Shingles & Post Herpetic Neuralgia
Has anyone had shingles, and particularly has anyone had excruciating nerve pain after the shingles rash and blisters were gone?
I have Stage 4 Chronic Lymphatic Leukemia (CLL), and thus have a compromised immune system. Because of the weaker immune system, I could not get the shingles vaccine because it was a live virus vaccine.
Back in January, I was at the pharmacy in a WalGreens and saw that there was a new shingles vaccine, the ShingRix vaccine, which was a dead virus vaccine. I contacted the James Cancer Center at the Ohio State Ubiversity (OSU) where I go every 28 days for treatment for the cancer - which is doing incredibly good (I will always have it, but it is under control and the cancer cells are actually undetectable) - to see if I could get that vaccine. I was told that it had yet to be approved for cancer patients.
So, about five weeks ago, I started feeling pain in my upper left chest area, and thought I had pulled a muscle. Then, the pain migrated to my back in the same area. After about 4 or 5 days, I developed a red rash front and back, then blisters. I knew that I had shingles.
I contacted OSU and was prescribed medicine for the shingles. Over the next week or two, the blisters dried up - so I was no longer contagious - and the redness turned pink, though it is not yet gone.
The surprising thing, however, is the pain. I read that shingles is the worst pain you will ever feel. While I had the blisters, though, the pain level was pretty moderate - maybe a 2 or 3 on the medical 10 pain scale. I thought this is nothing.
Then, about 4 or 5 days after the last blister was gone, I suddenly woke up in the middle of the night with the most excruciating pain that I have ever felt. I am making up a metaphor for the pain. To my mind, it felt like someone was holding a burning Fourth of July sparkler against my chest, and then SLOWLY pushing it through my body along the nerve path to my back. This was a 9 on the pain scale. The only reason that I'm not giving it a 10 is that it was survivable - though not happily. These sparkler pain incidents lasted about 5 or 8 minutes.
To give you a context for this pain: in the summer of 1973, while working at Cedar Point the summer following my sophomore year of college, I was hit by a truck, whose bumper filleted my leg into the bone and around to the rear of my leg. Luckily, it did not break the bone. I spent 6 weeks in the hospital. The sparkler pain is 10 times as painful as anything associated with my leg injury!
This sparkler pain began to repeat, coming out of the blue - sometimes twice a day or night, and sometimes 10 times a day. As it repeated, the scenario changed. When it reached my back, the burning would spread out concentrically to an area about the size of a dinner plate - adding another 2 or 3 minutes to the agony. Then, the pain began to rebound back to the front of my chest, again following the nerve path.
I went to my primary physician and was prescribed 100 mg Gabapentin (Neurotin) and was told to take 1 pill 3 times a day, and to titrate up to 2 pills 3 times a day, then to 3 pills 3 times a day until I got to a dosage that took care of the pain. I am presently at 500 mg three times a day with no diminishment in pain. So that I would not need to take 15 pills a day, the doctor subsequently also prescribed some 300 mg pills. In fact, in one way, the pain has increased.
About 3 or 4 days after I started the pills, I had my last sparkler event. However, on the other hand, the constant background pain has increased from a 2 to a 3 or 4, with painful spikes - front, back, and left side - to a 5 or 6. These spikes come out of nowhere and last just 2 or 3 minutes, but they can come every few minutes or just a couple of times an hour. The Gabapentin has had no effect on this residual pain or the spikes.
From my readings, I have learned that the pain after shingles normally lasts 4 to 6 weeks, but can last months, years, or even until you die. I hope that I am not in the lifetime cohort.
Has anyone else out there suffered from - or is suffering from - severe pain following shingles? The pain is Post Herpetic Neuralgia (PHN). The Herpetic refers to the fact that the chicken pox virus is a form of herpes.
I know that there are some other medicines, such as Lyrica, for severe nerve pain, which sometimes work when Gabapentin doesn't - or vice-versa.
I also understand that I should not go above 600 mg of the Gabapentin 3 times a day, and I am almost at that level. Has anyone else been able to eliminate, or at least manage, their pain from PHN with any other medications, or creams, or anything?
If so, I would greatly appreciate hearing what worked for you.
Obviously, I am going to continue to work with my PCP, but would like to hear about anything that people have found to be helpful in eliminating - or at least reducing - this pain!
