Newly Diagnosed

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow’.” - Mary Anne Radmacher

If you have been newly diagnosed, recently diagnosed, or just want to learn more about what can be helpful, you are in the right place. : ) We wanted to have a dedicated newly diagnosed section because it can be a very confusing, overwhelming, and difficult period of time for many. Whether it involves a great deal of dismissal from friends and/or family, dismissal from providers, trauma, loss, grief, and/or navigating new symptoms that have changed so many things for you, we want to offer as much support, guidance, and help as we possibly can. This isn’t a journey we feel anyone should be navigating on their own, and our community is here; we are here to help guide you, here to offer you added support, love, warmth, compassion, visibility, and understanding. Below is a list of commonly asked questions you can click on; we have provided answers to each with links to other sections if appropriate.

Applicable Questions and Answers Listed Below:

I don’t know what to do and feel so overwhelmed. Where do I even start?

Hi there : ) It’s ok to feel overwhelmed and even scared. You have found a community that cares about you and we will do whatever we can to offer added support. Relax those shoulders, unclench your jaw (if it is clenched), and take one, nice deep breath if you are able, where you inhale for a count of 4 seconds, hold for 4 seconds, and exhale for 6 seconds. Grounding ourselves in this way throughout the day, and checking in with ourselves, is really important.

We know how overwhelming this journey can feel, especially in the beginning. Those in our community who have been navigating POTS for years will tell you how difficult it can be in the beginning because you are still really trying to figure out what helps, what makes things worse, and you are adjusting to all of these new changes. You may experience a number of relationship shifts and changes, people around you may not be as willing to learn about POTS in the beginning, and it can feel like you are hitting obstacle after obstacle. It may be overwhelming to go through our entire site at once because we have a LOT of content here. Because of this, perhaps you can make a list of the top 10 areas you are most interested in learning about and start there, or you can send us a message asking us where certain content is located. We put together a Roadmap which may help a little bit (or at least we hope it will). So remember, unclench that jaw, cozy up with a blanket, cuddle with an animal if you have one, and know you aren’t alone. We are here.

These symptoms can be really scary for me and I don’t know when I should go to the ER or what to do. When I go to the ER they dismiss me with anxiety and now I just feel so stuck. What do I do?

We first want to acknowledge how scary the symptoms can be, especially in the beginning. When all of a sudden your heart is racing when standing, you are becoming very dizzy easily, experiencing presyncope or syncope (near-fainting or fainting), or experiencing debilitating fatigue, it can be really hard to figure out what is wrong and when you should be concerned. Many in our community go to the ER multiple times before being diagnosed because of how many new symptoms they have, and how new and frightening they can be! Of course, it is very important to make sure you are properly tested for other conditions, but once you are diagnosed with POTS, it is important for you to still develop an ER protocol with your care team. This protocol can include signs and symptoms they find concerning, that you should be mindful of, when they think you should go to the ER, and what documents you can bring with you to the ER. Some of these documents can include letters from them that explain your diagnosis to help minimize the risk that other providers who are less familiar dismiss you or don’t give you access to what you need. You can include some of these documents within a medical passport, which you can also develop to bring with you to appointments or the hospital. See our Medical Passports section for an explanation and a PDF template we developed as a starting point for you to personalize to meet your own specific needs.

I have no idea what flare-ups are and what people mean by them. Will I get flare-ups? What will cause them?

We will start by saying that you are not alone! Many individuals in our community were not aware that they could experience flare-ups in their condition even after being diagnosed, and were left to determine the patterns and learn about flare-ups on their own. We don’t believe this is right or acceptable! Flare-ups refer to temporary periods of time when your symptoms and condition may worsen, and they are often preceded by triggers. Which triggers lead to flare-ups for individuals in our community can vary significantly, but there are also many similarities. Some of the more common triggers include illnesses (like viral infections), menstrual cycles (when applicable), hot weather or environments (examples can include summer heat), physical exertion, not getting enough sleep, and/or stress. Sometimes there can be a cumulative effect where the gradual combination of all of the above contributes to a flare-up, but it really varies from person to person. The length of flare-ups also varies! The key here is to learn more about your body, what causes flare-ups, what signs might present beforehand that allow you to take earlier actions to minimize the severity, and what you can do during flare-ups that will help you most. Developing a flare-up action plan with your medical team can be very helpful, and we put together a template to help you get started! To learn more about this and to access the template, see our Managing Flare-ups section.

