Postural orthostatic tachycardia syndrome (POTS) is classified into different types. It is important to understand the difference between these because the treatment differs depending on the type of POTS diagnosed. The most often discussed types of POTS are neuropathic POTS and hyperadrenergic POTS; however, there is also a form of POTS called Secondary POTS.
Neuropathic POTS
Neuropathic basically means nerve disease. The nerve supply to the vessels in the lower limbs known as the sympathetic nerves is responsible for stimulating the vessels to tighten up and squeeze blood back up to the heart when needed, such as when standing. In POTS syndrome, the sympathetic nerve supply to the lower limbs does not function properly and so there is pooling of blood in the lower extremities rather than being returned back up to the heart. This leads to dizziness on standing, known as orthostasis, and increase in heart rate, known as tachycardia. This is the most common form of POTS.
Hyperadrenergic POTS
Hyperadrenergic basically means high adrenaline. Adrenaline and nor-adrenaline (epinephrine and nor-epinephrine) are natural stimulants within the body, the same ones released in the flight or fight response. Hyperadrenergic POTS patients have high levels of nor-epinephrine in their blood. As you can imagine these would lead to increasefd heart rate and blood pressure. In the more common neuropathic form of POTS, there is lower blood pressure and higher heart rate when standing. In hyperadrenergic POTS, there is often both increased blood pressure and heart rate when standing.
Secondary POTS
Secondary POTS refers to POTS syndrome that occurs as a result of another underlying condition that leads to damage of the nerves that usually control the redistribution of blood. These conditions include diabetes, lupus, alcoholism and chemotherapy. As part of the work up for POTS, a screening to rule out secondary causes is usually performed.
To find experts in POTS around the United States check out XpertDox.
I was diagnosed with pots after tilt table test.i have rapid heart rate and low blood pressure.the cardio physiologist said I was a very unusual case.I tried a few Meds, but they made my blood pressure even lower, very scary ranges, so I can’t do that.I also need to eat salt to get BP up! I am 71 yrs old., was diagnosed past March, however have had panic attacks since my twenties, much more infrequent now.the doctor gave me two horrible options, said first would be permanent , could make it worse, second was to try a medicine e has only used 3 times! Had to hospitalize patient to get him on it!I was give name of another elect physiologist, but he’s ot on my insurance list! There are very few of them in Southern afloat who are on my insurance. I am very frustrated, do not know what to do, I need to be able to have a normal life!
I just saw a POTS specialist. I’ve been on a beta blocker (to lower heart rate), low dose steroid (to increase blood volume) and Midodrine (to constrict blood vessels). Midodrine helps the most during an episode of low blood pressure. Leg exercises (recumbent bike) help as well as compression stockings (full stocking 30-40g). I was prescribed bupropion to help the norepinephrine signals get to my brain, but the side effects aren’t so great with this one.
I have tried many drug cocktails to manage my pots, including Propranolol (beta blocker), Florinef (steroid) and a host of antidepressants for their adrenaline/nor-adrenaline control. What I have found to be the best for me is a combination of Bupropion (only 150 mg) and Zoloft (only 50 mg). When taken together, I feel so much better. The Bupropion helps alleviate the side effects (weight gain and sexual) of the Zoloft and the low dose of Bupropion has really not had any side effects once I got it into my system. Good luck! Stick with it. It saved my life!
Rachel do you know which type of pots you have? I suspect i have hyperadrenergic pots, amd am currently on a blood pressure reducing medication only(verapamil).
I should say that I also continue to take the Propranolol, but was able to discontinue Florinef by managing my diet with very high salt intake. (I was getting migraines from the Florinef).
Rachel – What type of POTS do you have ? Neurologic or adrenal gland ? Your doctor should know and it makes a difference when it comes to treatments . My daughter has it and we are searching for the right meds to help her . Thanks
Can the adrenal cause pots?
