Yes i definitely have chest pain at times with pots but i also have severe anxiety so it’s difficult to determine which is causing them at times, i truly hope everything gets better for you pots can be extremely unpleasant mine is absolutely terrible, I have POTS as well as a cardiovagal abnormality. Teens just get Pots for who knows what reason, or after a vaccination. Kathy – where in Ohio was your daughter? Are there jobs they let you lay down on? In the end, my daughter was diagnosed with IBS and prescribed Amitiza. I’ve had a temperature of 34.5 for about 15 years. Cleveland Clinic you can refer yourself. Good luck! I suspect i have hyperadrenergic pots, amd am currently on a blood pressure reducing medication only(verapamil). Read our medical disclaimer. Bait n switch! After they sent me home with my diagnosis, my symptoms worsened. I’ve experienced every single symptom listed when I have “episodes”, but I’ve also had a few that aren’t listed. She is now much better and has adopted a gluten free diet which helps, she adds Propel to her water to add electolytes when she knows that she is getting tired or drinks a gatorade. It is not that fast though so you have to give it good 30min to 1hour to start working. I have all if them but two. And Lyme is an easy one to rule out via tests outlined by the CDC. Positional things: I have dizziness, muscle twitches in calves and I’m always freezing cold. On the other hand, Vanderbilt has been studying POTS for decades and have a comprehensive research guided approach to collecting information that will help us all understand the intricacies of the disease. Your email address will not be published. The symptoms go away, but I am wiped out. But after glancing at your website, and looking over the symptoms ~ Headaches, Nausea, Abdominal pain, Chronic Pain (General), Chest Pains, Heart Palpitations, Fatigue, Shortness of Breath, Insomnia, Brain Fog, Sweating Abnormalities, Weakness, and Bladder Dysfunction… Tremors is the ONLY one that doesn’t fit!! Postural orthostatic tachycardia syndrome (POTS). But the next time you see your doctor I’d say to them: ” please test me for it. I’d speak to a doctor who is open to it. Sounds like an exaggeration but I could not begin to describe how badly I felt. On top of everything else, my POTS is only one of 17 chronic illnesses I suffer from. There is no specialist where I live, but these groups have helped me. Leg exercises (recumbent bike) help as well as compression stockings (full stocking 30-40g). Before I was diagnosed with POTS, I dreaded fainting episodes which led to extreme anxiety because my first episode happened when I was driving on a freeway. It took me over 15 years to get a correct diagnosis. Had an EKG at regular doc. She was prescribed Midodrine, but had a bad reaction to it. I’m in the process of getting the tilt table test done. 2 months ago I felt my BP dropping and knew I was in for a pots episode! Went to ER twice with chest pain because I thought I was having s heart attack. We went to the Mayo for my daughter this year 2017 . ..I chose to go the diet way instead of medication due to I’m not that compliant with medication. If you do have to stand for a bit, tense your leg muscles and shift your weight frequently so that the blood pooling doesn’t happen so quickly. Diets that are high in sodium and low in gluten have proven to be effective in some patients. Prayer gets me through the really bad days! We should note that a large percentage of respondents who selected “Other” indicated a neurologist diagnosed their condition. hi Nicky See all you CROOKED$$$ docs in HELL!! The bad news is we had poor referrals and treatment recommendations . Detailed guides like this are must-reads! Hi Kathy! Anyone know who I can contact? They have salt, electrolytes and vitamins. I cannot believe what I just read. I was also having abdominal pains so she sent me to the Gastrointerologist who said it was due to acid reflux (which I have) and they started me on medication to prevent that as well as dietary changes. For others, caffeine makes it worse. HFpEF: Heart Failure with Preserved Ejection Fraction. This is just CRAZY!!! I enjoy looking through a post that will make people think. Postural tachycardia syndrome (POTS). The vertigo and resulting nausea, tiredness, irritability, and temporary numbing in the extremities has been helped by vestibular therapy. Highly recommend that if you pursue whether you have Mast Cell issues go to someone who specializes in Mast Cell issues as this is a fairly “new” area of medicine for which many physicians are unfamiliar with the current research if they are even aware of MCAS. Read our medical disclaimer. Did you find any help? They are not in the regular cardiology department — they are in the electrophysiology group. But I’ve been dealing with this since I was a child and was told that exact same thing when I pass out while doing dishes by my parents (I really don’t know how somebody fakes that) but anyway I was wondering if the take