Thanks for what you are doing. I have had on and off symptoms for about 2 decades and was recently diagnosed. I am so amazed by the lack of knowledge on the part of Doctors that I have been to. There is little support in the Atlanta area, so I’m thankful for people like you that are willing to share their knowledge. Thanks again 🙏🏾
Thank you so much for this video I have been living with dysautonomia syndrome probably since I was 13 years old. I am now 55 a nurse and feel like no one hears me. Been through everything you described since a very young age. You helped me because I am very discouraged I am LPN in long term care and want to continue but don't see that happened have had many doctors say it is in my head since a child. Loved your openedness
I am so happy to hear that my video helped. I know exactly what you mean by feeling like you are not being heard. I felt like that for so many years until I finally took control and told doctors tests I wanted done and would try to explain symptoms with as much detail as possible. We are lucky that we are medical professionals and understand more then the normal patient so we have a little bit more pull in getting things done but this is also a reason why I wanted to start this channel. To help others understand what they are feeling and explain it that way they have the courage to be more assertive with doctors when asking for tests, answers etc.
Thank you for sharing you story! My daughter Patricia just turned 48 this month and she was diagnosed with dysautonomia back in March 2018. She's having a very bad day today. They doctor's haven't helped her either. She has a full time job, but is thinking about going on disability soon. God Bless You!
I’m sorry to hear that your daughter is having a rough time. She will learn that you can have good days and bad days. Sometimes the bad ones can last awhile. But if she is having more bad days then good she may be eligible for disability. It took me a few years to be eligible for disability. If she really thinks she can no longer work I recommend getting started on the disability soon. It’s a long lengthy process and almost everyone (even with different medical issues) are denied the first time around. I hired a disability lawyer to make the process easier. I wish her all the best! 🌹
I’ve had Dysautonomia over 30 years, finally diagnosed in 2019. Became disabled in 2020. I to have had suicidal ideation. I am a healthcare professional, I did go back 2 hours twice a week. It’s hard but makes me feel productive. Such a horrible syndrome and so invisible.
It’s important to do things that make us feel “normal” and if you are lucky enough to be able to work a little that’s amazing! I wish you all the best!
Wow, this is my when life. I have not had as many surgery's.. but I love the way you explain that the reason we are not terminal is because our system sends the wrong message everywhere.
Thank you for this video and sharing your story! . I’ve only had dysautonomia for 4 years but it started with CRPS from an injury. I had to have a picc line in for 2 yrs to keep me alive & they just removed it a few months ago. I am really struggling are there any new healing modalities for this?
I was 10, my first time I fainted, I fainted 4-5 times a day. They said I had asthma. Mine came out of remission in 2020. We definitely should talk. I saw 14 cardiologists before there was one that would do the tilt table. Finally someone like me.
Wow! I am shocked that they thought your symptoms were attributed to asthma! I am sorry to hear that you came out of remission. Unfortunately, this syndrome never really stays away for good. I have been very ill recently and unable to do another video but I am going to try my best to do one today or tomorrow to update everyone on what’s been going on with me. Please feel free to add me on Facebook (Lisa Abbas). Stay strong 💪🏼
thank you xxx could i ask about your sleep and adrenal surges i cannot get out of bed . BTW mine started with a miscarrage that kicked it off before that i was very active, I am 59 now and nothing has improved plus i to have been told i was a hypochondriac. blessings and best wishes to you and your family
I am so sorry about your miscarriage. Sleep is horrible unfortunately. I take Trazadone 100mg and melatonin now and that has been helping me stay asleep. As for adrenal surges I honestly don’t think I have experienced that. Unfortunately I bet that everyone with dysautonomia has been told they are a hypochondriac at some point. It’s very frustrating! Many blessings to you and your family as will! Stay strong 💪🏼
You have really been put through the ringer because of Dysautonomia. I’ve had it for over 25 years; hard to say when the first symptoms appeared. Disabled since 1999. May I ask where you live? God speed.
Took 6 years to get diagnosed and unfortunately I have a very severe case but I try to take it in stride. I am originally from NYC been living in FL for 6 years now.
@@lifewithdysautonomia360 I live in Riverview - near Tampa. Terrible environment for our syndrome. BTW: Nuclear PET scanning shows my brain is sending the signals, but there is nearly complete sympathetic and parasympathetic denervation.
