Hypoglycemia

Almost 6 months ago now, in addition to my other chronic health issues, I started having what I can only refer to as “night episodes”. I’ll wake up feeling weird, nauseous, shaky, weak and generally discombobulated. We had originally assumed it to be a hypoglycemia related thing. I took consistent readings of my blood sugar for a while and did a 10-day continuous glucose monitor and neither showed anything abnormal.

I’ve tried tracking my heart rate, my blood pressure, my temperature. I’m going to see a rheumatologist and a neurologist. But I’m struggling to even describe my symptoms.

Sometimes my limbs feel disconnected and floaty. Or they’ll feel unnaturally heavy.

Sometimes my head feels pressurized and floaty.

Sometimes I feel like my body is filled with bees. They’re not stinging, it’s not painful. But they are buzzing around. And I’d like them to stop.

Or it feels like my body has been hooked up to a very low voltage power source. Not enough to hurt, barely even enough to shock you if I touched you. But enough that I’m extra aware of so many nerves all at once.

The only thing I’ve found that helps is heat and food. I will grab a small snack and get under my heated blanket. Then I can usually get back to sleep. Once I get back to sleep, I’m usually okay.

I don’t get night episodes every night. But some weeks they’re more frequent than the nights I don’t. But they do seem to be connected to my circadian rhythm and anxiety as they’re more likely to occur on nights before I have to work the next day or when I stay up too late (past 10pm) and they have gotten a little less intense as I’ve been working on my anxiety coping skills.

Some nights have been especially bad though. One night I kept having a head-squeezing paired with the brain equivalent to the feeling in your nose before you sneeze. It would happen at random though the night. I was so scared I was about to have a seizure, which is odd, because I’ve never had one before. But I think it was so close to what I imagine the lead-up to a seizure feeling like. (For those that are aware of the lead up to their seizures anyway.) Then another night I woke up at 5am in a panic. I oriented myself, thought it was odd and tried going back to sleep. Every time from then on when I would get to the twilight phase of sleep, it would happen again. I’d get an electrical tightness across my chest and upper arms, and panic. Then rhythmically, even after I’d given up going back to sleep and got up, I’d feel like someone were taking each of my internal organs and squeezing them. It was discomforting to say the least.

At this point, I don’t have any answers. I don’t even have good medical terms to describe half of this. But I’m going to keep looking. The flame of hope flickers still. As a song from one of my favorite childhood movies says, “Hope is frail, but hard to kill”. Hope takes a beating. But she rises yet again.

I am determined. I will pray. I will search. I will be kind to myself. I will utilize my curiosity and be courageous. I will acknowledge my emotions. I will wander this road till I find my way home.

#Mystery #hashimotos #chronicinflammatoryresponsesyn drome #PostconcussionSyndrome #IBS

My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
I have been featured on my local news station and interviewer for our newspaper.
I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
I hope to learn from you all and hopefully, you'll gain insights from me.

#PatientAdvocacy #chronicillnesswarrior #gastroparesisawareness #GulfWarSyndrome

Hello everyone,
I am a 43 year old malevliving with GP, IBS, Type 1 Diabetes, and Hypoglycemia. I currently have someone helping me 2 days a week with laundry, shopping, and doing things around the house. I can sometimes do things on my own when I am actually NOT in pain. But, most of the time. I am either doing things WHILE in pain, or not doing anything at all. It truly depends on the level of pain I am in. Unfortunately, as of June 16th, i will no longer have someone helping me as the program will be coming to am end. I am going to be looking for a way to get more help after June 16th. Anyway. I just wanted to introduce myself to the group and say that I am very glad I was invited. Hope to talk to some of you more in the future.

Thanks,
Jason S. (CoolJay)

So I’ve been in a mental crossroads of sorts and finally have some time to get my thoughts together.
The main point of this group is to share knowledge and stories about this way of living that many people don’t understand the hardships of. It’s also to get rid of the stigma about having hypoglycemia just from diabetes and skinny people needing to eat more.

