Patients with autonomic dysfunction such as POTS often have a very difficult time dealing with chronic fatigue and pain. Despite the multiple treatment options, many treatments are limited and patients still struggle to maintain a normal quality of life. Unfortunately, this may lead to disruption of routines such as going to school or participating in social activities.
POTS is typically highly frustrating for both patients and their families. The time taken to just get a diagnosis can be very long, usually with a lot of useless medical interventions and tests along the way. Symptoms may often be dismissed simply because doctors are not familiar with POTS or its symptoms and they don’t know how to evaluate for it or treat for it. This is frustrating for both patients and their families. Therefore, once the diagnosis of POTS is finally made there is a lot of relief.
The problems associated with a misdiagnosis of POTS are not trivial. Missing school due to untreated symptoms can often lead to missing opportunities to advance academically and thus missing out on pursuing chosen careers. Often lengthy periods of time taken out from school can lead to schools considering this as truancy and even forcing court involvement into what is seen as neglect. For this reason, education of school and other officials is important.
The road after a diagnosis is long and frustrating also. Once a diagnosis is made and a treatment plan commenced there may be an initial improvement in symptoms, however, some symptoms may continue to be present. In addition to patients having a reduced quality of life, parents and other family members also experience significant difficulties, as the POTS will become a central part of the family life.
Decreased participation in physical activities can lead to physical deconditioning which is known to lead to worsening of the symptoms. Decreased participation on social activities can lead to social isolation, and subsequent lowering of confidence. This is made worse by the fact that POTS patients may avoid social activities because they are anxious about symptoms occurring.
The initial goal of a POTS treatment program is to improve symptoms and increase quality of life. But it’s important that the goal is to return POTS patients to a normal quality of life that involves returning to usual work and social activities. Treatment of POTS is not based around any single medicine, but rather an entire lifestyle change. This involves alterations in dietary and sleep patterns. Avoiding triggers, learning to manage symptoms and altering daily routines are key. Initiation of a gradually structured exercise program is critical. Initiation of medicines may be required, and often a trial and error approach to see which ones work and which ones are tolerated without side effects.
The fact is that these goals can only be achieved by the input of care teams experienced in the management of POTS. These teams should be aware of the challenges faced and experienced in individualizing care. For those patients with a predominant contribution of chronic pain to their symptom, comprehensive pain rehabilitation programs are key. Support groups may also be a useful component in a care plan.
The good news is that whereas years ago there was hardly an acknowledgement of the existence of POTS, there is now a large body of medical literature that has highlighted not only the condition, but also the fact that it is relatively common. It is also proven that there are treatment options that can lead to a significant improvement in the quality of life for POTS patients and hope that the majority of POTS patients can achieve a return to normal or almost normal functioning.
To find experts in POTS around the United States check out XpertDox.
Great article, very informative! I have been suffering with these symptoms since October. I have seen a cardiologist and had tests run. No heart problems! Had begun to feel better and then boom, back again.
Does anyone know how to release symptoms without prescription medications?
Does PoTS lead to decreased efficiency of brain?
I have POTS and have been dealing with it for six years. I still experience times when my brain is foggy, forgetful, and just plain out of it. These times I am just not mentally sharp at all. It’s better now than it was a few years ago.
I went through diagnosis in highschool. It was so hard. I knew something was wrong but explaining it was impossible. I had a dr tell my parents i was passing out to get attention. Finally a dr checked my heart rate upon standing and then schedule a tilt table test and other things. I finally had a diagnosis but treatment is nearly impossible. One cardiologist i saw said its not a real disease. Another said ive just labeled myself as sick so i am sick. Ive lost jobs over this. No one gets how hard it is. On the outside nothing is wrong. No one sees the inside.
I am sorry that you have had inept and close minded doctors! My daughter has suffered for a couple of years and was hospitalized because her heart rate was very high…160 to 180 all of the time and had passed out. The doctors miss diagnosed her for 6 months. I put in all her odd symptoms and POTS came up. We live in NJ so I did a search for docs that treat this. Only two doctors in NJ specialize in this. I dont know where u live but thats what I would suggest. Search Cardiologists that treat POTS syndrome. The treatment involves supplements meds diet changes and he said it may take a couple of years for her to feel more functional.
Dont ever give up. Good luck and sending healing hugs!
My son is 15 and I am having a hell of a time getting him to change his lifestyle. Even though he feels so bad and we are I. The ER because he is feeling like he is having a heart attack or his heart rate is to slow and he thinks he’s dying. I still can’t get him to eat properly, sleep less or exercise more. He used to be a star hockey player and now he just can’t. It’s so hard trying to explain at the hospital to nurses and doctors. I’m so frustrated and wondering if you found a support group or how you felt with it? Also did you grow out of it?
Hello my 15 yr old daughter has just been diagnosed with PoTs as well.
Yes it has been so frustrating! She was a competitive dancer and has lost her year because of symptoms. She is so frustrated and hurting it’s almost impossible to get her out of bed and moving never mind to school. She is an AP student as well. She has started sodium intake as well as 4 litres of water a day. Hopefully this helps. I know this is new to her and she will eventually start to fight for her improvement by making lifestyle changes. Hang in there they are tougher than we know!
