POTS Video

[lilmama010687]

i was dignosed in 07

[Cognitionz]

Every time i wake up in the morning I feel so dizzy... thinking it will go away it doesn't!

I can't think anymore its like my brain doesn't have the energy to process information or think clearly anymore (I used to be so smart!) now im this spaced out 19 year old trying to keep up with my girl friends sentences. I feel tired all the fucking time... I always want to lay down and sleep. The only time i feel normal is when im laying down in my bed with no gravity on me. it seems to be getting worse

[casserilla331]

@Cognitionz

I understand how frustrating it is. I used to worry how I would work and support myself because I couldn't think straight or concentrate and most of the time, I'm so tired even after 8 hours of sleep. I was on beta blockers for years but that just made it worse. I've had a lot of relief from my symptoms with the POTS Treatment Center and Dr. Mary Kyprianou in Dallas. I'm a lot better than I was even a year ago. I hope you find someone like Dr. K to help you. Good luck!!

[yazzleberry1994]

hii im 17 years old and i have pots .. i am always tierd and have no energy and i all ways pass out and have tremors and end up in hospital ... i am waitin to see a consulton then hopefully i should be put on medication for it to help me or evan get help how to controll it .. thank u for makin this vidoe it helped me kind of with some info ..

[mommybobo]

This was a nice video...what a brave girl. This is what my daughter (with Pots) has been like: strong, brave, and never complaining. You must be nearly my daughter's age (it's 2011 now, and my daughter is 25). Were you talking about Dr. Grubb? That's who we see for pots.

[acvrana]

Thanks for the great vid

[StephanieH0103]

I was just diagnosed with POTS. After over a year I am glad to have some answers of what is wrong with me.. I think the doctors figured it was all in my head.. I am 37 and it has been about a year since I last worked. I just hope now I might be able to lead a normal life of some sort! Thanks for the video since I am researching all I can about the syndrome!

[Werdudaichda]

I'm 25 years old , german girl and I have POTS since 5 years and the POTS is going not better only worse

[angelacave]

Steroids? This is the first time I've heard of that treatment option. Do you feel it helped? I'm shadesofgrey49 on DINET, if you're on that...

[mikeer222]

celiac disease cuases pots!!!!! in other words an food, medicine or soap allergy!!!!!

[strawberrygrl343]

i agree!! it's sooo relieving to know what has suddenly happened to you! i've been sick for a month now, and have just been diagnosed with pots. i have so many questions...i want this to go away!! i don't know if that's possible yet, but this video gave me hope! thanks for the video lisa

[dancamp009]

I've had a very serious case of POTS for the last six years and I think I finally figured out the cause in my case. It was processed sugar. I quit ALL processed sugar and now I have a perfect 56 heart beat and I feel great. Believe me I tried everything without success until I finally removed all processed sugar and for the last seven days I've held out at 56 HBs per minute. Hopefully this will last. I'm confident this time that it will. Good luck to you.

[lbrond711]

Hey guys! It's me Lisa from the video. I'm glad you all found my video and I hope it helped explain some things about POTS. It's been a little over 2 years since I made this video, and although I'm not back to work yet, I am doing a lot better! So there is hope and don't give up!

[casserilla331]

@lbrond711

Thank you so much, Lisa! Are you on a high sodium diet? Are you able to exercise? I've found some of the pages on Facebook to be very helpful like POTSy Girl, Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS), POTS Treatment Center, etc. Keep us posted on how you're feeling. Here's my video... search for "Dr. Kyprianou's POTS Treatment - Testimonial #3".

[thelightblue32]

my mom s friend has pots she sits in a weelchair

[XxFight4TheDreamxX]

WOW ... i cant explain how amazing is it to have you post such a amazing and informative video to youtube.

I have Posted this to my facebook to show and explain to my friends why suddenly my life changed so suddenly... once again .. ThanksXxxx Lovealways x

[TheatregirlwithPOTS]

Hey guys. I've been living with POTS all of my life. I'm now a young adult and I still have difficulties with POTS. I know it sucks but I just want to say to XOXOsincerelyjadez, I feel your pain (so to speak). I'd suggest being open to your friends about what's going on and make sure you have a strong support system. There's nothing like friends who will be there for you when you pass out!! Also, I'd suggest trying to get to see Dr. Fischer at mayo clinic. He helped me a lot! Good luck!

