After being told I was "just experiencing anxiety" and other incorrect explanations- countless ambulance trips to the ER- 2 EP studies- endoscopies- countless medications that made my cardiac sypmptoms worse...I finally get diagnosed with the NCS form of Dysautonomia that is very cardiac specific. I discovered dinet.org, and found a Dystautonmia specialist in the area I- I've probably spent close to $100K on medical BS over my lifetime. THANK YOU so much for taking the time to make this video!
I am from Australia and the Dr's here are so ill educated about this too. My boys and I (one of which has POTS smptoms at age 8) too do not do well on meds and find that trusting that everything will be OK, no matter where this belief comes from for different people, is Key to this.
Hope you continue to do well with the symptoms you have.
And I so agree with Jeff's statement about not laying in bed during these illnesses. Best thing is to just get back to doing what you did before. Keep the body strong. I wake up with a dose of prednisone and a high protein shake, lots of fruits and vegetables for lunch, multivitamins, and a large juicy protein bound steak for dinner and lots of excercise. As a result of excercise, I'm regaining some my strength and coordination. I'm in my initial flare up and hope I can continue what I'm doing.
I know what U mean about the medical community's ignorance of this and other autoimmuned disorders. I was recently diagnosed with pemphigus vulgaris which is even more rare than disautonomia. When I mentioned it to my doctor, he hadn't a clue. Pemphigus is so rare, it affects less than 1% of the population. Fortunately it's not a diasability disease, just mouth ulcers, loss of 50+ pounds, loss of strength and coordination. Happy to say, I'm back in the gym and getting back to health YYYay.
Dysautonomia is so much more common than people think. If only the doctors knew that. Because I've struggled with a heart condition my whole life, and now Dysautonomia for the past 3 years, I've devoted myself to becoming a Pediatric Cardiologist and helping this condition get in a freaking medical journal. It's not well known at ALL. My mom also wants to open a physical therapy clinic that focuses on a recovery for Dysautonomia patients. Sorry for your loss, Jeff.
I was prescribed Midodrine, but because I have both OH and POTS, my own unique form of Dysautonomia, per the docs at Mayo, my cardiologist here was worried about me taking it, so I take Vyvanse instead, which only rises my blood pressure slightly.
I will miss the radiance that Brittany exuded, and am sorry for your loss. Your discussion/tribute was well presented. D'xed w/ dysautonomia/POTS/Ehlers Danlos, a collagen disorder, I've had pneumonias, bronchitis, atyp. asthma, sinus tach etc. Tonight, I watched "Uptown Girls & noticed stark hypermobility in Brittany's joints; seeing her "W-sit" in a scene blew my mind (this is an EDS feature); a google search led me here; is EDS hypermobility possible in the family? Thanks for yr. courage.
I was diagnosed with dysautonomia two years ago and like yourself before hand was told i was bi polar, fibro myalgia, and one doctor had the nerve to tell me i was an over sensitive female and was making myself pass out for attention. The day i was diagnosed i burst into tears, not because i had this terrible thing but because i finally had an answer. meds are not working so im gonna have faith and do what you say has helped you. Im so sorry for your loss but many thanks for making this video.
I'm so sorry to hear about your sister's death from (probable) Dysautonomia. Thank you for sharing your thoughts on this very hard and disabling condition. I suffer from it as well and totally agree with you about the whole "not laying in bed thing." I've been to Mayo Clinic to confirm the diagnosis--and they most simple and effective advice they gave me was drinking tons of water and exercising daily.
@thegirlfromtheghetto - The Cleveland Clinic diagnosed me with POTs and NCS and I was told the same thing- drink lots of water (actually gatorade), elevate my bed 6 inches at the head, and exercise my legs. Nothing has made a dramatic impact. My new doc thinks I should go to the Mayo Clinic for a second opinion and hopefully some fix. Were you prescribed anything? Beta blockers I'm told will help minimally.
Very touching story. I have Dysautinomia also i is very difficult to deal with daily . but I always try to remember a qoute when I feel bad. " God would never put an obsticle in front of our path we could not overcome."I love tos story thanks for sharing!
I had no idea that your sister had dysautonomia..I was shocked to hear of her sudden death months ago..I believe the medical world should wake up and acknowledge/educate themselves on the subject more..My daughter and I have it and she couldn't finish her senior year due to severe nausea. The school acted as if her medical excuses were a hoax even tho they were written by her cardiologist. God bless you and your family!!!! :)
Jeff- Thank you so so much for posting this. a friend of a friend of mine had his first kiss with her in a play when she lived back in Edison, my condolences to you and your family. The world lost such a beautiful soul. And I use her joie de vivre everyday in my own life.