I highly recommend IV Saline infusions. Has helped far more then any meds! Every 2-3 days for myself
Are you in the U.S.? I have a Cardiologist and now have to see a Neurologist. A Cardiologist can only do so much. I am being sent to a research center. I was told my case is rare. I have been sick for 2+ years and just got diagnosed. I am 44 yrs old. I have been waiting for a month so far to get the appointment for the Neurologist at the research center. I understand your frustration. This disease is awful. I spend most of my time laying down, and just getting up as much as I can and doing whatever my body will let me each day.
Hi Wendi, how did your visit with the research center go? I have the same symptoms, and I am going to the Cleveland clinic?
I was told for many years that I had anxiety and depression that were causing my symptoms…I kept repeating that I did not feel anxious or depressed, but I WAS scared because something was wrong with me…Ive had symptoms since I was 6 yrs old (fainting, shortness of breath, stomach issues)…I finally agreed to start on medication at 34 yrs old, with the antidepressant Paxil , plus a low dose beta blocker, and Xanax, and when I started to feel a little better, I agreed with the DR’s that apparently I WAS depressed and anxious (even tho I felt neither)…40 pounds later, I tried to wean myself from the Paxil, as it is a known cause of weight gain, but the symptoms came back 10 fold at my half dosage point. My “shrink” and I tried many times to switch slowly to another SSRI, with no luck…finally, I did my own research and found my symptoms most closely matched POTS. I was given a Tilt Table Test, which was a horrible experience, but it proved my diagnosis was correct. 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. I am able to function, tho I must remain in a cold atmosphere. Any kind of heat makes me pass out. I cant take hot baths, or showers, cant sit outside past about 70 degrees. I cant do any sort of work that requires me to lift my hands above my head, or my arms feel as if they are held down with weights.. My heart rate routinely goes from as low as 42 bpm when laying down, up to 130 bpm upon standing. I tire so easily, but try to work out my legs especially, because they say that helps…Im not sure on that one. 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 should also mention that Smart Water (has electrolytes) helps a lot, and Gatorade…I sweat a good deal, with any movement , luckily I dont smell bad…but the electrolyte drinks help.
I sweat bad too any kind of activity iam currently on my 3 medication dont know what type of pots i have, my family support isnt good i need help with other pots people cause the going though meds and side affects help me keep going
I use Pedialyte Powder Advanced Care packets. It is more expensive than Gatorade but it has fewer calories and more electrolytes. It is essential that I drink 4-6 liters a day. Before exercise, I drink at least 8 ounces of water and continue to drink Pedialyte throughout my time exercising. If I am going through a bad patch then I have to break up the exercise into 5 minute increments. There have been times when I could only do two minutes at a time on a recumbent bike. I also have asthma and have to take Prednisone once in a while which make the POTS worse during the taper so I have to be extra vigilant. I carry salt pills, Midordrine, water and Pedialyte packets with me wherever I go. My husband is a great support for me. I am very lucky that way. Weight gain sucks, not much you can do about that. I take Zoloft as well and Renaxa which increases blood flow to the heart for those of us who have angina as part of our POTS symptoms.
Yer the best. So relate 2yu. Thanks 4 helping me and so so many others, probably more than yu’ll ever know. IV daily saline or Lactated Ringers hydration of 1 Liter has been life saving for me. Meds too. Had to get a hickman chest tube cause too much for my poor veins. I’m far from cured at age 57 but I’m still alive.