Ever since I developed POTS, many people around me I thought I could rely on have been distancing themselves, and I feel so alone. Why is this happening and what do I do?

We first want to acknowledge how painful this is for so many reasons. Many in our community find that some in their lives who used to be supportive begin turning their backs when they need them most. The reasons why this happens can vary, but it is never ok and no reason is a good reason in our opinion! Some don’t believe POTS is real, some may question the severity of your symptoms, or some may become annoyed or frustrated and have an unwillingness to learn more. This can lead to a lot of changes that involve the loss of some relationships that become less healthy for you, and the addition of new relationships you find are much healthier and fulfilling. We know how hard this change can be for so many reasons. The last thing any of us want when navigating a new diagnosis is to begin having difficulties with some of our relationships, it can add so much undeserved pain. This is one of the reasons why we make sure our messages on Instagram are always open and respond (unless inappropriate comments are made, we do have policies specific to that), we always do our best to respond to comments within our Instagram page, and we always respond to emails when members in our community reach out. We want to help support and guide you through this journey as you become more acclimated and find those people you can trust. We believe it will happen, even if it takes time.

Some daily tasks have become very hard for me, like showering. How do I make it a little easier?

Completing daily tasks can become more difficult for some and can vary based on how severe symptoms are, and can even vary on any given day! Because of this, we developed a Tips and Tricks section which we will be continuing to add to. Right now the sections we developed are entitled: POTS Stations, Fitness Trackers, Bathing, Navigating Heat, Pacing, Sleep Habits, Checking Vitals, Morning Routine, Brain Fog, Helpful Items, The Holidays, and Medical IDs. To access these sections, click here.

My energy levels have changed since developing POTS, so now when I overdo it I feel very sick afterwards. How do I learn how to adapt to this?

This is definitely something that takes a lot of time, patience, and practice. Even those in our community who have navigated this condition and other co-occurring conditions for years would tell you that they still may struggle with this from time to time! We recommend reading about the spoon theory within our Occupational Therapy section, and we also recommend reading about Pacing to help you slowly adapt. Our Self-compassion section may also be helpful, so you can practice showing yourself added kindness and compassion through the process. It is ok if it takes time, that is completely understandable.

I feel like everything has crashed around me and I feel lost and overwhelmed with grief. Is this normal?

As painful as this can be, yes, this is often something that is experienced by many in our community, understandably! There can be a lot of loss experienced, a great deal of change, and it can feel overwhelming especially if you don’t have enough support. Given the frequency of grief experienced within our community, we developed a Grief and Grieving section. Within this section we talk about why individuals in our community can experience so much grief, why grieving is important, and how individuals in our community can grieve in a healthy way. All of these are very important components! As with most sections, we will continue to make changes and add to sections in time, but we still hope the amount of content available provides you with the support you need right now.

I am really struggling with my mental health and even having some suicidal thoughts. I am scared to talk about it. How can I get help? I am just in so much pain.

As hard as it may be, it is brave and courageous to get help, and we can assure you that so many want to help even if it doesn’t seem like it right now. We developed a Suicide and Crisis section because the incidence of suicidal ideation within the POTS community is higher than in the general population. Many in our community often don’t receive the support they need and deserve while also navigating a great deal of grief, loss, pain, and even isolation; this is why we are here. We want to remind you that you matter, you have purpose, this world needs you, and you are loved. Please reach out to someone who can help you by clicking here to access our crisis resources. Although we tried to be inclusive of the geographic locations where many in our community are located, it is possible we were not able to include all given our international presence. If your location is not listed, please reach out to a crisis center or emergency services in your location to ensure you access the proper support you need. If you are struggling with your mental health but are not in crisis, there are other sections that may be beneficial within our Mental Health website sections, but we also recommend that you reach out to a mental health professional. That added processing and support can be very helpful, beneficial, and important.