[xoxosincerelyjadez]

i was just recently dianosed with POTS, im 13 so i go to middle school and next year will be in highschool, its been vry diffiicult so far and iv been bumped up to midodrine 5 times a day and a pill tht keeps in the sodium and lquid tht i take, it has worked some but i still hav m bad times, iv gone home from school many days now, i hav been searcing for ppl rather someone around my age who i can relate to please, im open to any suggestions

[musicmakingal1]

@xoxosincerelyjadez omg im thirteen! I WWAS DIAGNOSED YESTERDAY. i dont take anything for it but i have it really bad. it sucks cuz im doing 2 standing acts in my school talent show AND have 2 stand up when spelling words in the spelling bee. i'm so scared!!!!

[bbthecrazeechika]

Hey,

I was also recently diagnosed with POTS, and the doctors had no idea what was going on. THey totally thought I was making it up. Im here if you want to talk about anything, and i am 15 years old.

Hope this helps!

[luminescentfeeling]

Had to watch this again. I'll send this to someone I met recently who has been good to me regarding POTS .

So I should thank you, as you made the video or us all to do just this. Thank you *very* much and I hope you're doing as well as can be. Cheers.

[DysautonomiaMD]

And more Cheers, too.

Each one of us is doing so well to keep in touch with one another! Highest Personal Regards, Dr M

[yvetteaonmyown]

I have been suffering all my life from low blood pressure, severe fatigue, anxiety, fainting and gastrointestinal distress. When I was a teenager I had several upper GIs and lived on Mylanta. I was called lazy and crazy by everyone including my family. I fainted in Jan. went to the doctor and he prescribed vitamins. I had my lungs, thyroid and liver checked - all came back normal yet I have dangerously low blood pressure. With this video I hope to get some help... wish me luck please...

[DysautonomiaMD]

I'm so sorry you had to go through so much. Please visit my site and note the Orthostatics definitions, etc. I do these orthostatic blood pressures (laying, sitting, then standing if I can stand) sometimes 4 times/day over the last 3 years. God help us all, and our prayers are with you. Highest Personal Regards, Dr M

[habakkukmum]

Beta blockers don't work for everyone. My son had a severe reaction that although well known no one warned us about it. My daughter had no benefit and only side effects. Their POTS is part ofa newly recognized subset JHM or Joint Hypermobility Syndrome. Anyone else have it?

[Poodfof]

I have both POTS and Hypermobility Syndrome. The doctors haven't put me on any medication yet, because they're still doing some more tests.

I hope your children find some relief somehow.

[DysautonomiaMD]

Midodrine has done me wonders. Wondering if it has been offered to you...Thanks for sharing. Highest Personal Regards, Dr. M

[linkinpark2380]

I have Autonomic Nervous Dysfunction. I dont seem to be getting better after eating salt and drinking Gatorade. My cardiologist said this would help raise my low blood pressure which is about 53 over 80. And reduce or make my symptoms better. But i keep feeling like there is more to my problem than what my diagnosis is making it out to be. I'm now 15 and a freshman who cant do the same things as my friends without getting worn out. Theres a lot more going on with me, I dont feel better.

Plz help

[habakkukmum]

keep going to the doctor until something helps. My kids tried many meds and so far only flourineff has helped. Mitodrine has a postive effect, but the side effects keep them from taking it regularly. You need to go until you find something that helps.

[jdsmith24311]

Try going to the Cleveland clinic and seeing Dr. Neil Cherian. He's really good. I developed pots as an adult and have a very severe form. Can't drive, walk or go anywhere by myself because of blackouts and seizures. There are medicine's that help like Topamax and Trileptal but there is no cure.

[coolbluegatorade6225]

i was just diagnosed with pots last week .. it sucks i want to go running soo bad!! im on beta blockers and i have those surgical socks and am increasing my salt intake but it sitll sucks cuz im only 18 and ive always been xtremely active .. sports hav been a huge part of my life

[whitekitten05]

I've had POTS for 15 yrs. It took 14 years to get diagnosed, but I was also found out the cause of it is Mitochondrial Disease. Most people don't understand how you can feel so awful all the time and look fine on the outside.

[Lameeeee]

I have POTS and am on the beta blocker metoprolol. It has definitely changed my life. I was diagnosed in February 08 and this september have started college and I know that without the metoprolol i couldn't be in college.

[7970989]

My daughter has pots and she was diagnosed in February of 2008 after a severe strep infection. I showed Chelsea your comments and she now has hope she will be able to go to college too. At this time she has to do her school work at home on Nova Net. She is having a difficult time dealing with this, she is 16 years old. Good Luck to you in College and Thanks for giving Chelsea hope.

[Lameeeee]

I'm glad I could help!

I have had it for two years after a surgery, mono, west nile virus, and adverse drug reaction.I only went to school 20 days out of my senior year because of the undiagnosed POTS then I finally had to go to Mayo clinic.

