Allow me to introduce myself. I am a chronic pseudotumor cerebri sufferer and certified clotheshorse, here to tell you how to live the pseudotumor cerebri life with style and panache. There are no shortages of articles filled grisly medical procedures and dire warnings, but no one tells you how to get up each day and deal with this disease. And, make no mistake, pseudotumor cerebri (aka primary intracranial hypertension or benign intracranial hypertension or Ptc) can be chronic. I have been living with bouts on and off for over ten years.
Proper selection of clothes and accessories is one way to make it less painful. For all of us, the onset of this disease has made the change of seasons and outdoor life a living hell. The bright, burning lights, sensitivity to temperature extremes, numbness in the extremities, and sheer exhaustion just makes this all one big drag. But you can fight back.
Long before I was diagnosed with pseudotumor in my mid-thirties, I was an avid outdoors person and still am. My Irish farm born and bred father had me accompanying him to trout streams and lakes, fishing from docks and beaches and hunting on the moors of America and Ireland from the time I was a wee bairn.
I spent summers swimming the surf of Long Island, visiting lighthouses, nature preserves and state parks. From my age twelve on I was an avid gardener, and visiting the great estate gardens of Long Island was one way I kept my my weight down and managed the disease.
But let me tell you. At one point I was up to 1600 milligrams of Diamox, and not the sequels either. For those of you who have been there, you know what that means. I was not going to give up my life to this miserable disease–so I learned how to shop.
To begin with, outfit yourself with a good pair of shades. Prescription sunglasses are the Rolls Royce of eyeware and very expensive, but if money is definitely an object, stop by Pay-Half or Daffy’s and pick up a six or eight dollar pair that you can wear over existing glasses. Duane Reade also features an unfashionable little number for about $15.00 that is marketed to cataract surgery patients. Ugly, but functional, it provides the ultimate in sun-blocking. In the unlikely event you have this disease but do not wear glasses, go a little more expensive on the sunglasses and buy from an optician to assure proper coating against UV rays since you don’t have real glasses to protect your eyes.
Next, get a hat. If you don’t want to cringe inside all day, at least spring for a baseball cap. Many advertisers give them out for free. I have a choice selection from Emigrant Bank, Smithwick’s ale and many others who have been vying for my business. If you are feeling flush, let me recommend in particular the line of Betmar hats that have a rated SPF of up to 50. These extra-wide brim summer hats are both stylish and practical. Traditional straw or wool felt hats, depending on the season, are also excellent choices and come in a wide variety of shapes and colors suitable to match your head size, face, and outfit. Since the onset of my disease, I have become famous for my beautiful hats, but no one knows the real reason I became a convert to the joys of millinery.
What about the winter? When I first was diagnosed with this disease I got into a very nasty argument with my father who could not understand how the real pain and numbness associated with reduced circulation from diuretic drugs could drive me into my home, thus fleeing both the New York winter and my social and daughterly duties at one shot. There is no such thing as a winter wonderland when you are on Diamox and its carbonic anhydrase inhibitor cousins. Instead, you wonder how when the miserable tingling will stop and how quickly you can beat feet into a warm house.
Thin, warm socks and gloves are your godsend. Think cashmere or silk. Ounce for ounce these are two of the warmest textiles known to mankind. In fact, silk is standard gear for hunters and fishermen who must endure hours in the cold while seeking their prey. Some of the best sources of silk socks, glove liners and underwear are hunting, army surplus or camping supply stores.
Cashmere or silk socks, glove liners, underwear, tee shirts, and turtlenecks layered under an outer layer of clothes gives you the warmth you need to keep going in the cold. When you are inside, simply remove the outer sweater and/or jacket, fold it into a tote bag and make yourself right at home.
You may want to buy your wellies a tad big and add boot liners (sold separately) to your arsenal. Boot liners, complementing your sock liners and socks can make the cheapest rubber rain boots as soft and warm as the most expensive sheepskin-lined Australian fashion boots.
A word about shopping. Try to bring a non-affected friend with you. Both Pseudotumor Cerebri and the medicines used to treat it distort and flatten out color vision. That means you may be wearing white with off-white or a greyish bone with a creamy ivory or black with navy. Get a second opinion on any color matches on new purchases until your papilledema subsides and your medication dosage is reduced.
Don’t let this disease drive you into hiding. Live your life with style and panache and let the devil take the hindmost.