What I Wish I Knew at the Beginning of My POTS Recovery Journey
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- Опубликовано: 20 июл 2024
- Download my free 3-day video masterclass to find out the top things that your doctor isn't telling you about POTS: mailchi.mp/2c90c8b32bfb/potss...
To encourage you to explore this important topic further, I've created a meditation and journal prompts for reflection. These resources can be found in my new POTS Resource Hub that you can access for free. This Resource Hub will also host other free resources that will accompany each RUclips video. All you need to do is register on the site once, and you'll have access to all of the resources as I upload them. It’s free.
To register for the POTS Resource Hub, simply click here: learn.ivintila.com/pots-resou...
Are you feeling overwhelmed at the sheer amount of symptoms, diagnoses, tests, and various therapies and medications that are out there?
Don’t you wish there was a POTS roadmap that you could follow?
What do you prioritize, and how can you move forward?
What are the top things to keep in mind?
I wish I had found some kind of manual online when I was struggling, but instead, I learned through trial and error.
I’ve shared only a bit of my story so far, but today I wanted to share the 5 things that I would have liked for someone to tell me at the beginning of my POTS battle.
It would have made things a lot easier, and it would've helped me progress a lot faster.
Today’s video talks about:
- monitoring heart rate
- the emotional changes I had to make
- what medication will and won't do
- healing with a genetic condition
- the path and stages of recovery
I hope you find it helpful.
If you liked this video, please give it a thumbs up, subscribe, and share it with others.
Come, learn, and feel supported in my private Facebook group:
/ dysautonomiavictory
#pots #recovery #chronicillness
Timestamps
0:00 - Intro
0:52 - Medication & remission
3:13 - Heart rate & symptoms
5:24 - Life has to change
7:27 - Health & absence of disease
9:29 - The stages of recovery
10:28 - Celebrate & acknowledge
Reminder: The information provided by Ioana Vintila is solely intended for informational purposes and is not a substitute for advice, diagnosis, or treatment regarding medical or mental health conditions. The views expressed on this site or any related content should not be taken for medical advice. Always consult your physician and do your own further research before making any decisions related to your health.
You may also find my interview with cardiologist Dr. Gupta on POTS useful:
• POTS and Dysautonomia:...
CONNECT WITH ME:
Website: www.ivintila.com
Facebook: / ivintila1
Instagram: / ivintila_
To encourage you to explore this important topic further, I've created a meditation and journal prompts for reflection. These resources can be found in my new POTS Resource Hub that you can access for free. This Resource Hub will also host other free resources that will accompany each RUclips video. All you need to do is register on the site once, and you'll have access to all of the resources as I upload them. It’s free.
To register for the POTS Resource Hub, simply click here: learn.ivintila.com/pots-resource-hub/order/
Hi Ionna I just discovered you through a RUclips link my brother sent me with dr York cardiology.. I just want to say thank you this is life changing to me as I was only diagnosed a6 weeks ago after getting covid in March this year.. so I am grateful I found you and your RUclips channel.. so helpful and full of great information more than anything what doctors are doing ..
I'm sorry to hear about the new diagnosis :( Thank you for your kind words. I truly do believe that information gives us power and empowerment, so I'm hoping to help spread the word as much as possible.
Hey how are you doing now ?
Glad to hear you are being realistic about the condition.
I'm 50 now, so I was having POTS when it was not a thing that anybody knew anything about, not that they know much now. But I was prescribed beta blockers and I could function really well with that for years. I probably have the hyperadrenic type of POTS, so I was able to work like a mad woman for two decades, always studied and worked both, got a Ph.D. and did managerial jobs. I just took more and more beta blockers to keep the heart rate, chest pain and migraines down to a bearable level.
When I started really crashing in my mid thirties the problem was that my body would not produce the heart rate that was required to keep up the blood pressure and that was when I started to go to the ER. So I really understand what you are saying about the heart rate of 80. It's a no no for being able to function. (Mind you, I do not have EDS, just 'regular' joint hypermobility that has gotten worse with age (obviously), so my POTS is less severe than those suffering from EDS have.)
