For more than two years, I noticed my physical health was declining and changing for some reason. Strange things were happening to my body. I blamed it on aging, menopause or from scar tissue from a past surgery and things like that. I became my own doctor, which is never a good idea.
On Thursday, May 18, 2017, I became very ill. I was extremely weak, light-headed, dizzy, lethargic and could barely walk. I had been having headaches everyday for about two weeks that I could not relieve and was extremely thirsty. My left eye had begun slightly twitching a week prior, but I didn’t think anything of it at first, but then it started to progress until my eye was moving so rapidly it looked like a strobe light. Other people could see my eye twitching, as well. The twitching on my eye lid, gradually increased to a larger portion on my eye and moved slightly to my face, as well. Plus, I thought I had been gaining weight, but realized this was different because I could tell now that it was more like swelling. My body had become bloated and was puffing up everywhere. My eyelids even became fat and very puffy to the point that it looked like I did not have any eyelids at all. My eyes were just two tiny slits and my face was also growing and becoming puffy. The skin on face was stretched out and was sagging down, looking like it was hanging below my chin. Also, I looked like I was ten months pregnant and could not button up a shirt that fit two days ago. I knew something was very seriously wrong with me. I just didn’t know what. I have never felt this way or looked like this before.
I knew I needed medical attention immediately and I had to be seen, so I went to Urgent Care. As I ambled in to the building, they saw I was so weak and could barely walk that they got me a wheelchair right away. I usually have great blood pressure but it was 180/100, which was strange and not a good blood pressure for me. They did an EKG right away and found out I was having heart arrhythmias. After they did my initial exam, they decided I needed to be seen in the Emergency room, but there were no beds available for me so they sent me back out to the waiting room for what seemed like forever and a day. I could barely stand it as I felt very ill, dizzy, weak, lethargic and out of it. I was freezing and had to keep getting warmed blankets from them, because my body could not keep warm. So there I sat in a wheelchair wrapped in many blankets for about two hours. Finally, they wheeled me into the emergency room and onto my bed. They did a lot of blood work and again I waited with monitors on, waiting for answers.
Finally the doctor came in and actually had a diagnosis for me. I had Hyponatremia and SIADH (syndrome of inappropriate ADH production). My treatment was to stop my Trileptal (Oxcarbazepine) immediately, which is my bipolar medication. My other doctor orders were to eat salt, eat as much salt as I could. Also, I needed to get my sodium levels checked again next week and to return back to the ER if my symptoms became worse.
They sent me home and I looked for any fast food restaurants nearby that were still open that had some salty foods for me. I found a Taco Bell and ordered a large potato Ole as I knew that was salty.
I was a little nervous to go off of my bipolar medication as I have been taking it for five years at the highest dose and it was basically the only medication I could safely take as I have gotten severe side effects and adverse reactions from all other bipolar medications I attempted to take over twenty-five years. I asked the doctor what would happen if I didn’t stopped taking my medication, and he said my heart could stop and I could die. That was all I needed to hear, so I stopped that medication cold turkey.
The syndrome of inappropriate antidiuretic hormone secretion (SIADH) is a condition that causes your body to make too much antidiuretic hormone (ADH). ADH is a chemical that helps keep the right balance of fluids in your body. Increased ADH may cause too much water to remain inside your body. Chemicals in your blood, such as salt, may decrease. This may prevent your organs from working properly. Antidiuretic hormone (ADH) is produced by an area of the brain called the hypothalamus. This hormone is stored in and released by the pituitary gland. ADH controls how your body releases and conserves water.
When ADH (also called vasopressin) is produced in excess, the condition is called syndrome of inappropriate antidiuretic hormone (SIADH). This overproduction can occur in places other than the hypothalamus.
SIADH makes it harder for your body to release water. Additionally, SIDAH causes levels of electrolytes, like sodium, to fall as a result of water retention. A low sodium level or hyponatremia is a major complication of SIADH and is responsible for many of the symptoms of SIADH. Early symptoms may be mild and include cramping, nausea, and vomiting. In severe cases, SIADH can cause confusion, seizures, and coma.