Hi.. i have a similar story to you.. I first had a bout of Hyper POTS at the age of 20 after a bout of glandular fever. I spent a week in hospital due to suspected heart problems, but they could find nothing wrong with my heart even though they admitted something wasent right. I sent on my way with Beta blockers to control the issue . It took me 6 months to recover from that first bout and for the most part got on with life. 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 . After that my health just went down hill. All the usual symptoms that you get with POTS , but i ended up being diagnosed like yourself with anxiety. I had basic treatment about 16 years ago and continued to have bad relapses that would put me in bed every few years or so. FAst forward again to 3 years ago when i had a really bad relapse and was finally diagnosed with M.E. … it explained some of the symptoms but by no means all . Then at the beginning of this year due to prolonged illness brought on by the menopause i had another bout . Through researching M.E. i cam across Hyper POTS and all the pieces fell into place. Its great to finally know what has been going on all these years but living through relapse as well as menopause is no fun 🙁 If anyone wants to chat etc… as it gets quite lonely when no one understands how hard this is.. i would love to hear from you 🙂
Hi Nikki. My daughter just turned 21 & has suffered from symptoms of POTS for almost 10 years ( episodes of extreme fatigue with increased heart rate upon standing, dizziness, fainting several times & near fainting many, many times, migraines, chest pain, stomach issues and heat intolerance to mention a few). We have been on a quest to find answers & treatment for YEARS with many doctors unable to find a cause other than migraines & or labeling it as anxiety ( which we knew was so far from the truth). By chance my daughter went away to a top dog trainer school in Ohio a few months ago. After having a respirator infection while there she had another episode of fatigue, extreme dizziness, near fainting episodes & stomach issues. I drove 10 hours one way to the school & took my daughter to an urgent care. It was there that the doctor nearly knocked me off my seat & said she had POTS ( you would not know how many doctors I had asked if POTS was her problem & have been repeatedly told no). Due to my daughter graduating from the dog trainer school the following week the urgent care doctor ( who also told us he had his own clinic) wrote down test for my daughters family doctor to order ( Tilt Table test & QSART). Once home, my daughter had continuous symptoms like above along with chest pains with extreme drop in oxygen levels. Her hands turned ice cold, she was as white as a ghost & her finger nails and knuckles turned blue as well. She was admitted into the hospital for a blood clot in her lung which turned out not to be after 3 days of further testing & blood thinners. 5 days later the chest pain , paleness, blue finger nails & decrease in oxygen with increased heart rate, extreme fatigue & dizziness became severe again . This lead me to take her back to the ER where after a blood test to rule out a blood clot, they discharged her saying she had anxiety which I fought with the ER doc that this was not so.
Finally after waiting a month for a cardiologist, a Tilt Table test was completed ( her family doctor was hesitant to order the Tilt table test & said she didn’t know what a QSART test even was, nor where to get either test). The Tilt Table showed my daughter has POTS ( this was just 3 days ago). Her cardiologist is a nice guy but was very honest to say he does not know enough about POTS to be her primary POTS doctor. My question is where does someone go to get proper treatment? 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.
The doctor in Ohio recommended going to the Mayo clinic ( several states away) since we are on the East Coast. My fear is now that we have proof of POTS, that we will end up going to a non-POTS believer doctor & have to start all over again ( as mentioned, sadly, this has been a 10 year battle to get to where we are now). Any suggestions or a web site of POTS doctors that you may know about would be greatly appreciated. Thanks for sharing your story. It is terrible doctors / the medical field ( I am a Social Worker & a Register Nurse as well) are so unknowledgeable of POTS. May 2017 be a year of solutions & good health to you & all POTS patients.
~ Kathy
Hi Kathy, I’ve heard that Dr. Peter Rowe at John Hopkins Baltimore Maryland specializes in POTS maybe he can help. If for some reason he can’t I would ask them if they know of any doctors in your area that can help her. If that doesn’t work try calling the Mayo Clinic that’s how I found my cardiologist! Hope this helps!
~Andrea
I have dealt with this problem since I hit puberty (I am now 43). For YEARS I felt like a hypochondriac, but I knew something wasn’t right. After a severe sinus infection, all hell broke loose and everything got much much worse. I saw a specialist at the urging of my primary, and he took one look at my legs (they were turning bluish) when I was sitting on the table for the evaluation and knew.They didn’t make me feel crazy, they were thorough and caring, and they didn’t let me leave until they had me on a solid treatment plan.
