Neurological and Gastrointestinal Problems
February 14th I thought I was having a stroke. The left side of my face went numb, I started having heart palpitations, extremely lightheaded and dizzy, extreme weakness all over my body, the left side of my neck, arm and shoulder hurt and I felt faint. I slurred my speach while talking to my sister on the phone and couldn't remember my address correctly when i called 911 for what I thought was a life threatening issue. After examining my vitals, they said they couldn't find anything wrong, asked if I needed anymore of their assistance and left.
For reference im 28, 5'5 and weighted 250lbs at the time.
Feeling like it was a one time issue, I chalked it up to being dehydrated and consuming to much salt that day. I also assumed that this was the cause of eating fast food almost daily for two months straight as i was working 10 to 12 hours shifts with my husband as an electritian. About a week later, I soon had the same episode with all the same symptoms accompanied by a few more new ones. Added to the list was now pressure build up in my head, brain fog and some vertigo, something I have never felt or experienced in my life.
To my surprise the episodes continued from that day on but got progressively worse which brought on a lot of panic, stress and worry which were things i hardly felt in my regular day to day life up until this point.
I was soon plagued with 24/7 episodes of HORROBLY debilitating episodes. It started with these waves of cold that would rush through my body. The rushes would make my hands, arms, feet and legs go numb and tingle. The tingling would eventually get to my lips, jaw and neck. Indicators that I was going to have to brace myself for pain. I would then get horrible heart palpitations where my heart felt like it was going to stop. My body would go limp, my eyelids would sag making it almost impossible to keep my eyes open. I would then get a sharp pain in my chest followed by labored breathing/shortness of breath. Inside tremors would come and go in waves all throughout my body. I wouldn't be able to concentrate or focus on anything and didn't understand what people were saying to me unless I asked them to repeat what they were saying a few times or give up trying to understand all together. I would get extreme vertigo where the room was spinning even if I closed my eyes. Laying down only made it worse along with not being able to breath at all and standing up was out of the question. I could barely speak or even have a clear thought or construct sentences that could make sense when trying to respond to someone. My blood pressure would elevate making my neck hurt in the front and feel painful to the touch. My body would shiver in waves as well accompanied by random twitching or muscle spasms. I couldn't watch TV, read books, or interact with other. My eyes became hard to control or focus on something longer than a few seconds. I had extreme fatigue during and after the episode. These episodes would last anywhere from 30 minutes to 3 hours and would start from the time I opened my eyes from little sleep to when I closed my eyes to try and sleep at night. They would eventually stop for an hour or two and come back with a vengance. It was worse at night when I tried to sleep.
I FELT LIKE I WAS GOING CRAZY OR LOSING MY MIND!! That was the most terrify part. That i would turn into a vegtable, have a seizure that i would never recover from, fall into a coma or lose sense of reality and time due to the suffocating amount of pain and loss of reality i was suffering through during the episodes. Noticeable changes were happening to my body before the episodes and getting worse as the episodes came along such as an alarming amount of mucus in my urin, slimy lumpy stool, regular constipation, frequent painful urination without being able to hold my pee, irregular acne on my shoulders back and arms, flush cheek on my left side, EXTREME shoulder pain, pain in my elbows and knees, regular bruising on my legs, and constantly being cold.
I eventually took off work, saw that nothing was changing and had to quit. I cant do any physical activity and doing simple tasks like showering, going shopping for groceries and putting food in its proper places all drain me. Simple tasks wipe me out and I sadly have to ask my husband to go above and beyond by not only working a labor intensive job for 10 to 12 hours a day, but to help me do tasks around the house, drive me around places and take care of things he shouldn't have to take care of.
The symptoms got so debilitating some days that I was either bed or couch ridden and sometimes needed assistance to go to the bathroom or to do daily tasks like dress myself, take showers or make food. I also could not and still can't drive as its hard to focus on the road and I cant process how fast paced everything is when I have tried to drive. The thought of having an episode while driving also terrifies me.
I was rushed to the hospital several times throughout these episodes thinking that they could find the issue and fix it but it was not meant to be. During the multiple visits I got two EKGs (tested normal), one MRI (tested normal), two CAT Scans. One for my brain and chest (tested normal), one or two X-rays of my chest because of the breathing problems (tested normal) and took blood and urin samples which showed nothing wrong.
