I lost my career, my ability to drive, my independence...the list goes on. It's been a life changing experience, and I've no clue what the future holds for me now.

This struck me when I was 46. I was an active exerciser and vidiot - loved yoga and kickboxing mostly. But my life became extra stressful when I moved from one state to another, entered into a new relationship, and had to establish myself all over again in my field as an outsider. The zoster virus doesn't like stress.

Get the shot. Better yet, get the new shot when available. This isn't worth it. Even 'normal' shingles isn't worth it. I had them on my ear, down the ear canal, on my eardrum, in my mouth, on my tongue, and down my throat. The one third length of my tongue is still numb and paralyzed from it. RHS is one of the top ten most painful conditions you can have. Yes, it's rare but most who get it are under the age of 60. I feel for Tony. I know what he's going through, especially for someone like him who's so physically fit and active. It's maddening when you struggle to even walk and have to sleep throughout the day because of the post-viral fatigue. I pray, with lots of rest, he will recover well. One thing is definite - this condition never lets you fully recover. He will have to relearn slowing down and saying no to things.
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Old 11-16-17, 07:32 PM  
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Omg Tiffany, no words but I'm so sorry for what you've experienced!! ((hugs))
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Old 11-16-17, 07:46 PM  
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Tiffany - I'm truly sorry for what you went through and are still going through. It was life-changing for you. I had shingles at age 57, and it was painful, but I guess it was just "normal" shingles. I see now that I was lucky. My heart goes out to you - & sends blessings, prayers & hugs to you.

(Does anyone know if the vaccine (new or old) is useful if a person has already had shingles?)
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Old 11-16-17, 10:25 PM  
tigerbaby
 
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Tiffany - I'm truly sorry for what you went through and are still going through. It was life-changing for you. I had shingles at age 57, and it was painful, but I guess it was just "normal" shingles. I see now that I was lucky. My heart goes out to you - & sends blessings, prayers & hugs to you.

(Does anyone know if the vaccine (new or old) is useful if a person has already had shingles?)
Oh dear! When I said 'normal' shingles, that was in no way to minimize what anyone goes through but rather to say that even with non-rare shingles the vaccine should be considered because shingles in general is so very extremely painful. You absolutely were NOT lucky to have them, and I'm so sorry you went through that. <3 And thank you for your kind words!

The shingles vaccine is still useful even if you've already had them because you could always have another recurrence.

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Omg Tiffany, no words but I'm so sorry for what you've experienced!! ((hugs))
Gina, thank you so much! I have to make sense of what's before me in life. It's just going to take time.
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Old 11-17-17, 08:40 AM  
violingal3
 
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(((hugs))) Tiffany!!! Be well and take care!!!
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Old 11-17-17, 09:26 AM  
Diana3271
 
Join Date: Jul 2004
Location: South Carolina
I have talked about this in my check-in, but not on the main forum here. I have had shingles. Within a short period of time (5 years) I lost both of my parents. I am an only child and don't have many family members, except for my DH. I was very close to my parents, so this was particularly stressful for me. When my Mom got her cancer diagnosis, I developed pain on my right side back and it went across my side to the front. I did not have the rash at that time. I had no idea about shingles, what it was, etc. I didn't go to the Dr. because I was dealing with work and going with my Mom to the Dr. etc. Six months after her diagnosis, my Mom passed away. I was dealing with the shingles pain all that time, without treatment. Right after my Mom passed away I developed the rash and received treatment. This was back in 2012. Since then, if I do any floor exercises where my back in on the floor it will aggravate that area. Also, if I sit too long with my back against a hard chair it will aggravate the area. In my home, I have a thick blanket across the back of the non padded chairs I use. If it gets aggravated capsaicin cream will calm it down. Does anyone know if there are treatments that will cure the nerve pain that's associated with shingles? I know there are medications, but I don't know if there's a permanent cure. Any ideas? You can send a PM to me. I don't want to risk an informative thread getting shut down. TIA
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Old 11-17-17, 01:22 PM  
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((((((Tiffany)))))))
I hope you can find relief.


((((((Diana3271)))))))
I'm sorry for your terrible losses.
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Old 04-25-18, 01:57 AM  
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My doctor said she will wait until it’s been out for over a year to give it to her patients, to make sure it’s effective and that the side effects are not bad. The shingles sound so scary.
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Old 04-25-18, 11:33 AM  
leigh1673
 
Join Date: Aug 2003
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I asked my doctor about the new shingles vaccine and she said she will wait until it’s been out for over a year to give it to her patients, to make sure it’s effective and that the side effects are not bad. The shingles sound so scary.
Gosh some of these cases really do. I truly feel for people who are suffering.

I had a very mild case of them in my early 20s (caused by stress) and they were only on my abdomen/torso area. I don't know if having them back then (I'm 43 now) makes me more or less likely to get them again as an adult. Either way, I am hoping that the vaccine turns out to be safe and effective!
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Old 04-25-18, 09:15 PM  
Castella
 
Join Date: Nov 2003
I've had the first Shingrix shot, I have to wait now to get the second. I got it at Walgreens. It's covered under Medicare Plan D, otherwise probably not unless you have really awesome insurance. I paid out of pocket.

I got the shot on a Friday because I read that it can cause flu-like symptoms. I knew about the sore arm. I was also told that it would "take me down," ie make me very tired.

I had a sore arm for 2 days, nothing worse that what I've had after flu shots, not enough to take pain killers for or to prevent me from using my arm. It didn't make me feel consciously tired...but if I would lie down, I'd feel a need to close my eyes and then I would just lie there, not really sleeping, but also not motivated to do anything. It also made me feel loopy, like I had over indulged on NyQuil original (with extra alcohol). The sleepiness lasted 1 day, the loopiness a day and a half.

I typically don't have reactions to shots, and I didn't think this was bad but that's just my experience. Also, I am concerned that this was released fairly recently. I decided to get it because I know quite a few people younger than myself who had shingles and had to take a lot of time off from work, and because I have a lot of stressors right now (job, home life, family life, you name it). And because I got hit hard with the flu this year (in spite of the flu shot) which really did take me down hard for a good month with all the followup and spinoff issues (sinus infection, massive fatigue etc). So I was probably more inclined to get the shot as insurance against future misery. And I really do not want to get a bad case of shingles, I know enough to be scared.
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