HI I believe my daughter is getting diagnosed now. Saw a cardiologist at Penn, but said it was vasovagel syncope, but her BP was not abnormally low. Did drop some with just sitting up but not bad. Didn’t do any testing. Had an EKG at regular doc. She is 19. Her Pediatrician said she had POTS but said to go find a cardiologist. I work at St.Chris and I also tried the doc at CHOP so called down to PENN and they said they deal with it but really did not do a test to check. Soooo, the cardiologist told me on the phone that my daughter probably has POTS but just her symptoms, but will need a TILT test to be sure. In the meantime, said to increase salt intake and fluid intake (about 3L/day) and to get compression stockings at least 30mm to start. My daughter is going back to school Tues so will have to bring her back for them .She said she did not know of an adult card in Philly that treats it, but thinks that one at Cooper does.
There is a POTS clinic at A.I. Dupont in Wilmington. My daughter is 18 and received special permission to see them. If they won’t see her they may have a recommendation for you.
Kathy,
I was recently diagnosed with POTS free 18 years of being told it was in my head. 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. He has an office in Sewell NJ as well as Philadelphia.
there is a autonomic clinic at Vanderbilt hospital in Nashville TN
Hi, we are also in so.nj and my son is going to Deborah Heart and lung center in Pemberton to diagnose and treat his pots. He’s seeing the pediatric cardiologist but it’s all the same. From here we’re being referred to a neurologist
Check on INSPIRE website under POTS. There, patients gather to discuss their issues and life and to support each other. You may be able to get some excellent referrals from folks there. Best to you & your daughter
Yale New Haven Hospital in Ct. Excellent.
The Dr. that discovered POTS, runs a Pots Clinic. It’s located in Cleveland, Ohio. 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! Praise God for this Doctor.
I’m suffering from Pots horribly, like many others I was always told it’s anxiety, depression, panic attacks that would make me pass out, when in fact after going thru the testing for Pots, I was diagnosed with the rarest form of Pots. I get 21 severe migraines a month, vomiting from the severity of the pain. The Insomnia is absolutely horrible. If I get 15 minutes of sleep a night, that’s a good night.
Unfortunately I’m on Medicaid, and many of the treatment drugs are not covered, and those that I’ve tried have horrible side affects. My skin began to peel off my body in strips, from one drug. All I can say is those of us who don’t have regular insurance and are on Medicaid, are screwed. If it weren’t for my ex-husband paying my mortgage payment and friends helping me with utilities bills, I would be homeless. The fatigue, brain fog, unable to sleep and the migraines, all of this is unbearable. I feel so lost and just want to through in the towel. I’m looking holistic ways to treat Pots now.
I went from working full time, having an active life, exercising daily, to I can’t get out of bed for days at a time. Those of us on Medicaid, have it much worse, because we’re denied the medication’s because Medicaid won’t pay for it, or were denied the cure this horrible disease is ravishing our body with. The medication that this Dr found to cure Pots, costs $500.00 a month. Those that have been cured, it’s different for each person; some have been cured after a year of being on this medication and living life again, while others have been cured in 6 months – 2 years. Each case is different.
I’m going to continue to believe that God is going to heal me, and I’m praying for everyone that has this horrible disease. This disease doesn’t have boundaries of who it will attack, and why.
Cleveland Clinic, in Ohio, USA
Hello I too live in nj right outside of Burlington. My daughter is turning 21 in October. We have been taking her to chop up until now we are going to try a cardiologist in cooper my primary’s secretary has pots and she goes to her. If you are interested you can email me at [email protected] I can give you the information
Kathy – where in Ohio was your daughter? Do you know the doctor and practice name? I’m in Ohio.
Thank you,
Miranda
Laura,
What is the medication that is $500 the doctor found?
What variation of POTS do you have?
I was told drinking two cups of licorice tea a day may help. Since you mentioned natural methods, thought I’d throw that out there.
Quite often, a cardiologist is not the only doctor to see. So many systems are affected………so neurology, gastroenterology and cardiology, etc. Psychology is also recommended, not because it is “in your head” but just to learn how to deal with your circumstances.