How can I help my family and friends learn more about POTS so they can be more understanding?

Helping family and friends learn more about POTS is really important! The hope is always that they are open to learning more and it is wonderful when they are. : ) You can share our website with them and/or direct them to the Friends and Family section. They may also benefit from other sections but that may be a good place for them to start.

How can I help navigate relationships that have become more difficult since developing POTS?

Although it can be most beneficial to work with a mental health professional specific to this, we did put together a Navigating Relationships section which we also hope provides you with some added support. This section will be completed over the next few months, and we will make an announcement!

How do I navigate medical gaslighting in medical appointments? I have been really hurt by many providers, so when I am in appointments now, I freeze and struggle to stand up for myself.

This is very difficult and the freeze response is not uncommon either, you certainly are not alone. Often this can occur secondary to medical trauma, as some trauma responses include the fight response, freeze response, and flee response. To learn more about medical trauma within our community, click here. To learn more about medical gaslighting, signs of medical gaslighting, and how to navigate medical gaslighting, click here.

How can I manage my symptoms better? I don’t feel like my medical team really knows what to do.

Managing symptoms can be very tricky and require a lot of trial and error; when working with your medical team to help you develop a plan that is best, it can certainly feel exhausting. We developed the Managing Symptoms section to review common non-pharmacological and pharmacological treatments which research has demonstrated can be helpful for some in our community. We must emphasize that given the significant variation, and possible co-occurring conditions which could influence care, this section is meant to be used as a guide to inspire conversations between you and your medical team.

How do I figure out if I have these other conditions like MCAS, EDS, and others?

It can be difficult to access providers who are familiar with these conditions so you can be properly diagnosed and access proper treatments and therapies, but it is not easy. As many providers familiar with dysautonomia are often familiar with these conditions, seeing a dysautonomia specialist can be a helpful first step. Another option is to visit our Co-occurring Conditions section and talk to your PCP or a specialist you trust about your concerns, why you feel you may meet certain diagnostic criteria, and see if they can also help you/diagnose you.

How can I meet other people with POTS?

Although we have a great community on our Instagram page where those in our community have been able to connect with other people with POTS, we don’t currently have a support group. Though we do plan on developing support groups in the future (12-18 month goal), it is not something we currently have available. Because of this, we would recommend looking to other available support groups where you can meet others with POTS! These can be accessed here through Dysautonomia International or the Dysautonomia Support Network.

How is this going to impact my ability to be a parent?

We understand how overwhelming it can be to have this new diagnosis (or potentially new diagnoses), while also navigating your responsibilities as a parent. There can be added grief and difficulties associated with this change, including grief specific to how parenting may look different than you had imagined or envisioned. Because of this, we developed a Parenting with POTS section which we will continue to update and add to. We hope what we have now is still beneficial for now. : )

Will I still be able to get pregnant?

We receive a number of questions specific to pregnancy and POTS, so we actually put together a section specific to this that can be found here. This section will review not just this question, but 11 other common questions individuals in our community often ask. All questions are answered through our research, using cited studies which can be accessed at the bottom of the page.

Sometimes the thoughts I have are really unhelpful and unhealthy. How can I learn how to reframe my thoughts?

This is often much easier than it sounds! It is wonderful that you have this insight into your thoughts and what has been coming up for you. Often it can be most challenging to recognize these thoughts and to also recognize when they are unhealthy and unhelpful. We did develop a Reframing Thoughts section with many examples of common thoughts experienced by individuals in our community and options for reframing, but this is best done through the use of cognitive behavioral therapy. If you look through this section and feel it is something that could be helpful, or if you struggle with unhelpful and unhealthy thoughts, working with a cognitive behavioral therapist may be an option worth considering if financially feasible.

Why did I develop POTS and will it always be this bad? Will I ever feel better?

We understand how difficult this journey can be at times, especially in the beginning. Although there are many potential POTS triggers, you can learn more about potential causes within our What Causes POTS section. Though we can’t speak to what the future holds, we will say that many in our community once able to access a proper regimen and treatments, are able to make improvements. How much improvement depends on so many different factors, including various co-occurring conditions individuals may have in addition to POTS. This being said, researchers are tirelessly working to understand the underlying mechanisms and develop insight more effective treatments. We are very hopeful and like to believe that with the amount of research currently being done, and with funds raised for future research, we will have access to treatments that will significantly help everyone in our community.

