Howdy Hydrocephalus

Understanding my unique gyroscope


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Breaking the Seal


I have not written since June 21, 2016 after my Endocrinology tests. There was not much to write about. Okay I admit there has been plenty to write about. My two little energy pills twice a day has allowed me to use the hash tag #summeroffun. I have had the most energy since December 2011. We did kayaking, paddle boarding, walking, easy hikes. I stayed up later than ever. I even painted two walls in the house spur of the moment. Don’t get me wrong these were not all day events.  Maybe  1-2 hour activities with a break then a rest and then another activity then break and even a third activity that day. It has been amazing on that aspect but I was still feeling fatigued and weak. I still was losing weight for July but from August 10th to today I was on holidays where I ate more than normal with big breakfasts, large dinners and plenty of junk food in between. I drank a lot too…those empty beer calories but those beer taste so good sitting on a deck BBQing. From that unhealthy summer binge at least my weight was stabilized and gained 2lbs. When I went to for my follow up Endocrinology appt. on August 22, 2016 I weighed 126lbs.So from undiagnosed hydrocephalus to brain surgery on  September 4, 2012 20 to August 25 , 2016 I was peeing every 15 minutes. I really have no idea how many times I would go pee because it would be in a sleeping pill delirium. I know always at least 6 or more times. I would get about 2-3 hours sleep and then the pee train would start. But hubby says that I go even then but I am most likely sleep walking  and don’t remember. So in reality I was getting very little sleep every night. 

My peeing was overlooked. I mentioned it to my neurosurgeon more than once and he just said I should drink less so I did. With my brain injury, I was not self-aware of how bad my peeing still was after surgery. I had other things going on too such as neurogenic stutter, getting my right side to cooperate, feeling confused and trying to overcome daily chronic pain. 

So I think last summer when I was camping at Elkwater Park I got really dehydrated. So I made it a priority to drink more water. I needed to get in my 8-10 glasses then an electrolyte powder and more water if out walking or in the sun. This is when I first noticed my peeing all the time. This lasted until about December where I couln’t take it anymore so I cut back my water consumption and went to myt GP. Between December 2015 until April 2016 I had many blood tests for Diabetes Mellitus (DM) and each one came back negative. 

I had begun to lose weight. I had no appetite and was nauseated all the time. My sides and belly would hurt. My hair was falling out all the time and I had very dry skin with a persistent rash that would not go away. I had only enough energy to take kids to school, crawl back to bed, sleep all day only to get out to pick up boys. Libido was non-existent. I would wake up each morning feeling like I was hung over.  I was going to the bathroom so frequently that I was going through at least one of those double toilet paper rolls every day. 

Ouch as my  nethers began to feel sore and every time I wiped it was like sandpaper. My life revolved around bathrooms. How long I could make it until the next bathroom. I would pee at least 4 times leading up to leaving house. If local short trip pee when arrive. Pee again at next store…followed the same pattern over until I got home again.

After my testing in June, I decreased the amount I drank even more. But nothing changed. All I can compare it to is if you are drinking with friends at a pub and go to the bathroom and they bug you about “breaking the seal and that you are in trouble for the  rest of the night”. 

So basically if you are drinking and finally go to the bathroom; your bladder will not hold anymore and want to go pee more frequently. So my life had become an out of control broken seal nightmare. That not only affected me but my family as well. That is until August 25, 2016.
I had my follow up appointment with the Endocrinologist on August 22. I found out that my growth hormone was great but my anti-diuretic hormone was not so great. He diagnosed me Central Diabetes Insipidus (DI).  The Doctor said that I most likely acquired it from my ETV surgery. He said that all I would need to take is one spray of vasopressin before bed (maybe one during day too) and that it will work quickly. That you could tell if the meds would work within a couple days. 

The appointment was positive but after being  to many doctors and on a Pharmacy of medicine and treatments that did not work I was really skeptical.  I had to wait until August 25th for my meds to come into town. I took it or tried to and went to bed.  I woke up the next day and felt refreshed. It was still a sleeping pill induced sleep but I was only  two or three times. I was amazed but still skeptical. It is the August 28th and I drove 3.5 hours without stopping to pee. It was the best drive in. A long while. I was not as tired and I was able to concentrate.  My vision didn’t go blurry either. Here is to re-balancing my ADH hormone, electrolytes and no longer being chronically dehydrated. Sorry toilet paper companies….you can shove your mega packs I will be using less of your products!!