This is awful. Good and Bad Days. Am I the Only One?
Posted , 14 users are following.
I was diagnosed with shingles about 2 weeks ago. I have it on my scalp, forehead, and eye. My cornea is clear. The pain prior to having been diagnosed was horrendous and I thought it was due to an infected tooth (which broke off about an hour ago). The pain since being diagnosed has also been bad. I have a good day and think I am getting better then I seem to slip backwards with a bad day and feel awful again, lots of pain and pressure in my head and eye and tired, etc. I'm on the second round of the big blue pills and have eye drops. I saw the eye specialist last week. I have pain and numbness though the numbness seems to be decreasing. My eyelid still isn't back to normal.
This has just been an absolute mess and I wonder if anyone also has these good and bad days and if I'll ever be normal again? I've read that this pain can go on long after the rash is gone. I guess I just need some emotional support here, too. Having a hard time functioning.
3 likes, 42 replies
yogi12221
Posted
So the update is that there really isn't too much to update. Still having severe pain a lot of the time (but not every second so I guess that's progress). My right eye is still painful and off to the side so cannot see well and cannot focus so cannot go back to work or think clearly. Still numb. I did resign myself that all of this is my new normal so I have been getting dressed daily and easing myself back into daily life by picking the kids up from school and taking them to karate, restarting gentle yoga, etc. I can handle about 2-3 hours "out" before I am completely exhausted. I did buy blue emu cream last night and wonder if it worked a bit. Nothing I've done in the way of creams or ointments or even food/supplements have given me any noticeable relief except the ice packs and when I go out, I take them with me (a bottle of frozen water, a washcloth, and a plastic container for their storage). I was having good relief laying on my "bad" side but that hasn't seemed to help very much this past week or so.
I'll update next week or sooner, if needed.
Recap:
Shingles: diagnosed 2/20/18
Location: Scalp, forehead, face, nose, eyelid (cornea is clear)
Meds: 2 rounds of the large blue pills, eye ointment
Overall: horrendous pain
Merry19451 yogi12221
Posted
Yogi,
I don't know exactly where the pain is the worst. I also do not know where you live. If the worst pain is in your eye, you could see a neuro-ophthalmologist. Otherwise, I would try seeing a neurologist. I have had recurrent Herpes Zoster-Shingles in my ear every 3-5 weeks and twice in my right eye. I also have had scleritis in both eyes, which is no joke, either. What I have learned is you need to go to specialists.
They can treat the pain. You don't have to live like this. There are medications that do help. Others that have had Herpes Zoster-Shingles in their eye went to cornea specialists.
They have been helped. If you live in the States, I can help you find someone.
Best Wishes
Merry Juliana
julie89512 yogi12221
Posted
did your gp do blood tests??
Mine came back I’m Low on vitamin D so she’s put me on high strength tablets for 2 months and then re-test
I tried a antihistamine before I went to bed but no good.
I get a lot of headaches too, don’t know if that’s part and parcel of having shingles
you take care and rest as much as you can
keep us posted x
hope4cure julie89512
Posted
Have you tried Hydroxyzine for itching. It helps me a lot. The itching issue in a nightmare for many.
julie89512 hope4cure
Posted
The doctors have been great giving me medication for the shingles but they havnt told me how to deal with the after effects of them.
Can I get that cream from a chemist,
anythings worth a try, the itching is driving me crazy
thanks you for your reply
julie89512
Posted
its a tablet,
will look into it
thanks
hope4cure julie89512
Posted
I'm sorry should have been more clear. Hydroxide HXL tabs 25 mg. Is a prescription. None of the anti his times ever helped old or new ones on the market. Finally found one that helps. Usually need just one sometimes need to take two within the time appropiate.
yogi12221
Posted
Julie, I didn't have any blood tests done. Are you feeling better?
Wow, yesterday and today so far I have been in exceptional pain. I'm in pain (headache) every day but this is like it was earlier in shingles. I did eat some chocolate peanut butter eggs a day or two ago and pasta last night so maybe that's what is doing it. I am eating only eggs and chicken today with maybe an orange. Last night when I looked, the lysine/arginine ratio in oranges wasn't that favorable so I wonder if I should even skip that.
Anyway, just wanted to share the severe pain and give everyone kind words and prayers to get over this.
julie89512 yogi12221
Posted
low immune system can cause shingles just wondered if you are low in vitamin D
like I am
i get really bad headaches it’s feels like pressure headaches.
seems to come on same time every night.
nothing seems to stop the itching and with it being on my face I rub it with a soft cloth to get relief and not to cause to much damage.
i have got a few wholes where the deep shingles were hopefully they will go.
Iv got another week off work. To get my strength and energy back on track.
Hope you have a better day tomorrow.
Bluejalapeno yogi12221
Posted
Hi yogi122221, I incurred shingles in the same exact place as you on my left side about 4.5 weeks ago and I'm from the Denver, Colorado area.
The blisters appeared right along my forehead along that artery that sticks out if you get angry, and it swelled up so large I looked like a Klingon from Star Trek and caused massive headaches, to the point where I couldn't think or function and was essentially reduced to a zombie. It caused me to miss 2 weeks of work.
I unfortunately got a few specs of it in my eye, so was referred to an optometrist to check it out.
I was having severe light sensitivity in my left eye, to the point where going outside was unbearable, even wearing full covering sunglasses and a hat. Indoors I was having to close all blinds, shutters, etc. and just have a few lights on. I couldn't sleep horizontally b/c my eye would tear up and leak so heavily it was preventing me from going to sleep, so I had to sleep almost sitting up on a couch. Also, once stopping from moving around and keeping me distracted, I could feel a throbbing right behind my left eyebrow kind of like behind my eye.
I also couldn't watch any TV or look at any kind of computer screen b/c it would take too much effort to concentrate and focus which then caused headaches. I also couldn't move my head up above horizontal b/c it would start to throb and hurt, but if I looked at anything eye level or down it wasn't a problem.
Finally, I was having crazy itching sensations along my left brow and a bit on my scalp and I broke out with pimples and bumps all across my forehead.
My first optometrist prescribed Zirgon and a lubricant which after 1 week did get it out of my eye, but didn't reduce my light sensitivity. So she then then referred me to a specialist in their office whose specialty was Shingles in the eyes and she prescribed Valtrax to me. After 3 days of taking it 3 times a day, I felt amazingly better and the light sensitivity went down and then for a few hours after what I feel like when the Valtrax kicks in, the itching sensations go away. The itching still comes back and wakes me up around 2-3am in the morning (I go to bed at 10pm) and I just have to mentally keep my hands from wanting to scratch it so I can go back to sleep.
I'm about 6 days out from starting Valtrax and now can have all lights on in the house and can bear going outside with just sunglasses on. I can look at 'screens' now like I could before, but only eye level or down, still can't raise my head up to focus or look at anything for longer than like a minute.
I also don't need any pain relief like IB-Profen but still get the itching sensations.
My pimples and bumps are now also going away.
This whole time I haven't had any alcohol, chocolate, red or white meat, much processed food, deserts or foods with a lot of processed sugar and I've stuck to eating tons of different veggies and drink a bunch of water. I have also felt fine from my neck down other than being just a bit chilly at night, so I wear socks and jammie pants which I normally don't. I haven't ever been physically fatigued, no hot flashes, no upset stomachs, no weird bowel movements or abnormal stools.
I clean my forehead 3 times a day very gingerly with some cleanser and aloe vera and then apply coconut lotion; which seems to be working b/c I have no scars and the red discoloration is going away.
Every day is better, so please hang in there yogi, it will get better!
yogi12221 Bluejalapeno
Posted