Why did a COVID-19 infection trigger my POTS?

We first want to speak to how painful this can be and reassure you that you are not alone. Many in our community developed POTS after COVID-19 infections, a diagnosis that is within the “Long COVID” umbrella term. It can be an extremely isolating and difficult journey at times, that we want to speak to and recognize. We see you, you’re not alone, we are here to help, and we see what you are navigating each day. Viral infections have been known to cause approximately 50% of cases of POTS, and there are a few theories and hypotheses specific to proposed mechanisms. To learn more please see our What Causes POTS section and COVID-19 Infections section.

Why did the COVID-19 vaccine trigger my POTS?

We want to first apologize that you had an adverse reaction to the vaccine that led to the development of POTS. It can be very painful and upsetting when something you hoped and trusted would be helpful to protect you, ends up causing you harm, and you aren’t receiving the necessary support, answers, or acknowledgement. It has pained us to watch how those experiencing adverse reactions have been treated, often minimized, pushed to the side, or not believed. We believe you and we see you. We do have individuals in our community who developed POTS after a reaction to one dose, two doses, or booster doses of the mRNA vaccines. Although we do view them as very important public health tools that have been effective in reducing COVID-19 morbidity and mortality, we also must recognize that like with anything foreign we introduce into our bodies, there can be risks. Making blanket statements that vaccines are always safe is not accurate, as other vaccines have been shown to trigger POTS in some, specifically the HPV vaccines (Tomljenovic et al., 2014). Vaccinations can unfortunately trigger the development of POTS for some. Although the exact underlying mechanism is still unclear, researchers believe there may be an autoimmune component for some individuals (Reddy et al., 2021). Researchers do believe that immunological stressors can trigger POTS, so this may provide us with some insight. It is important to note that despite this known link, many in our community are still able to receive vaccinations safely, though they may experience some temporary flare-ups in their underlying conditions. We suggest working with your team to develop safe protocols that can be followed if medically cleared to receive future vaccine doses, and to discuss what vaccines they feel are safe for you overall. Given that vaccines can also trigger POTS flare-ups, developing a plan with your medical team specific to navigating these flare-ups may also be beneficial. Although vaccinations are known triggers, viral infections are as well; therefore, it is important for your medical team to assess the risks and benefits associated with each decision, and discuss those openly with you. To learn more about what can cause POTS, please see our What Causes POTS section.

What are some items that could help me?

Although we are all different, experiencing variations in POTS severity and potentially other co-occurring conditions, many in our community were asking our team for a list of helpful items we like! Because of this, we put together a list of items that can be accessed here and we will continue to add to it each month. We must say, however, that we can’t ensure the products will be helpful for you. A number of the products should be passed by your medical teams (examples including electrolyte solutions and compression garments), prior to purchase and use to ensure they are safe and recommended for you.

Sometimes my symptoms get randomly worse and it can be really scary when I don’t have what I need. What can I do?

This can be really difficult, without a doubt. Not having what we need when our symptoms worsen, especially when we are not at home, can be frightening. Feeling presyncopal when at the grocery store but not having water with you, or feeling faint when outside but not having cooling items with you, can certainly be scary. Having to plan ahead to prepare in case this occurs is an adjustment that takes some time, but the proactive preparation really can certainly help. We recommend looking at our Daily To-go Bags section, Traveling with POTS section, and our POTS Stations section within Daily Tips and Tricks.

I feel like I will never be able to travel again. Is this true? Can I still travel with POTS?

Although traveling may look different for some in our community, especially because of COVID-19, traveling is certainly still an option for many. If you would like to learn more, we created a Traveling with POTS section which we will continue to expand upon as well. As always, let us know if you have any questions!

Why do so many people in my life keep dismissing me and telling me that POTS isn’t real? Why is this happening?