This is really wonderful!! The music is beautiful and it's such an important message. Loved this and it's so good that perhaps people will be helped by it.
I am sorry for ur loss. I sent my other post bc on the video u said no meds worked for u.I'm hoping that the TransDerm Scope patch will work for u also.
I have dysautonomia.I started passing out 15yrs ago..About 2 years ago I thought that I was going to die. I was bed ridden for several weeks and if I got up I would just black out. Meds wre not working AT AL!!! II am on transderm scope now. I wear a patch every day. I can not even walk around or be in a car without it.Maybe this will give hope to someone. Try this patch.
Amen Brotha! Thank you for bringing this public. May Brittany's death not be in vain. When the news reported about her death and the symptoms she was having, i said, "OMG, did she have dysautonomia?" Everything you describe about it is SO true. Having been diagnosed in 2000 after 2 years of crazy testing and most of my life with symptoms, it is good to hear that there is a voice out there people may actually listen to.
I was very sorry to hear about your sister Brittany's passing. I pray that with time, your hearts will heal more but memories of her
I've been diagnosed with Dysautonomia for 5 years now. You described it perfectly, especially when it comes to the medical community! A group of friends and myself have started a channel for dysautonomia awareness/advice and support called 5awesomePOTSies on youtube because we want to help others who are struggling with this little understood health condition.
My friends are also displeased! imagine who was the family or knew?Very sad! Brittany was an ANGEL! Believe! My condolences to thank all her family! I love you Brittany .. never forget you! Thank you for making me laugh, cry, emotion in his films! It was a pleasure to have known you (as an actress)! You were the best of the best actresses!I LOVE YOU!R.I.P Brittany!
Interesting video, I'm a fan of Brittany as a child, to be more exact, was in the movie "Clueless "!*-*
I did not know Brittany personally (unfortunately), but I know she was an ANGEL! That's one thing you noticed far from easy to see people like her! I can not believe she died! I'm sad today! It would seem that I lost someone in my family, I watch her movies and I cry too!
I'm a HUGE fan of Britt, since 2003. To me, she was like a sister/cousin. I was shocked by her death. And I also think that Sharon (what kind of mother was that?) and SM had a lot to do with it. I hope they pay.
My condolences go to all of the Bertolotti family because you truly cared about Britt. She will always be in your hearts and in our (TRULY BRITT FANS) hearts too.
I am 20 years old and just diagnosed with dysautonomia (POTS). I have found little relief in the medications, but have been so encouraged through my faith in Christ. It is so good to hear that you are pushing forward with faith and trust. My best wishes to you and your family.
Thank you for sharing your story. Pnuemonia is one of the number one causes of death with neurological symptoms and diseases. One of the things I decided to do was to plan my own funeral so my loved ones are not under too much pressure. I long for this disease to be understood. Thanks for your input andmay God bless your walk with him. ~ love SamiBebe2
Jeff- Thank you very much for this video. I was recently diagnosed with dysautonomia and was lucky to have it diagnosed in 8 months instead of the many years that many sufferers have to go through before getting a diagnosis. I am very sorry for your loss and am glad your faith can help you get through both the pain of losing a little sister and the challenges of dysautonomia.
When I heard of Brittany's death, the 1st thing I thought of was "ok, maybe I was right to be scared when I have my "episodes"." I never dreamed that she suffered from POTS and this was really the cause of her death. I guess I'm just so used to being dismissed. You describe it perfectly when you say how doctors react when you go to them w/Dysautonomia symptoms, it's ridiculous. I'm sad she had to die (really hit home for me, I am 32 y.o. as well) but w/this video maybe it's not for naught...
Thank you for your email. Brittany died from pneumonia. I do however believe she was dealing with Dysautonomia from conversations I have had with her in reference to daily symptoms she was dealing with at that time. What kind of Dysautonomia? we will never know.
Fear will allow this illness to flourish. Have Faith that you will be OK, it will allow your body to cope better with this, and maybe even allow your body to heal in time. Don't let fear rule your experience.
@YouTubeJen I have dysautonomia and no information in Spanish, I know you've madevideos for Latin people, please talk about this, is so difficult, because in Mexico they treat us like something that you have to get used and not something that should be followed up doctor. I'm using the google translator to communicate with you, I am taking to Congress a citizen called socially invisible, talks about all these diseases that make us put ourselves in a dilemma that not everyone understands
I'm so very sorry for your loss. I have honestly never felt much for "celebrity" deaths but this one crushed me. Maybe it was because we were the same age. Maybe it was because she was so talented in so many ways.
