I don’t believe in comparing and contrasting illnesses, as in: “I’m worse off than a person with…” or “I have this, but at least I don’t have that…” You have what you have and have no choice but to deal with it. Or not, I suppose. However, I am going to break my rule, but only because I have two illnesses: Multiple Sclerosis and New Daily Persistent Headache. (I also have a swollen prostate, but as irritating as it is, it’s not in the same category as the other two!)
MS is a disabling disease of the brain and spinal cord (central nervous system) in which the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between the brain and the rest of the body. This leads to a wide assortment of ailments—physical, cognitive, and/or emotional. A total of 2.8 million people worldwide are estimated to live with MS. Canada has one of the highest rates of MS in the world, with an estimated 90,000 Canadians living with the disease. On average, 12 Canadians are diagnosed with MS every day.
NDPH is a rare disorder that happens unpredictably and for unknown reasons. People with NDPH have an intense, ongoing headache that won’t stop. The prevalence of NDPH is estimated to be 0.03% to 0.1% in the general population and is higher in children and adolescents than in adults (although I didn’t come down with NDPH until I was 60). Individuals with NDPH can generally pinpoint the exact date their headache started. The pain is persistently constant and often has migraine-like features.
So there you go… Two relatively rare, debilitating disorders, and I have both of them. I’ve had MS for 20+ years and NDPH for almost a decade. Lucky me, eh.
There are some similarities between the two. MS is known as the snowflake disease in that it is different for everybody who has it, even though there may be similarities between those who have it. With NDPH, the headache can be different in its intensity for each of us who has it. In addition, both illnesses can change overtime.
For 15 years, my MS was relapsing remitting MS, a type of MS where one has relapses (symptoms get worse) followed by recovery (remission). The disability doesn’t get worse between relapses but after each relapse it can end up worse than it was. I now have secondary-progressive MS, where symptoms come but do not go. My neurologist says that I am fortunate in that symptoms with my type of SPMS are slow to develop.
My NDPH started at a pain level of 2 or 3 out of 10. Then spiked dramatically to a 20 (I kid you not) putting me in emergency (doctors thought I was stroking out). It settled over several weeks to a 15, then went down to an 8. It now hovers between a 5 and 7. But even at that reduced level of pain it still freaking hurts and has pretty much incapacitated me.
I am of retirement age but had not planned to officially retire so soon. I was living and working with my MS but NDPH forced me into premature retirement.
Researchers don’t really know what causes either illness and both illness are incurable. There are some medications for folks with MS that help stabilize them, but certainly do not cure them. Sometimes the meds give those with MS bizarre side effects to deal with, or the stability wears off and they have to go on a different med. There are really no meds to help people with NDPH. I have tried seven meds that were no help at all, not even minimal relief. I have not had Botox injections which have temporarily helped some folks with NDPH, but it has not helped not all those with NDPH who have tired it. Some times, Botox has made things worse and generally it stops working after one or two rounds of injections.
I know folks with both illnesses. Some with MS are actually able to work out or are quite ambulatory. Some, too many, are in scooters or wheelchairs or even bedridden. I am able to walk with the use of a cane. Most people with NDPH are greatly limited in what they can do. Imagine going through life with an intense, perpetual headache that never goes away! That’s what those of us with NDPH are dealing with.
This is not to say people with NDPH are worse off than those with MS. Remember, MS is different for everybody who has it and some folks, too many folks, with MS suffer greatly. As I say, I have both and wish to heck that I didn’t have either. So this is my personal comparison.
With my MS, my legs hurt like heck and my feet are on fire 24/7, but I can still walk, albeit with a cane as mentioned. The NDPH, the perpetual, chronic headache, really limits me. I am in constant head pain and have difficulty focusing or concentrating. At the same time, I know folks with MS who can say the same thing. Their MS is primarily cognitive and interferes with their ability to focus or concentrate. They have what is commonly called brain fog, but they don’t have the intense head pain that comes with NDPH (although some folks with MS do have headaches).
Bottom line for me: I am unlucky to have MS but I am lucky that it is not as severe as it could be. I am unlucky to have NDPH and am unlucky in terms of how debilitating it is. So it goes. (And yes, I am stealing that line from Kurt Vonnegut!)
So while I am comparing and contrasting my two illnesses, I am not saying that I’d chose one over the other. Given a choice, which I don’t have, I’d chose neither of them! In short, I am f*cking sick and tired of feeling sick and tired…
I would like to write more about these two pernicious illnesses, but you will have to excuse me as I stop now… because my swollen prostate is making me urgently have to go pee!
Me and My MS 