Periods of remission, feel hopeful, then hopes dashed

Hi Jana, so sorry for you and anyone else as I read that is going through this.  I would perhaps offer a little hope...I'm 66, and did have a "mild" case of shingles in my mid-50's...what I took for years was Vitamin C for other things that it worked well for, but, I recently wondered if it prevented a return case unknowingly.  Well, I find a few things that indicate it...Vitamin C is a natural "antiviral" so it may very well work for Shingles and PHN...here's one reference...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3444542/

that you may perhaps show your doctor.  However, I would also consider taking it now, orally, in high dose...500 mg at a time...throughout the day. It's worked for me for asthma, colds and flu, but, I think inadvertently, helped keep shingles away as well.  Hope that helps!   Wish you and everyone else going through such pain well.  I honestly cannot take pain even a little. 

My post is being reviewed because it has a link about Vitamin C's effectiveness which I hope will be shown, however, wondering if anyone's tried Capsaicin cream...

When you apply it to the skin, capsaicin may help relieve pain from:

Pain disorders, including pain after surgery.

Nervous system problems such as diabetic neuropathy, trigeminal neuralgia, and postherpetic neuralgia (shingles).

Cluster headaches.

Joint problems such as osteoarthritis and rheumatoid arthritis.

Skin conditions such as psoriasis.

Mouth sores due to chemotherapy or radiation.

In general, you use creams containing capsaicin for pain relief. You can put the creams on your skin up to 4 times a day. You may feel a burning or itching sensation the first few times you use the cream, but this will gradually decrease with each use. Wash your hands thoroughly after each use to avoid getting the cream in your eyes or on other moist mucous membranes, where it can cause a burning sensation. Do not use the cream on areas of broken skin.

Just don't use it on broken skin.  Hope that helps too.

Hi 

   I can totally feel for you I am coming up to year 8 this xmas and have the stabbing pains and the constant background migraine. It has taken me until now to start and get a little more relief with Botox injections for the migraine and greater and lesser occipital nerve blocks. I have to travel from Wales to London every 2 months for nerve block and every 3 months for Botox. At the hospital in London they are rolling out a programme for pains clinics to be able to carry out the Botox injections maybe there is a clinic close to you. I found it very hard to get my first referral to pains clinic. All this has put me in a dark place on many times just trying to get as far as I am now. I had to finish work 12 months ago yesterday due to the condition at 49 years old so it takes some living with. As you will know you can never describe how it really makes you feel when the pain hits but as a sufferer I don't have to be told I sympathise with you. I do try to lead as normal a life as possible even when it means I end up face down in the fruit and veg in the supermarket when the stabbing pain hits and yes that has happened to me and a few more times I've ended up in a heap in public but I try and do my best to be as positive as possible. It does not always work but it helps. It's great to be able to share with others about the terrible condition it's just a shame we can't hold a PHN conference. Lastly I would like to mention without the support of my loving and wonderful wife I know I would have never made it this far 

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I have only just seen your comments. I presume you have Trigeminal Neuralgia. I have had this condition for 14 years. Identical pain issues occur with me. I live in hope of a neuropathic painkiller with no side effects (drugs with side effects are all that Neurologists can subscribe...what a disappointing group of Medical Specialists they are compared to some of their more eminent colleagues operating in other medical specialities). The drug EMA401 (developed by Australian Professor Maree Smith and sold to Novartis last year) a neuropathic drug with reportedly minimal side effects is supposed to be going into the last Phase of Clinical Trials in the FDA approval process. Unfortunately it is extremely difficult to get information of the status of progress to date, which is not surprising given a multinational drug company now owns the rights to the drug.

I do not take any of the neuropathic drugs currently on the market. I would sooner go underground for however long it takes and resurface when the pain subsides and operate as if nothing has happened. Yes I continue to have ongoing pain but this is where it is so important to mentally develop a high tolerance of pain so you can live somewhat of a "normal" life without boring, burdening love ones and friends around you. I try at all times to look as if I feel normal and try not to discuss my pain in the company of others.

Hi sorry to read your post and the impact that PHN is having on your life.I am 2years 6 months plus of PHN after Shingles of the right side of my face and scalp. Tried all the pills which achieved nothing positive and had a series of Botox which helped with the wrinkles but not the PHN , now working through the various spinal injection procedures, the last of which was some 3 months ago,and,which until last week did seem to have really helped, but over the last several days appears to have lost its effectiveness, and I am back now exactly as you describe with random attacks of varying visciousness. I have reached the point of getting by through valuing the free times when all is almost clear, the 0-1 level is a constant, and accepting that there will be the bad days, sounds easy but you and I know it isn't, May best be described as a kind of acceptance that ,this is how it is.Some of the family have chronic back pain, they too do what they can with pain killers when it's really bad but don't let it ruin their lives. Don't let it beat you.

meantime Lido Caine patches help and Emla cream.

Jana, what you describe in your original post is very similar to what my father has.

Periods of little to no pain, followed by a knee-jerk attack that can last for several weeks.

I think he has had this for 5-6 years now, but it seems that things has gotten worse the past 1.5 years or so; Pain getting worse, pain-periods getting longer and the "pain-free" periods shorter and more infrequent.

I am not sure if it is because he is getting older and weaker (82), or if the condition is progressive or not, but it sure mess with the mind of the one that is affected.

"This time....perhaps it is over now, it's been almost a week without pain"...then BAM...back to hellish pain.

His use of Oxynorm and oxycontine is up, but that is a natural progression, since the very nature of opioids are that you need higher doses after prolonged use, unfortunately.

He did try the capsaicin-patch(?) chilli-bandaid in the arly phase, but it caused a lot of pain, so he only had two treatments before he opted out. I am going to suggest capsaicin cream, which is milder and see if this can take the edge off after a few weeks of steady use.

All the best.

I've had it 8 mos & its killer, I just figured out it was the rash that started it all back last June. I find that light exercise really helps, daily, as long as it's not intense. But it's always there ready to come back!  

I see that this thread is 2 years old but I am wondering how you all are doing with your Postherpetic neuralgia. I had a shingles outbreak in my mouth 4 months ago and it took several weeks for the pain to subside. It affected the trigeminal nerve and the occipital nerves on the right side of my head and face. I felt like I had very little pain for 3 months after, until last month I got a virus and the pain was back 100%. Now I’m suffering so badly with sharp, jabbing pains up the back of my head and into my face. My doctor prescribed me 100mg gab once a day but it’s not helping. I’m 29 years old and I’m feeling very hopeless right now, like I will never get better. The doctor never saw my blisters because it was Christmas and I went to a minute clinic where the NP didn’t know what it was 🙄 my doctor says it for sure sounds like I had shingles and developed PHN. Does it get better? Should I be concerned that I wasn’t actually diagnosed with shingles? Could it be something else? I have in so much pain everyday for almost 2 weeks. 

Hi Jana I know exactly what u r saying (check out my response to tish49290) I hope that 1 day it will all disappear until then we just have to try everything and believe that one day the pain will end. Good luck my friend and remember ur not alone 😊