Sarah's POTS Story Part II

[shortysax]

Wish I could hear the rest of your story :-( Silly youtube. Any way you could reupload?

[sarahdionna]

@shortysax It worked okay for me... perhaps you could give it a retry. I don't have the same computer anymore that I had when I created this so I don't have the video clips to redo it. I might make another "story" one in the future.

[MsCheekyhead]

@shortysax @sarahdionna The same thing has happened to me too! I cannot hear this clip! Very diappointing, as this seems like the important part!!

I have been receiveing this message : NOTICE This video contains an audio track that has not been authorized by WMG. The audio has been disabled. More about copyright

[sarahdionna]

@MsCheekyhead Okay. I guess it is time to update it anyway. Lol. I will make up a new one within a week. Thanks for letting me know.

[rapreborn]

I couldn't imagine life without xanax and atenolol.

[lynnea8193]

I have had POTS for about 3 months now. It took the doctors about a month and a half to figure out what I had and get me on medication. I don't faint but I get extremely overheated and nauseous after standing for just 10 min. I was considering a wheelchair because I seem fine sitting for long periods of time. I am going to be a senior in high school in about a month and I am so scared! I don't know how I will be able to go to school!!! Salt tablets and florinef have helped me the most so far :D

[TheYazmanian]

my heart goes out to you. keep the faith and keep it strong girl!

[lowkuashus]

Thank you so much for sharing your story! I just went to a neurologist yesterday because I passed out in June and we don't know what it was. I was born premie and had seizures until I was 10 so we thought it was that - but yesterday when I was getting my blood drawn I passed out again and they sent me to the ER. The ER doctor thinks it was fainting and not seizures. Still have to get a lot of tests done, we don't know what it is. But if you can make it with POTS I can make it with what I have!

[LiLIrishChick63]

i was diagnosed with this a few years ago. listening to u talk about how no1 believed u, i know how u feel! even the cardiologist who diagnosed me was sort of nonchalant about it. i was only diagnosed with a slight case of POTS tho, luckily i haven't fully passed out yet(i've gotten pretty close). i'm sorry u had to give up what u loved to do, but i hope u get to find something else u love to do instead!

[sarahdionna]

@LiLIrishChick63 Thank you so much! I still find things that I enjoy doing and one day I hope to be a mother which will be way better than anything else! I hope that you are able to find a lot of relief in your symptoms!

[LiLIrishChick63]

@sarahdionna thank you! i find that drinking a lot of water and keeping my fluids up DOES help a lot! i'm hoping to someday become a mother as well! good luck to you! :)

[kisakye92]

1. you look like heather123

2. all i heard in both videos was faint faint faint.

3. total respect and support for all troops!! <3

4. how much did you weigh when you enlisted? you look really petite

4. thanks for sharing!!

[mommybobo]

Your story is so interesting. POTS has squelched so many talented women's dreams. You're still so young...you should begin to think of careers in which you can sit down or have flexible hours...in case your POTS doesn't subside.

My daughter began passing out yearly since the age of 3. At age 16, we finally had the correct diagnosis from Dr. Blair Grubb (one of the nation's foremost experts).

God bless YOU!

[alysebell1]

i have recently been diagnosed with Pots. I am lucky in that I don't seem to faint (fingers crossed that dosen't ever happen) but I do have nearly consent nausea and genrally I feel really tired all the time. I hearing your story makes me feel as though I am not going through this alone so thankyou

[sarahdionna]

@alysebell1 I am sorry that you have to deal with POTS as well. I hope you have more good days than you do bad days!

[alysebell1]

@sarahdionna Luckily more good than bad, I hope you have better days and that you can eventually go back to doing what you love. Love you dog he is so gorgeous.

[theombligosx4]

Such an inpirational story. I'm sorry you had to retire so early. I am 17 and have had POTS for the past ten years. I only got it diganosed at the Mayo Clinic in Rochester MN last year. I never have fully passed out, but my worst symptom is chronic pain in every joint of my body. There are several days where I cannot even get out of bed. Have you ever had that kind of pain due to having POTS? Thanks for posting this video

[sarahdionna]

@theombligosx4 Perhaps whatever is causing your chronic joint pain could be causing your POTS. I would have that looked into. I don't have much joint pain just a little bit but my pain is from injuries over the years from being an athlete. I am glad that you were able to go to the Mayo Clinic in Rochester. I have been there before but not as a patient.