The trick is just to remember that even if it takes a few extra years, then so be it. Do whatever you need to make it work. Professors are all very understanding and accomodating if you let them know that you have a problem right off the bat.

[Lameeeee]

also is she on a beta blocker?

[7970989]

Chelsea is not on a beta blocker, however, the doctor mentioned beta blockers when we first seen him for this problem but never mentioned them again. I really don't know anything about beta blockers and I'm not sure how they help POTS patients. Could you share what information you have learned from your experiences. Chelsea read your comments and smiled. Thanks. Doreen

[Lameeeee]

:)

I'm suprised she's not on them. They blunt the messages from your brain to your heart that are telling it to speed up. Normally they are used in patients with high blood pressure but in low amounts they actually help the vessels constrict in combination with slowing the heart down. Mayo clinic perscribed Metoprolol to me back in February and they have worked wonders. They make me feel 70% back to normal.

Also salt and water help alot. Having lots of water increases your blood volume and the

[Lameeeee]

salt helps the body to retain the water. I've also found that lots of patients wear socks kind of like surgery socks that help your body to pump blood to your head easier. I'm going to look into buying some soon.

I still will have bad POTS days where I can't even get out of bed. And it's tough because no matter how much willpower you have, it's still so hard. You always feel like you only had 1 hour of sleep the night before. But I think she would love to take a beta blocker. I actually

[Lameeeee]

noticed a difference about 20 mins after the first dose and started crying because i actually felt normal for once and went and hung out with my friends that night for the first time in months! And like i said, I wouldn't be able to be in college without the medicine. I'm going to school for Surgical Nursing and it's going to take me longer than planned but I'm doing it!

If you have any more questions or Chelsea wants to talk about it, let me know!

[7970989]

Hi, I just wanted to say that Chelsea has to have her wisdom teeth removed immediately. The dentist is going to the surgery in the hospital. Did you have to have your wisdom teeth removed? Do you know of anyone that has had POTS and their wisdom teeth removed? Chelsea has been having lots of symptoms and I'm really worried about her and the fact that she has to have her wisdom teeth removed. I was telling my family how nice it was to have someone that actually understands POTS. Thanks,

[Lameeeee]

wow! I have had to have my wisdom teeth removed but that was before I had POTS. Why is it such an immediate thing? And why a hospital?

I had mine taken out at 16 and was too young so they were really high up and in my sinus cavity so I have hole from my sinus cavity to the back of my mouth that they attempted to fix in a surgery last year but it didn't work.

[calulu09]

MBT shoes also help a lot. they strengthen your calf muscles and force blood to your head

[calulu09]

my dad has POTS, and he started wearing medical stockings. they made all the difference in the world for him because they allow more blood to go to his head. he has had it for about a year now and he is getting so much better. he exercises 3 times a week and is going out and doing things a lot more than he ever did. i think there is hope and i really wish there were more doctors also. good luck with everything!

[cmilhn]

LISA, how are you doing we havent' heard from you in 9 months. I hope you are doing ok.

[charl567]

Great video. Very helpful!!!!!

[cmilhn]

I need help. I am on celexa 10 mg at night for the past 11 days it is not helping.i can not sleep at night i have no energy.my heart rate is still fast 135 when standing. i have to take a nap every day after being awake for 3-4 hours. i have headaches, blurred vision, and nausia constantly. can't eat during the day or i have to go to bed. i am either freezing or sweating. I feel like i can't do anything due to no energy & feeling so sick and tired. my doc says keep taking the meds. please help.

[BradolfHitler]

I have too been diagnosed with POTS and orthostatic hypotension. I find it very difficult to attend college and exercising is something i am pretty much unable to do. I was first diagnosed with Panic Disorder until i did the tilt table test with confirmed i had POTS. t School is so hard since i have a lot of brain fog and cannot concentrate. But im not going to let this thing get in the way of my future. No matter how hard it seems you need to keep living life to the fullest.. best wishes

[cmilhn]

lisa thank you so much for this video it realy helped my family to know about pots. i have pots to and i wonder how you are doing. this stuff is horrible and very difficult to deal with God bless you . i hope you have some "good Days".

[tas34brwn]

I have this too - too :)

[irishcatholicgirlie]

I have this too

[fballmen]

Hi! Good video! Tip: stop taking your meds for a while & see how you feel. Florinef is a steroid that keeps you in adrenal burnout, you will NEVER heal if you keep on taking it. Your autonomic nervous sytem is defective because of the extreme swings btw over & under activity of your adrenals. Try Hawthorn, Motherwort, reishi & a good multivitamin for 3 months. You'll be back walking at the end of those 3 months. It worked for many other POTS patients. Lots of Love!