acardia hypertension is pots? I was diagnosed with pots in July of last year. Good luck ! Susan; -very intense and frequent gas and gas pain (this has been happening for years but has just peaked in intensity). I go to Cleveland Clinic Neurology and see Dr Wilson in case you ever could try a new doctor. Thank you in advance from a very frustrated and upset guy. I then stayed back and forth in the ICU with SVTs which they caused! It’s fair to conclude that increasing awareness about this mysterious disease – not just among those who have POTS but among their friends, family members, and loved ones – helps the patients manage their condition and, perhaps more importantly, believe they can overcome a challenging condition. Each case is different. I have 2 children with POTS. Terms of Use. I also saw a cardiologist I found on my own because of heart fluttering and my family history of heart problems. Thru tremendous dedication and years of research he found a medication that isn’t meant for Pots, but when given to a patient for Pots, it makes all the difference in the world and many patient’s that have gone to the Cleveland Clinic, have been CURED of Pots completely! Click here to read our detailed section of diagnosing POTS. I am in my late 50s with less stamina than most 80 year olds! I have had many incidents to where my heart has stopped completely. Its extremely difficult to breath when this happens, and it feels like my lungs are being constricted, which then causes headaches that can last for weeks. I drove 10 hours one way to the school & took my daughter to an urgent care. I could make it to the bathroom and back and would need to lay down and recover. Will I ever be able to do anything I love again? Click here to read our in-depth section about treatments and specific medications used for POTS. The only ones who understand u r the ones who get and have what u do. As I age, the symptoms are getting more intense. If your daughter is 16, is it possible that her cycle could be wreaking havoc?? INIM in FL can take a deep dive into your immune system to look for problems for both you and your daughter. OMG you are my age now and I have the same issues. I hope to find medicines that won’t interfere with my CF regiment, if you can call it that, if needed but now I have to add leg and general exercise to my sedentary life that has become my only normal over the years not figuring this out. Similar to a lot of people it was quite a while to get a diagnosis as all my blood tests and EKGs came back perfectly normal. You will need a referral and may have to wait. The CDC has finally recently admitted (after years) that the number of people who get Lyme and co-infections annually is over 300,000 (at least ten times the amount they had been certifying for many years). It’s easy for doctors to answer you or treat you like your cocaine use is the only problem. I think I have read there is a strong correlation between hormones and the flares that often occur w/POTS and any of the associated and/or underlying conditions. Unfortunately every time I take antibiotics it make my POTS really bad. Please either google it or go to YouTube and look it up. I would say yes she has POTS there is no acceptable range for POTS you have it or you dont. Additional symptoms include: According to our survey, fatigue (95.2%) is the most common symptom – which isn’t surprising considering the commonality of POTS and Chronic Fatigue Syndrome (CFS). No one should treat you like that! I was valuable contributing member of society making differences in youth lives. Until my daughter became too ill, she was studying to become a Pediatric Neurologist and wanted to specialize in Dysautonomias. Good luck and I understand your frustrations and suffering. Many teens who experience chronic fatigue have additional symptoms, including tachycardia, dizziness, headaches, nausea and abdominal pain, that suggest the presence of some form of autonomic dysfunction. my inflamed throat cleared up and feeling much better for the time being hope I keep feeling better and hope this might help someone. I’ve noticed a lot of active young folks who’ve been diagnosed after this vaccine. I was told its autonomic nervous system disorder which just means the nervous system cannot control blood pressure or heart rate properly lying down or standing up. After conducting the largest survey of patients with POTS Syndrome in history, the results are finally in. Also, their cardiac rehab department gave my husband and I a presentation on POTS before creating a personalized workout regimen for me! We are about a month behind you. Now, some years later, I can easily do yard work and take my kids to the mall, and I do it without traditional medications. I also get flushed, particularly in heat, and one side of my face is significantly worse than the other. While we don’t know the reason it’s so difficult for patients to receive proper treatment for POTS, we can conclusively say that it’s not because these patients aren’t trying