First, we want to apologize that this has been your experience. The last thing we need when navigating a diagnosis like POTS is to have people around us minimizing our symptoms or dismissing them in very painful and hurtful ways. POTS is real, very real, and impacts many just in the United States alone (Shaw et al., 2019). The incidence is also on the rise given the number of individuals in our community who have developed POTS after COVID-19 infections or adverse vaccine reactions, and the number of individuals with long COVID who are being diagnosed with forms of dysautonomia as a whole (Larsen et al., 2022). For a long time, there was a great deal of misinformation specific to POTS, and there has been a lack of awareness and proper education within the medical community for years. To make matters even worse, many POTS symptoms are “invisible” to others, meaning that a lot of what you experience others can’t see. To them, perhaps they think you look fine when you are actually struggling quite significantly. When others don’t understand something, they can be quick to dismiss. They may feel uncomfortable or land in a space that involves a great deal of denial. It is important to know that although this is experienced often by individuals in our community, this doesn’t make it right. In fact, it is very harmful! We don’t believe that anyone with these illnesses, or any illness for that matter, should be dismissed. Your word and experience should be trusted and those around you should be doing what they can to learn more, listen, and support you. If this has not been your experience, it will be important for you to work on setting healthy boundaries, potentially joining support groups (information can be found above with question 14), meeting people within our Instagram community, joining other support groups mentioned above, and/or considering working with a mental health professional as well. Having that added support is crucial, especially when you aren’t getting it from those around you. As a reminder, we are also always here to offer words of encouragement, love, and added support.

People talk about having a medical passport. What does this mean?

Medical passports are wonderful tools! The idea behind having a medical passport is that you have helpful documentation you can keep with you in the event that you have an appointment or need to go to the hospital. Since there are so many providers who are not familiar with or who don’t understand conditions frequently seen within our community, having a medical passport with you can be a helpful way to advocate for yourself and your needs. Including letters within it from specialists you trust can also be important. Please see our Medical Passports section for a longer explanation and template we put together for you which you can personalize!

Do I need a medical ID? What do I put on it?

Many in our community can find that having a medical ID is beneficial. Ultimately, it should be a decision made and discussion had between you and your medical team, but we did put together a piece specific to this which you can find here. We also have an example of one within our Helpful Items section.

Can vaccines trigger flare-ups? What can I do?

Yes, some in our community can experience temporary flare-ups after receiving vaccinations. Given that the flare-ups we experience during and after viral infections can be significant for some, many in our community work closely with their medical teams to receive guidance specific to how they can be vaccinated safely. If it is decided that receiving vaccinations is best for you, we do recommend developing a flare-up protocol with your team which you can use just in case! This flare-up protocol is something you could use for flare-ups associated with other triggers as well, such as viral infections, lack of sleep, or other triggers that you know can flare your symptoms.

Where are some supportive quotes or positive affirmations I can look at, even some things to make me laugh?

These can all be very helpful! We put together some of our supportive quotes, positive affirmations, and funny Instagram posts, all of which can be found under the Brighten Your Day tab.

Will I have to change jobs now? How can I work?

This is a difficult question to answer as it can vary so significantly from person to person. Some in our community may be unable to work and need disability assistance given the severity of their symptoms. Others may be able to work, but working for them requires a career change to ensure they have more flexibility and/or can work from home. Others may be able to work within the same career with accommodations. Lastly, some may be athletes who are able to return back to the field, courts, or pool after intensive treatments and physical rehabilitation. We will say that being able to properly answer this question also requires taking into consideration other co-occurring conditions, as all aspects of your health you navigate daily must be considered. We developed a Working with POTS section, where you can read stories submitted by individuals in our community who are working with POTS, and we will continue to add new submissions as they are received. There are submission links so that you can submit your story as well! Because some in our community do struggle financially secondary to work restrictions or being unable to work, donations received will go towards the development of scholarships, stipends, care packages, funds to travel to appointments, and many other forms of assistance.

How can I feel more hopeful?

We all deserve and need to feel hopeful! It can be more difficult on some days, and that’s understandable. We developed a few sections within our Suicide and Crisis section that are designed to help with this; these sections include the I Need To Feel Loved and Cared For Right Now and Holding Onto Hope sections.