[DefeatADDnow]

Are you saying that we should use those herbs to heal the adrenal glands?I know that reishi is used for the adrenals but I never heard that hawthorne and motherwort help heal the adrenals.

[fballmen]

Part I: Hi There! First of all, I hope you are doing ok, despite POTS. Actually, Hawthorn berries are said to help produce natural adrenalin. It's main use is for balancing the cardiocascular system. It brings high BP down, & raises low BP. It does a bunch of other things including improves tilt test results (look up German medical research on Hawthorn).

[fballmen]

Part II: Motherwort balances your hormones. Your adrenal gland functions are mainly based on hormones, so Motherwort helps a lot. Herbs are gentle and have rarely any side effects. It takes usually 3 weeks to 3 months to see full benefits. Good Luck to you!! It is a maze to chase THE solution that'll work for you. If what you have tried so far does not work, then maybe venturing to new things is the way to go. That's what happened to me. With all my support!

[DefeatADDnow]

That's fascinating.I've been getting treatment for hypothyroidism with Armour and its helping me.I know motherwort is used to calm hyperthyroidism.Maybe we we are both getting help by way of the thyroid gland.Are their any other herbs or nutrients you used?

[abbbrakadabra]

Did you know someone how hade hard POTS and used those herbs and gett better? It's to hard to by alls this in Sweden so I wonder if you know some page on internet where I can by all those herbs/product? Can you recomend me some teknik wich can help my husband? And how can I give him some hope and some posetiv picture of live?

[abbbrakadabra]

Hello!

I'm not so good in english (i'm from russia but leave in sweden) so I'm sorry if I writing wrong. My husband (22 years old) was diagnos by POTS for 6 month agou. But he had a tacykardia and all simptoms for 1,5 year. He realy suffered of it and when I looked at all videos here in youtube I realazed how MUCH he suffeder. I realy want to help him to be better.

[abbbrakadabra]

dose all those herbs (Hawthorn, Motherwort, reishi) realy help?

[jenniferashley99]

I have POTS and just recently completed a walking marthaon. I go to the gym everyday and I have a stable job. I dance-go see plays and enjoy life. I have been very sick but since I became active I have not been in the hospial once-it was two years ago. Don't be in mind frame you are bed ridden. YOU ARE NOT. Get off that couch and healthy. You are alive-start living like it. I don't take any medication and feel better than when I did. Good luck

[dipic7]

Unfortunately that might not be good advice for everyone as I'm sure there are varying degrees of severity or other complications. Personally I have not only POTS but orthostatic narrowing of blood pressure, orthostatic hypertension and Chronic Fatigue Syndrome. I have a very hard time walking around for more than 30 minutes at one time, each day.

You should definitely be optimistic and as active as possible, but you don't want to push yourself, especially if you have CFS.

[luminescentfeeling]

How can I contact the people who made this video please?

[RichardBri]

Hi, I have POTS too, I tested postive for Lyme disease and Babesia infection. Dr says treatment is now difficult due to delayed diagnosis. I tested negative a few times before I got a positive test for lyme. The test for lyme is no good. The leading cause of Dysautonomia is Lyme disease, much controversy has been emerging lately. UC Davis just published an article about how compicated the bacteria is. Get tested using Igenex Labs, they specialize in only Lyme and other Tick borne infections.

[carlos2004w]

another one here with POTS, it's just too hard to live with this

best wishes to all

[rlberko4]

hi lisa, i just watched your video and you are really an amazing person, to live with this disease every day and handle it the way you are is truly inspiring!!! i hope that there will be a cure soon and you can pick up your life, you really deserve it!! love to you and your mom xxoo randi b.

[AuntJR]

My niece, Desiree, has just been diagnosed with POTS...I promise to support her struggle until this is cured or a cure is found...I learned alot about this in the video and want to thank beautiful Lisa for sharing and will pray for her as well and many others who suffer with this disease...AuntJR

[ReineDeLaSeine14]

Awesome...thanks for sharing this with DYNA!

[MileyMay007]

Thanks for helping to spread awareness!

Great job!!

[madtownmama]

My 18 year old daughter has POTS and is also a member of DYNA. You two may have communicated in the past. Congratulations on your video. You are doing a great thing by getting the word out about POTS, DYNA and the need for a tilt table test to help get a diagnosis. I hope you see improvements in your symptoms soon!!! Things do get better! Take care, Mom of a POTS-y

[kberwitt]

Fantastic! I learned so much from watching this video. Well done, and I wish you all the best!

[stewbaca69]

great video! good luck!

[chumpro]

Very informative. There should be more research and care for this syndrome. Hopefully more people will become aware by watching this and other videos about POTS.

[shamyscool]

Great video!!!!!!