I don't know.
All I know is that it was a devastating loss for entertainment and the world in general.
I can't express in words how bad I feel for the Bertolotti's.
theres so many people out there becoming or waiting to be diagnosed with dysautonomia that I find it sad and disgusting how little the medical world knows about this illness... and some that have never even heard of it!
I have dysautonomia as well. It's a horrible disease, that stripped away everything that i considered me. I am so sorry for your loss, Brittany was an amazing actress, I wish i would have known her personally. Now hearing that she may have POTS, its just...it makes everything change. I really hope the medical world will wake up and take notice. people need to know, it took 4 1/2 yrs to get a diagnosis for myself. I hope the best for you and your family, and know that a lot of people care :)
Very well said. Agree wholeheartedly.
zen242 2 days ago
After being told I was "just experiencing anxiety" and other incorrect explanations- countless ambulance trips to the ER- 2 EP studies- endoscopies- countless medications that made my cardiac sypmptoms worse...I finally get diagnosed with the NCS form of Dysautonomia that is very cardiac specific. I discovered dinet.org, and found a Dystautonmia specialist in the area I- I've probably spent close to $100K on medical BS over my lifetime. THANK YOU so much for taking the time to make this video!
shazam779 4 weeks ago
Hey Jeff,
Great honest vidio.
I am so sorry for your sisters loss.
I am from Australia and the Dr's here are so ill educated about this too. My boys and I (one of which has POTS smptoms at age 8) too do not do well on meds and find that trusting that everything will be OK, no matter where this belief comes from for different people, is Key to this.
Hope you continue to do well with the symptoms you have.
Blessings
NJSMKMMS 3 months ago
I am convinced that now Brittany is watching us from up there... She is an Angel!!!! thanks for this valuable evidence Jeff !!!!!
ilTubodiGe 6 months ago
And I so agree with Jeff's statement about not laying in bed during these illnesses. Best thing is to just get back to doing what you did before. Keep the body strong. I wake up with a dose of prednisone and a high protein shake, lots of fruits and vegetables for lunch, multivitamins, and a large juicy protein bound steak for dinner and lots of excercise. As a result of excercise, I'm regaining some my strength and coordination. I'm in my initial flare up and hope I can continue what I'm doing.
hotathlete2 8 months ago
I know what U mean about the medical community's ignorance of this and other autoimmuned disorders. I was recently diagnosed with pemphigus vulgaris which is even more rare than disautonomia. When I mentioned it to my doctor, he hadn't a clue. Pemphigus is so rare, it affects less than 1% of the population. Fortunately it's not a diasability disease, just mouth ulcers, loss of 50+ pounds, loss of strength and coordination. Happy to say, I'm back in the gym and getting back to health YYYay.
hotathlete2 8 months ago
my wifes pots was caused by wheat allergy!! we fixed it!!
mikeer222 9 months ago 2
Dysautonomia is so much more common than people think. If only the doctors knew that. Because I've struggled with a heart condition my whole life, and now Dysautonomia for the past 3 years, I've devoted myself to becoming a Pediatric Cardiologist and helping this condition get in a freaking medical journal. It's not well known at ALL. My mom also wants to open a physical therapy clinic that focuses on a recovery for Dysautonomia patients. Sorry for your loss, Jeff.
jrdfreckles11 9 months ago
I was prescribed Midodrine, but because I have both OH and POTS, my own unique form of Dysautonomia, per the docs at Mayo, my cardiologist here was worried about me taking it, so I take Vyvanse instead, which only rises my blood pressure slightly.
thegirlfromtheghetto 11 months ago
Comment removed
oriabluemusic 1 year ago
I will miss the radiance that Brittany exuded, and am sorry for your loss. Your discussion/tribute was well presented. D'xed w/ dysautonomia/POTS/Ehlers Danlos, a collagen disorder, I've had pneumonias, bronchitis, atyp. asthma, sinus tach etc. Tonight, I watched "Uptown Girls & noticed stark hypermobility in Brittany's joints; seeing her "W-sit" in a scene blew my mind (this is an EDS feature); a google search led me here; is EDS hypermobility possible in the family? Thanks for yr. courage.
oriabluemusic 1 year ago
Comment removed
oriabluemusic 1 year ago
I was diagnosed with dysautonomia two years ago and like yourself before hand was told i was bi polar, fibro myalgia, and one doctor had the nerve to tell me i was an over sensitive female and was making myself pass out for attention. The day i was diagnosed i burst into tears, not because i had this terrible thing but because i finally had an answer. meds are not working so im gonna have faith and do what you say has helped you. Im so sorry for your loss but many thanks for making this video.