[esi1958]

Hi sarah...have you heard of Dr. Levine inDallas, TX? He preaches exercise to build the heart. Worked for our daughter. Still has some episodes but she is worlds better and fully functional.

[sarahdionna]

@esi1958 I have heard of the TX cardio program for POTS patients and I actually know a girl and met her in person that tried it out. Her POTS was from growth spurts and she is tons better and she said that the exercises did help her. I do a lot of exercising on the days that I can. I am one of the most fit people that I know. lol. I do feel better at least mentally when I exercise. I have some videos about it here on my channel.

[LILMAN561305]

YOU ARE GORGEOUS and keep strong i have never heard of pots before i do kno now what it is you are truley a soldier , i was diagnoised 8 mnths ago with type 1 diabetes never will be the same im 25 and this is an awesome vid to aware people of pots and tell them your story !!!!

[sarahdionna]

@LILMAN561305 Thank you! I hope things go well with you with the diabetes. I can't even imagine having that! Best of luck to you! :)

[Bobo11420]

tilt tables suck !! but they are so relieving when you wake up in a semi comatose state and look at everyone who didnt believe and your just like did i pass ?!?! lol awesome video :D

[sarahdionna]

@Bobo11420 I know, right?

[campioje]

I have POTS as well and was treated at Johns Hopkins. What are the names of your doctors. Mine is Peter Rowe. i was diagnosed when I was about 15. I know how you feel when no one believed you. Luckily my mom believed me but as you said convincing medical is really hard. I went to about 10 different doctors who each told me i had a different problem. Finally i met dr.rowe and he told me about POTS. Im still struggling with convincing my dad. I think its great what your doing with informing people

[sarahdionna]

@campioje Thank you. I have doctors in SC and GA now. I basically go to VA hospitals or a local one if necessary. None of my current doctors are specialists.

[sarahdionna]

@campioje Dr. Goldstein officially diagnosed me with dysautonomia.

[Pizzazz80]

Good luck in your battle!

Please remember, more chemicals/toxins wont help with a diseased caused by them. :(

Do your best to DETOX your body, only PURE water-NO fluoride, and NO chemicals in your foods, certainly no chemical sweeteners.

Good NATURAL nutrition is key!

Good luck everyone!

[sarahdionna]

@Pizzazz80  Thank you!

[TheBitchFaggot]

You are a true inspiration! I also enjoy hunting and fishing and I want to join the marines too. It's just very unfortunite that we also have the POTS disease in common. In my case, I have lots of depression from POTS and that's a very tough thing to live with aswell as all those doctor apppointments. I hope we can both get better and go back to living a happy, normal life soon : ) Thanks for posting this awareness video and best of luck to you in the future.

[sarahdionna]

@TheBitchFaggot Thank you! I wish you all "good days."

[weStayModest]

Doctors From johns Hopkins!!!! that is where i went, ive been living with this for nearly a year now i dont pass out from standing up anymore but my memory still seems so faint and dim did you experience this as-well or could this be the result of something else?

[campioje]

@weStayModest

My biggest problem is with my memory. It sucks so much!!! College is so hard with POTS and the teachers dont know what to do with you so i just do bad on tests even though I knew all the information. it was just rele hard to recall wat i studied. Its like i can remember slightly but the memories are faint. who is ur doc. i am also being treated at John Hopkins

[weStayModest]

@campioje they recommended me to peter Rowe actually i met the man shook his hand and all but he has so many patients with this similar problem that my app. times would no be sufficient. so yeah i now am seem a man who goes my Haseem in VA he is really smart he actually wrote a book about POTS. He has me taking midodrin,metoprolol,and lexapro right now. yes i know what you mean by faint memories is like my though process is ruined? how old are you now if you dont mind me asking?

[campioje]

@weStayModest I am 19 now. I see Dr.Rowe at least every 6months. I am currently at James Madison University in VA Its just been rele hard lately with my exams. I feel stupid and it sucks cause I know them information. I also have no idea how to explain to my teachers about POTS so they have no idea that i am struggling. I just dont know what to do. It is so frustrating! I study my butt off and still get C's on tests

[weStayModest]

@campioje yeah, im only 16 right now i live down in maryland im on my last year of highschool and this happened to me... so you can imagine is sucks. my plan was the military but i guess im college bound if i can even handle that... But with explaining it to your teachers... did you try getting Dr.Rowe to aid you in that maybe he can give you some consolation on how to go about doing that.