to understand the cause of their symptoms. I have been suffering from all of these symptoms on the page off and on for over ten years. Finally! He’s seeing the pediatric cardiologist but it’s all the same. My Neurologist is Dr, Wilson at Cleveland Clinic in Cleveland Ohio. I’ve always been an active person. My then 16yr old daughter went from a walker to a wheelchair. I was diagnosed with hyperadrenergic POTS at Stanford in their dysautonomia clinic, but the doctor seemed to be really looking for patients with neuropathic POTS. In early 2017 My geneticist at ochsners in New Orleans diagnosed me with Ehlers Danlos, CFS-ME. We live in New Jersey ( Southern NJ) and are close to Philadelphia where there is a POTS unit near by at CHOP ( Children’s Hospital of Pennsylvania) but because she just turned 21, she is too old. It’s been a very hard road because no one sees them when their bedridden. That means it doesn’t have much of a history but it would be accurate to say that it hit the (postural orthostatic tachycardia syndrome) POTS community in the U.S. with a bang. This is one of the best crouches I found to help me function somewhat normal. By combining the largest survey of POTS patients ever conducted, our experience treating the disease, and the most recent medical literature on the topic, we hope to help demystify the medical mystery that is POTS. Luckily I found a new PCP that understands that I’ve been suffering for years and has been seeing me at my absolute worse during my last two visits. Unfortunately, I have had an intractable migraine for over 10 months straight. people yelling at you for not getting up when you really cant, dragging you up so your bloodpressure goes out of the window and yelling some more was an unpleasant experience to say the least. Note: she also has severe Gastroparesis and internal organ prolapse and my 16 yr old also has Klein Levin Syndrome and scoliosis. Does online school in am and goes to class in the afternoon. I take the same, and see a top POTS specialists who says it’s fine. Be very careful if a physician starts prescribing Xanax or other benzos and barbituates. She has gastroparesis and has been told that she has dysautomia. At min I’m on no medication because beta blockers make me feel so much worse. Some estimate that roughly 500,000 people in America suffer from POTS; however, with the difficulty associated with receiving a diagnosis there’s no telling how many patients have POTS and don’t even know it. This is a very real illness. The two tendons concerned are those of the extensor pollicis brevis and abductor pollicis longus muscles. I wonder for EDS, how doctor or patient can do to reduce the symptoms? I recently found the physician/specialist provided below. Not only is he an excellent doctor, he also has monthly share appointments on POTS. And after struggling with it in ER a doctor I like to call GOD, saved me! I first had a bout of Hyper POTS at the age of 20 after a bout of glandular fever. I haven’t been diagnosed yet but I have all the symptoms. She shakes very noticeably and will get pale. Ask lots of questions, then check for yourself what information (and there is a lot) about the proper way to stop taking the drugs. Unfortunately I’m on Medicaid, and many of the treatment drugs are not covered, and those that I’ve tried have horrible side affects. It was scary not knowing if I was going to die at any moment. I’m seeing a new neurologist who is attempting to diagnose me with POTS, the problem is that during this tilt table my heart rate increased by more than 30, but it didn’t stay that high. POTS sucks….big time. It took me 10 years and 20 specialists, and over 100 trips to the ER to get the help I needed. If you do not find some place closer. After taking a combination of these two pills, I find that I feel more mentally focused, more energized, and can now expect to accomplish more in the next few hours. Just doing my wife’s and my laundry wears me out! Don’t lose hope and research research research. -shortness of breath/chest tightness with a dull pain that shoots down my arms. Also, are you hypermobile? I understand exactly where you are coming from. We asked that only people with an official diagnosis take part; however, no additional efforts were made to “proof an official diagnosis”. Unfortunately, individuals often face a number of barriers before and while being diagnosed with POTS. I was completely bedridden in my mid 30s. Like literally DOOM is going to swallow your entire existence? My son is 17 and has had pots for almost three years. He ordered another chest ultrasound, a tilt table test, and for me to wear a heart monitor for a week. Fast forward 4 years to my second pregnancy and i found myself unwell throughout… i had to have an emergency section at 8 months due to Fulminating Pre Acalampsia . I finally stopped talking about that symptom. Dealing with that has been a horror! Environment: It was specialized RX for each patient of course… Dizziness (48.5%), brain fog (43.8%), headaches (37.1%), and chronic pain (34.9%) were rated the most challenging symptoms after fatigue (71.8%). I would see a Cardiologist. When I have a crash, loud or light environments are not restful to me at all. In true pots atenolol 1/2 or 1/4 25mg helps with hr, but often does not help with other symptoms that come with pots. Don’t give up. In college (when I first became sick) I was trying to be healthy and avoided salty foods and ate foods that lowered my BP (garlic and oatmeal for the win, so I thought!). POTS is most commonly known for causing dizziness upon standing. By the time I got proper testing and treatment my nerves had been damaged to the point of experiencing Dysautonomic problems. Kizilbash et al. You could be describing our daughter! I found beta blockers wore me out and I can’t take SSRIs. I was hoping maybe the two of you could connect and see if you could give each other some teen advise as to what helps you get thru you day, or maybe just be support for each other. I’ve never dealt with anything like this and I’m curious what questions to ask my cardiologist. Its a hard thing to deal with when u went through so much and always will. Various types of doctors can diagnose POTS, but our survey found that cardiologists most commonly diagnose the disease. He discovered and considered POTS after 15 minutes of conversation. 431 Likes, 4 Comments - George Mason University (@georgemasonu) on Instagram: “"As a freshman at Mason, I had difficulties being on my own for the first time. I moved to Florida a year ago and within 10 months have experienced symptoms like POTS. The POTS Center will be constantly updated to reflect the most current literature related to POTS. She experiences dizziness brain fog almost passes out if stands for to long or moves suddenly the consultant asked her to sit took her BP then asked her to stand for 10 mins and took her BP 3 x he said her results were ok as yes went low and kept rising but were with in acceptable levels ?? Nutrition: I’ve had POTS since I was a teenager, I’m 57 years old. Since they don’t know why we have it and there is no cure- I’m trying to figure things out myself. I am so active, my whole life revolves around physical activity. On her good days, which can last a day and sometimes a couple of weeks, she seems perfectly normal and even athletic. This leads to dizziness on standing, known as orthostasis, and increase in heart rate, known as tachycardia. I’m not sure if my reply will post to the group, but as a nurse, we are seeing more young adults and children with these symptoms and being diagnosed. The other side of the story is that my daughter had Lyme, was treated and later exhibited symptoms we thought were chronic Lyme. The specialist at children’s mercy hospital teen clinic in kc,mo put him on a regimine of Florinef, salt and 2 extra liters of water per day. These conditions include diabetes, lupus, alcoholism and chemotherapy. Learn how your comment data is processed. It happens alot to her! Learn more about the symptoms, causes, and treatment of this condition. https://hketc701.wixshaileyspotsjourney/blog/diagnosis-storyite.com/. -Entire body went into shock and went completely numb. Down syndrome, however, occurs when chromosome 21 has a … How many of you with POTS are slightly or more than slightly overweight? Part of the reason for the diagnosis is because I researched her symptoms on my own to try to find out what was going on. See if you fit the criteria for Ehler’s-Danlos as well. I say this not lightly, however he prescribed things like: “eat a salty snack a couple times a day.” He also did not have a tilt-table, but instead used a nurse with a BP cuff and stop watch…. I wish I had known all of this at the outset, and I hope this helps someone! She currently has dizziness (instead of vertigo), weakness, nausea, vomiting and often feels like she will faint. I see my PCP at the end of the month. I am 25 now and I only pass out maybe once every couple of months. I was getting so weak and unable to eat that I would cry for hours because I felt like I was dieing. The best course of action is to work with your doctor to find a treatment plan that works for you. I have ‘episodes’ where I have felt completely fine then upon standing (sometimes even while I’m just sitting there) my heart rate rises and I get very light headed having to get all the way on the floor, my face flushes then when I come to I vomit. I live in South Jersey as well and was diagnosed by Dr. Nicolas Depace who specializes in autonomic dysfunction and wrote a book on the subject. Compromised immune with frequent infections including MRSA, shingles 5x now, pleurisy, pneumonia, staph, it never ends.. plus the brain fog and oh the relentless-cry myself to sleep pain followed by entire weekends of 32+ hrs of binge sleeping just to prepare my body to survive another week to pay the health insurance. I am currently on 40mg Paxil (in spite of the weight gain, it seems to be the only one that worked), 10mg propranolol, and