Friday, December 9, 2016

Shingled Out – Updated

(A quick thank you to all who have voted for Wheelchair Kamikaze in's "Best Healthcare Blog" contest. Voting continues until December 12, (click here) to cast your vote…)

Note – this is an updated version of this post, which was originally published earlier today. This update includes further information on the shingles vaccine, added at the end of the essay, due to some concerns raised by readers over the safety of the vaccine when used in MS patients. Just wanted to ensure that these issues were addressed. 

Well, it looks like the holidays have come early to my house, and rather than Santa bringing me that 1956 Porsche I've always wanted, I instead got the shingles. Yay. Guess I was on St. Nick's "naughty" list…

About two weeks ago I started feeling vaguely unwell, suffering from the kind of symptoms one typically gets before the onset of the flu. Just generally achy, no appetite, and a tremendous amount of fatigue, even for an MS patient. A few days later I was assaulted by the worst headaches I've ever experienced, jolting bolts of excruciating pain that felt as if somebody was trying to impale my skull with a red-hot stiletto behind my right ear. The pain, which exploded from the bottom of my skull forward to the area above my right eyeball, came in waves about every minute or so, and was breathtakingly debilitating. I have a lot of experience with pain due to a degenerative bone condition called Avascular Necrosis, but the searing, twisted agony I was suddenly stricken with was beyond anything I'd ever felt or even imagined.

As I sat cradling my head in my hands, trying desperately to keep my skull from blowing apart, my wife quickly googled the symptoms I was experiencing. She came up with a condition called occipital neuralgia, which can develop in MS patients. The ailment involves inflammation or damage to one of the occipital nerves, which run from the base of the skull up through the scalp, and its symptoms seemed to precisely match what I was feeling. As this was all occurring on a Saturday night, there was little I could do but suffer through it. I was absolutely not going to go to a hospital emergency room, as I long ago resolved that before I would put myself through the existential, soul crushing misery of sitting in a New York City emergency room on a Saturday night I'd have to be suffering from something no less serious than a severed limb. Much better to lay moaning in bed waiting for my skull to combust.

The next morning I called my neurologist and told him what was going on, and he agreed that my symptoms sounded like occipital neuralgia. He phoned in a prescription for gabapentin, a drug also known as Neurontin, which is used treat nerve pain. The Neurontin did indeed reduce my pain level substantially, but also made me feel completely loopy and dumb as a box of nails. Still, not a bad trade-off, all things considered. Better stupid with a dull headache than smart with a skull trying to contain a thermonuclear blast.

Later that day I noticed a slight rash on my right forehead, an area in which I sometimes get a bit of psoriasis. For reasons that doctors really can't explain, many patients with nervous system diseases also get skin conditions like psoriasis or eczema. Ask a doctor about this strange correlation and they'll likely answer you with a string of polysyllabic mumbo-jumbo, because most physicians would sooner poke their own eyes out than utter the words "I don't know", but the truth is this connection has long been observed but is little understood. In any event, the skin on the right side of my forehead became more inflamed as the day went on, and started getting very tender as well. By that night I noticed little blisters appearing in the rash, and I started thinking "shingles".

The next day, Monday, I called my neuro's office and told them I suspected I had a case of shingles, and they told me to come right in. After a brief examination, the neurologist I saw confirmed that I probably had shingles, but advised me to see a dermatologist ASAP to nail down the diagnosis. I saw a dermatologist the following morning, and she concurred that I did indeed have shingles. I told her that I would rather have a spiral staircase, and she just stared at me blankly. I hate doctors with no sense of humor. She did say that the severe headaches I had experienced were typical for people developing shingles on their forehead and scalp, so that at least explained the pain I was feeling.

Shingles is a condition caused by the varicella zoster virus, also known as the herpes zoster virus. This is the virus that causes chickenpox, which was very common among children of my generation, back before most kids were given the chickenpox vaccine. I had chickenpox when I was six years old. The varicella zoster virus is a human herpes virus (click here), a family of viruses that also includes Epstein-Barr virus and the viruses that cause oral and genital herpes. In total, there are eight known human herpes viruses, which all share a common trait: once a person is infected with them, they are infected for life.

