TorturedSoul

Yes. They did stool testing and CT scan. They found nothing. I know I've had so much radiation but I felt that sick. I was so weak and told them about this uncomfortable feeling like I was bleeding out in my abdomen. It was worse after eating during crash. After I ate I feel sudden weakness in all my limbs. Do I guess they were ruling out ischemia Bc my d dimer has also been elevated. Nothing showed up

I haven't had a TTT. My B12 was low. I had shots for awhile but didn't notice a difference. Ferritin low but my other iron levels normal. I do take iron every day for low ferritin. I take D as well. I had holter monitor. It captured every episode but it wasn't an arrhythmia. It was sinus tachycardia. I've seen EP specialist and neurologists. I've done EMG Bc during crashes I have crazy muscle twitches. My neurologist also found clonus and Hyperreflexia in all limbs. She just said some people are like this. My neurologist sent for basic autonomic testing. One I had to hold my breath and inhale while my blood pressure was being measured ( and heart rate). I also did QSART but it was terrible. They put a tourniquet on my right arm and right leg. They turned purple and I had to stay like that for 15 minutes. It was torture. They then put electrodes on me to measure sweat response. I'm waiting on the results. I have such a strange sensation. It feels like I'm bleeding out in my abdomen. A very uncomfortable feeling that leaves me feeling weak. I also have skinny arms and legs but my abdomen is always distended. Thank you for replying !

Just wanted to share my children's symptoms as well. Daughter: colicky, severe constipation, would choke a lot on her bottle, couldn't sleep ( also has issues transitioning to sleep. Once I started having hyperventilation/ being woken up feeling like my heart stopped I realized that maybe this is what my kids were feeling too) Night terrors, livedo reticularis, pernio on toes, nausea, headaches, dizzy/lightneadness, heart rate increase on standing, burning legs up the stairs, blue sclera, can't walk long distance at all, exercise intolerance son: (10) hypotonia, flat feet, exercise intolerance, he gets very itchy when he exercises, he had 2 episodes of "hyperventilation" at 7 and at 10 Dr said panic attack I never believed it. The episode when he was 10 happened on a hot day He went walking with my husband then spent the day in a heated pool It took over a week for the weakness to go away. He sweats when he sleeps He also choked on the bottle a lot and was colicky Again, he would cry after 40 minutes of sleep. He also has tics

This is going to be a long post. I'm sorry but I beg you to bear with me because I need help. I'm 37 years old. I always remember having autonomic issues. I remember my legs feeling heavy on long walks. I remember not being able to nap Bc every time I would drift to sleep my heart would race. I also flushed a lot and would get overheated very easily. When I was a teenager my legs started to burn going up the stairs. I also found blow drying my hair was exhausting. My arms would fatigue so easily. Yet I loved sports. I loved gym class and was very competitive. It was endurance like running the mile in gym class that would do me in. Short bursts I was ok with. I always felt fatigued though. I never thought anything of it because to me it was my normal. Also during my teen years I would feeling fainting after getting up from bed. Again I was used to this feeling so just put up with it. All this to say I pushed through and never felt debilitated until this past year. However the past 7-8 years I went to the ER numerous times because as I drifted to sleep I would wake up hyperventilating, extreme weakness and would collapse on the floor. I had 2 sleep studies. They caught the episode but said it wasn't related to apnea. It only happens when I transition to sleep but so debilitating. This was my most pressing concern until this past year. Last March I started an exercise program with my friend. I remember feeling a lot of pain afterward. Like extremely sore. I also had a cold, but it was minor. Anyway, I was doing well and happy. One morning that week I woke up and told my husband I feel so weak I can't even stand up. So I just say on the couch and he made me breakfast. Within half hour I felt a surge. All of a sudden my heart started beating fast, hands tingling, extreme shortness of breath. I went to ER. Because it was covid I was left in the room a long time struggling to breathe. They did chest X-ray and sent me home saying I was nervous about the pandemic. It took me 2 weeks to get back to somewhat normal. In those two weeks my body would feel like it was hyperventilating with any activity. Then end of April, I started having tachycardia at night. Every time I drifted to sleep as well I would wake up with tachycardia. I was hot and had an ache behind my left shoulder blade. This started one of the most difficult years of my life. My d d-dimer was elevated. I had head to toe CT scan. No clot. Bloodwork only low CO2 and slightly elevated anion gap. I was so weak. A year of weakness. Hyperventilation. Extreme lightheadedness even laying down. Nauseous. Suffocating feeling at rest. Legs and arms that felt like jello. Absolute h***. I read somewhere here about some trying salt water and it helping. I did that. 2 bottles of water each day with salt water. That suffocating feeling went away and my arms and legs did not feel like jello. I'm still left with fatigue and debilitating lightheadedness. It feels like someone has their hand around the blood vessels behind my neck and is squeezing. Even when I lay down it takes a couple of hours for that sensation to go away. My blood pressure can be normal and I still have this feeling. I will post a separate topic about my kids because they have a lot of issues too. Can someone help me. I think I had POTS since I was a child. My daughter is 9 and showing symptoms. In fact they did a "tilt test" in doctors office and her heart rate increased 40 bpm. How can I get a hold on this lightheadedness. They did CT scan Head to toe Bc my d dimer was elevated. No clot. They did brain MRA. Cardiac MRI nothing. I'm lost.