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MissNikkiAnn
Registrace 8. 09. 2007
MissNikkiAnn chats about life and spreads awareness of rare disorders: Dysautonomia, Multiple System Atrophy (MSA)/Shy Drager, Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, and other Invisible & Chronic Illnesses.
Video
Medtronic Interstim: Interstim Icon/ Model 3037 Patient Programmer
zhlédnutí 335Před 5 lety
Medtronic Interstim: Interstim Icon/ Model 3037 Patient Programmer
@RavenOvah's Refreshing Views on being Transparently Transgender
zhlédnutí 63Před 5 lety
@RavenOvah's Refreshing Views on being Transparently Transgender
Dysautonomia: Port Replacement Surgery and Homeschool
zhlédnutí 35Před 6 lety
Dysautonomia: Port Replacement Surgery and Homeschool
A Dunkin' Donuts Worker Making Nitro: Live Footage by MissNikkiAnn
zhlédnutí 828Před 7 lety
A Dunkin' Donuts Worker Making Nitro: Live Footage by MissNikkiAnn
MissNikkiAnn Does More Than Dysautonomia Vlogging
zhlédnutí 55Před 7 lety
MissNikkiAnn Does More Than Dysautonomia Vlogging
Patreon: Copper "African" Americans Are Not From Africa
zhlédnutí 29Před 7 lety
Patreon: Copper "African" Americans Are Not From Africa
thank you for your wisdom and experience, it's definitely going to help with my own dysautonomia journey. it's been like a circus so far with the doctors so, i appreciate what you said
How are you now??i hope you are fine .thanks
Hey I know this has been a long time and I trust you are feeling better and doing well. I had TIA on Nov 24, 2020. I am 42 years old and this is the first time this ever happened to me, it is one of the scariest moments of my life, I was rushed to the ER and tons of exams was done, mri confirmed that I had suffered three strokes which I was not aware off, however they did not find the cause of it, this has left me more confused. My greatest challenge here is the post stroke symptoms, I have not been myself ever since this happened, I am severely fatigued, low pressure, rapid heart beat, headaches and just a general feelings of being unwell. I never had any underlying problems prior to this attack, never had diabetes or high pressure. They put me on aspirin and satin because according to them my cholesterol is a bit high. But guys these after attack symptoms are killing me, can anyone relate? How long will this weird symptoms disappear, I missed being and feeling my normal self, right now I feel like a monster has enter in my body, I feel my brain vibrate and I can't think straight. It is a feeling that is just hard to explain. Grateful for any tip or if anyone can relate.
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I am so sorry about your keloids. Also I have dysautonomia now for 18 years and just now have found a Dr that knows something to help me, so I am starting infusions with Rituxin. It is really helpful to see others that have something similar, means I am not alone, thanks for making videos.
Is this served with no sugar?
They no longer offer the Nitro. At the time of the video, it was not served with sugar,
Hi, are you cured?
I'm alive. Think on it...😊
Goe bless You! @@missnikkiann
wow..how could you laugh...I had this for 4 years and can not smile its very painful vomiting nauseous... diarhea constipation sulphur burping...make a video flaring up ..so ppl will know how this really feel for us ppl with GP
how many cups of water In each one? Is it possible to put too much water up your colon? How long do you leave it in there before expelling?
Such beautiful messages!!!♡♡♡ Love to you!!♡♡♡♡♡♡♡♡ Thank you for shareing! I need the dark and everything else too.... I don't feel so alone after listening to your beautiful personality and intellect!♡♡♡♡♡♡♡♡♡♡♡♡ Nameste♡
You are so wise!♡ Love to you!!!♡♡♡♡♡ I hope you are OK!♡♡♡ I KNOW IT IS AUGUST OF 2019 NOW! But how are you now luv? I pray you are well and surrounded by love!!!♡♡♡♡♡♡♡♡♡♡♡ Nameste♡
Dear one, you are so honestly beautiful!!! I can't sit for two hours without an attack, usually!!! I understand ALL you say!!! Thank you for sharing!!! I don't feel so SO SO alone!!! I am all alone. Love love love you!!!♡♡♡♡♡♡ Nameste!!!♡♡♡♡♡♡♡♡♡♡♡
Beautiful video!!! Beautiful singing, Poetry and music!!! BEAUTIFUL YOU!!! I can relate to you so so so deeply!!! Love love love you!!! Thank you for sharing so beautifully all you are heart, body mind and soul♡♡♡♡♡♡♡♡♡ Thank you!!!!♡♡♡♡♡♡♡♡♡◇
Thank you for sharing!♡ Everything you are explaining i go through! It is so comforting to know I'm not alone, in the middle of the night now or otherwise i get these attscks that are so frightening and painful and you want SO SO MUCH TO JUST BE NORMAL AGAIN!!! Bless you!! I hope we find answers! It is so very difficult to explain these painful symptoms!!! You have helped me so so so much tonight as i have been so isolated by my illness and have had very busy & taxing days lately. I've been tested for dysautonomia and other things at Mayo Clinic that were confirmed as REAL finally!!! THAT IS A GREAT THING!!! TO BE VALIDATED!!! Thank You!!!♡♡♡♡♡♡♡♡♡♡ Nameste♡♡♡♡♡♡♡♡♡♡ Love and hugs to you Dear One!!!