In the end I started getting autoimmune symptoms, as in constant temperature (below 37.9), rheumatoid type joint pains. I had had 'burn out' type crashes before (as in not being able to walk to the bathroom for 5 weeks), but at this point the up-and-down cycle started to get worse. I could not work full-time anymore. I could sleep less and less, I was gaining weight. Allergies got hysteric. It all just became more of a struggle.
Now, the point is this: from hindsight no POTS patient should ever do what I did, as in do the maximum possible. The stress hormone is both the savior and the enemy. The stress hormones that keep up the blood pressure by increasing the heart rate will in the end make us sicker.
The psychological problem is this: When one is filled with stress hormones, one is perky and glad to do anything one is capable of doing when the exhaustion clears away. Doing that is a mistake but very hard to control given all the adrenaline and cortisol in the system. However, combating that joy of being finally able to do something one has not been able to do, is the hardest thing.
I've ridden the crash and burn cycles for over three decades now. Now I am at the cycle of whether I just vomit upon showering and leaving the house etc. or not being able to sit and vomiting during any officially relevant button I press on the internet or official calls I have to make. And I used to do international conferences, do global projects and lead teams.
Watch out. Better to be a less successful person in life than to be dependent on other people for one's upkeep for decades. And I say this with the best wishes to all of you who are struggling with a more severe form of this than I am. One can still be happy with POTS, but the happiness cannot come from accomplishment in the regular sense. That is poison to our system.
Wow, thank you for sharing your experience and your wisdom.
Your experience also shows that this is not a "light" condition. It must be taken seriously.
It's a really hard thing to go against the grain and do things differently than others, but in the long run, it pays off.
As cliche as it sounds, in these moments all you can do is listen to your body and gives it what it needs, and that usually means taking it a lot slower.
I'm sorry to hear about this long journey you've had. I'm hopeful that with more people (such as yourself) sharing their stories, there will be more awareness and more of a conversation about truly slowing down and not thinking that the pill/quick fix is all that's needed.
Hmm...have you been tested for histamine intolerance/mast cell activation?
I heard a girl with pots say this and it really hit home. Even if you are not productive you still have worth. My home stays a mess. I lay down most days to help my body not freak out (summer heat makes it worse). I felt like a failure and like a lazy slug all the time. I am still trying to make my brain realize that isn’t true.
Thanks for the info. Maybe you could make a video and talk about diet specifics, exercise, vitamins, etc. Just your journey. Thanks again for putting yourself out there to help. 😊
Thanks for the tip.
I've included a bit more about my journey and some specifics here: mailchi.mp/2c90c8b32bfb/potssecrets
But I'll make sure to have more videos on each of these :)
Vitamin B1 Deficiency was the cause of my pots
How did you know that, and which vitamin b1 you use😢
Thankyou for all of this Ioana, Im in the midst of the worst Pots crash, I think I have Eds too 👍🏽, this has helped lift my spirits as I wait to see a Cardiologist next week ❤️😘
Oof I'm sorry to hear that things are rough right now, but I'm happy the video helped lift your spirits up! I'll be keeping my fingers crossed for your appointment ❤️❤️
@@ivintila thankyou so much lovely ❤️❤️
Thank you for sharing
Hi how do you feel now? Do you still have symptoms? It help me to think positive it sounds stupid but that changed it in minutes! Talked to myself what I love in my life and it helped immediately!
I no longer qualify as having POTS. If I was to have a tilt table test or something like this, my body wouldn't react the way it used to! The palpitations and fatigue are gone.
Thank you for sharing! The connection between the mind and body is a powerful one, so it's great that you were able to tap into that.
