New to group hoping for support. As well as to give support.
Posted , 8 users are following.
I've suffered post therpetic neuralgia for over 5 years. I've gotten Shingles's on my face 5 different times which has obviously contributed to the severity of my pain. Does anyone else here have severe pain flare ups? By that I mean my pain through out the day with medication is about a 3, which is hard at times. However 1-5 ish times a day I will suffer severe flare ups that make shake and feel like there is a hot iron on my face. If I touch it it's excruciating if I'm outside and it's windy forget about it. Those 1-5 times a day flare ups last anywhere from 15 minutes to 6-8hours. There is nothing that I've found that helps the flare up pain. I've had 5 different nerve block/oblations. One of the blocks worked for half of my face for about 10 minutes when I came out of that procedure I was in tears because it was the first real relief I'd ever felt. Unfortunately the upper nerves were never able to feel and get the relief. I am curious as I asked before if anyone also has flare ups on top of there chronic all of the time pain? Has anyone else had shingles multiple times like me? What are the treatments and medicines that have worked best for y'all? Thank you to everyone that took the time to read this.
0 likes, 12 replies
Badger5722
Posted
postherpetic Badger5722
Posted
Hi Badger5722, I am so sorry to hear about all your pain and troubles. I hope you will soon find some relief.
I had extreme pain in my right wrist, arm and shoulder and neck in Oct. 2015 but was misdiagnosed by two doctors. First doc prescribed extra strength pain killer. Second doc said I had second degree burns and needed burn ointment. Third doc immediately diagnosed correctly as Shingles, but 72 hours had already passed by then and the antiviral medication the doc gave me did nothing to help.
I developed full fledged Postherpetic Neuralgia shortly after all the rash disappeared. Since October 2015, I have very severe PHN. Pain seems to have altered somewhat, not as throbbing, sharp or jabbing as before, but still very severe and more localized, mainly in my upper right arm (often unbearable pain and cannot be touched) and right thumb is still numb. PHN pain is very painful especially in the evenings, at night, and it wakes me up every morning.
Have tried all the recommended prescription drugs, acupuncture, prescribed cannabis oil, nerve block treatments at the Pain Care Clinic, Epsom Salt baths, numerous creams and ointments, etc. NOTHING worked and some with negative side effects.
The latest treatment is using a TENS machine with heating pad which didn't work. In fact, the heating pad was so hot, it gave me even more pain than before the treatment. The physiotherapist said that next week, she would use TENS with COLD pad instead. Will let you know if that would work better.
I'm lucky that I'm Canadian, all the prescription drugs (except for Acupuncture and Cannabis Oil - very expensive, but may be claimed as medical expenses on tax return, and drugs with $100 annual deductible), nerve blocks and TENs treatments are covered by OHIP and do not cost me anything, other than the cost of gas and time driving to the drugstore and clinics.
I have given up on any prescription drugs. I have decided that the best treatment for my PHN is to take a sleeping pill at night as needed to get some sleep. I find that a good night's SLEEP helps the most with reducing PHN pain (in my case, Cervical Nerve #6).
I take lots of Vit. B12 (4000 mcg daily, make sure it's Methylcobalamin and not Cyanocobalamin), one magnesium, one B100, two Vit. C, Barley Grass, as well as drink lots of fluid including caffeine free green tea, ginger tea, peppermint tea, carrot juice, and eat plenty of Blueberries, Walnuts, Fish, Apples, Fresh Green Vegetables, Celery, etc. I will also use more turmeric in my food.
I wish you well. Hope to hear some good news from you soon.
gail09802 Badger5722
Posted
My heart goes out to you for all that you have suffered. Just know that people on this site really do care. I have no answers to your questions, but will pray for you to get relief soon.
Gail
Badger5722 gail09802
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Gail,
Thank you so much. Your kind words brought a tear 😢 to my eye. To not feel alone. I will add you to my prayers as well.
charlie58834 Badger5722
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Hi Badger,
I've had PHN for 26 years, also in the facial area: Right eye, eyebrow, forehead, and scalp. Pain flare-ups are common with most of us on this site. First, it's important to know that the pain from PHN does decrease with time. Very slowly, but it does.
If you're having repetitive shingles attacks, which is unusual, have you had the shingles vaccine? I would make sure to get that if you haven't already. It is not 100% effective, but any percentage helps.
My flare-ups consist mostly of severe itching. I've discovered two things that help flare-ups. Aspercreme, which has 10% salicilate, decreases the pain and itching some. I use it every night, and in small areas of the scalp on days when itching is more than usual.
Also, the most effective thing I've found for flare-ups is, oddly, drinking a large glass of water. Apparently I am sometimes mildly dehydrated, which I think is what brings on the worst flare-ups. If I drink a large glass of water, the severe itching will subside in about 30 minutes. It may or may not help you, but it won't cost anything and it's worth a try. It has helped a few others on this site.
Badger5722 charlie58834
Posted
Charlie,
Thank you so much for the advice. I actually haven't gotten the vaccine as my Docs are worried it may cause me to have another shingles outbreak which would damage my nerves even further. I have heard overtime that PHN will get better I am hopeful it eventually will. With the number of times I've already gotten shingles on my face the Docs have explained that my pain may never go away. I will try the asper cream as well as the water.
Thanks again Ian
terry05556 Badger5722
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Badger5722 terry05556
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Thank you so much. That means a lot. Have a good weekend.
ron96331 Badger5722
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Hi Badger
I have it on the right sight of the head, so it's headaches most of the time. And what you call flare ups, I call sudden stabbing pains, just coming out of nowhere. So anyway, we're all part of the PHN family here I've found and I'm into my second year of suffering with this thing. Listen to what Charlie says, he's the best.
Take care
ron
Badger5722 ron96331
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Ron,
Thank you and I hope your pain starts to get better. I'm hoping eventually with time mine will as well. It has only gotten worse over the last few years. I hope that it will eventually turn for the better. I am glad I found this site as it's nice to converse with people I know understand. Thanks again Ian
Rebel1990 Badger5722
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Badger, I just found and joined this site. I guess in the "misery loves company" category, we are walking along a similar path. While I have not contracted HZ more than once (that I know of), I do most definitely have 5-6 flare ups daily (funny that I use the same terminology). I am going on four years with PHN which affects my occipital and trigeminal nerves on the right side of my head, neck, and face. My flare ups usually last aboutn 20 minutes and there are some days, like today, in fact, when the flare up has no end. Like you, I have tried many different procedures -- nerve blocks and stellate ganglion injections -- and have even run the gamut of pharmaceuticals and, regrettably, nothing has provided relief. All I can do is use ice to numb the painful areas and meditation to get me through the flare ups. I remain hopeful that there is a scientific breakthrough on the horizon that will help mitigate or alleviate the pain for all battling PHN.
sheila48912 Badger5722
Posted
Did you get the zoster vaccine? I have never had a second flareup fortunately. Try to discover the root cause of the reoccurring shingles. Perhaps a diet change could help. For the pain try an ice pack, that actually gives me relief. I sympathize with you and I'm so sorry you are suffering. Don't give up 🙏🏼