Am very interested in your next video. Hopefully you will find a solution.
Thank you for sharing your experience. I have s
Please contact me. I would love to talk with you! Queenesthertx@gmail.com #collegebuddies #samebeautifulsmile #Iesha
Thank you so very much I have the same problem it's just so high up in my intestines that I'm using Espinoza salts to flush it out but I'm so weak dehydrated and sick after words
that's too funny. Although, I would have jumped to the ceiling when it first started talking.
Dose sir have a ps4 I'm his friend I'm bajapantys and my ps4 name is ironbomer876
With gastroparesis we have to get the poop out, so a flush with epson salts every day is the answwer. I havent been diagnosed yet but im almost 95% positive with your same symptoms, so doing enemas once in a while, smaller meals and the salts. but probably will have to eventually go and get tested for the emptying tests, dont have very good insurance, will see.
I had the emptying test 3 yrs ago. They gave me eggs, then put me in the tube and watched to see if my stomach emptied within 30 min. It didn't, so they said I had gastroparesis and life went on. No prescriptions, nothing. Ffwd to Oct 2019. They ordered upper egd to see how much worse my esophagitis is. It's been yrs since the last one, but this time I have a better doc. He said my stomach hadnt emptied in at least 3 days! He showed on the pics where each pile of food was from previous days. And he could tell I fasted the day before since he can tell older food from fresh. They never knew how bad it was since I was vomiting all the time before when they did egds. It was so bad I was in the er once or twice a month, for six years. But all that stopped from the meds these last couple years, at least the vomiting. So the gastroparesis has caused gerd, gastritis (inflammation of inner stomach lining), esophagitis, and acid reflux. For over ten years they misdiagnosed me and had me eating all the worse possible things for gp. High fiber, raw veggies, seeds and nuts, whole grain, all are off limits for me now. The food I can have isn't even worth it. Liquid is the only way to avoid pain so I live on broth, vanilla Carnation with almond milk, and sometimes eggs or rice crispies (the only cereal I can eat, since I can't have corn or whole grain besides rice) and I still have to use linzess 290, and fleet every day. I hope you find what is going on so you at least know what you can eat without doing more damage to yourself. If you've had your gall bladder out, if they nicked your vagus nerve, that will cause gp. I've also learned that taking ppi like Prilosec for years can cause gp, I hope this info helps!
Hi, I'm an old Sub with POTS and these days a laundry list of other things, I'm bedbound now too. I still go to Dr's appts but that's it. I finally caved and got a wheelchair and now an electric chair but can't enjoy it like I should because I have too much pain now. Any way good to see you MNA.
Shit! I am dizzy................gonna put ya on pause and go take my meds. Benedryl................u know. U reminded me..as if being dizzy isnt reminder enuf. Yr 19 here people as u would say. lol I miss and love ya!
is this @ 3am?
lol I so feel ya. Could kill others.
Cute..............No flashing!!!!!! Whoa!
Good bless you love
Please let me know what this medication is. I would like to ask my doc about it :)
While it's 70's/almost 80 this last wk..........................we are happily, confused here.
I lived for this video! ;)
{{{{{{{{{{{{{hugs & loves}}}}}}}}}}}
I just barely seen this. OI!
I appreciate what you said about advocating for your self. I am going to do that too. I am glad you are doing okay.
I have missed you on You Tube. I hope you are doing okay.
Happy 2017! Hope you are doing well. I am still here. I had a long 2016. Finally feeling well enough to post more often.
Oh yeah avoid hospitals, especially ER's like the plague, especially if you have multiple illnesses. It's like everyones an expert on your body, except for you. At a time when you are the most vunerable, you still have to be ready to fight to get what your body needs to function. It's Nuts.
OMG! There u r! Been worried as hell.
Much as I hate to see such a clearly wonderful person suffering with these anomalies. Your candor is very much appreciated! I was going to suggest the squatty potty, though after reading the comments I see your symptoms have progressed beyond that point. I hope the new accessories are benefiting you. Best wishes!
Thank you very, very much. Been there unfortunately. Nice to share our struggles.
MissNikki was right behind me...I'm the guy in the white shirt holding the sign directly in front of you! 💯
Hi. I'm gluten intolerant, newly diagnosed and began having the bowel movement issues as most of us eventually do. I've learned that my good gut flora was low and my stomach acid production was very low. I began taking probiotics by Custom Probiotics the 11 strain powder-2 trillion cfu's daily until I reach 100 trillion then take a lot less to maintain my flora. Within 7 days, I began having bowel movements without the help of other supplements such as laxatives, etc. Also I eat fermented veggies to assist with building good gut flora. In addition, I was doing probiotic implants with bifido bacterias every 3 days for a few weeks. My suggestion is, to research Custom Probiotics, you can speak with the owner who is a chemist-I did a couple times and he really assisted me with the best probiotic to take for my issue. Also, research probiotic implants. I understand you have several medical issues so taking that into consideration is best. I pray your healing in Jesus name.
wow this is what's going on with me thank you for this video.
