I've also recently been diagnosed with POTS and I cant tell you how relieving it is to find someone who's had similar experiences. i also frquently feel dizzied even when sitting, and see spots in my vision. among other symptoms of course haha. It took a year and so many doctors appointments to get a diagnosis. but it is so heartwarming to find someone like you that is so strong and brave in the face of this syndrome. Thank you so much for sharing your story
Aw, thanks so much! :) Even dealing with it for going on 9 years now, it still gets scary at times. Especially when I'm going through a bad flare and doctors don't seem to do anything for me. It's just kind of dealing with it the best that I can. I'm sure you know what it's like! ❤️
I was diagnosed with Pots after 2 and a half years of complaining about not feeling right. I had to quit my job due to it and afterwards I noticed lots of pain in my chest that can spread to my arm and even the hand. The way I was diagnosed was by a cardio who specialized in it and I stood up. My heart rate went up by 50+ in his office. It goes from 75-80 to 130-150 when I stand normally. I think the hardest thing for me is to accept its pots and not a life threatening issue. I thought I was having a heart attack several times due to the severity of pain and how it would spread. Basically the dizziness and pain just seem to always be here. I have plenty more symptoms but those 2 are pretty bad. I even feel like death after I eat. Im sorry you have to experience this :( Its just not fair how things turn out sometimes. I honestly dont know what Im going to do. Im a 23 year old man who had to quit his life because of this. If you have any suggestions I am all ears!
3:50 Yes, back in 2008 when my dizziness attacks started they talked about that hole and called it a perilymph fistula. They said there was no real way to know for sure and surgery to patch it up may not really be the treatment. I didn't get anything done and thought what they said about lack of evidence was right. I didn't want people doing exploratory surgery anyway. I got full vestibular testing which was negative. It was only after searching for 10 years more did I find out about dysautonomia and POTS.
Hi I kind of understand your video know I’ve had several fainting spells. 1st one was in 2001 2nd one was in 2012 3rd one was in 2017 4th one was in 2018 So I was also seen by a Cardiologist he said everything was fine I was seen by an ear doctor he said everything was fine I was seen by a neurologist she did an EEG, CT Scan, and EEG Telemetry, every came out fine after my 5 day stay at the hospital, so now the neurologist from the Hospital told me to get a Table tilt test done. Some of the symptoms i have are or i get are. I start seeing like flashing lights or flashing dots. Dizziness Sometimes stabbing sharp pains on one part of my head. I feel hot and cold from the inside of my body. Shakingness And then I just pass ou. Sometimes my heart feels weird. So I guess I’m going to be tested for POTS in 4 weeks 😩☹️😢 To tell you the truth I’m nervous about the test because I have no idea what to expect. Thank you for sharing your story.
I have a lot of the symptoms you mentioned. Could definitely be POTS. I hope the tilt table test gives you some answers. The test itself isn't that bad. The waiting and thinking about it leading up to the test was worse than the actual test for me!
Jade'sReproach Hollket. That's what my geneticist told me recently. I asked about IV fluids when a different doctor suggested it to and they said I can drink more water if I wanted to. 🙄
Chronically Hopeful Did your genectic testing get covered by insurance or did you have to pay out of pocket?? I can't believe I'm 34 and been chronically ill since 11 and none of my doctors ever mention genetic testing... Sometimes I feel like the doctors do not care. Our insurance just went up again to 1,768 in January so I wonder why healthcare is just going even more down the tube. I wonder if I should apply for disability but I just don't want to give up. I still have a degree to complete and I'm close to done! But these autoimmune diseases truly wear me down every single day. I hope you are having way more good days than bad 💗
Did you ever experience hard to breathe or it being really hard to take breaths when you're having a dizziness attack cuz that happens to me a lot and I think I might have pots but I don't want to be sure until I get an actual diagnosis
Actually, it seems like the dizziness and shortness of breath alternate. Usually when I'm really dizzy the breathing is okay, and when I'm really short of breath I'm not quite as dizzy. 🤷 However sometimes the shortness of breath makes me feel a little lightheaded or I see dots and spots.
@@nicktheveganchick I talked to my mom about possibly having it and I showed her your video and she told me that she had pots when she was younger and it kind of went away when she was 20 so I'm going to go into the doctor soon to get a tilt table test and I'm relieved that she could understand
No, no jaw issues. The balance problems did start when I hit my head, but I don't know if it's because of that or if I fainted due to the health issues I had going on way back then but just didn't discover until I was older.
I'm being tested for pots right now. I'm actually in the process of my 30-day heart monitor. I live in Elizabethtown. Are you far from Harrisburg? Id love to have a spoonie friend nearby.