@@ivintila that’s amazing
Awesome
Hi! I currently have POTS and was wondering what all you did to reach your recovery? Ive been in connect with a few people that have recovered also and have said magnesium, zinc, and vitamin b1 dissolved most symptoms overtime. Did you try any vitamins/supplements?! Thanks :)
Hi Alexis,
Thanks for reaching out, it looks like your research has already yielded some good results.
I like to split it up in two categories. Things that help short-term (various adjustments, electrolytes, soothing symptoms in the moment, cold water, etc.) and long-term adjustments which make a big difference, but take a bit longer. I cover the long-term ones in this 3-day video series: mailchi.mp/2c90c8b32bfb/potssecrets
The nutrients and supplements are somewhere in between these categories as they can make a big difference short-term as well, as long as they're not the only things that are implemented. For me, it helped about 20%, so that's quite a bit. All of the ones you listed tend to be deficient in those with POTS, so they're a great addition if you're deficient. For supplementing, I would recommend doing extensive labs to determine what's missing for you, as you would want to focus on supplementing what's missing. I have a post that talks a bit more about vitamin deficiencies which you might find useful: www.ivintila.com/post/pots-vitamin-deficiencies
I have read a lot of medical literature on POTS and one of the key abnormal findings in POTS patients is low red blood cell account. Nobody knows how it functions, but this is likely to be related to the idiopathic low blood volume. I have struggled, through my 30 years of having POTS, with losing iron (and calcium) from my body (as evidenced by low ferritin, not low hemoglobin) and thereby losing hair. And I basically eat meat and cheese.
Medical literature also suggests that if one has excess gut bacteria as evidenced by abnormal bloating, gas etc., that this gut bacteria actually eats iron, which then can lead to lack of iron in the body. Whether this plays a role in POTS is unknown.
Given our causes of POTS may all be different, I suggest you check out your ferritin levels. I think my body prevented me from losing more iron by having really weak menstruation (sorry). If you find your ferritin levels to be on the lower side, then one should take occasional copper and L-carnitine with the iron. It took me about 3 years to get my ferritin to average levels, so I suggest generic multivitamins on top of this.
Also, if you worried about gut bacteria or just generic exhaustion, you should test yourself eating a really low carbohydrate meal vs. a full carbohydrate meal and see how your heart rate responds to it for the following 3 hours. My doctors told me to go on low carbohydrate diet even if my blood sugar levels were perfect. These days, if I eat anything carbohydrate (pizza, pasta, rice, bread etc.) I will be in bed for 2-3 hours. Why? Because digestion of carbohydrates does not only require insulin but also cortisol and cortisol is a huge problem in this disease in some of its rarer forms (as in potential autoimmune type of non-function of cortisol receptors just like in diabetes type 2).
I hope this helps you to understand what your own body needs.
Great job, Ioana!
When you had problems standing, what were the symptoms?
Also, even though you're going easier on yourself, did you change your diet at all?
Thanks!
Hi! So when I stood up, I would get palpitations (160bpm), lightheadedness, dizziness, my vision would get fuzzy or black, shaky, pain that radiated from the heart to the left shoulder, left jaw, and left side of face. There might be something I'm leaving out but I think that covers it.
And yes! Diet is not the magic cure, but I would say it was 33% of the solution :) And also working on healing the gut, seeing what was going on (SIBO, etc.)
Thank you!. Healing the gut: Have you read Breaking the Vicious Cycle by Elaine Gottschall?@@ivintila
I just literally *just* took my first beta blocker yesterday. I have body aches, but it’s made me feel pretty good right off the bat. I’m fully expecting for the pill to not be a long time thing. Is joint pain, & muscle pain normal with beta blockers?
Great to hear that it's made a positive difference already! Mostly when you're not functioning that well beforehand, it can make a noticeable difference and improvement in symptoms.
Mhm, I think you'd have to check the leaflet that came with your medication for the side effects or ask your doctor. For me, it had the opposite effect (less pain) at least in the short term.
I am suffering from disautonomia with postua hypotension and severe fatigue. I am on fludrocortisone. Try to reduce the dosage. But couldn't.