Not sure, but the drug that several people have asked about is not a true cure. It might be droxidopa. It could be just another tool in your box to help deal with all the symptoms. My daughter took it for awhile and it did not help her.
Hope this helps
Response to LAURA: I too have been where you are. By the grace of God I have overcome many of the obstacles. I did discover that a lot of the pharmaceutical companies have, what they call, compassionate supplies. They will give you meds for free. What I received them for was for an off label drug treatment for a non recognized condition. Contact the company that makes the $500. drug, and find out what the procedure is.
If you haven’t found a doctor yet, there are now several cardiologists at Penn who see patients with POTS! They are not in the regular cardiology department — they are in the electrophysiology group.
Hi Kathy,
I do not have much experience considering my husband is newly diagnosed with Hyperadrenergic POTS. It took five years of searching and horrible doctors saying everything was psychosomatic.
We ended up at the Cleveland Clinic with Dr. Wilson as his neurologist. He discovered and considered POTS after 15 minutes of conversation. He is amazing. His schedule is typically tough to get in, in a timely manner but he is worth it. He also has bi-weekly POTS meetings with multiple patients that we have been asked to attend.
If you do not find some place closer. I recommend Cleveland Clinic, the main campus in Cleveland, Ohio. I hope this helps. Best wishes!
We went to the Mayo for my daughter this year 2017 . The positive is that they have the Tilt test / sweat test there to confirm the diagnosis . The bad news is we had poor referrals and treatment recommendations . Neurolgy dept missed it completely . The internal medicine dept figured it out .
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. New research is showing a connection to vaccines….how many people that are in the discussion have had vaccines within 0-12 months of symptoms? The cases I have seen became symptomatic within 3 months of HPV and TD vaccines. As a nurse, just feel this needs to be looked into.
Hi Kathy, I don’t know if you are still looking for a POTS doctor, But a Neurologist deals with POTS. My Neurologist is Dr, Wilson at Cleveland Clinic in Cleveland Ohio. Not only is he an excellent doctor, he also has monthly share appointments on POTS. People from all across the United States come to him for treatment of POTS.
Kathy,
You could be describing our daughter! It has been a year since you posted. How are you doing?
Hi Kathy,
I just read your post (from a yr ago) re: your daughter’s symptoms and it sounds EXACTLY like my son. I hope by now you have found some answers and/or your daughters POTS has resolved. My son’s episode was triggered by a very severe infection this summer (he caught C-diff while visiting the ER for a wound and given a very aggressive antibiotic, Clyndamycin, which caused the C-diff…ugh). At any rate we live in NJ, also near Phila. If you are open to it I would really value talking and comparing notes – my email is [email protected]. My son is scheduled to go to Mayo in MN in November, but I’m not optimistic this will yield anything.
Hi Kathy,
I happened upon this website while trying to find a doctor for rare diseases. I hope you were able to find a good doctor for your daughter and her POTS. I have a rare condition known as CHIARI Malformation along with the CHIARI I also have another rare condition known as MALS. Research has shown that POTS is another condition that goes along with both of these conditions as well as another known as EHlers-Danlos Syndrome. I know that based on all of my symptoms that I must have POTS as well. I was wondering if you were able to find a doctor in your area that has helped your daughter. I was shocked when you said where you are from. I was born and lived in Monmouth County NJ until the age of 7. My family moved to Ocean County NJ (Lanoka Harbor) where I lived until a few years ago. I moved to Athens Ga where I now reside. It’s so crazy because I can’t find a doctor here in Ga to treat all of my crazy rare conditions, I travel to Weill Cornell in NJ for my CHIARI doctor. I desperately want to move back to South Jersey and plan to in the very near future. I too was worried about finding new doctors once back home. I would love to know if you have had any luck with doctors in PA or NY. Thank you so much, I do hope you were able to get help for your daughter, I know how frustrating it can be finding the right doctor.