In the case of the varicella zoster virus, after causing chickenpox the virus goes into deep hibernation, taking refuge in the root cells of nerves. Later in life, usually when a person is older than 50, the virus can suddenly wake up and migrate down the path of the nerve to the skin, where it causes the painful rash that is the hallmark of shingles. There is now a shingles vaccine that can greatly decrease the chance of a person infected with herpes zoster to develop shingles, but I never asked for the shot. I'd seen countless commercials for the vaccine, and had thought to myself, "self, you should probably get that vaccine", but as I am generally nauseated by prescription drug advertising I refused to be swayed by the pharmaceutical companies' slick efforts to hawk their product. Stupid me.

While I did know that shingles involve a painful rash, I didn't know that the condition also commonly makes patients feel like absolute crap for weeks on end. Those initial flulike symptoms I was experiencing in the days before I developed the searing headaches and then the rash have blossomed into full-fledged misery, leaving me feeling like I just tried to kiss the "A" train between stops. I still have a dull headache, my muscles hurt, I feel feverish (even though I have no fever), and I'm so fatigued that I could easily sleep 20 hours a day. I'll be on antivirals for the next 30 days, which supposedly will shorten the duration of these symptoms. The blistering rash on my forehead is starting to crust over (yum), which is the first sign of healing. And, of course, as with any bug that strikes an MS patient, all of this has only made my neurologic symptoms much worse. My compromised extremities are less functional than ever, a frightening preview of what my continuing progression has in store.

I've been told to avoid contact with people until at least the end of this week, since there is a chance I could pass the virus on to folks who either never had chickenpox or were never vaccinated against them. The weird thing is that if I did pass the virus on to someone they would develop chickenpox, not shingles, since the first stage of varicella zoster infection is always chickenpox, no matter when you contract it. Avoiding people shouldn't be much for problem, as I can barely make it from my bedroom to the living room in my wheelchair. And who wants to see people anyway, when you've got a disgusting crusty rash on your forehead. Children would run screaming…

Please, take my advice – if you had chickenpox as a child, go get the shingles vaccine. I wouldn't wish what I'm currently going through on a dog. Actually, I wouldn't wish anything bad on a dog. I like dogs. Dogs are better people than most people.


Addendum: numerous readers have sent notes advising me that because the shingles vaccine contains live virus they've been told it's a no-no for MS patients. Others, though, have reported getting the vaccine with no problems.

Here's more info on the shingles vaccine and MS, from the National Multiple Sclerosis Society Website:

"Zostavax is a live-virus vaccine to prevent shingles. MS neurologists do not recommend live-virus vaccines for people with MS because these vaccines can lead to an increase in disease activity. However, Zostavax is an exception because most people have had chicken pox earlier in their lives and therefore already have the virus in their bodies. Each person needs to discuss the potential benefits and risks of this vaccine with her or his healthcare provider."

For further info, a very comprehensive article about the shingles vaccine and its use in MS patients can be found at the Multiple Sclerosis Association of America's website (click here).

Bottom line, there seems to be some conflicting information out there regarding the safety of MS patients getting the shingles vaccine. This appears to be due to the complex nature of Multiple Sclerosis and the drugs used to treat it. Each patient is different, and no one-size-fits-all approach will cover all bases. Given my horrible experience with shingles, I'd say it's definitely worth a conversation with your neurologist to discuss whether or not you're a candidate for the shot.

(Warning, shameless self promotion ahead: Wheelchair Kamikaze has been nominated for's "Best Healthcare Blog" contest. If you feel WK deserves such an honor, please cast your vote on the contest webpage (click here). Just scroll down at the contest webpage until you see the blog name, Wheelchair Kamikaze is currently in fourth place).


  1. Just cast my daily -- well, nightly -- vote, and was pleased to see that WK is now in third place.

    1. Thanks so much for your help. Hopefully I'll hold onto at least third-place.

  2. Why do extremely painful things have names that make the condition seem like joke? Shingles badly needs to have a name change.

    Thanks for the info on the vaccine as well as the update.

    Tough choices to make on this stuff, and you can't count on the pharmaceutical companies to give you all the info needed to make an informed decision. And that's one of the reasons I appreciate what you're doing.

    1. Hey Brett, I completely agree with you about the name "shingles". Much too benign a word for what the disease entails.

      I also agree with you regarding trusting the pharmaceutical companies, but in this case I think the problem lies with the vaccine being a live virus vaccine, other examples of which can be dangerous for MS patients. In this case, though, it appears that because the people getting the vaccine already have the virus in their systems, the danger of complications is far less.