[campioje]

@weStayModest yeah i just sent him an email. He gave me a doctors not when i first came to JMU but it didnt explain too much and the teachers didnt know what to do with it lol. I am from Maryland as well in the Carroll County area. did u kno there is an organization called DYNA thats headquarters are in Waldorf, MD. I just found out about it today. You should look at it. I am always looking stuff up on the web about POTS just to see if people have found better ways of treating it

[weStayModest]

@campioje ill look into it, hey if you have a face book a just add me on there its to hard to contact you over Youtube, facebook.com/drew.whittington

[weStayModest]

@campioje yeah ill make sure i look into it, you should just add me over face book to its much easier to contact you and we can ask a few questions transfer some tips its facebook. C () m / drew.whittington

[weStayModest]

@weStayModest /drew.whittington

[campioje]

@weStayModest there are a lot of drew whittington wat does ur pic look like? i.e. like are others in ur pic etc...

[weStayModest]

@campioje lol im the one with no shirt on. if that narrows it down. just type up facebook.c()m/drew.whittington no spaces or just give me your info and ill add you my email is almostsk8er1117@aim.com if that doesnt work try Whittington.andrew@ymail.com but i think its the first one.

[sarahdionna]

@weStayModest I have word recall and putting words in the right order during a story problems sometimes. Memory use to be something that I had a hard time with but now it is primarily just finding the right word to use and getting frustrated with myself. lol.

[weStayModest]

@sarahdionna Yeah.. i fixed that problem.. now a new one manifest itself.. they are now telling me i have severe anxiety,depression,panic disorder, and a bi polar disorder... im scared to leave my house scared to do anything i think crazy things.. idk what to do anymore im losing my mind! did you have this problem with our POTS, is it the POTS causing the problem or... do i really have those things stated above.. please answer... i need help. i almost wanna just die..

[sarahdionna]

@weStayModest I don't have anxiety any more than most people, no depression but I did have ups and downs for a little bit when I was on the road to accepting having POTS, and I don't have bipolar disorder. I honestly have no idea if you have any of those things but I do know that anxiety and depression can accompanying any chronic illness. I don't know much about bipolar but I do have few friends that I have met along the way in life who have it. None of them have POTS.

[sarahdionna]

@weStayModest I would suggest trying to find a really good doctor that you are comfortable with and who can really help you with all your concerns! :) Best of luck to you!

[weStayModest]

@sarahdionna Thank you very much. ive just been alone with this whole thing because when ever i tell anyone whats wrong they thing im doing it for attention or they feel sympathy for me.. :( my cardiologist is a cool guy i like him. but i wanna know if the panic, tremors, hot flashes, and such are apart of POTS like do you experience those symptoms or is this and anxiety thing. And im hardly orthestatic anymore... so idk.. it doesn't make sense to me.. btw keep making vids they help alot (:

[weStayModest]

@sarahdionna Keep making videos! i enjoy them! you would never think a girl as cute as you would be unfortunate enough to have this life crippling syndrome. i feel for you and if you ever need to talk! im here (: but please please please keep making videos there very inspirational.. and it helps me with my day to day life.

[Multifarious222]

I have many problems associated with TMD or publicly known as TMJ so being in that position I can understand what it's like to live with health issues. I never have had any fainting though.. . That seems kind of scary. It's very sad, when things like this you get used to. I am happy to see that you are able to at least seek out help and have support while doing so. How are you today? Better I hope.

[sarahdionna]

@Multifarious222 Hi. I am terrible at being able to keep up with these comments. lol. Today I was good. I even got to go grocery shopping. In a little bit I will go exercise but I need to eat again first. I also have TMJ and I know it can suck. I might end up getting jaw surgery for it after I get my braces taken off. I hope you have a wonderful day!

[icesktr189]

Lexapro worked WONDERS for my POTS. The beginning month was horrible with symptoms, but I went from being bed bound for a year to working full time and now a mother!