Hhotmama26 1 year ago
Comment removed
thegirlfromtheghetto 1 year ago
Comment removed
thegirlfromtheghetto 1 year ago
I'm so sorry to hear about your sister's death from (probable) Dysautonomia. Thank you for sharing your thoughts on this very hard and disabling condition. I suffer from it as well and totally agree with you about the whole "not laying in bed thing." I've been to Mayo Clinic to confirm the diagnosis--and they most simple and effective advice they gave me was drinking tons of water and exercising daily.
thegirlfromtheghetto 1 year ago
@thegirlfromtheghetto - The Cleveland Clinic diagnosed me with POTs and NCS and I was told the same thing- drink lots of water (actually gatorade), elevate my bed 6 inches at the head, and exercise my legs. Nothing has made a dramatic impact. My new doc thinks I should go to the Mayo Clinic for a second opinion and hopefully some fix. Were you prescribed anything? Beta blockers I'm told will help minimally.
CapitalStar 11 months ago
RIP Brittany, sorry for your loss Jeff. Thank you for this video and the message of hope it contains. Take care.
bodycrying 1 year ago
Very touching story. I have Dysautinomia also i is very difficult to deal with daily . but I always try to remember a qoute when I feel bad. " God would never put an obsticle in front of our path we could not overcome."I love tos story thanks for sharing!
-Nicole
photographer456 1 year ago
Your very welcome...
JeffBertolotti 1 year ago
@JeffBertolotti
I had no idea that your sister had dysautonomia..I was shocked to hear of her sudden death months ago..I believe the medical world should wake up and acknowledge/educate themselves on the subject more..My daughter and I have it and she couldn't finish her senior year due to severe nausea. The school acted as if her medical excuses were a hoax even tho they were written by her cardiologist. God bless you and your family!!!! :)
joyceyrose 1 year ago
Jeff- Thank you so so much for posting this. a friend of a friend of mine had his first kiss with her in a play when she lived back in Edison, my condolences to you and your family. The world lost such a beautiful soul. And I use her joie de vivre everyday in my own life.
GiaMarieCarangi 1 year ago
This is really wonderful!! The music is beautiful and it's such an important message. Loved this and it's so good that perhaps people will be helped by it.
Thanks for making it!!
eeor123 1 year ago
I am sorry for ur loss. I sent my other post bc on the video u said no meds worked for u.I'm hoping that the TransDerm Scope patch will work for u also.
jackiegerst11 1 year ago
I have dysautonomia.I started passing out 15yrs ago..About 2 years ago I thought that I was going to die. I was bed ridden for several weeks and if I got up I would just black out. Meds wre not working AT AL!!! II am on transderm scope now. I wear a patch every day. I can not even walk around or be in a car without it.Maybe this will give hope to someone. Try this patch.
jackiegerst11 1 year ago
Amen Brotha! Thank you for bringing this public. May Brittany's death not be in vain. When the news reported about her death and the symptoms she was having, i said, "OMG, did she have dysautonomia?" Everything you describe about it is SO true. Having been diagnosed in 2000 after 2 years of crazy testing and most of my life with symptoms, it is good to hear that there is a voice out there people may actually listen to.
lisadelivers 1 year ago
So sad! I did not believe when I learnt about her death! I loved all those movies she had performed.
♥ R.I.P Brittany. ♥
acristina155 1 year ago
I was very sorry to hear about your sister Brittany's passing. I pray that with time, your hearts will heal more but memories of her
I've been diagnosed with Dysautonomia for 5 years now. You described it perfectly, especially when it comes to the medical community! A group of friends and myself have started a channel for dysautonomia awareness/advice and support called 5awesomePOTSies on youtube because we want to help others who are struggling with this little understood health condition.
TheDysautonomiaGirl 1 year ago
Brittany ♥♥♥♥♥♥♥♥
Cute pictures!!!*--*
Brittany soooooooo cuteeee!!!♥♥♥♥ *--*
pittypunkrock133 1 year ago
My friends are also displeased! imagine who was the family or knew?Very sad! Brittany was an ANGEL! Believe! My condolences to thank all her family! I love you Brittany .. never forget you! Thank you for making me laugh, cry, emotion in his films! It was a pleasure to have known you (as an actress)! You were the best of the best actresses!I LOVE YOU!R.I.P Brittany!
pittypunkrock133 1 year ago
R.I.P Brittany(ANGEL) :(
pittypunkrock133 1 year ago
Interesting video, I'm a fan of Brittany as a child, to be more exact, was in the movie "Clueless "!*-*
I did not know Brittany personally (unfortunately), but I know she was an ANGEL! That's one thing you noticed far from easy to see people like her! I can not believe she died! I'm sad today! It would seem that I lost someone in my family, I watch her movies and I cry too!
pittypunkrock133 1 year ago
Jeff and all the Bertolotti family,
I'm a HUGE fan of Britt, since 2003. To me, she was like a sister/cousin. I was shocked by her death. And I also think that Sharon (what kind of mother was that?) and SM had a lot to do with it. I hope they pay.