![PoTS Explained & Chronic Illness Tips [CC]](http://i.ytimg.com/vi/1etxgERhkDg/mqdefault.jpg)
![PoTS Explained & Chronic Illness Tips [CC]](/img/tr.png)
I've also recently been diagnosed with POTS and I cant tell you how relieving it is to find someone who's had similar experiences. i also frquently feel dizzied even when sitting, and see spots in my vision. among other symptoms of course haha. It took a year and so many doctors appointments to get a diagnosis. but it is so heartwarming to find someone like you that is so strong and brave in the face of this syndrome. Thank you so much for sharing your story
Aw, thanks so much! :) Even dealing with it for going on 9 years now, it still gets scary at times. Especially when I'm going through a bad flare and doctors don't seem to do anything for me. It's just kind of dealing with it the best that I can. I'm sure you know what it's like! ❤️
I was diagnosed with Pots after 2 and a half years of complaining about not feeling right. I had to quit my job due to it and afterwards I noticed lots of pain in my chest that can spread to my arm and even the hand. The way I was diagnosed was by a cardio who specialized in it and I stood up. My heart rate went up by 50+ in his office. It goes from 75-80 to 130-150 when I stand normally. I think the hardest thing for me is to accept its pots and not a life threatening issue. I thought I was having a heart attack several times due to the severity of pain and how it would spread. Basically the dizziness and pain just seem to always be here. I have plenty more symptoms but those 2 are pretty bad. I even feel like death after I eat. Im sorry you have to experience this :( Its just not fair how things turn out sometimes. I honestly dont know what Im going to do. Im a 23 year old man who had to quit his life because of this. If you have any suggestions I am all ears!
Have you looked into reactive hypoglycemia? It's quite common in people with PoTS.
I'm being tested now. My bp goes low and my heart rate shoots up above 100+
Great video spreading awareness xxx
The Little Power Family Thank you. :)
3:50 Yes, back in 2008 when my dizziness attacks started they talked about that hole and called it a perilymph fistula. They said there was no real way to know for sure and surgery to patch it up may not really be the treatment. I didn't get anything done and thought what they said about lack of evidence was right. I didn't want people doing exploratory surgery anyway. I got full vestibular testing which was negative. It was only after searching for 10 years more did I find out about dysautonomia and POTS.
Yeah, it's always so hard to know what the right decision is going to be. Especially when you don't know the full picture of what is going on!
Hi I kind of understand your video know
I’ve had several fainting spells.
1st one was in 2001
2nd one was in 2012
3rd one was in 2017
4th one was in 2018
So I was also seen by a Cardiologist he said everything was fine
I was seen by an ear doctor he said everything was fine
I was seen by a neurologist she did an EEG, CT Scan, and EEG Telemetry, every came out fine after my 5 day stay at the hospital, so now the neurologist from the Hospital told me to get a Table tilt test done. Some of the symptoms i have are or i get are.
I start seeing like flashing lights or flashing dots.
Dizziness
Sometimes stabbing sharp pains on one part of my head.
I feel hot and cold from the inside of my body.
Shakingness
And then I just pass ou.
Sometimes my heart feels weird.
So I guess I’m going to be tested for POTS in 4 weeks 😩☹️😢
To tell you the truth I’m nervous about the test because I have no idea what to expect. Thank you for sharing your story.
I have a lot of the symptoms you mentioned. Could definitely be POTS. I hope the tilt table test gives you some answers. The test itself isn't that bad. The waiting and thinking about it leading up to the test was worse than the actual test for me!
May i ask how do deal with it?
Mean do you take meds? Do you use a medical bracelet?
Thank you for sharing this! You are incredible! We are always cheering you on!
+Fight Like A Warrior Aw, thank you so much! ♥️ That means a lot. 😊
Did anyone else get told the only thing you can do is drink water? More fluids?..
Jade'sReproach Hollket. That's what my geneticist told me recently. I asked about IV fluids when a different doctor suggested it to and they said I can drink more water if I wanted to. 🙄
Chronically Hopeful Did your genectic testing get covered by insurance or did you have to pay out of pocket?? I can't believe I'm 34 and been chronically ill since 11 and none of my doctors ever mention genetic testing... Sometimes I feel like the doctors do not care. Our insurance just went up again to 1,768 in January so I wonder why healthcare is just going even more down the tube. I wonder if I should apply for disability but I just don't want to give up. I still have a degree to complete and I'm close to done! But these autoimmune diseases truly wear me down every single day. I hope you are having way more good days than bad 💗
Did you ever experience hard to breathe or it being really hard to take breaths when you're having a dizziness attack cuz that happens to me a lot and I think I might have pots but I don't want to be sure until I get an actual diagnosis
Actually, it seems like the dizziness and shortness of breath alternate. Usually when I'm really dizzy the breathing is okay, and when I'm really short of breath I'm not quite as dizzy. 🤷 However sometimes the shortness of breath makes me feel a little lightheaded or I see dots and spots.
@@nicktheveganchick I talked to my mom about possibly having it and I showed her your video and she told me that she had pots when she was younger and it kind of went away when she was 20 so I'm going to go into the doctor soon to get a tilt table test and I'm relieved that she could understand
Yes I do !
Really weird question. But do you get jaw clicks ever or do you have TMJ disc displacement?
The thing that triggered my questioning was how you’ve been having balance problems since you hit your head.
No, no jaw issues. The balance problems did start when I hit my head, but I don't know if it's because of that or if I fainted due to the health issues I had going on way back then but just didn't discover until I was older.
I'm being tested for pots right now. I'm actually in the process of my 30-day heart monitor. I live in Elizabethtown. Are you far from Harrisburg? Id love to have a spoonie friend nearby.
I have pots
Are u doing dnrs?