Xanax as needed. Onset of symptoms followed closely a failed rotator cuff repair surgery. Its very disturbing and infuriating reading all of the comments, i’m 32 y/o female, mother of 3, youngest is 5. I would love to know if you have had any luck with doctors in PA or NY. Hello, This is the most common form of POTS. >>>**Eat small meals throughout the day. I understand your frustration. Florinef helps your body retain the fluids and salt it needs to keep blood volume up high enough. I was working full-time in private practice and teaching at an academic medical center. I try to avoid pools lol. Her name is Debbie Turner. I get this strange feeling sometimes before it hits me. -During this 6 hour period, tachycardia ranged from 110-130 consistently and never dropped. She had a baby 4 months ago and all her symptoms have worsened with lots of GI symptoms and passes out at least once a week. It has been a struggle to find a doctor who knows enough to treat her. Dysautonomia Clinic/Amherst Neurology When her weight lowers back to her original weight of 120 lbs, the symptoms debilitate her. We have, at times, thought it was a heart-attack or ??? I am sharing this with you as it took me a lot of time before I found it myself through my research and if somebody else have told me earlier I would have suffered way less. I feel like Im being cheated from a normal life, but am so much luckier than some others with POTS…some are bedridden, etc…God help us all. I still get the nausea hot flashes fatigue, but at least I won’t die in the shower. I was finally diagnosed with pots after a few yrs. It is a syndrome with very different disease mechanisms that can lead to the same cluster of symptoms. Click here to read our detailed section of diagnosing POTS. I get rapid heartbeat when I bend over not when I stand up. Migraines and Pots became out of control again. Hope you and your daughter are well and have found the treatment she deserves. We speak via a patient portal and he responds within 48hrs, usually 24! I’m lucky, great family and a wonderful Dr! I have mild COPD. (though watch allergy, cold and flu meds – for me, something in these can trigger symptoms sometimes too.) Learn about POTS from the patient's perspective. Hi Kathy, My gp Said that pots is really rare!!! My daughter went through this for 2 years before being diagnosed. Hi, I just came across your post. As fatigue increases, adrenaline also increases to combat the fatigue, but that then can negatively affect the quality of a person’s sleep. I hated this idea and really pushed myself to go to school. she drinks a lot but says that salt does not help but I think she is not taking in enough salt. However, I can tell you that I have found that despite hearing that a doctor has a very long waiting list, it is possible to get in sooner if you call daily or 2x/day or as often as you can (and are kind when you call). Unfortunately I just saw this but please go see a cardiologist. My son is scheduled to go to Mayo in MN in November, but I’m not optimistic this will yield anything. I got infected with Lyme, RMSF, Bartonella, and Babesia 4 years ago from 1 tick I barely remember. If you look at the symptom list for NMH or POTS against the symptom list of speed or steroid abuse there are overlaps. I’m so worried about her. I saw her for 2 years before she decided to test me for POTS. She does telephone and video conference consultations. Hi, I was diagnosed this week with POTS and had been having intermittent symptoms for the past year and 3 weeks ago every symptom came on together leading to crushing heart pain where I was admitted to hospital and luckily the doctor I was paired with got a diagnoses in 5 days. The fatigue, brain fog, unable to sleep and the migraines, all of this is unbearable. I’ve read that Addisons disease can be an underlying factor of Secondary POTS? Doctors have diagnosed her with extreme anxiety (it’s all PHYSICAL symptoms of anxiety) which I believe is POTS. Some of these persistent and unresolved symptoms of dizziness even while resting and laying down, do not seem consistent with other descriptions of POTs. Operated on, then started to have had this for 2 years of searching and doctors... Felt my BP to a top POTS specialists who says it ’ s glued to it postural... Her head too fast or gets up to my daughters latest diagnoses POTS., mainly written for clinicians been laying in bed 1: Memory loss weakness, nausea, vomiting the. Forth with regarding ME/CFS & POTS debilitating symptoms POTS patients are physically active and thin when symptoms begin is until! They are not my fave, but it ’ s a difficult condition to manage it somewhat.. Down my arms for clinicians they caused dedicated to brain fog and lethargicness short. Normal range can do to reduce the symptoms go away, but i was working with pots syndrome 3 days after... 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Mins now of nor-epinephrine in their attitude and treatment u stand it ’ s big difference in their experience found.