Yes, I'm back with more questions, but I hope this will help others too. I was told by my doctor that I had PHN, yet I still have the skin eruptions. I won't call it a rash, one section is so minor and scattered, the other is typical shingles vessicles. So it seems I do NOT have PHN. It was bout 12 days post initial symptoms when he gave that dx.
Most info seems to be that PHN is after the rash is "gone". Does that mean 100% clear? No signs of anything? Is it a new type of pain that develops, or still lingering pain from the previous shingles that exists after the rash is gone?
If I don't have PHN, will the Gabapentin still have a positive effect? It seems that it does definitely help decrease the pain. I'm still on the up side of increasing them, only just started 900 mgs/day yesterday.
My doc just told me the same thing! I said how can it be PHN when I have a blister on the right side of my forehead in my hairline? And how can it be PHN when it is almost unnoticeable sometimes and then becomes so painful others? Does PHN come and go? She said it can. If PHN is due to the damage done to your nerves while the virus was active, how can the damage lessen and worsen. Every time I give in to the idea that I have recurring shingles, something or someone make me think it could be something else!!! So frustrating!! Can you get blisters, fatigue, headaches, mild nausea with PHN alone??
Kind of scary isn't it that we feel some info here is more accurate than what we get from our physicians! A lot on the internet is lousy, but I've found forums like this are a wonderful adjunct to our doctor's advice and the limited "experts". NIH.Gov had some of the best info for me, and I think we'll get some good info here too.
I had a shingles type virus in 2014. No GP wanted to say it was shingles although I had the spots inside my left ear and felt ill for months. My neurologist said that an injection to prevent shingles type virus re occurring was not advisable as there are many different strains. Nerves can be damaged, PHN re occurs regularly with me, it is like a bad neuralgia. When I mentioned this to my dentist I found he talked with in depth knowledge of the symptoms . Talk to as many medical proffesionals as you can. Very little is confirmed with this horrible virus. I think you can have all the symptoms you describe, it depends how your GP wishes to 'label' and or diagnose it. Shingles is obliviously a hugely difficult virus for GPs to deal with, and is regularly dismissed as of little importance. See a specialist . Ask your GP to refer you, even if he/she is reluctant to do so.
If this virus was simple, there would not be such an active forum as this !
Be patient, it will improve, but it takes time. I wish you well.
It's been 3 years!!! Are thinking that much time?
As Newby here, I must be making some mistakes. My previous comment (which I can't recall at all) is being moderated. I have no idea what I did. I had one a few days ago that also got moderated, but that one I did include a link. Now I know better and won't do that. So Michelle, it seems I did reply to you, but I have no idea what I said.
Go back to your GP and ask for a referral to a neurologist . Each case for shingles and or PHN is different, but PHN is a result of having the Shingles virus . You may have both at the same time, but you need to have a further consultation with a neurologist. Your nerve may only be sensitive with PHN for a short time. Mine I know is permanently damaged. Please go back to your GP and only consider a referral, nothing else. Hope this helps.
😂. That's okay, unless it was info that can cure my shingles!!
You can't send any product names or links to products or specific dr names. However, you can send a personal message if you click on the envelope in the top right had corner of the post. So if you think of what you said to me, message me. I'm always looking for new info!
I don't think it contained any of those, but the info regarding the topic said that some typos can cause that too. And there have been plenty of those
lately.
Hi Babs
PHN is postherpetic neuralgia...as long as you can see the shingles, you have active shingles. When the shingles are no longer visible and you still have pain in the same nerve root that had the shingles, you have postherpetic neuralgia, PHN.
Gabapentin-Neurotin is a medication to treat neuropathy...nerve pain...both active shingles and PHN cause nerve pain. Therefore your physician may decide to treat the nerve pain with gabapentin-Neurotin. An alternative is Lyrica-pregabalin.
Shingles follows a nerve root. Inbetween each vertebrae of your spinal column is a left nerve root and a right nerve root...all the way down the spine. The nerve root comes directly from the spinal cord. Each nerve root innervates a specific area of the body.
Hope this clears up the mystery
kind regards
Babs,
Post Herpetic Neuralgia is the pain that lingers one month after the rash has crusted over.
Gabapentin is used in acute episodes of Herpes Zoster-Shingles, as well.
You are still in the acute phase of episode one.
Merry Juliana
Thanks No, I pretty well figured that our yesterday. The docs play fast and loose with that term, but at least I've gotten something to treat it. Is it OK to talk about my pain here? I was going to jokingly say "whine" but you all know about this, and it's hard to talk to family about it. Heck I'm tired of hearing MYSELF write/talk/think about it. But I again found out the hard way, the drugs only mask the pain, those danged nerves and viruses suckers are still there. I did VERY little yesterday for 15 minutes, but I needed some warner winter clothing so I moved a few things from my drawers. Well the pain kept up all afternoon, then that evening I had the audacity to spend 1 minute cleaning a sink, with a sponge AND put my own pain cream on my back. So, pain was now back up to an 8, followed by the tears and discouragement...You know the drill.