You are most welcome. Be gentle with yourself as your body does these strange things. I have learned so much since I posted this video years ago.
why did you have to see a Neuro-ophthalmolgist?
I woke one morning (June 1st 2006) and was blind in one eye. I had (and still have) 20/20 and have never worn glasses. Neuro-Ophthalmologist can run more extensive tests. And he is Jewish, so he knows lots about Familial Dysautonomia, which is a Ashkenazi Jewish Genetic Disease. Mine is Non-familial Dysautonomia. And since I'm on Plaquenil, this doctor also runs extensive tests on me every 4 months (Plaquenil can cause blindness). It's important to note that I also have autoimmune disorders, thus the Plaquenil use.
+MissNikkiAnn will I just turned 20. 2 years ago I had papilledema.. now I have intracranial pressure showing on a mri .. I also get smooth tongue .. full body twitches. . I brought up msa to the doctors but they say I'm to young . . what do you think should I keep bringing it up ??
+Zoey Bhee You are NOT too young. If you do some research online, you'll come across at least 2 cases of younger MSA patients. Times have changed, more people have access to healthcare, which can lead to earlier diagnosing of these conditions that are their most "visible" in people in their 50s and up. For instance, Postural Orthostatic Tachycardia Syndrome (POTS) is prevalent in younger people, I believe 20 to 30 years from now we'll find that those of us who were diagnosed with POTS are diagnosed with MSA. What the medical community will find is that POTS is one of the waaaaaaay earlier syndromes of MSA. This is a good thing; it would mean that young POTS patients have 40 more years to live before MSA totally disables us. Earlier diagnosing would put so many at ease. Also, the my Autonomic specialist says it IS possible for younger people to have MSA. As for me, the specialist thinks mine is Pure Autonomic Failure (PAF), it presents and looks the same as MSA, and is not as aggressive. BUT! She also said that it "could" be MSA. In the end, the final MSA diagnosis can only after death, so that issue makes the entire package difficult. My advice is to seek out an Autonomic Specialist, they have access to tests that other doctors don't. There are only a few in The United States. I went to Vanderbilt's Autonomic Center. It was an expensive trip, but was worth it, since I had to seek Disability because of my debilitating disorders. Don't give up. Follow your gut. Seek out doctors who are humble enough to admit that they know NOTHING about Dysautonomia. These are the doctors who will be willing to follow you on this journey as you both learn about your unique, frustrating, and "almost" unbelievable illness. Also, find a good Psychiatrist; Dysautonomia comes with some chemical serotonin issues that only a psychiatrist can truly understand. Also, having a psychiatrist or psychologist will refute the ignorant doctors who say: it's all in your head. Do Not Give Up until you are satisfied that all of your concerns and questions have been answered.
+MissNikkiAnn you're really smart. thank you a lot . I'll most definitely follow your advice. did you get twitching? and intracranial pressure ? I've been to 2 3 neuros.. and a neuro-optha. it's draining.. I've had 2 mris ..and emg a nerve conduction test
+Zoey Bhee the youngest I came across was 30.. I hope you don't have msa tho. hopefully you're leaning towards "paf". .
Thank you so much! :)
+genapruitt You are most welcome.
I go to the Dr tomorrow and dread it every time................SICK People are there@!
Sir confused me on his videos. {{{{{{{{hugs}}}}}}}}
Good to hear from you again. I hear you with those indoor swimming lessons. My youngest is 12 and we used to take him and his brother 11 years ago. I didn't know I had POTS or almost any thing else then but I did know it made me so ill to be in that hot environment. I understood that since I was a child and used to avoid those situations, but yeah, like you said, you do it for your kids. Now I know I couldn't do it at all.
{{{{{{{{{{hugs}}}}}}}}}} 47 here! Struggling to get along with people right now......................just too much effort to get along with some people sometimes. I am doing my best. If my best isn't good enuf for some, then the some need to be back, back on the back shelf in my life.
ARGHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Good to see you again. Yeah those ego driven idiots can be so dangerous. I feel the same as you that those of us with severe and or multiple chronic illnesses need to fight even harder to be in control of our treatments. Just at a time when it would be such a blessing to let others take control some what, we have to fight even harder.
Hey! Not sure how you're doing now, but I have POTS too and I'd like to offer some advice, if it helps! I started yoga about a month ago, and it has actually helped so much. The very first session was on a good day and my tachycardia was minimal. I have other chronic illnesses too and my body is quite deconditioned. Yoga has helped restore some strength, which is honestly such a milestone for me! I've found that doing yoga also helps prevent the flares! However, if they do come on, I know I need to stop, or only do restorative yoga from YouYube videos at home for no more than 10 minutes. Doing a long class in this state would definitely make it worse. I know I am so much better, but I feel my POTS every day- flights of stairs will send my heart racing, hills of any incline are a challenge. It's all about the baby steps- the flares will not leave for some time, possibly years, but working in between them has helped to put them off, if that makes sense!
I eventually got a port and do the fluids at home four days a week. I have a pump I carry in my backpack.