Wow Kathy! I am a nurse too and have been through almost the same thing. I was hospitalized with a sinus infection which they would not treat with antibiotics because they claimed it was viral and gave me bronchodilators which made my undiagnosed POTS worse. I then stayed back and forth in the ICU with SVTs which they caused! I was discharged with cardiezem and had horrible side effects! Told I had panic attacks. The nurse was so condescending and said “have you ever heard of panic attacks?” I am in Indiana with no doctor to help! I had to asked for my own tilt table test from a cardiologist and she was offended but it was positive! I went to Chicago but my insurance refused to pay after the doctors office said they would. Bait n switch! I owe and it went to collections because I can’t work!
It’s a nightmare!!!
Does anybody know of a doctor or center for POTS in Indiana?
Hi Kathy! I actually just had a recent episode of hypoxia. I’m a nurse, turned pale, felt everything fading out, checked oxygen and levels were in the 70s. They put me on oxygen and my HR laying down in 140s. Fingernails blue and hands ice cold. This doesn’t seem to be compatible with a lot of other POTS symptoms. Did they ever figure out what caused your daughter to desat like that? Was it continuous or a brief episode? For me it was like a shock through my body and the oxygen would dip and the heart rate would climb, but it would resolve quickly and spontaneously. Hope you and your daughter are well and have found the treatment she deserves. I’ve also been through the mill with the psych questions.
Hi, I just came across your post. Your daughter is a lot like my son and his symptoms. Did your daughter ever get the help that she needed? If so what helped and where?
Dr Wilson at Cleveland clinic neurology center. I was diagnosed today after 3 years and 15 doctors. This is a God send.
Dr. Nicholas DePace has two offices in South Jersey. He is a cardiologist who specializes in Dysautonomia and POTS.
Maybe you’ve already found someone, but I thought I’d mention Brigham and Women’s in Massachusetts has its own autonomic department. Somewhat nearby.
I just saw your post. Check The University of Pennsylvania in Philadelphia. Also search for “The Undiagnosed Disease Network” It’s run and funded by the NIH National Institute of Health. I applied fot their program and living in north Jersey they connected me to The University of Pennsylvania to apply for the program. I was denied, but worth the effort to get into the UDN program.
Good luck!
Paul
Hi Nikki
I have been diagnosed with hyperadrenergic POTs, I also have Addison’s disease.
I am a teacher but have been unable to work for 12 months. My main issues are the dizziness, palpitations ( just rolling over in bed, my heart rates leaps 30 bpm).
I take florinef and Xanax.
Have you found anything else that helps? I found beta blockers wore me out and I can’t take SSRIs.
Like you I feel lonely and isolated. I can look after my personal needs but I am unable to do normal activities like walking any distance, housework, cooking anything more than very basic meals and driving for more than 10-20 minutes at a time.
Having always been very fit I find it incredibly frustrating and limiting. I am in my late 50s with less stamina than most 80 year olds!
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. I only start feeling sick after I’ve been upright for about 15 minutes and the doctor rushed me through the tilt table test and stopped it after 10 minutes even though my orthostatic testing at my local doctor that Stanford required clearly showed that my blood pressure continued to slowly rise for 15 minutes, after which time I have to sit. So I continue to look for a doctor who can help.
H2 antihistamines have helped me a lot with my energy level. I take a Zantac 150 in the morning and one in the evening. I still have the rest of the symptoms, and there’s some thought that (only hyperadrenergic POTS) is related to mast cell activation syndrome, but I’ve had no luck finding a doctor who knows what that is. Search for Dr. Lawrence Afrin. He has an excellent book called Never Bet Against Occam, which explains it. Best of luck to you.
Sharon…I have Addisons and Hyper pots as well..would love to chat with you.I’ve just been recently diagnosed.
Me, too. Though I am older than you. Did you find any help? Has anyone had success with Clonidine?
Hi Sharon! Just came across these posts and read your post from a couple years oho so don’t know if you will see this post. I’m sending post In case you see & read it.