As with all of the content on our website, it is designed for you. : ) So! If you have other questions that you would like for us to be able to answer, although we can’t provide medical advice, we are always happy to immerse ourselves in the research and provide you with as much helpful information that you can share with your medical teams to discuss as is possible. So please don’t hesitate to reach out and let us know! You can do this by sending us a message on Instagram (link can be found at the top right portion of our webpage), or by sending us a message here.

Sources:

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Blitshteyn, S., Poya, H., & Bett, G. C. (2012). Pregnancy in postural tachycardia syndrome: Clinical course and maternal and fetal outcomes. The Journal of Maternal-Fetal & Neonatal Medicine, 25(9), 1631–1634. https://doi.org/10.3109/14767058.2011.648671

Bhatia, M., Kavi, L., & Nelson-Piercy, C. (2018). Postural tachycardia syndrome and pregnancy. The Obstetrician & Gynaecologist, 20(2), 119–123. https://doi.org/10.1111/tog.12478

Brown, H. K., Wilton, A. S., Ray, J. G., Dennis, C.-L., Guttmann, A., & Vigod, S. N. (2019). Chronic physical conditions and risk for perinatal mental illness: A population-based retrospective cohort study. PLOS Medicine, 16(8). https://doi.org/10.1371/journal.pmed.1002864

Corbett WL, Reiter CM, Schultz JR, Kanter RJ, Habib AS (2006). Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report. Br J Anaesth ;97:196–9.

Fedorowski, A. (2019). Postural orthostatic tachycardia syndrome: Clinical presentation, Aetiology and management. Journal of Internal Medicine, 285(4), 352–366. https://doi.org/10.1111/joim.12852

Glatter KA, Tuteja D, Chiamvimonvat N, Hamdan M, Park JK. (2005). Pregnancy in postural orthostatic tachycardia syndrome. Pacing Clin Electrophysiol 2005;28:591–3.

Kanjwal, K., Karabin, B., Kanjwal, Y., & Grubb, B. P. (2009). Outcomes of pregnancy in patients with preexisting postural tachycardia syndrome. Pacing and Clinical Electrophysiology, 32(8), 1000–1003. https://doi.org/10.1111/j.1540-8159.2009.02430.x

Maghami, M., Shariatpanahi, S. P., Habibi, D., Heidari‐Beni, M., Badihian, N., Hosseini, M., & Kelishadi, R. (2021). Sleep disorders during pregnancy and postpartum depression: A systematic review and meta‐analysis. International Journal of Developmental Neuroscience, 81(6), 469–478. https://doi.org/10.1002/jdn.10118

Morgan, K., Smith, A., & Blitshteyn, S. (2022). Pots and pregnancy: A review of literature and recommendations for evaluation and treatment. International Journal of Women’s Health, Volume 14, 1831–1847. https://doi.org/10.2147/ijwh.s366667

Muchanga, S. M., Eitoku, M., Mbelambela, E. P., Ninomiya, H., Iiyama, T., Komori, K., Yasumitsu-Lovell, K., Mitsuda, N., Tozin, R. R., Maeda, N., Fujieda, M., & Suganuma, N. (2020). Association between nausea and vomiting of pregnancy and postpartum depression: The Japan Environment and Children’s study. Journal of Psychosomatic Obstetrics & Gynecology, 43(1), 2–10. https://doi.org/10.1080/0167482x.2020.1734792

Mughal, S., Azhar, Y., & Siddiqui, W. (2022). Postpartum Depression. National Library of Medicine.

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Powless, C. A., Harms, R. W., & Watson, W. J. (2010). Postural tachycardia syndrome complicating pregnancy. The Journal of Maternal-Fetal & Neonatal Medicine, 23(8), 850–853. https://doi.org/10.3109/14767050903265089

Ruzieh, M., & Grubb, B. P. (2018). Overview of the management of postural tachycardia syndrome in pregnant patients. Autonomic Neuroscience, 215, 102–105. https://doi.org/10.1016/j.autneu.2018.02.002

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Awareness for POTSies was founded in 2021. This website was developed with love and a great deal of time and commitment to our community. When sharing any content we developed, we ask that you cite our organization appropriately, as a great deal of work made this possible!