Long term shingles neuralgia

Infections
1

Hello to all who use this site.  I have a different issues than recurring Shingles but I'm looking for any advise or suggestions anyone may have.  I had a severe case of Shingles a 

year and a half ago. It started during a time of very high stress.  I had excruciating pain from my right butt cheek down to my toes on a Monday and discovered a rash on my right calf on Tuesday. I immediately went to the Dr. and was told I had Shingles.  The rash spread from my knee to my foot and toes.  I was immediately put on anti-viral meds, Gabapentin, and Lidocaine. Within a week I had lost my tibias anterior muscle function and some ankle muscles.  The rash eventually left, but scars remain on my calf.  I still have pain in by foot and toes almost continually, and high sensitivity to any pressure along my entire right leg along the sciatic nerve line.  I have been back and forth between Dr.s and Physical Therapists and have regained some muscle strength, but every time my muscles seem to become stronger the pain increases.  No solutions from Dr.s.  Does anyone have an idea where to seek other advice or treatment solutions.

Virgil

2

Have your u seen a top notch neurologist.

Let us know

3

What you're actually dealing with is PHN Post Herpetic Neuralgia, meaning the dang nerves are damaged so they fire off and cause pain (of various types) because of that. If possible, avoiding aggravating the leg may help, wear loose clothing. That may be why the exercises are increasing the pain. It's a horrible two-edge sword, isn't it? Mine is in my back and chest, so finding the line between having a life and keeping active and over-doing it is common. Personally, I don't find neurologists very helpful.

Check out the PHN forum and you may get other tips. At least we can offer you some moral support. PHN can be very isolating and depression and frustration are common. I assume they ruled out a physical/mechanical cause of the sciatic pain by an MRI, CT or xrays, right? It's logical to assume it's PHN, but you could have more than one thing going on.  Take care and hold on, it WILL improve, but it can be very slow and very gradual, almost imperceptible.

4

Virgil,

I am so sorry for the long term sequelae of shingles. Having had recurrent Herpes Zoster-Shingles in my ear and eye, and also having had L3-L5 spondylolisthesis grade IV vertebrae slippage and displacement and herniated disc and spinal and foraminal stenosis, I can appreciate and empathize with your pain. Where do you live?

I would suggest the following:

See a boarded neurologist in a Medical Center/University setting who's primary practice is back pain.

It appears that the Herpes Zoster-Shingles varicella virus attacked L5-S1 or S2, or a branch of your sciatic nerve.

You can have epidurals and nerve ablations by pain specialists, usually performed by anesthesiologists specializing in pain management. I know the excruciating agonizing pain as I had it bilaterally for six solid years before I had surgery. Epidurals helped me, and epidurals and nerve ablations are options for you. Epidurals are temporary solutions, but can be effective, in which they inject a corticosteroid and lidocaine into your epidural space surrounding your lumbar spine.

In nerve ablations, they pinpoint the sensory nerve (s) causing the pain and destroy the nerve (s.) You would probably be numb in that area, but it is better than the severe pain. I am partially numb in both legs, and it doesn't really matter, due to the long-term compression of the spinal cord and nerve roots. I just check my legs and feet for lesions and infections daily.

If you know any nurses, they can sometimes be an excellent resource of where to go.

I hope this helps you.

I am a Nurse Practitioner in the States.

Best Wishes

Merry Juliana

5

Thank you for the advice, I guess. As someone else in this site said, “you leave the forum a little discouraged”. I knew I had PHN from the Shingles. It seems to have settled into a routine of its own. I have a Gabapentin prescription and my doctor and I have been trying to find a way to reduce/eliminate the dosage. The dosage has gone from 1200 mg/day down to 700 mg/day but I can’t seem to get it lower. I have regained a little more muscle strength in the affected areas, but every time the strength seems to be getting to a decent level the pain will return, my muscles get weak again and I have to add a few hundred mg/day back to my dosage. Then the cycle starts over again: less gabapentin, more strength, more pain, less strengh, more gabapentin. I did receive an MRI which showed no L5/S2 mechanical damage. I was given one steroid shot which actually increased the pain for 2 weeks. The most significant reduction in pain came from a Physical Therapist that unknotted some muscles in my buttocks.