I too have Addisons. I recently had a crisis and was diagnosis with hyper pots. With some reading, seems the two go together frequently. Ive many questions & definitely not feeling well.
Could you elaborate on your treatment & your progress?
Hope you’re doing much better! TY Sharon
If anyone else has these diagnosis & can relate, live to hear.
Hello I would love to chat with you, I find it very frustrating that nobody believes just how poorly this illness makes you feel? 3 yrs I’ve been poorly and for 2yrs if that I was told it was anxiety, all in my head, I’m giving myself a nervous breakdown? At min I’m on no medication because beta blockers make me feel so much worse.
Hi, I am finally on track to a diagnosis of hyperpots after years of er visits and all the symptoms. Im flat on my back again in a “flare”… As you said, so lonely and frustrating watching life go by knowing that you can’t get up for too long. And the worry about when the next flare or relapse will hit. I happened upon a hyperpots support page and cried. That women experienced everything i was suffering with for years wondering why am I in the er again? No doctors could figure out what it was. Follow up with your pc and monitor your bp…. again….. Knowing is definitely a great but what now. Im wondering if you or anyone else was ever put on low dose high bp meds just during a relapse? Would love any helpful advice you can provide. My cardiologist is trying to find out where to send me next. Thanks
hi Nicky
I dont know if you still read this forum.
I have M,E nd hyperpots we think.
Has anything hped the adrenal surges and constant feeling of fear…given that i can not tolerate srugs unless tiny weeny doses.
Nikki…I would love to have someone to chat back and forth with regarding ME/CFS & POTs. I am in the process of seeking out specialists at the moment. Let me know how we can personal message each other.
I would love to talk with you. My email is listed. Katie
Ditto! I have the same issues going on plus Ehlers Danlos, and so many other diagnoses. ME, all of its counterparts and Comorbidities that take away every finical, social, romantic, time consumption, energy available, required specialists, medications, being controlled by pain and fatigue and losing your self identity SUCKS.
Hi there, what is M.E? Your symptoms sound similar to mine.
Hello thank you for sharing your story . I hope you are doing well. I also was just diagnosed with pots a few weeks ago after many many years of being sick and many doctors saying I was depressed. I have not been treated yet for it do to the pandemic and it took three month to get the first app. Could you tell me what your symptoms are
Hi. Think,I have what you have
Have you tried Midodrine it Fludrocortisone? I use both to keep my BP to a normal range. No sugar and walking frequently has given me back my energy.
Me, too. Did you try Clonidine and if so, how did that help?
Dear Susan,
Don’t give up. I am 59 and just learned I have it. I too was told simply to eat more salt, drink more water and wear compression stockings. Not enough help. Thankfully I met with an exercise physiologist about a reasonable (for my age and fitness, etc) workout routine. You should know up front I absolutely have HATED working out my whole life (probably due in part to having un-diagnosed POTS!!). Anyway, watch the documentary RBG about Supreme Court Justice Ruth Bader Ginsburg, who is still working out (very sanely) in her 80s. You will get inspired. Exercises start slow and work up. As your strength builds, your POTS symptoms will both you less….go to a gym where there are other folks to encourage you. Use treadmill and stationary recumbent bike so dizziness won’t deter you. Hang in there. You’re too young to give up!
Susan;
I know this post is from a few years back but I just wanted to let you know how much EFT could possibly help you in that area. Please either google it or go to YouTube and look it up. Hope this helps you..it changed my life!!
***forgot to mention the EFT is for help with the Panic Attacks****.
Hi, I am desperate now as I am practical bed ridden because of my skyrocketing bp and pulse upon standing. I have been having episodes for a few years that send me to the er a cpl times a year leaving everyone stumped as to why my pressure elevates upon standing. Last er doc said he never saw anyone like me,would have to read up on it and sent me home to check with pcp who told me to keep a journal and see what I’m eating that causes it. I have just been sent to a cardiologist by my neurologist as he said he read about it but doesn’t have any patients with it (hyper pots). Here I lie waiting to be sent to theat er where they’ll repeat every regular test hydrate me and send me back to my pcp. I am in northeastern Pennsylvania and don’t know where to go for help. I am 52 and thought they were debilitating migraines until I discovered the high BP and heart rate,palpitations,fatigue, etc and researched for myself. I ALWAYS feel like my adrenalin is spiking and just thought I had to learn how to calm myself down with breathing. Anyone know who I can contact?
