holy crud! i slur/talk slow too when im having a rough pots day or about to go into a bad attack. thats the big way my husband knows to get a chair under me or prepare to catch me. we didnt know of any one else who did, none of my pots friends know if they do, never been that bad off, i sometimes also cant connect thoughts either. no medications right now, but managing with liquids and elctrolyte tabs.
Thank once again for sharing the good, the bad, and everything in-between. This is very validating and very simular to my medicated and hydrated rates. It's not always about how high the number goes...for my it's the wild swings regardless of the number.
Have you tried physical therapy in a pool? I did full body physical therapy 2 different times in a pool then swam everyday (at 23/24.. 10 years before my POTS diagnosis) and I thought I'd gone into remission for a few years. The compression from the pool seemed to make a huge difference for me until a stopped. I also have neck instability and I'd definitely mention it to see if that could help figure out the headaches and other things that you are dealing with. Thank you for sharing and spreading awareness
It sounds like you may have Craniocervical Instability. Have you been evaluated for that? It took us almost five years to figure out that CCI was the cause of our son’s most debilitating symptoms.
You're an inspiration 😊" I like to punish my body with squats because I'm mad at it" Lol I totally understand. One time at work I was feeling like crap all day. And when I got back to the shop we got a gym there and I'm maxed out on the bench press. Put out 255 like seven times. That was a new record for me at the time.. easy for me to deal with I'm an athlete and I work out like you. Body doesn't want to do the things that used to do easily. Feel like I'm not progressing with bodybuilding and I'm just trying to hold on to stamina and strength.
I occasionally get tinnitus. It can be a symptom of a myriad of other conditions, as well. Spinal fluid leaks can cause this and often mimic POTS. Migraine can also cause tinnitus. Lots of overlap and several possible causes. Worth bringing up to your doctor if it is concerning or quite bothersome.
In Knoxville working to get a dx for my 20 yo son and frustrated. What kind of PT helps with this? Is there a specific certification that they have to be best qualified?
The Heart Watch App on my iPhone and I also use Cardiogram for continuous monitoring. I only really pay attention when I feel really symptomatic and want to keep an eye on it or when I’m exercising.
This is false. It has been scientifically disproven that deconditioning is the cause of POTS. Many POTS patients, myself included, were athletes prior to becoming ill. POTS is triggered by a virus, genetic disorder, or physical trauma to the body like a surgery or concussion. www.ncbi.nlm.nih.gov/pmc/articles/PMC5019095/
Tachycardia causes Headaches. Another symptom to deal with 😒😒😰. I tried PT but it made me worse in my experience 😂. I have learned to Not push my body regardless of what the doctor says 🫢😁.
holy crud! i slur/talk slow too when im having a rough pots day or about to go into a bad attack. thats the big way my husband knows to get a chair under me or prepare to catch me. we didnt know of any one else who did, none of my pots friends know if they do, never been that bad off, i sometimes also cant connect thoughts either. no medications right now, but managing with liquids and elctrolyte tabs.
Thank once again for sharing the good, the bad, and everything in-between. This is very validating and very simular to my medicated and hydrated rates. It's not always about how high the number goes...for my it's the wild swings regardless of the number.
Totally get that. ❤️🩹
I get mad at my body too, and I think “Well, you’re going to hurt whether you exercise or not, so you may as well just go for it.”
Have you tried physical therapy in a pool? I did full body physical therapy 2 different times in a pool then swam everyday (at 23/24.. 10 years before my POTS diagnosis) and I thought I'd gone into remission for a few years. The compression from the pool seemed to make a huge difference for me until a stopped. I also have neck instability and I'd definitely mention it to see if that could help figure out the headaches and other things that you are dealing with. Thank you for sharing and spreading awareness
It sounds like you may have Craniocervical Instability. Have you been evaluated for that? It took us almost five years to figure out that CCI was the cause of our son’s most debilitating symptoms.
You're an inspiration 😊" I like to punish my body with squats because I'm mad at it"
Lol I totally understand. One time at work I was feeling like crap all day. And when I got back to the shop we got a gym there and I'm maxed out on the bench press. Put out 255 like seven times. That was a new record for me at the time.. easy for me to deal with I'm an athlete and I work out like you. Body doesn't want to do the things that used to do easily. Feel like I'm not progressing with bodybuilding and I'm just trying to hold on to stamina and strength.
You are a warrior 🪖!
❤️🩹
Your help 😢
Thank you for sharing.
You bet! Thank you for watching. I hope I help. ❤️🩹
Yes you do help. It’s helps to see That I am not alone in the crazy heart rate and fatigue episodes I get.
Bodyweight full ROM squats are the one thing that has gotten me closest to passing out in PT. HR gets to about 185 and I get near fainting
In the same way with what I have.
Is anyone else with POTS struggling with tinnitus?
I occasionally get tinnitus. It can be a symptom of a myriad of other conditions, as well. Spinal fluid leaks can cause this and often mimic POTS. Migraine can also cause tinnitus. Lots of overlap and several possible causes. Worth bringing up to your doctor if it is concerning or quite bothersome.
Yes I’ve had ringing/buzzing in the ears for years now
My symptoms get worse throughout the day. Is there anything you can tell me to try to help manage the symptoms until I can get back to the doctor
In Knoxville working to get a dx for my 20 yo son and frustrated. What kind of PT helps with this? Is there a specific certification that they have to be best qualified?
The clonidine can definitely makes you sleepy
What are you using to keep track of your heart rate? Something I am looking for.
I use Heart Watch on my iPhone and Cardiogram :)
Hi! What app are you using to record your heartrate? I need this!!!
The Heart Watch App on my iPhone and I also use Cardiogram for continuous monitoring. I only really pay attention when I feel really symptomatic and want to keep an eye on it or when I’m exercising.
❤
Did you have a period of bed rest? Deconditioning is usually the cause of POTS
This is false. It has been scientifically disproven that deconditioning is the cause of POTS. Many POTS patients, myself included, were athletes prior to becoming ill. POTS is triggered by a virus, genetic disorder, or physical trauma to the body like a surgery or concussion. www.ncbi.nlm.nih.gov/pmc/articles/PMC5019095/
Tachycardia causes Headaches. Another symptom to deal with 😒😒😰. I tried PT but it made me worse in my experience 😂. I have learned to Not push my body regardless of what the doctor says 🫢😁.
You know your body. I don’t blame you! You know what your body can take and how it reacts. ❤️🩹
@summerdashenews How r u doing now