What is Dysautonomia? Dysautonomia is dysfunction of the autonomic nervous system. What is the autonomic nervous system? This is a nervous system in the body that controls things you don’t need to think about, like breathing, regulating your heart beat etc.
POTS (Postural Orthostatic Tachycardia Syndrome) defined. Postural, refers to the position that brings change in POTS patients. Orthostatic, caused by the change in an upright posture. Tachycardia, meaning a fast heart beat with 100 beats per minute or higher. Syndrome, a group of symptoms that make up an illness.
Isn’t that a mouth full! Postural orthostatic tachycardia Syndrome (POTS) is an abnormal rise and fall in BP (blood pressure). POTS usually causes tachycardia. For me my POTS can cause my BP to be 161/144 with heart rate of 117, or it can be 80/40 with my heart rate at 120 and higher. This is all caused by me simply standing up.
POTS causes me to experience syncope (syncope means a loss of consciousness aka a black out). When I have a black out, I can not control what my body does. I have blacked out and had a seizer. My body feels weak, and everything literally goes black. When I first started blacking outs it would affect my eyes, my vision would go balcony. I wouldn’t be able to see a thing, but I could hear things going on around me.
Eventually my POTS attacks got so bad I was falling no matter where I am when this happens I fall, if I am feeling a black out episode coming on I will not move. To even out my heart rate I will lay on the floor and elevate my legs up a wall. My BP isn’t usually fixed for 30 minutes to an hour. The racing heart can be heard in my ears, my chest feels as though it may explode, I over heat, I sweat, chest pains worsen, the dizzy spells make it impossible to move.
POTS has caused me to full on bail, this is problematic due to my Ehlers Danlos Syndrome. Falling has caused me to dislocate joints, anything from wrist, knees, fingers, toes, jaw, and other painful dislocations.
Days where I can experience black outs I do no venture out as it is not safe for me to do so. Black out days are spent surrounded by pillows and remaining elevated to prevent catastrophe.
As you can see in the photos my blood pressure is all over the map, this is due to POTS. My POTS doesn’t behave like the typical POTS. My blood pressure changes drastically as does my heart rate.
The usual treatments for POTS are: increasing salt, increasing fluids, electrolyte replacement, calcium channel blockers, beta blockers, compression stockings, and exercises. Avoiding certain things, such as putting your arms above your head, extreme cold or extreme heat. Being immobile can make POTS symptoms worse specially if you have deconditioning POTS. There is hope for getting some quality of life back. This depends on you and keeping up with the things you need to do. Like listening to your doctor, taking your meds and avoiding POTS triggers. Eating smaller meals and having salt with your meals can make a difference in energy. Large meals makes all the blood in your body go to the digestion of your food and in POTS this can cause black outs, at lease in my experience. I can also black out due to stress, standing to fast, getting up from laying, I have sat up and blacked out before.
I may black out often due to something I can’t control. But I can control how I feel mentally. Never give up hope. There is always hope. If you feel alone and you need someone to talk to reach out. POTS isn’t something you face alone.
Things I have done to help my POTS, going for a walk, drinking a lot of water (I find I feel dehydrated all the time), salt (I make my own salt pills with rock salt and veggie capsules). I used to try electrolyte pills, drink Gatorade, take electrolyte drinks, but due to my mast cell disease I started reacting to them.
Remember things can improve, your mentality is key. Stay on the train of positive thoughts!