      Thanks for the kind words about the blog, it's nice to be appreciated :-)

  3. Hello WK,
    Are you still on Tecfidera? I am curious if you have read or seen any correlation between people on Tec and high rates of shingles? Here is my story….

    Diagnosed with MS February 2016. Started taking Tecfidera (my first and only DMD so far) in April. Since then I have had 3 outbreaks of shingles (2 very minor and 1 severe, like your account above). I have also had 2 cold sores but have never had cold sores in my life (I am 44 years old) before now. I was prescribed Vaclovir (valtrex) and take it daily to combat the cold sore and shingles but this current cold sore has come on in spite of taking the anti viral meds. I too was prescribed Gabapentin to help with the associated shingle nerve pain. My Lymphocyte count is down to 0.7.

    In regards to flushing, I had very minor episodes of flushing (even with full dose of Tec) however, strangely the last month and half I have been experiencing severe flushing episodes. Odd that this would come on so late in the game as I hear the flushing issue is more associated to the first 6 to 8 weeks after starting Tec. Additionally, my eyesight issues associated with MS have been getting more frequent as of late (not better as one would think a DMD would help with).

    Today my doctor has advised that I stop taking Tecfidera and we will discuss a new treatment plan at my appointment in January. Although the side effects of Tec for me are "not fun" I can still tolerate them. I told my MS nurse that my account of what has been happening recently is not to try and manipulate them to say "OK, you don't need to take the drugs". I would rather tolerate side effects of meds but know that my MS is being looked after. But my doctor feels the viral outbreaks are too much and I should stop taking Tecfidera. I am concerned about being off meds. I am concerned about adapting to a new med once we choose what that med will be.

    What are your thoughts? Have you heard if Tecfidera suppress the immune system more than other DMD's opening the door for viral outbreaks? Is what I am experiencing enough to stop taking Tec?

    Keep kicking ass!!

    1. Hi, thanks for commenting…

      If I were you I would take my neurologists advice. Tecfidera has been known to decrease white blood cell counts to dangerous levels, and this can definitely be the reason why you are getting repeated viral infections. Although these infections may be more annoying than anything else, the real danger lies in something like PML, which can be fatal.

      I understand not wanting to leave your MS untreated, however, a treatment that isn't agreeing with you is worse than no treatment at all.

      It will take a while for your blood cell counts to come back up after stopping Tecfidera, which is why I'm sure your neurologist has told you he would go over further treatment options with you in January. There are plenty of other options out there now, many of which are at least as effective as Tecfidera..

      I know that different treatment centers have different thresholds for cutting off patients from Tecfidera, and a lymphocyte count of .7 would disqualify you from taking the drug at some centers.

      This isn't something you should fool around with, lymphocyte counts drop too low can be very serious…

      Don't mean to scare you, but, like I said, if your neuro is concerned you should certainly heed his advice. Many patients do very well on drugs other than Tecfidera…

    2. WK, I can't tell you what your blog and your response means to me. Thank you so much for taking the time to respond. Your response has confirmed what my wife and I were thinking. Sometimes the docs only give you the science side of the conversation and the human side gets lost. I appreciate you :)

  4. My partner encountered the vaccine thing last year. Unfortunately, there seems to be so much confusion about MS and live vaccines, I would love to know what the ACTUAL answer is.

    My partner's haemo didn't want her to have live vaccinations, my partner's neuro did and wrote this - "...In my opinion, there is no evidence that vaccinations increase the risk of a MS relapse...."

    I think there is prolly little evidence either way (that vaccinations do or don't exasperate MS activity): and for the most part, until we find out for sure, we (neuros included) are making it up as they go.

  5. Very sorry to hear of your health problems. Just curious have you ever heard of low lying tonsils? Low lying tonsils can cause a person to be diagnosed with MS. If you are interested a Google search can bring up some information. A post from you will reach many people.

  6. So sorry, Marc. I came down with the shingles about 4 weeks ago. I got the vaccination in 2012, but got the outbreak any way. Apparently it is only a bit over 50% effective, but I truly believe that having got it saved me a whole bunch of misery. Getting the vaccine can limit the severity a lot, even if it isn't 100% effective in preventing it. I still got the big, nasty-looking blisters, but between the shot and the fact that I was administered the anti-viral very quickly, the pain level turned out to be a lot lower than normal. I'd say it was well worth it, as I've seen others suffer with it, and it can be REALLY bad.