Sleepiness has plagued me all of my life but the same as everything else, I could never get a diagnosis. My first memory of it was when the school bus driver contacted my mother because he would have to shake me awaken me to get me off of the bus in the mornings. Looking back now, I realize that it was probably due to the large breakfast that I had eaten, as I did almost every morning. Things like Oats, Cream of Wheat, and all manner of wheat products from biscuits and gravy to toast.
I remember being sleepy almost all of my life, in school and then later in business meetings and actually falling asleep wherever I was. If I visited friends for dinner, I would pass out on their couch after eating. If the couch wasn't available, the floor was more than adequate.
Driving was a challenge as I had to pull over and sleep about every 50 miles, give or take a few. It wasn't a cat nap situation for the most part. Sometimes I would be better after and hour or so, but other times, I might not wake up for 3 to 6 hours.
At one point I slept for the better part of 6 weeks and then the doctor diagnosed me with EBV. I have always had low blood pressure and low blood sugar. But still after the EBV deal, I could not stay alert for very long at a time. My 18 year old son recently told me that I had been asleep ever since he had known me.
I was told that I was allergic to wheat by a nutrionist, later confirmed with allergy testing and then went gluten free. I am more awake now than I have been in years, but if I accidentally consume gluten, I know it almost immediately as the sleepiness comes back.
Needless to say, my house has been a wreck as things just didn't get done for so many years. Sleep was not an option, it was mandatory. I just couldn't stay awake.
A GI specialist prescribed Cholestyramine for me after having my gallbladder removed. I was having uncontrollable D so bad that if I were going to work at 3pm I could not eat a bite of food in the am at all or I would never make it to work. I couldn't eat until I got home late at night so I could be near the bathroom.
I was unable to eat out at any restaurant as often I had to hit the restroom before I could even finish or pay for the meal, but that was always better than when I didn't have to hit the restroom until I got in the car and made it a couple of miles down the road.
The medicine made it to where I can eat out and at least have the time to make it to the restroom. I have to say that for it.
I have learned that I am allergic to all but 7 of the foods that they tested for and all of the plants, molds and creatures, particularly grasses, which of course includes rice, wheat, rye, barley and oats and I suspect that I have Celiac's disease, but doctor is digging his heels in about testing, wanting it to be something else. I'm not sure what, but he has run every blood test under the sun and so far has come up with low thyroid, which is not getting any higher no matter how much synthroid he prescribes, and low folate.
At this time I am trying to get my doctor to authorize more testing but meanwhile I have gone gluten free and have had to use the Cholestyramine very seldom as in when I am going out to eat, just to make sure, but other than that, I have had no problems at home. I guess I am using it as a crutch but hey, once you have gone 12 years with no control of your bowels after eating, you can get a little bit paranoid about it.
The Cholesyramine is a great band-aid for what ails you, or has been for me. It has helped me to try to live somewhat of a normal life, while testing is ongoing to find out what my real problem is.
Definitely difficult to learn a new job or remember much of anything with this so called "brain fog". My doctor did run a test and found that I had extremely low folate which can lead to memory problems. I have been taking folate now for a couple of months and haven't been retested but I believe that it has helped some.
For my complaints of dumping immediately after taking a bite of food, my primary care doctor did two things, gave me zelnorm, which is for constipation and told me that I was depressed, it was my nerves, and that I had IBS. He managed to get me to take paxil with no results, then zoloft which made it so much worse that I could not even eat one bite of food in the am and travel by car to work without having an accident. I had to wait all day long until I got home to eat, to where I could be near a toilet.
He kept trying different antidepressants, all with no results. I refused them after awhile and still he kept trying. Even though he never said it, looking back, I realize now that he thought I was some kind of a nut case. Our twenty year relationship ended when his office sent me a certified letter stating that it was no longer beneficial for him to be my doctor.
The only good thing that he did for me was to send me to a GI doctor who prescribed Cholestyramine which helped enough with the D that I could have enough time after eating to get to the bathroom, in most cases.
By that time I was so worn down and mentally confused due to fatigue and other symptoms that I didn't have the wherewithal to even keep track of doctor's appointments. The GI doctor insisted that I needed a test, which I have no clue to this day what the test was, and I kept dragging myself out of bed and going on the wrong day. I would go a few days in advance or a few days after the scheduled appt. I never got that test.
I then went through a sleeping spell that lasted for over 6 weeks, only rising to use the restroom and eating very little as everything made me sick.
Went to another doctor who told me I had EBV and low thyroid.
By this time, my extended family had drawn the conclusion that I was just lazy and were very unhappy with me because I could not drag myself out of bed to go visit them or do things with them. My brother washed his hands of me at that time.........and still won't speak to me because he wanted to have a big dinner for my birthday and I told him that I was too sick to come.
My new doctor listened to my entire laundry list of complaints, including the fact that my memory has deteriorated so badly that while on the way to his office I could not even remember where I was going at all for a few moments, and to his credit did not try to put me on antidepressants but started running blood tests. They came back as extremely low folate and low thyroid.
I have discussed the likelihood that I have Celiac disease with him but so far as I am aware, he has yet to order any blood tests for that nor has he referred me to a specialist in that field. He did however refer me to an allergist. The results where that out of 64 things tested for including, trees, grasses, molds and foods that I am allergic to all but 7. Beef, pork, chicken, fish, egg whites, garlic and saline are my safe foods.
When the test results came back on all of that he exclaimed with happiness, "See, it's not all in your head after all, you have a real problem". I had never indicated that it was all in my head. I had told the man that I have had chronic D for 12 years now and was suffering from extreme fatigue to where I could sleep around the clock and that my stomach was constantly bloated and felt as if it were on fire with infection at times, which I believed was altering my ability to absorb proper nutrients to the point that I was losing cognitive ability.
On my own I have gone gluten free, but it is particularly difficult when you are allergic to all grasses including rice. I have lived on cabbage soup, roast beef, scrambled eggs, green beans, pineapple and chicken for the last several months. The D is gone for the first time in 12 years.
This guy seems to want to help, but really knows so little, but is not really wanting to refer me to a specialist, as he seems to want to try to figure it out himself. If he will refer me to someone who can help I will keep him for my primary physician but if he won't, I am going to have to go doctor shopping yet again.