My condolences go to all of the Bertolotti family because you truly cared about Britt. She will always be in your hearts and in our (TRULY BRITT FANS) hearts too.
pirateslife44me 1 year ago
I am 20 years old and just diagnosed with dysautonomia (POTS). I have found little relief in the medications, but have been so encouraged through my faith in Christ. It is so good to hear that you are pushing forward with faith and trust. My best wishes to you and your family.
BToffolon89 1 year ago
Thank you for sharing your story. Pnuemonia is one of the number one causes of death with neurological symptoms and diseases. One of the things I decided to do was to plan my own funeral so my loved ones are not under too much pressure. I long for this disease to be understood. Thanks for your input andmay God bless your walk with him. ~ love SamiBebe2
SamiBebe2 2 years ago
Jeff- Thank you very much for this video. I was recently diagnosed with dysautonomia and was lucky to have it diagnosed in 8 months instead of the many years that many sufferers have to go through before getting a diagnosis. I am very sorry for your loss and am glad your faith can help you get through both the pain of losing a little sister and the challenges of dysautonomia.
bether76 2 years ago
When I heard of Brittany's death, the 1st thing I thought of was "ok, maybe I was right to be scared when I have my "episodes"." I never dreamed that she suffered from POTS and this was really the cause of her death. I guess I'm just so used to being dismissed. You describe it perfectly when you say how doctors react when you go to them w/Dysautonomia symptoms, it's ridiculous. I'm sad she had to die (really hit home for me, I am 32 y.o. as well) but w/this video maybe it's not for naught...
YouTubeJen 2 years ago
Thank you for your email. Brittany died from pneumonia. I do however believe she was dealing with Dysautonomia from conversations I have had with her in reference to daily symptoms she was dealing with at that time. What kind of Dysautonomia? we will never know.
JeffBertolotti 2 years ago
Fear will allow this illness to flourish. Have Faith that you will be OK, it will allow your body to cope better with this, and maybe even allow your body to heal in time. Don't let fear rule your experience.
JeffBertolotti 2 years ago 2
@YouTubeJen I have dysautonomia and no information in Spanish, I know you've madevideos for Latin people, please talk about this, is so difficult, because in Mexico they treat us like something that you have to get used and not something that should be followed up doctor. I'm using the google translator to communicate with you, I am taking to Congress a citizen called socially invisible, talks about all these diseases that make us put ourselves in a dilemma that not everyone understands
fridakahloapoyomutuo 3 months ago
Comment removed
jessicakarpinski 2 months ago
I'm so very sorry for your loss. I have honestly never felt much for "celebrity" deaths but this one crushed me. Maybe it was because we were the same age. Maybe it was because she was so talented in so many ways.
I don't know.
All I know is that it was a devastating loss for entertainment and the world in general.
I can't express in words how bad I feel for the Bertolotti's.
RIP Britt :-(
mygreen420 2 years ago 2
Please accept my condolences for the loss of your sweet beautiful sister.A lot
of us love her and will never forget her.
SAAB7899 2 years ago
Comment removed
SAAB7899 2 years ago
We need to learn to look beyond the visible in this satanically infiltrated world!
icke11234 2 years ago
This has been flagged as spam show
This explains a lot; I also recommend reading the rest of this blog:
pseudoccultmedia.blogspot.(c o m)/feeds/posts/default
icke11234 2 years ago
theres so many people out there becoming or waiting to be diagnosed with dysautonomia that I find it sad and disgusting how little the medical world knows about this illness... and some that have never even heard of it!
ashpauls 2 years ago
Great vid. Thanks Jeff for the info. Nice to see the Bertolottis side of things.
We'll miss her.
eramfam 2 years ago
I have dysautonomia as well. It's a horrible disease, that stripped away everything that i considered me. I am so sorry for your loss, Brittany was an amazing actress, I wish i would have known her personally. Now hearing that she may have POTS, its just...it makes everything change. I really hope the medical world will wake up and take notice. people need to know, it took 4 1/2 yrs to get a diagnosis for myself. I hope the best for you and your family, and know that a lot of people care :)
stillpressinon 2 years ago 2