[sarahdionna]

@icesktr189 I am so happy for you! :)

[bossyy]

Your story is like mine, I was in the Air Force when mine started & I passed out 3 times at my job. I had the holter monitor & then they put a device in my chest to monitor it. I also have Complex migraines, with them i can't see, talk, and i lose feeling in my hands. I got an ablation done on my heart to stop the arrythmias and I am on metoporal I was just medically discharged medically retired . i dont faint anymore but I still get fatigure i believe if you stay active you are better off

[sarahdionna]

@bossyy Yes staying as active as possible is always a good thing! :) I hope you are doing well today!

[stikitape214]

you seem like such a sweet an positive person

your also very pretty

have you had any improvement with the symptoms ??

[sarahdionna]

@stikitape214 Hi. Thank you for all the compliments! :) I just posted a new video of me fainting 3 times and my dog alerting me. You should check it out. I still have my good days and bad days but I am very happy with my life and that is what matters to me! =D

[bionyx86]

Talk about the good now hard headed! I remember meeting you during rough tiimes and think it's about time you told everyone how far you've come! You are the toughest service member other than my Father (Stroke, etc, etc). I tried to go the Marine route but due to the "perfect tests" Never did the wheelchair deal. You've come so far! I see further in the future! Stay as strong as you are and there is no cure YET. Remember the YET part friend. ;)

[jrdfreckles11]

What was your blood pressure during all of this?

[sarahdionna]

@jrdfreckles11

110/70 usually. I apologize about just now getting to your question. I had no idea I had more comments!

[joanne84100]

i am 25 i have had pots for 18 months now. its nice to know i am not alone wiv this condition. as the months have gone by i have noticed an improvement. i go to acupuncture which has helped me. i would really recommed acupuncture to anyone. make sure the acupuncturist is part of the B.A.C. BRITISH ACUPUNCTURE COUNCIL. it may have a different name if you live in another country. just make sure they are a register(qualified) hope this helps.

[fballmen]

I AGREE!!! I just started Acupunture wit this chinese doctor; he's supplementing with lots of chinese herbs, and IT's WORKING!

Do not expect the miracle we are all hoping for, with instantaneous healing, but over the past 6 weeks weeks, my HR has been slowing down and symptoms r not as violent. Hang in there!! For every problem there IS a solution! Lots of healing love to you all!

[dkbrinlee]

Hello sarah,

my wife has had Pots and dysautonomia for 5 years after a bad pnuemonia. She has had to quit working and is mostly bed ridden most the time. She has been to the mayo clinic twice and has had all the drugs like you. No luck so far. I know how hard it is for you and believe me it is very difficult to deal with. Keep up believing and hoping. Keep up the fight.

Daniel

[sarahdionna]

@dkbrinlee

Thank you. I hope your wife finds or has already found improvement!

[sarahdionna]

@dkbrinlee I hope that your wife is doing much better! I have heard that the Mayo Clinic has helped a lot of people and I hope that your wife gets some help. Right now I am only taking birth control pills, because get my monthly is really hard on my POTS, phenergan when I get nauseous, and some sort of a pain reliever for migraines. I will not stop having hope and I hope your wife doesn't either. It is great she has you to help give her support!

[mariemicheles]

I also have severe pots. My CFS/ME doctor started me on saline IV drips. One liter bag for 4 to 5 days. By the time the second bag was finished I was feeling better. After a year of being bedridden I am now up and around. The IV's REALLY did it. Aftet the IV's you drink vitylite (gookinade). When you have a severe relapse you can do another IV. Dr, Bell and Dr,Lapp use this method to help with Pots. Hope this helps you.

[DysautonomiaMD]

Am on an iv now, 1-2 liters. Last iv was a few weeks ago. Low blood volume is a very underestimated symptom of dysautonomia, I believe. Ask your doctor, but I eat high salt diet, to help hold on to the water. And I drink ?4 liters/day.

Great Posted Comment! You are so right, in my humble opinion. :-). Thanks for sharing. Highest Personal Regards, Dr M

[mariemicheles]

I will be dong my third round of IV's tomorrow. It has worked so well after the second liter is done each time that I can stay up and about and I have even been able to go to get out of the house which hasn't happened in a year. my doctor did recommend salt I drink almost a gallon of water a day but he said you need the electrolytes to hold the fluid. I now drink a high dose electrolyte mix and on the altering day take it in caplet form.

[sarahdionna]

actually i already have looked into that possibility. one of my doctors told me about it. they still haven't found any virus.

[646879]

look into XMRV and Xand.....new retrovirus that is associated with cfs and possibly some forms of pots.....