Hi just read you are looking for a support group. Iv joined one on fb. Great info and links. It’s a horrible condition. My son is 19 was diagnosed last October. He also has bradycardia from an ablation 12 years ago His heart goes as low as 30 bpm one or twice 26/27. Scary. Hope you get on fb and join group. Best of luck x
Hello, I’m teenage girl living with POTS. I had a similar experience like your son. I used to play softball, but I had to stop for awhile because of my symptoms. Once I stopped physical activity my symptoms were horrible. I felt like as if I was dying and all I could do is lay down. I promise you it will get better. I definitely recommend talking to your pediatrician and ask for a recommendation for a cardiologist if you have not already. On this website there’s a lot of information on how to deal with POTS and ways to lessen the symptoms, so I’m not going to waste your time by telling you in this comment. I never found a support group, but I also never looked for one. I work hard with my exercising and I can keep up with my peers. I didn’t feel like I stood out and I didn’t have much problems emotionally dealing with this. I just socialized with my friends normally and my life didn’t change that much. You just gotta stay strong and continue to do what you love. Also, I had a doctor tell me some people grow out of this but ive had a doctor also tell me that it’s rare to grow out of it. Good luck with you and your son! Hope my comment helped.
FINALLY! This gives me great info to present to my primary D.O. and my D.O./N.P. I was on a monitor for a week, just about 1 year ago. OF COURSE nothing happened to show proof of my complaint. Been consistent with all of the symptoms ever since. There’s no preparation, ahead of bouts, because they happen randomly. However, starting to be more frequent. I’ve kept a journal and my Fit bit is a great resource for recording the super high & low heart rate.
I have 2 autoimmune conditions, Hashimotos & Celiac w/ Adrenal exhaustion and hormonal imbalances…..all under control with natural treatment. SO, here we go, again. Now, to get proof and documentation, even though treatable. Not letting any of this define me!
I have not been officially diagnosed, but my symptoms seem to line up with POTS as my cardiologist is testing me. I have never felt so exhausted, fatigued, and dizzy in my life. I’ve had several fainting episodes, and near fainting every day. This is effecting my ability to care for myself and my family, and I have been unable to work for about a month. I am trying to remain hopeful so that I don’t fall further into depression, but the physical limitations are very discouraging. My family is helpful, but I am used to caring for them & hate asking for help.
I have not been diagnosed but this sounds exactly like what I’ve been dealing with for months now. I’m 65, and this has me worried I will not be able to live independently any longer. I’m pursuing a diagnosis.
Does anyone else have nausea, palpitations, and difficulty beathing when / after bending forward or squatting? This has been the worst part besides the weakness and fatigue.
I keep trying to exercise to build myself up, but even the mildest exercise depletes me for 3-4 days.
Does anyone know of a doctor who treats this in the Minneapolis/ St. Paul area?
I’m 63 and my story is close to yours with same symptoms and concerns for my recovery and future. My symptoms have started years ago with recurring flare ups Drs would do tests but never came up a diagnosis. Now I I’ve been stuggling with all the symptoms cardiac and concerns about my kidneys nausea,losing so much weight. 6 months in this flare up and I think this time it’s here to stay. Difficult getting Drs on board so not really any progress.Need Specialist and not sure where to go. I’m in Canada and have to go to US. I’m so frustrated and scared and stressed
Hi, I have just been diagnosed with POTS and most of my symptoms seem to fit. One thing I wanted to ask others, is how severe the shortness of breath is for you? I feel like I am heavy breathing constantly, even while laying down at rest a lot of the time. I wake up in the morning short of breath too. Is this common for POTS? I ah e brought it up with my doctor many time and cardiologist, but neither proved any insights. I am trying to understand if this is typical of POTS for others, or I have another issue going on too.
I have been going to different specialist for a year and I feel like I definitely have POTS. I like you wakes up and have shortness of breath. I feel good lying down at night but waking up, is like having a hang over. I found. POTS specialist in my area and going to contact her.
Hello, My 17 year old soon has been recently diagnosed severe POTS. He is 6’5″, 160 pounds, and was healthy, fit and active. Literally in a week he went from functioning normally to very ill . Over the next month he developed gastroparesis, difficulty swallowing and resting heart rates of 54 to 185 and rising upon standing. His blood pressure is all over the place. We were quickly referred to a Dysautonomia Specialist. He was put through the paces of testing and formally diagnosed as a severe case. He was put on Beta Blockers and Fludrocortisone. We have implemented all 2 pages of lifestyle and physical strategies. It has been 6 weeks since his diagnosis. He is not improving. He has now developed bladder issues and eye pain. Not burning but painful eyes. He is down to 145lbs. We go back this week to see how he is doing. I am very concerned. How long was it before anyone saw improvement? He is an amazing young man and is fighting and doing his part but it has been discouraging to not have any improvement. Is there possibly something diagnosis wise we are missing? Feedback is appreciated.