I don't know if or when I can work. Don't know if I can hande a drive and stay at our daughter's house 120 miles away for Thanksgiving, our yearly ballroom dance event for the holidays is out, forget Christmas shopping or baking. I can't even STYLE MY HAIR!!
Sorry guys, I know many of you have dealt with this for a long time, but I never expected this. Three weeks ago I was hiking in Zion National Park, on one of the most challenging trails, a dream I've had for years and taking my ballroom dance lessons, finally getting to a level that I could perform and compete in publicly...Pity Party over, but thanks for listening.
I know how you feel....EXACTLY! I was so active and all my activities were what I loved to do. Over the last three years I had had to find new interests that do not disturb the shingles. I always am apprehensive of planning anything in fear that I will be feeling sick and in pain at that time! I am learning to enjoy, but not push myself on the good days and tolerate the bad. It is such a change in my life. I feel weak and I believe people think I'm making excuses to be lazy. I have NEVER been lazy, so why all of a sudden would I choose that way of life, if I was not hurting or in fear of hurting again. I hope we can find a way to eliminate this virus and not just managing the symptoms. Pray for that!!🙏🏼
I HATE SHINGLES 5 TIMES!!!!!
So, after you heal request the shingles vaccination...in the USA it is termed, Zostavax...it is a live virus vaccination which means that some people can not have this vaccine. In the USA, you can go to just about any pharmacy, complete paperwork, and the pharmacist will administer the vaccine.
Also the USA FDA is now considering approval of GlaxoSmithKline non live vaccine, Shingrix.
For me this is hugh...I am on Rituximab for JRA, therefore I can not take the live vaccine...
hugs
The shingrix is huge for all of us. It has a 93-95% efficacy compared the the exsisting 50 something % efficacy of the Zostavax. I'm waiting anxiously for it myself. I had heard it was suppose to be ready by now???
Dear Shoe Lady
I announced that GlaxoSmithKline had applied for approval for Shingrex October 24th of 2016.
Unless the FDA fast tracks it, it takes 6 months to 2-1/2 years for approval.
How are you doing?
Merry Juliana
Thx. I'll check out that site
I have posted this information before, I don't know if you've seen it or not. However, I thought you might find it helpful. I'm not a doctor but I think that you have reoccurring shingles a lot of people on this site do including myself. I have probably had shingles at least 30 times starting at the age of 12. Also, during both my pregnancies. As I get older I seem to have it more frequently unfortunately. I have also had the shingles vaccine which only worked for about nine months then I had a case of shingles that was the worst I've ever had! Other than have a reoccurring shingles there is nothing else wrong with me. I'm very fit and healthy otherwise. I just want to let you know that you're not alone if you're having reoccurring shingles. Here is the information that you might find helpful my apologies that is so long but shingles is a very complicated thing...
For decades, medical wisdom about shingles has been that it's a once-in-a-lifetime experience. The commonly-held belief is that patients are protected from a recurrence of the herpes zoster virus, which causes shingles, after one episode. But according to recent research and/or studies about shingles they have found that this is not true. For example, a study published in the February 2011 issue of the Mayo Clinic Proceedings shows that recurrences of shingles may be significantly more common than doctors have suspected. New Medical Studies have found and prove that recurrences of shingles are prevalent in the immunocompetent population. "It's been thought that recurrences were limited to people with compromised immune systems, for instance from chemotherapy or bloodborne malignancies, but this is not the case," "Recurrence was prevalent in the immunocompetent population. We were very surprised by the results." Unfortunately, alot of doctors are not up-to-date on the most recent research about shingles. There is still so much that the medical community needs to learn about shingles. "Shingles has a mind of its own and does what it wants to do".
The bottom line is No One Knows exactly what causes a reactivation of the virus! If they knew exactly what caused it there probably wouldn't be this forum. You could have a good immune system and get it. You may also have a poor immune system and get it. It is also common to have reoccurring shingles if you have an auto immune disorder for example, lupus or MS. Some of the other speculations / research published in medical journals suggest these things may contribute to reactivation of the virus but like I said before they do not know for sure. 1). Having experienced injuries or nerve damage also seems to raise the risk for shingles, since within the nerves is where the virus lays dormant. 2). Some research suggests that traumatic stimulation of the nerves in the dorsal root ganglion can trigger the virus to reactive. 3). Some people also seem to be genetically predisposed to the development of herpes zoster to some extent, with research showing that changes in the gene for interleukin-10 (an immune-system mediator) are associated with an increased incidence of herpes zoster, as is a family history of the virus. 4). Finally, the impact of high amounts of stress and poor gut health shouldn’t be overlooked. Psychological stress, chronic stress, or dramatic life events seem to contribute to VZV reactivation, with studies showing an association between physical, emotional and sexual abuse and higher incidence of shingles. According to a report published in the Journal of Infectious Diseases, contributing psychological factors for shingles development include financial stress, inability to work, decreased independence and an inadequate social-support environment.
Wow. Thank you!
I am trying to get my head around
immunocompetent! This is the first time that I have read about this group! Ib fact, the first time I read the sentence, I hesitated because I thought it was a typo!