[sarahdionna]

@646879

My doctor actually told me about that as well!

[BaileyLush]

You have a very good additude. You will probably get there:D

[sarahdionna]

@BaileyLush

Thank you! :)

[xNikki713x]

Hi! I was looking up some information on dysautonomia (I was diagnosed with POTS yesterday) and stumbled across your videos. It's such a struggle to deal with it at times but I wish you the best of luck with everything. :)

[sarahdionna]

@xNikki713x

Thank you! :)

[dysautonomia1]

Hi, I also suffer from dysautonomia and I have a book out sharing my journey from working and walking to collasping.

My story is a lot like years.. not being believed, i even lost family. Here is the link:God Needs Me by Lynn Fox Adams | ISBN # 978-1-60799-592-0

[sarahdionna]

@dysautonomia1 Thanks for sharing that info on here!

[danielle252009]

I was Just tould that I have POTS 2 days ago and like you for a few years i was tould off and on it was all in my head and all that . I still dont know hardly anything abought it and I have A Hard Time even gitting up and doing anything cause i am always Passing Out And My Heart Rate is always High and My Blood Presure Really Low . They Started Me on Midodrine so i am hopeing that helps Cause So Far the Salt n Fluid intake Aint Helping I am Only 25 And Cant Do Hardly Anything

[sarahdionna]

@danielle252009

I hope the meds have worked out for you!

[juliecheerleads]

I feel for you! I have POTS & severe constant headaches. Have you tried anti-depressants for POTS?

[sarahdionna]

@juliecheerleads

I actually just tried Cymbalta but I was too nauseous and had no apatite what so ever so I stopped taking it because I was losing too much weight.

[juliecheerleads]

@sarahdionna What about mestinon? I know Grubb said a lot of his patients didn't do well until they were on that, including me, but I am on a mix of cymbalta, wellbutrin and then the mestinon too. If you're normally nauseous you could try something, I take zofran and it is amazing how much it helps!

[sarahdionna]

@juliecheerleads

I have tried Mestinon and unfortunately, I am allergic to it! It is the only thing that I know of that I am allergic to.

[irishcatholicgirlie]

I have Sjogren's. There is something called autonomic neuropathy that happens in Sjogren's. I got diagnosed with POTS after Sjogren's. The autonomic neuropathy sounds just like dysautonomia. I've tried Neurontin and Lyrics, but Lyrica made me throw up and Neurontin just makes me drowsy.

[fmrsgtusmc]

I love the Marine Corps, but this is one serious problem I have with it. Everyone thinks you are faking. I have no doubt the corpsman could save a life on the battlefield, but they are NOT professionals in diagnostic medicine. That amount of time of being jerked around could result in death or irreversible damage in some conditions.

[sarahdionna]

@fmrsgtusmc

definitely!!!

[thoushallreason]

hey sarah,your story made a tear come out of my eye, im 20 years old and ill be heading to camp pendleton sandiego for boot camp next month. I was a bit nervous about boot camp, but now that i heard your story and how much you loved the marine corps and all the hard work you are doing to go back, you gave me some motivation to try my hardest to get ready for whats coming my way, im also going to be an ammo tech. hopefully i will see you someday in the future,keep you head up,

Semper Fi

[crazylegz610]

Hey Sarah! I love your videos. Your upbeat personality and hope is an inspiration to everyone with a disability or condition. Thanks again, and the best of luck in everything you do!

[ReineDeLaSeine14]

One of my problems is Generalized Dysautonomia...

I have read that as a last resort things like DDAVP and Procrit can be used in treatment.

Hope you are able to go back on active duty soon!

[coolbluegatorade6225]

i just found out i have pots this past week but the docs are saying a full recovery in 6-12 weeks .. and im on beta blockers

[12697]

SOMEONE TALK TO ME

I NEED SOMEONE TO TALK TO lN

[sarahdionna]

thank you guys! the song playing is one that came with my computer. it is called "I Guess You're Right"

[justlikeoldtimes02]

you are really inspirational -- always smiling. i have POTs as well as other chronic illnesses and i'm only 20.

thanks

whats the song playing, i like it.

[mismelissa312]

Sarah these videos are just great! I'm sure it's really encouraging to those with Dysautonomia to see these videos! Hopefully it will make them want to make their own videos to help spread the word!! Hope you have a good day!