The symptoms of SIADH are
- Tiredness and weakness
- Muscle pain, cramps, or headaches
- Dark urine or changes in how much you urinate
- Decreased appetite for food, or increased thirst
- Diarrhea or constipation
- Nausea or vomiting
- Trouble thinking clearly, or hallucinations
There are many causes of SIADH but mine was caused from taking my bipolar medication trileptal (Oxcarbazipine). Treatment usually begins with limiting fluid intake to prevent further buildup. Additional treatment will depend on the cause and my cause was from taking my bipolar medication Trileptal, which I stopped taking immediately.
oIn hyponatremia, one or more factors, ranging from an underlying medical condition to drinking too much water during endurance sports, causes the sodium in your body to become diluted. When this happens, your body’s water levels rise, and your cells begin to swell. This swelling can cause many health problems, from mild to life-threatening.
Hyponatremia signs and symptoms may include:
- Nausea and vomiting
- Loss of energy and fatigue
- Restlessness and irritability
- Muscle weakness, spasms or cramps
Sodium plays a key role in your body. It helps maintain normal blood pressure, supports the work of your nerves and muscles, and regulates your body’s fluid balance. A normal sodium level is between 135 and 145 milliequivalents per liter (mEq/L) of sodium. Hyponatremia occurs when the sodium in your blood falls below 135 mEq/L. My sodium level was quite low but I cannot remember the exact number at this time.
My symptoms became worse before they got better and I did end up going back to the ER again about two days later. They checked my levels again and my sodium levels had improved and knew I was on the road to recovery. I finally did completely recover, but it was a slow and gradual process.
Many possible conditions and lifestyle factors can lead to hyponatremia, including certain medications. Some medications, such as some water pills (diuretics), antidepressants and pain medications, can cause you to urinate or perspire more than normal.
I had no idea you could become so severely ill due to low sodium levels, but I found out what it can do to your body and how severely ill it can make you become.
One of my misfortunes was that my life saving, amazing Psychiatrist I had for over twenty years had to retire due to his own illness and unfortunately I have not been able to find a new Psychiatrist in my area yet. I am just seeing someone at the county building who renews my Klonipin (Clonazepam), which is the only medication I am taking now. Unfortunately. I was not receiving consistent and good medical care and realize now I finally understand the importance and necessity for this to keep my healthy and alive.
In retrospect now, I look back over my life for the past three years and can now see all of the signs and warnings signs my body was telling me. I was listening and did try to get medical help, but the doctor I saw at that time did not help me and did not know what to do, so they did nothing but tell me I had to go to physical therapy and that was their only answer. I thought that was absolutely ridiculous and I was not going to waste my time. I am glad I never went to physical therapy, because that obviously would not have helped my slowly decreasing blood sodium levels from dropping lower and lower. Sometimes I just do not understand doctors. This doctor I had seen should have checked my sodium levels but failed to check it for two years. I guess she didn’t understand the importance of it. I know now that the symptoms I was having that caused me to seek her care back then was related to the fact that I was retaining a lot of fluid already. I had been retaining fluid for two years then and that was why I went in to see her.
About four years ago I had a major surgery to remove and reconstruct many of my organs. I had a prolapsed uterus, bladder (cystocele), rectum and small intestine (enterocele). Let’s just say everything that could fall, fell. This caused many problems, such as going to the bathroom and other concerns. This can be caused from having three very large babies or other reasons. The reasons are not known for sure.
Anyway, I had a partial hysterectomy. They left my ovaries as I was not in menopause at the time and I also have one fallopian tube left as the other one started to hemorrhage and needed to be removed. They then surgically repaired and reconstructed everything else.
About a year later, things began to turn for the worse. Sometimes I just could not urinate at all. It was like my urine was being held captive and stored for something else. Then after a few days, I couldn’t stop urinating. It hurt and was uncomfortable feeling as if my bladder would burst open very soon, if I didn’t urinate immeidately. Well, after I got all that urine out of me after a couple of days, the entire cycle would start all over again. This went on for about two years. This was a very uncomfortable, inconvenient and embarrassing condition. Many times I would have to get up about every half hour to go to the bathroom, no matter where I was, or I may have wet my pants. I went in to see doctors numerous times only for them to say they could not find anything wrong with me. Because they could not find any answers as to what was wrong with me, they sent me to physical therapy, which I know with the severity of my symptoms that physical therapy was not going to help me. I never went to physical therapy. I know now that those symptoms were from my fluid retention, related to my low levels of sodium already beginning to drop.
