I have Vasovagal Syncope,ive been dealing with this since 2015 and i finally had a doctor tell me what it is and whats going on with me. My triggers are heat,stress,lights,crowds,traffic and inused to be able to run 5 miles a day now i can barely walk 1 mile w/o feeling super dizzy. When i tell ive tried everything i tried everything,now im currently on pristiq because of this drove me to depression so this is no joke. Do you have any advice or tips for me?Thank you…
There is a video about triggers and management. I think that may be helpful. The most helpful thing is to know what triggers more intense symptoms and avoid them as much as possible For example, it is very common to be triggered by heat. Most of us can't avoid heat completely. Still, knowing that our symptoms may be more intense, we can prepare by using the a/c, creating shade with umbrellas, wearing hats, and, if you can handle salt, increasing the amount and, above all, hydrate, hydrate, hydrate. Dysautonomia is all about managing our symptoms and finding the best quality of life, which means focusing on what we can still do and not what we used to do. Those comparisons between our healthy selves and our new "normal" can be debilitating. Hang in there; it really does get better over time.
I have Neurocardiogenic Dysautonomia and now have a pacemaker which has helped tremendously. I also am on clonodine patch to regulate BP and klonopin for the horrible anxiety this condition causes. I still have GI and urinary issues and trouble regulating my body temp.
What about Jardiance as a heart failure drug for POTS? I haven’t started it yet, but the insurancecoverage is poor, and I have stamina issues and breathlessness with exercise .
Jardiance is perscribed for heart failure and there has been some documented success. It can be used for people with POTS, however, it is very important that the cardiologist perscribing Jardiance is very well versed in the treatment of POTS. One of the key ways that Jardiance works on heart failure by stopping sodium/glucose proteins from working causing increased urination. While this helps reduce inflammation and water retention around the heart, as well as reducing diabetes symptoms, that loss of fluid in the body needs to be monitored closely in people with POTS since POTS patients dehydrate more easily than people without POTS. And yes, insurance coverage is poor and Jardiance is an expensive medication. Unfortunately, both POTS and heart failure can cause extreme fatigue and breathlessness. Best wishes to you.
@@DysautonomiaInformationNetwork - this is my concern as I am a POTS patient and have cardiomyopathy. Am drinking a lot of water on Jardiance, which is very dehydrating. Not certain my cardiologist is well versed in POTS care. I need to have a discussion with the doctor to fully understand why he wants me on Jardiance and if It is compatible with POTS. Can’t use electrolytes due to high blood pressure.
Very true. That's why we try and point out how important it is to understand that treatments are very specific to each patient because we see this over and over again. Some treatments that work wonderfully for some, are terrible for others. There is not a one size fits all treatment plan for dysautonomia.
I'm sorry but there is only one person in this video and there was only english spoken without an accent. I believe your comment was meant to be posted somewhere else.
Propranolol helped me so much and taking deep breaths when I'm standing up. ♥️
Thank you for sharing with us all. Take care.
Me too. I started with 10mg. Now I'm 10mg twice a day
@@markleonard4452ow’s your standing heart rate while on propranolol?
@@markleonard4452I started on 10mg a day, now I’m on 90 😅
Thank you so much. That's why I got worse on SNRI.
Horrible medication, snri.
Same here.
I have Vasovagal Syncope,ive been dealing with this since 2015 and i finally had a doctor tell me what it is and whats going on with me.
My triggers are heat,stress,lights,crowds,traffic and inused to be able to run 5 miles a day now i can barely walk 1 mile w/o feeling super dizzy.
When i tell ive tried everything i tried everything,now im currently on pristiq because of this drove me to depression so this is no joke.
Do you have any advice or tips for me?Thank you…
There is a video about triggers and management. I think that may be helpful. The most helpful thing is to know what triggers more intense symptoms and avoid them as much as possible For example, it is very common to be triggered by heat. Most of us can't avoid heat completely. Still, knowing that our symptoms may be more intense, we can prepare by using the a/c, creating shade with umbrellas, wearing hats, and, if you can handle salt, increasing the amount and, above all, hydrate, hydrate, hydrate. Dysautonomia is all about managing our symptoms and finding the best quality of life, which means focusing on what we can still do and not what we used to do. Those comparisons between our healthy selves and our new "normal" can be debilitating. Hang in there; it really does get better over time.
@@DysautonomiaInformationNetwork Thank you
Would you be able to do a video on Orthostatic Hypotension? :) I got diagnosed with this, not POTS and now taking Florinef
Great suggestion! Thank you.
what is the difference between orthostatic hypotension and POTS?
This was useful and good way to be accurate. Thx
We are glad it was useful to you. Take care
I have Neurocardiogenic Dysautonomia and now have a pacemaker which has helped tremendously. I also am on clonodine patch to regulate BP and klonopin for the horrible anxiety this condition causes. I still have GI and urinary issues and trouble regulating my body temp.
Thanks so much for sharing. So glad the meds and pacemaker are helping. Best wishes.
Very informative!
Thank you! We are happy you found it helpful.
I am on Bystolic to keep heart rate down.
What about Jardiance as a heart failure drug for POTS? I haven’t started it yet, but the insurancecoverage is poor, and I have stamina issues and breathlessness with exercise .
Jardiance is perscribed for heart failure and there has been some documented success. It can be used for people with POTS, however, it is very important that the cardiologist perscribing Jardiance is very well versed in the treatment of POTS. One of the key ways that Jardiance works on heart failure by stopping sodium/glucose proteins from working causing increased urination. While this helps reduce inflammation and water retention around the heart, as well as reducing diabetes symptoms, that loss of fluid in the body needs to be monitored closely in people with POTS since POTS patients dehydrate more easily than people without POTS. And yes, insurance coverage is poor and Jardiance is an expensive medication. Unfortunately, both POTS and heart failure can cause extreme fatigue and breathlessness. Best wishes to you.
@@DysautonomiaInformationNetwork - this is my concern as I am a POTS patient and have cardiomyopathy. Am drinking a lot of water on Jardiance, which is very dehydrating. Not certain my cardiologist is well versed in POTS care. I need to have a discussion with the doctor to fully understand why he wants me on Jardiance and if It is compatible with POTS. Can’t use electrolytes due to high blood pressure.
Northera/Droxyopa- Neurogenic Orthostatic Hypotension
I've seen studies and heard testimonials that go either way on SSRI's: for some it helped and for some it made it worse
Very true. That's why we try and point out how important it is to understand that treatments are very specific to each patient because we see this over and over again. Some treatments that work wonderfully for some, are terrible for others. There is not a one size fits all treatment plan for dysautonomia.
IV Saline???
Yes, for some people it is required to maintain the right balance of electrolytes and fluids and to help minimize symptoms.
The speaker is so soft spoken and his English so heavily accented, that it was impossible to understand him. A real waste of onfo.
I'm sorry but there is only one person in this video and there was only english spoken without an accent. I believe your comment was meant to be posted somewhere else.
I believe she's referring to the first doctor that spoke. It was hard to hear & understand him.