Is it worth trying beta blockers or Meditrone
Hi Paul, this question is best answered by your doctor. Some people also switch and experiment until they find what's best for them.
can i ask how long did it take you to fully recover? is it possible to heal it even when i have this for 2years after covid and jab, but i wasnt treated, because i didnt know that its POTS,thank you
It is totally possible to get better/see improvements even years later. I've had clients who have been struggling for 10/15/20 years + and they got better.
I started having symptoms in 2008. It got better in 2009, and was okay (but not 100%) until 2013. In 2013, it got a lot worse every summer until 2017 when I was finally diagnosed. I started feeling better in 2020 and went off all medications in 2021 (felt at 90%) then. So that's a 13-year journey.
@@ivintila thank you 😊
Can someone help me? Im cencerd to have POTS.
My heart rate when laying down is like 65-70. Sometimes when standing up it goes really quick to 120, but its for like 2 seconds. But then it comes down to like 100 and it stays there for as long as i stand even for 1 hour. Im concerd to have pots cuz my heartrate goes up a lot when standing, but comes down really quickly after. (not to like 85 most of the time)
Someone know my chances to have pots?? No diziness, no fainting, no shortness of breath etc etc. Just the high heartrate.
Hi Mick, please share your concerns with your doctor. Bring a leaflet or other information to them as they may not be familiar with POTS.
For example, the following leaflet is quite good:
www.potsuk.org/wp-content/uploads/2021/10/Sept_21_covid_update_PIF_PoTS_on_a_Page_GP_guide_V2.0_docx_3_.pdf
Your symptoms could be POTS, but it could also be something else and your doctor would be the best person to determine what it is.
👍
I have a never ending headache and cardiological issues, is this possible POTS?
I would recommend speaking with your doctor about this. It could be, but it could also be other things that they might be better equipped to diagnose. For doctors specializing in POTS, you might find this list useful: www.dysautonomiainternational.org/page.php?ID=14
A headache and cardiological issues can be because of other things than POTS, like high blood pressure or structural problems in the heart (like valve problems). As said, the last thing one wants to do is diagnose oneself based on RUclips videos. Please check with your doctor. None of us with POTS, which is a relatively benign even if life altering condition at least for a periods of time, do want to suggest to others that theirs is not a more serious condition in life and death terms.
@@samhartford8677 thank you for sharing your insight
@@TheGuerillapatriot My pleasure. You take out of it what fits you.
How do you feel now and, can you walk now?
Pls reply🙏
Hi there. I feel perfectly fine now. No more palpitations, no more fatigue, no more nausea, etc. & I can stand :)
@@ivintila how did you manage POTS?pls explain maa'm🙏
Actually i am from india and, here no doctors to treat POTS🤦♂️
Pls give some tips and i should manage my self👍
@@ivintilado u take any medicine for pots
Did you ever have trouble with narrow pulse pressure?
Yes, I did! I didn't check my blood pressure too often, but I noticed that a few times and on the Holter monitor as well.
Hey! When were you diagnosed ? How long did it take
Hi Katie! I was diagnosed in 2017. But I started going to doctors in 2013 for my symptoms...
I have pots and I have it bad my walk is not good my blood pressure is always high heart paltions having trouble with my stomach and always tired pains in my joints
We are treated so unfair in the beginning of diagnosis.
If any vitamin B deficiency is to blame, get tested for the MTHFR gene mutation. I have it. My body cannot methylate vitamin bs on its own. So i have to take methylated vitamin B vitamins. Regular vitamin Bs actually make me feel worse. You can get tested with a simple cheek swab.
Thank you for this but don’t mean to be rude you are very fast talker you should be a little slower for people like us that English is second language ❤
@leilamoon5879 thank you for the feedback. this video is a bit older I hope that some of the newer videos are a bit better. I've been practicing speaking slower :) in the meantime you can turn on the closed captioning. I hope that helps.