My personal story for creating this:
So in high school I was failing math and was told to have the first 15 minutes of my lunch break as a study hall; well I kept clear vomiting during that period. My mom took me to my monthly stomach doctor appointment (IBS and GERD) thinking it was related to my stomach issues, after some blood test and a physical exam showed no sign of diabetes or obstruction she told me that I was having hypoglycemia. She said that with my body size and metabolism that I need a consistent flow of complex carbohydrates and sugars and protein in my body to keep my energy intake from dropping. I was given a doctors note to allow me to eat in classes and so I began to drink protein shakes and fruit juice and granola bars, plus keep glucose tablets with me at all times.

As the years went on I kept a list of symptoms of hypoglycemia with me so I’d know what to do and warn people that if I start acting a certain way to force me to have a break and eat something. I even told people that I say angry inappropriate words when I get that way and showed them the websites that prove that it’s a real symptom.

Now to the most recent incidents that made me breakdown to create this group:

Before I lost my full time job I was having hypoglycemic episodes there just about once a day (note that it was a toxic workplace environment with toxic people at it’s core) and my coworkers did nothing to help. My body had gotten used to a break schedule where I got 3 breaks every 4 hours on a 12 hour work day, it was this way for a year and a half. Out of nowhere management decided to change the break schedule and told me I couldn’t eat or drink during work. My body went into shock and I began getting: cold flashes, dizziness, pale skin, tremors, muscle weakness, painful headaches and cursing. Every time this would happen my coworkers blamed it on my behavior telling me that I was in control of what I was saying and doing. I went through glucose tablets every day and soon they stopped helping, one time my tremors were so bad I couldn’t open them. My boss told me to get a glucose monitor but that wasn’t covered because I’m not diabetic. My coworkers kept saying “well we haven’t eaten and we’re doing fine” or “if we can’t get a break then you can’t either”, “you’re being unreasonable”. I even got a doctors note saying I had to have regular breaks to eat because of my medical condition but my coworkers thought it was unreasonable and an excuse for me to do less work, my job coach (I’m on the autism spectrum) even said it was an unreasonable accommodation that isn’t covered by the American’s with Disabilities Act or the Job Accommodations Network. I got so mad about this I started to have frequent verbal altercations with my boss and coworkers. I threatened to go to the ER for glucogon and was afraid of getting hypoglycemia blindness in the future.

When I got fired from there I was kind of relieved because I could have less episodes and eat regularly. Unfortunately when I went to Disability,Aging and Rehab Services to reopen my employment case my case manager told me that I will most likely never find an employer to allow me breaks and eat during the job, she told me it was unreasonable and for me to get over it.
I wanted to scream at her. After that meeting I realized that consistent hypoglycemia is not a recognized disability and that I can’t be the only one to live like this.

So after the SOS post I did my boss seemed to be fine with me; she told me to forget about that day and to do busy work while I wait for patients to finish eating and even helped me with my worker’s compensation claim for being admitted to the ER for suicidal ideation. I am holding a grudge against the coworker who caused the incident and plan to ignore him. I will never forgive him for the pain he caused and shall act as though he is dead because to me he is.
Well my job coach came by and talked to me about it last Thursday and now I might need a new one. She told me that my attitude and behavior is what’s causing the problems and I’m a hypochondriac for looking up things about autism and my physiology. She claims I can control my meltdowns and that I fake blacking out. She thinks me disassociating isn’t real and that even when I get hypoglycemic I can control my actions. She also thinks I’m abusing the accommodation system and that texting my mom during our meetings isn’t normal but rude.
I try to calm down when I feel a meltdown coming on but I get in trouble for leaving my coworkers when I need a breather. I use all the things it says online to calm down but sometimes I just burst from keeping it in. I even try to eat small snacks but some of my coworkers don’t think hypoglycemia is real and tell me to wait. I get overwhelmed and then black out, see myself in 3rd person and when I comeback I cry because I can’t believe I lost control. This only happens frequently at my full time job, my part time job coworkers know my triggers and how to respond to me. My job coach never seemed to educate my managers about my diagnosis and blames me for everything that happens.
I want to know if my actions are normal for autism/NVLD people and if disassociation is a real thing. How can I educate my job coach about this and should I look for a new job coach and a new job? Is this behavioral or my brain being wired differently?

Thank you for inviting me to the group. My name is Jason (jay). I'm about to turn 48. I have type 1 diabetes, hypoglycemia, gastroparesis, and IBS. I am also confined to a wheelchair. Feel free to message me anytime and I will answer as quickly as possible. Thanks again!