Sarcoidosis, DI, and Me
By Gilbert Barr, Jr.

When people hear the word diabetes they first think of sugar and insulin. When I hear the word diabetes, I first think of water and dDAVP.

Why? Because I suffer from diabetes insipidus (DI). I started experiencing early symptoms of DI in 1988, when I was about 30 years old, although at the time I was experiencing many health changes...all for the worse. Among such symptoms as migraine headaches, daily vomiting of mucus and blood, lack of energy, weight loss, overheating, skin problems, and male sexual problems, I was also experiencing symptoms that years later were contributed to DI. The three main symptoms of DI include extreme thirst, excessive consumption of liquids, and frequent urination. I experienced them all.

The extreme thirst was unlike any thirst I had ever experienced before! I felt as if I would panic if I didn't get something to drink quickly, as I would become lightheaded and would actually start shaking. I could not go 15 minutes without drinking something. My appetite was already decreasing for other reasons, but a major factor also was the fact that when I ate, the majority of my meal consisted of liquid. If I ordered a cheeseburger with fries, I might eat a fourth of the burger and five or six fries. But then I would drink three or four glasses of soda or tea along with a pitcher of water. Once I started drinking a glass of liquid, I could not stop until it was gone, even a 20-ounce glass, then in a few minutes I was thirsty once again. This went on 24 hours a day!

As a result of all of the liquid I was consuming, I was constantly urinating. My urine would be completely clear. It would also be very painful to try to hold it when it was time to go. I spent over two years never sleeping more than two hours at a time due to having to wake up to urinate then drink something before going back to sleep, then starting the process all over again in a couple of hours.

There were also other health problems during this time, but I believe other symptoms were related to my DI. For example when I played basketball, I did not produce any sweat at all. After a couple of games, my body would get very hot; between that and my extreme thirst, the only thing I could do was rush to the restroom and vomit. My teeth were also decaying at a faster rate and my current crowns coming off frequently. In fact, twice as I was getting a crown put back on an unusual situation occurred when the dentist left me with cotton in my mouth allowing the cement to dry. When he returned after about five minutes, under normal conditions I would have saliva running down my chin. However this time when he removed the cotton and told me to spit I could not produce any saliva...none!

By 1991, I was not only physically drained but also mentally drained since no doctor up to this point, after five years, could find anything wrong. I had now seen seven different doctors, all of whom ran through the same routine for my various symptoms. There was the complete physical, checking my sugar levels for diabetes because I had all of the symptoms even though my blood sugar levels were always okay, various blood work, MRIs, and chest x-rays. The conclusion was always the same...bad sinus problems!

Finally after being told I had a couple of weeks to live and the only thing the doctor knew was that something was wrong with my pituitary gland, I was referred to an endocrinologist in April 1991. I was 33 years old. After another round of tests, I was diagnosed with sarcoidosis, a mysterious autoimmune disease that can infect any organ in your body. In my case, sarcoidosis had infected my lungs, liver, and lymph nodes. However the real life-threatening organ infected was my pituitary gland. When the sarcoidosis hit my pituitary gland, it would kill the affected cells therefore killing the functions those cells provided. Of the many conditions resulting from the sarcoidosis, one was that the antidiuretic hormone (vasopressin) was not being produced on its own, causing me to have DI.

My treatment for the past 11 years is to take dDAVP nasal spray two times a day, one spray in the morning and one spray before bedtime. The first thing I want to say about dDAVP is that you never forget to take it. It works almost instantly and is just as noticeable when it stops. Personally I have found inconsistencies from bottle to bottle. There have been times when a bottle would only work for a few hours or if my nose is congested the proper amount of medication doesn't get into my body, also causing problems. So be aware. In fact when I travel I make sure to take a bottle that I've already been using and I know is efficient along with carrying an extra bottle in a different location, such as in my luggage. You can never be too safe with your dDAVP, as a lot of pharmacies do not keep it in stock.

DDAVP is an expensive medication and a lot of insurance policies will require you use a generic or else pay a pre-determined calculation that basically requires you to pay the difference in cost plus the generic co-pay, which for me ran about $85 per month. The problem I have is that not only is the generic less convenient because you must keep it in the refrigerator, but it is less efficient. Instead of needing two sprays a day, with the generic I require three sprays to make it through a 24 hour period. DDAVP also comes in pill form, but in my specific case the pills just simply do not work, period. I'm the only patient my endocrinologist knows of whose body doesn't accept the pill form. So please be aware of these situations and options because as with all medications you must determine which method is best for you, both health wise and financially. That's the reality of the world we now live in!

Having DI is one of the most life-altering conditions I've got, although by no means is it not controllable nor does it cause you to not live a fulfilling life. It's just that it affects everything I do. For example, I go to the movies in the afternoon so I can sit through a complete show and whenever I go out in public finding the restroom is my first priority. I try to get seats at events on the end of the row so that I do not have to walk over people when I need to go to the restroom. All trips or outings are planned around my dDAVP schedule. If I do go to a movie or another event at night, I will take an additional spray to keep me from constantly going to the restroom and I take an additional spray before any speaking engagement. This can also be dangerous because not only does it get you off your body's schedule, if you take too much dDAVP your body starts to retain fluid [Editor's note: referred to as water intoxication], which can be just as dangerous to your health. It can at times be a tricky situation, but as long as I understand my reality it can be easily managed. My DI is always a top consideration regarding my activities but because I understand my reality, it is easily managed, therefore allowing me to continue with the majority of activities I enjoy.

Whenever I speak at sarcoidosis events or other health functions, each and every time I receive questions having something to do with DI. Even in casual conversation, DI gains the most attention and curiosity. Like sarcoidosis, I feel increased awareness for DI is critical to present and future patients. We must have standard tests ran to check for DI instead of testing someone only after many other tests have proven negative. In my case, if I had been tested earlier for either sarcoidosis or DI, then I might not be in the serious health condition I'm in today. We can't change the past, but we can make a positive difference in the future. DI can be easily managed, if you know what it is you are managing. Let it no longer be known as the "other" diabetes!

Gilbert Barr Jr. is the author of Me & Sarcoidosis - A Lifetime Partnership. For more information on his story and book, visit http://www.gilbertbarrjr.com.