Very useful information thank you very much
Thanks for what you are doing. I have had on and off symptoms for about 2 decades and was recently diagnosed. I am so amazed by the lack of knowledge on the part of Doctors that I have been to. There is little support in the Atlanta area, so I’m thankful for people like you that are willing to share their knowledge. Thanks again 🙏🏾
Thank you so much for this video I have been living with dysautonomia syndrome probably since I was 13 years old. I am now 55 a nurse and feel like no one hears me. Been through everything you described since a very young age. You helped me because I am very discouraged I am LPN in long term care and want to continue but don't see that happened have had many doctors say it is in my head since a child. Loved your openedness
I am so happy to hear that my video helped. I know exactly what you mean by feeling like you are not being heard. I felt like that for so many years until I finally took control and told doctors tests I wanted done and would try to explain symptoms with as much detail as possible. We are lucky that we are medical professionals and understand more then the normal patient so we have a little bit more pull in getting things done but this is also a reason why I wanted to start this channel. To help others understand what they are feeling and explain it that way they have the courage to be more assertive with doctors when asking for tests, answers etc.
Thank you for sharing you story! My daughter Patricia just turned 48 this month and she was diagnosed with dysautonomia back in March 2018. She's having a very bad day today. They doctor's haven't helped her either. She has a full time job, but is thinking about going on disability soon. God Bless You!
I’m sorry to hear that your daughter is having a rough time. She will learn that you can have good days and bad days. Sometimes the bad ones can last awhile. But if she is having more bad days then good she may be eligible for disability. It took me a few years to be eligible for disability. If she really thinks she can no longer work I recommend getting started on the disability soon. It’s a long lengthy process and almost everyone (even with different medical issues) are denied the first time around. I hired a disability lawyer to make the process easier. I wish her all the best! 🌹
God bless you Lisa !!! You are always in my prayers !!!
Thank you so much! 😘 Love you girl!
I’ve had Dysautonomia over 30 years, finally diagnosed in 2019. Became disabled in 2020. I to have had suicidal ideation. I am a healthcare professional, I did go back 2 hours twice a week. It’s hard but makes me feel productive. Such a horrible syndrome and so invisible.
It’s important to do things that make us feel “normal” and if you are lucky enough to be able to work a little that’s amazing! I wish you all the best!
Wow, this is my when life. I have not had as many surgery's.. but I love the way you explain that the reason we are not terminal is because our system sends the wrong message everywhere.
I am glad to know that my video and explanations helped you! I wish you the best!
A lot of great information! Thank you
GREAT JOB Lis!!!!!! You’re a natural- I’m so proud of you!
Thank you sweetie! ❤️ miss you!
Miss you so much!
We all have a purpose in our lives. God has a plan for you. I pray that God continues to bless you with many more years without these bad symptoms. 🙏
Thank you so much! God willing I hope I will have many more years! 🙏🏼
Thank you for this video and sharing your story! . I’ve only had dysautonomia for 4 years but it started with CRPS from an injury. I had to have a picc line in for 2 yrs to keep me alive & they just removed it a few months ago. I am really struggling are there any new healing modalities for this?
I was 10, my first time I fainted, I fainted 4-5 times a day. They said I had asthma. Mine came out of remission in 2020. We definitely should talk. I saw 14 cardiologists before there was one that would do the tilt table. Finally someone like me.
Wow! I am shocked that they thought your symptoms were attributed to asthma! I am sorry to hear that you came out of remission. Unfortunately, this syndrome never really stays away for good. I have been very ill recently and unable to do another video but I am going to try my best to do one today or tomorrow to update everyone on what’s been going on with me. Please feel free to add me on Facebook (Lisa Abbas). Stay strong 💪🏼
Have you done research on Mary Ruddick? I think her information can help!
No I haven’t but I will definitely look her up! Thank you!!
thank you xxx could i ask about your sleep and adrenal surges i cannot get out of bed . BTW mine started with a miscarrage that kicked it off before that i was very active, I am 59 now and nothing has improved plus i to have been told i was a hypochondriac. blessings and best wishes to you and your family
I am so sorry about your miscarriage. Sleep is horrible unfortunately. I take Trazadone 100mg and melatonin now and that has been helping me stay asleep. As for adrenal surges I honestly don’t think I have experienced that. Unfortunately I bet that everyone with dysautonomia has been told they are a hypochondriac at some point. It’s very frustrating! Many blessings to you and your family as will! Stay strong 💪🏼
You have really been put through the ringer because of Dysautonomia. I’ve had it for over 25 years; hard to say when the first symptoms appeared. Disabled since 1999. May I ask where you live? God speed.
Took 6 years to get diagnosed and unfortunately I have a very severe case but I try to take it in stride. I am originally from NYC been living in FL for 6 years now.
@@lifewithdysautonomia360 I live in Riverview - near Tampa. Terrible environment for our syndrome. BTW: Nuclear PET scanning shows my brain is sending the signals, but there is nearly complete sympathetic and parasympathetic denervation.
Very interesting! I know that brain fog can be seen on CT scans! And yes this heat kills me!!!