Thank you for your assistance.
Quakertrucker
I have Stage 4 Chronic Lymphatic Leukemia (CLL), and thus have a compromised immune system. Because of the weaker immune system, I could not get the shingles vaccine because it was a live virus vaccine.
Back in January, I was at the pharmacy in a WalGreens and saw that there was a new shingles vaccine, the ShingRix vaccine, which was a dead virus vaccine. I contacted the James Cancer Center at the Ohio State Ubiversity (OSU) where I go every 28 days for treatment for the cancer - which is doing incredibly good (I will always have it, but it is under control and the cancer cells are actually undetectable) - to see if I could get that vaccine. I was told that it had yet to be approved for cancer patients.
So, about five weeks ago, I started feeling pain in my upper left chest area, and thought I had pulled a muscle. Then, the pain migrated to my back in the same area. After about 4 or 5 days, I developed a red rash front and back, then blisters. I knew that I had shingles.
I contacted OSU and was prescribed medicine for the shingles. Over the next week or two, the blisters dried up - so I was no longer contagious - and the redness turned pink, though it is not yet gone.
The surprising thing, however, is the pain. I read that shingles is the worst pain you will ever feel. While I had the blisters, though, the pain level was pretty moderate - maybe a 2 or 3 on the medical 10 pain scale. I thought this is nothing.
Then, about 4 or 5 days after the last blister was gone, I suddenly woke up in the middle of the night with the most excruciating pain that I have ever felt. I am making up a metaphor for the pain. To my mind, it felt like someone was holding a burning Fourth of July sparkler against my chest, and then SLOWLY pushing it through my body along the nerve path to my back. This was a 9 on the pain scale. The only reason that I'm not giving it a 10 is that it was survivable - though not happily. These sparkler pain incidents lasted about 5 or 8 minutes.
To give you a context for this pain: in the summer of 1973, while working at Cedar Point the summer following my sophomore year of college, I was hit by a truck, whose bumper filleted my leg into the bone and around to the rear of my leg. Luckily, it did not break the bone. I spent 6 weeks in the hospital. The sparkler pain is 10 times as painful as anything associated with my leg injury!
This sparkler pain began to repeat, coming out of the blue - sometimes twice a day or night, and sometimes 10 times a day. As it repeated, the scenario changed. When it reached my back, the burning would spread out concentrically to an area about the size of a dinner plate - adding another 2 or 3 minutes to the agony. Then, the pain began to rebound back to the front of my chest, again following the nerve path.
I went to my primary physician and was prescribed 100 mg Gabapentin (Neurotin) and was told to take 1 pill 3 times a day, and to titrate up to 2 pills 3 times a day, then to 3 pills 3 times a day until I got to a dosage that took care of the pain. I am presently at 500 mg three times a day with no diminishment in pain. So that I would not need to take 15 pills a day, the doctor subsequently also prescribed some 300 mg pills. In fact, in one way, the pain has increased.
About 3 or 4 days after I started the pills, I had my last sparkler event. However, on the other hand, the constant background pain has increased from a 2 to a 3 or 4, with painful spikes - front, back, and left side - to a 5 or 6. These spikes come out of nowhere and last just 2 or 3 minutes, but they can come every few minutes or just a couple of times an hour. The Gabapentin has had no effect on this residual pain or the spikes.
From my readings, I have learned that the pain after shingles normally lasts 4 to 6 weeks, but can last months, years, or even until you die. I hope that I am not in the lifetime cohort.
Has anyone else out there suffered from - or is suffering from - severe pain following shingles? The pain is Post Herpetic Neuralgia (PHN). The Herpetic refers to the fact that the chicken pox virus is a form of herpes.
I know that there are some other medicines, such as Lyrica, for severe nerve pain, which sometimes work when Gabapentin doesn't - or vice-versa.
I also understand that I should not go above 600 mg of the Gabapentin 3 times a day, and I am almost at that level. Has anyone else been able to eliminate, or at least manage, their pain from PHN with any other medications, or creams, or anything?
If so, I would greatly appreciate hearing what worked for you.
Obviously, I am going to continue to work with my PCP, but would like to hear about anything that people have found to be helpful in eliminating - or at least reducing - this pain!
Thank you for your assistance.
Quakertrucker
70-79, M