My orthopedic specialist (because of the muscles) said 25% usually recover in the first year, 50% by the second year, and 75% by the end of the third year, and none past that. I am now starting my third year, so I’m beginning to prepare myself for that third year anniversary. I think I could live with the pain level, but it is the muscle weakness that limits me. I haven’t heard too many comments about the loss of muscle strength. Does facial shingles have any muscle damage associated with it?

6

Virgil, here’s some information from a study published by Dr. Robert Dworkin, one of the leading researchers on shingles and PHN. Long story, but I’ve corresponded with him and he sent me links to helpful articles. “Motor nerves may be involved in 5%-15% of cases in which the nerves (especially those in muscles in the extremities) can be examined adequately. By use of electromyography, it is is possible to show that muscles are involved in 50% of cases. Obvious paresis (this means muscular weakness BTW) typically improves over time and may respond to physical therapy (figure 5)” The photo figure 5 included shows a bulge, here’s the caption from that, “T8 motor neuropathy in otherwise health 50 year old man who presented with vesicles in the T8 distribution 4 weeks before this photo was taken. The patient was treated with an antiviral agent for 7 days and with analgesics as needed. As the rash resolved, the bulge became apparent; it is consistent with motor damage by varicella zoster virus to the muscles of the abdomen.” If you search you may find the PDF under "Recommendations for the Management of Herpes Zoster. Robert Dworkin et al.

I’m very surprised your doctor was familiar with shingles and muscle damage. Most of us have found few doctors truly informed about the condition. It sounds like you’re dealing with PHN now, Post Herpetic Neuralgia, as am I. It’s hard to say what your outcome will be as far as the pain, some PHN eventually resolves in time and almost disappears. I’m almost exactly two years since my shingles and the last 6 months have seen a great improvement. Mine is in my back/chest on the left side. For me, I avoid aggravating that nerve. So I limit bending, twisting lifting etc. My doctor initially said, if it hurts, don’t do it. I couldn’t even lift a glass of milk or hold the phone for more than a few minutes, with EITHER hand, as the whole core is involved with those actions. But since then, I’m almost 80% back to normal.

I understand why you had the PT, but would it be time to limit the exercises and activity somewhat? I still tried to keep active, but was careful with what I did. I do use gab (which has caused numerous problems, so I’ve tapered from 2700 in December 2016 to now 700 mg). As I taper from the drug (100 mg, every 6-8 weeks), I (and almost everyone else) goes through “discontinuation syndrome”, the technical name for the problems we get. I also have been on a prescription NSAID for 30 years, use OTC Aspercreme with Lidocaine, and two Tylenol every 6 hours. Good Luck!

7

I re-read your post. My previous response focused on the muscle weakness component, now I’d like to mention the gab usage. As you drop the gab, the body goes through a type of withdrawal where the negative side effects increase. Many of us get MORE pain, it’s NOT the PHN, it’s how the brain reacts to a decrease in the med. I also get increased fatigue, confusion, memory loss, mild depression and emotionalism. I’ve learned to accept (sort of) that this is part of the healing process and will pass. By going back up on the gab, you may be causing more problems. It seems logical to increase the “pain med” when you have more pain. But it’s the DRUG not the PHN causing the pain. I used to taper 10% or less every 4 weeks. When I started waiting 8 weeks, I have less severe and fewer problems. Personally, I have a good stretch, where I feel like myself, then a few symptoms show-up, then I have 7-14 days where I’m more miserable. Then, it slowly improves and I’m better than when I started the taper. This has gone on for the last 22 months. I’m SO glad I’m getting off this med as my brain is clearer, I’ve got my personality back again and my pain is much less.

Gab is not a pain drug as we think of it, it’s an anti-seizure med and works on the brain and the neurons. That’s why for many using it and getting off it can be problematic. There’s also a lengthy explanation of something called "bio-availabilty. Briefly, the body at higher doses, utilizes less of the drug. At lower doses, it uses MORE of the drug. So when you’re below 1000 mg you may have more trouble tapering as mathematically you’re dropping more than 10%. At that point there are ways, such as using liquid gab, to reduce by 10%. Personally, I just wait it out and realize I CAN get through it. I’ve not had increased problems yet with the 1200-700 drop, but I’ve taken about 7 months to get to that. I do adjust my tapers to not conflict with major events like vacations or weddings. Hang in there.

8

Hi Virgil,

Babs knocked it out of the park regarding the difficulty of withdrawal symptoms of Gabapentin at lower dosages.