Since the doctors had no explanations for me, I decided I had to learn to live with this strange problem I had. I had no other choice. Then the doctor light bulb went off inside my brain and I thought it must be related to my surgery and it was scar tissue pressing against my bladder and rectum and that is why I was having pain and discomfort and difficulties urinating normally.
I am overweight and a lot of it is caused from taking my bipolar medications I tried taking for years. I have always been trying to lose weight and have been able to lose weight in the past, but could not keep it off, probably due to trying new medications time after time. About two years ago I was dieting again and was working very hard at it. I could not lose any weight at all, but instead as I was dieting, I was gaining weight gradually. This seemed very strange to me and I could not figure it out. Again, I made up my own explanation and decided it must be menopause. I have never been this age before and I have never gone through menopause, so I thought that is what it must be and I didn’t worry about that anymore. I just lived with it.
About six months ago, I really noticed the weight gain and I wasn’t sure why, but I figured I just must be eating more than I should. Clothes began get tight and look terrible. I began to look awful. My appearance was declining. At first I didn’t pay much attention to it, but I noticed as I tried to apply my eye shadow to my eyelids, it became difficult to make it look nice. I was beginning to have no eyelids. I usually have pretty big eyes and always had plenty of eyelids to apply my eye shadow to, however my eyelids had now puffed up so much that I had no eyelids. My eyes began to look smaller everyday and my eyes used to be my best feature. Not anymore. My appearance was changing and again I blamed this on the fact that I thought this is what aging does to you and is doing to me. I wasn’t happy about it, but I couldn’t let it bother me. What could I do?
I also noticed I started getting very physically exhausted much easier and more often. One day, when I was finished mowing the lawn, it took me a long time to recover. The sweat had just been dripping profusely from me everywhere and the sweat burned my eyes from the extreme saltiness of my sweat. It was hot outside, but usually I just need to drink some water and I would be fine, but this time I had to recover. I mean I felt like I had to recover and survive my experience. I had to sit and apply cold wet towels all over my body to cool down and recover from my experience of just mowing the lawn, which I have done numerous times before. After probably about an hour I finally felt better and almost back to a normal state. I thought it was very odd that I would feel so depleted and exhausted like that from just mowing the lawn, but I didn’t worry about it.
These are just a few of the changes my body was making and were some of the many warning signs and symptoms I noticed, but ignored. Please do not ignore warning signs our bodies are giving us. Our bodies are speaking to us in the only way they can. My body was yelling at me, but I ignored it. I learned my lesson and I will listen to my body and watch for warning signs more closely and pay better attention to them.
Everyone, please remember to get your blood levels checked no matter what medications you are on. I learned the hard way and I am blessed and happy to be alive. I knew the importance of getting your blood levels checked when you are on Lithium, but I didn’t know it was necessary to get my blood levels checked for the medication I was taking.
We must all remember to take care of our physical and mental health at all times. Pay attention to all the warning signs our body tells us. Our body is speaking to us for a reason and we must listen. When our body’s are speaking to us with warnings signs, signals and symptoms, it is God speaking to us and we need to pay attention.
When God speaks to us, we must listen. When our body speaks to us, physically, mentally or both, we must listen. Seek medical help for any sign or symptoms you may have. Never try to be your own doctor and do not be an internet doctor, like I tried to do. It does not work and it nearly killed me. I nearly lost my life, because of it. Please do not do as I did.
I apologize for the length of the my post, but I feel all of this information is important for all of us. In case something similar happens to you, I don’t want you to ever have to experience and go through what I did. Plus, I want you to be as healthy as you can be.
Hugs and many blessings to all of you always and forever. Sue
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Medically Reviewed by Graham Rogers, MD on October 27, 2016 — Written by Ann Pietrangelo
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