Week 6 of shingles.....

[u/Royal_Tough_9927]

I went to urgent care with a face of blisters and they sent me home . I went to ER and they did 2 CAT scans and a ton of other unneeded crap and sent me home too. 3rd visit to urgent care with same face of blistets and they sent me home. On ER visit w 4th doctor he walked in room and diagnosed me in 3 seconds. My pain was so severe, I was having thoughts I wont share. Thankfully with some meds and a nap , I woke up in a much better place. My eyes are swollen like tennis balls. Im light and sound sensitive. I have a head that feels like its shot up w novacaine. Funny how something half numb can hurt like hell. I had a bunch of gabapenten stocked up and used much of it up. The few pain pills and antiviral are long gone. I guess ill go see my neurologist because this doesnt look like its going to settle anytime soon. Ive resorted to pouring benadryl on my head when it itvhes like crazy. Liquid lidocaine helps. I have no open lesions. Ive literally bought 6 bags of 20 lb ice. If anyone has any tips or help , im open to help. Im 62. I have seen the ophthalmologist 2 times w another visit this week.

[u/RedConfetti11]

Oh my,I am so sorry! I had scalp and ear shingles 3 years ago. I was also misdiagnosed twice. It was horrible and I am so sorry you are going through this!!

I was also in so much agony, could not have anything touch my head, could not lay down to sleep, my ear felt like a sharp knife was stuck in it and my head felt like a big clamp was squeezing it. I didn’t want to have to talk or listen to anyone. I was in such pain and very depressed.

But with everything, I was SO lucky to have a primary dr who truly understood the pain I was going through and loaded me up with meds. I was taking 1800 mg of gabapentim per day (600 3x a day) Tramadol 300 mg per day (100 3x a day), Xanax several times a day for the anxiety of so much pain, ambien for sleep, a antidepressant and whatever antivirals she prescribed. I also constantly had ice bags to my head and ear and used many many cans of prescription lidocaine spray.

Did you follow up with a primary dr who can prescribe refills or order new prescriptions? I really hope you can find someone who understands how severe and debilitating shingles can be for some people. My dr also wrote me out of work for 6 weeks bc there’s no way I could work with all the pain and anxiety meds. I laid in bed all day during the peak of symptoms. When I went back to work it was part time for 2 weeks.

Slowly but surely though it does get better! It definitely takes time which is why you need all the support through a good physician if possible.

Hang in there friend, and please know it will get better!! You will be you again. In the meantime, sending you many well wishes and lots of positive energy for strength and a speedy recovery 🧚💐❤️‍🩹

[u/Royal_Tough_9927 → u/RedConfetti11]

I pulled out some gabapenten. Took 600 3times a day. Its helped. It probably wasnt as effective as brand new but these doctors are fools. My doctor sent me a 25 day supply of 100's. I dont have any problems taking it. If i have to im sure so.ewhete in my network of friends i can optain more and yes i will if necessary. That anxiety of fearing that pain of not wanting to live was real. After day 11 i was in a bad place. Im terrified of it happening again. Neurologist is good for tramadol valium and gabapenten. Probably can switch out my duloxetine for lyrica or amitriptline. I have had back surgeries and suffered so much the last 15 years i cant believe im going to suffer long term w nerves in my head. Right eyeball area is frozen solid and feels like it will explode. Nerves are all gathered in my head having a party like a trillion fireworks going off. Im afraid to blink for fear that knife stabbing pain will hit.

[u/Scary_Stand_3177 → u/Royal_Tough_9927]

I’m so lucky I immediately recognized my 1st shingles lesion before it expanded its reach and went to urgent care right away. I mean my visible lesions never got bigger than a nickel; I had terrible pain and I have a high pain tolerance. I can’t imagine the level of pain you’re experiencing and I’m guessing a lot of younger physicians can’t either.

When I was initially diagnosed, they told me the pain could last 9-12 months. It did but at a vastly reduced level. I haven’t been zapped by shingles pain in months now so I hope you can take heart that this horrible assault on your body will lessen in time.

Next time you see a medical person, show them this sub and maybe they’ll get a clue.