As one with facial and head involvement, yes, shingles definitely can cause weakness and paralysis of the Facial Nerve, Cranial Nerves VIII IX V in which you have face drooping. and also difficulty swallowing, in which you choke on food, liquids, ,and saliva. This occurs in Ramsey Hunt Syndrome Herpes Zoster-Shingles Oticus, which affects my ear, mouth, and throat.

People with Shingles in the eye have lost their ability to move their eyeball outward or abduct, by loss of the Abducens Cranial Nerve VI. People have lost their vision with Shingles.

I consider myself fortunate that I am still alive and kicking, as there are many far worse than I am. My son cannot move his eyeball from the midline out, ie, abduct.

I did get the Shingrex vaccination, first dose five weeks ago, with minor side effects. It seems to have helped individuals with severe PHN on this site.

Sometimes, it is important to accept the new normal and move on. I have had two ischemic strokes, paralyzed on each side, with cognitive impairment. I received the clotbuster Alteplase drug each time, which helped, but still was able to regain much function, but never total function. I had to accept that, and move on, as well as the shingles occurring every 3 weeks with swallowing and choking problems. I still am the same essence, however… my heart goes out to you…I know how you feel…
Best Wishes
Merry Juliana

9

Thanks again for the feedback and information. The time frame for dosage reduction is much longer than I have been trying. My Dr. did not have a recommendation for a dosage reduction time frame. Just trial and error. As you reduced the dosage did you have to adjust the interval timing for administering the Gabapentin? I have read some articles on the non-metabolizing nature of Gab, and its removal from the body. That leaves me with time periods overnight that seem longer than optimal for maintaining a somewhat steady dosage at the lower levels.

10

That is a really good question. My sister and I were just talking about about that. I take 300 mg with breakfast, 200 with lunch and 200 at dinner. She says take the 300 instead in the evening, right before bed. She’s been on disability for years with back issues. I disagreed. have to take gab with food, otherwise i get dizzy. Plus I can’t hold off that long because of the pain. But maybe for you that would be helpful. As far as how to schedule the tapering, l did a lot of online searches once I realized the doctors weren’t familiar with it. I worked as a medical secretary for 30+ years so that helped me. One day i found an article from a hospice group on how to help patients get off their meds and they listed gab in with other narcotics. I realized this was a different animal. For some reason i went even more conservative and went 4 weeks between tapers. Then i found a Facebook gab support group that’s been incredibly informative and supportive. We base the schedule off benzo groups recommendations as there are great similarities.

There are both commonalities and differences for each of us. I have physical symptoms during my tapers, but the worst for me are the emotional/cognitive problems. Memory loss,both short and long term,math reasoning, depression all take a toll on me. But each cycle I am better.

11

Some people do divide the dose into 4 times a day or more. That’s an interesting concept but my schedule works pretty well for me. But, right now I’m in my Honeymoon stretch; the first 3 weeks after my taper. In two weeks I’ll be in my tough phase, sweating it out too.

12

Thanks for the kind words Merry, I’ve learned from you. Today i
was wondering why I’ve been getting better. I many ideas on that, but a turning point may have been when I stopped thinking about what I’d lost, why I couldn’t do more, when would I get my life back etc. Its all part of a process. You’ve learned this the harder way.

13

Hi again. Right now, and for the last week, I’ve been trying 300 at Breakfast, 200 at 3:00PM and 300 before I go to bed around 10:30- 11:00. I have some sharp pulse pains that last for about 15 seconds in various parts of my foot that go away for a while and then return. All of that is with no apparent exertion or other irritating event. At your suggestion I’m going to try that for another three weeks and then do 200 at bedtime to see how it goes. I have to have at least a snack of some kind when I take the Gab. My most evident side effect is one that is listed right on the Gab info sheet: Clumsy walking. I, and the Physical Therapist, thought it was due to the muscle weakness, but I have regained quite a bit of muscle strength in my tibialis and upper thigh but the clumsiness hasn’t changed a bit. I’ll just suddenly go sideways as I turn a corner or turn around. Very annoying and sometimes embarrassing, and potentially dangerous. Thanks again for all the dosage and timing suggestions. It is indeed more than any of my doctors have known to suggest.

14

i don’t remember the medical term for that walking problem but I’ve heard of others with it. Ataxia?? i only had it a couple of times, but i remember when it happened, walking down my hallway. I don’t remember how others dealt but these problems usually dissipate as you decrease. if doctors would just realize what they’re giving us…