After my last visit to the emergency room I started recognizing how my body was reacting to certain foods or certain activities. Eating salt, sugar, carbs, honey and having sex made my symptoms EXPONENTIALLY worse, to the point where I thought I was dying. (I'd have sex occasionally when the episode would subside for a few hours or I was having a not so horrible day.) Through a lot of experimentation (taking those things listed out of my diet/life and bringing it back in) I eventually found that those items were causing a lot of extra suffering. So I decided to cut those things out of my life completely. I started eating whole foods plant based, nearly raw fruits and vegetables only because thats what my body could handle. I started eating that way about a month and a half in. I cant eat onions, garlic, strawberries, pineapple or oranges without getting inside tremors, rushes or brainfog either. Taking b12 suppliments gives me horrible episodes as well.
Feeling defeated, limited and helpless I went to my primary care doctor and asked her to do testing of all of my nutrients, vitamins, hormones, as well as check if I have a UTIs, Diabetes and if there was anything wrong with my liver and kidneys. She discovered that I had iron deficiency anemia and Adrenal Fatigue (hormonal imbalance as well as an over production of cortisol). There was nothing else that screamed emergency to her but she did find that my lactic acid was 3 times the normal amount it should be and I had a bacterial overgrowth from the saliva test/possibly candida.
Thinking i found out whats going on with me i started taking everything day by day. Two months in, after eating clean for two weeks, I noticed the episodes going from happening every day all day, to episodes every other day. It'll be 4 months in 7 days and now I have episodes every 2 to 3 days or so. If I slip up and have salt, sex, sugar, carbs, honey, a lot of onion and garlic the episodes will happen through the entire day and night, every day for a few days, then subside to my normal episodes as described every two to three days. I still cannot workout, do daily tasks without horrible debilitating fatigue. I can barely shop at stores or do activities like clean the house. Doing the dishes is a lot for me and I only dream about putting salt on my food or having fun with my husband. I no longer have a social life or do anything that is more than absolutely needed. I dont believe that what my primary care doctor has found is the only thing going on with me. I believe there is a correlation with my bad eating for two months and me getting horribly ill with these episodes and symptoms.
I'm fearful that my episodes and "sensitivity" will continue and I will never get diagnosed with whats actually causing all of these issues. I know iron differency was causing some of the issues or amplifying some of my issues but she said its most likely cleared up already and I have never heard of adrenal fatigue causing all of these issues from food to sex to horrible debilitating episodes. The only upside to all of this is that I lost 56lbs in 3 months and three weeks. I am now 194lbs because of my strict clean eating.
If anyone can give me insight that would be much appreciated. I know this is a weird case but anything could help.. Thank you for your time… I know this was long. Thank you if you made it this far into the story haha.
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Hello @shannecal and welcome to Mayo Connect. I can't imagine coping with the symptoms you mentioned. It sounds like you have been trying to find an answer with only partial success.
From your post, I'm under the impression that you have only been seen in the ER or by your PCP. Is that correct?
Have you asked for a consult with a neurologist, endocrinologist, or allergist/immunologist? These are specialists who might be able to hone in on a diagnosis.
I'm sure you need some answers. Can you see about getting a referral to a specialist?
@shannecal – You have my sympathy for being forced to live with these disabling symptoms and not getting close to getting an answer!
From the tests your PCP performed 2 results stand out that may mean something- overproduction of cortisol and adrenal fatigue. Cortisol is our stress hormone, it is produced in the adrenal glands and the pituitary gland signals for it to be produced.
Adrenal fatigue is more of a trendy term than a diagnosis.
The adrenal glands also produce other important hormones, such as aldosterone. Aldosterone regulates sodium, potassium and blood pressure.
In addition, the adrenals produce sex hormones ( testosterone).
The extreme of adrenal fatigue is Addison’s Disease- the adrenals can’t produce enough of the necessary hormones- and can lead to disabling symptoms.
Teresa is correct in that you need to see specialists.
Definitely an Endocrinologist- preferably at a major university medical center, where they have the ability to perform complicated hormonal tests.
Do you live close to one?
Can your PCP help you getting referred?
Are you vaccinated against Covid-19? The brain fog, fatigue, head pressure, heart palpitations, etc. could be consistent with either Long Covid or a vaccine injury. You can learn more about vaccine injuries in the Neuropathy section of Mayo Connect or by joining the Neuro V Long-Haulers group on Facebook.
You have your share of issues with this for sure. My cases was not nearly as severe as what you are describing.
Have you gotten with a GI doc?
You mentioned "Adrenal Fatigue (hormonal imbalance as well as an over production of cortisol)"
For me – a tumor was noted on one my adrenal glands. It was determined to be a pheochromocytoma. They did testing to check for cortisol, epinephrine or norepinephrine levels and a few others that would point to the adrenal glands being the source of the extra hormones.
Here is some info – https://www.mayoclinic.org/diseases-conditions/pheochromocytoma/symptoms-causes/syc-20355367
This can also be triggered by certain foods.
Probably not the answer in your case – but worth looking into.
Stay safe and well