My daughter has symptoms but not as severe so they should hopefully test you and then start some meds as needed. My daguhter is young-19 so they were hesitant. Treatment is not same if your BP rises I think, good luck
It may sound nuts, but please check out the Plant Paradox by Steven Gundry. I think it could really help. Food is an effective alternative to medicine.
OMG you are my age now and I have the same issues. I was just diagnosed by Cleveland Clinic Neurology as POTS. Make an appt with Dr Wilson and you will first see the nurse practitioner Kyle Shannon. They took blood and will do more tests to determine which kind of POTS. I have been searching for 3 years and today I finally got an answer after 15 doctors. Good Luck and hope things are better for you.
My mother is 67 years old. She has gastroparesis and has been told that she has dysautomia. Her blood pressure is all over the place. It may be high when she wakes up but then bottom out (with high pulse rate)within a couple hours to only rise again later. She has fallen several times and almost fallen many many times. She has been to several doctors and most of them say there is nothingthey can do to help. Do POTS patients have both high and low blood pressure? Or is this only for dysautomnia patients (she has not been diagnosed with POTS)? She is currently taking medicine for high and low blood pressure but can’t seem to get the bp under control. Any advise/information will greatly be appreciated.
My blood pressure is very low in the mornings then high in the afternoon, so it’s possible to be the opposite with pots. It one crazy syndrome. I have meds to control the high, but mornings are tough to get it up. I was on fludrocortosone but it made my pressure higher and I had two mini strokes. The drs. Weaned me off.
mine was due to underlying conditions, but given my prior psychiatric records they did not look into it and told me to get more therapy at the psych ward even tho bradycardia and tachycardia were present based upon the table tilt test.
I looked into things myself and found two herbal supplements to ease it up a little. not much but better then nothing.
and keeping my bed in a bit of an uplifted position.
other conditions have now been found. but the fact that all was once more dismissed was so hurtful in so many ways. 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.
<3
That’s abuse. This is a very real illness. No one should treat you like that! You don’t deserve it. A
Hi….which herbal supplements helped you?
Which herbal supplements did you take?
I take florinef I was dignosed with pots in 2017 I am a junior in hight on 17 and I cant control my pots I have Postural orthostatic tachycardia syndrome (POTS). I passed out last week at school and just this past monday I havent took my medication in a year or so. I drink water and eat salt but its like It still wont control it I missed 28 days of school last year from passing out and being so sick.
We are about a month behind you. My daughter, 15, was officially diagnosed with chronic and severe POTS in Cleveland on 2/14/17. She left high school, sick, on 1/19/17, collapsed a few days later, and has only managed to go to school 4 days since then. Prescribed Florinef, 4 salt tablets/day +, 100oz water/day, socks, elevated bed 6-8″, meds for headaches. She’s been 2 weeks on the meds and strictly following the plan but she is still unable to get out of bed. We’ve tried many things, including alternating the bed height, allowing her to sleep in a recliner, changing things with “smells and odors”. The latest is waking her at 3am to get all meds in her in hopes that she will have relieved symptoms in time for school. Nothing has worked yet. She maintains she is in good spirits and determined to participate extra-curricular activities but just can’t leave the bed. It’s like she’s glued to it. Very frustrating to see this, we parents are helpless. Seems like we should be seeing improvement and we are questioning the diagnosis. I understand the pooling of the blood and the dizziness when you change your positions, but what causes the dizziness and headaches when you have been horizontal (for the most part) all night? Seems like everything should be circulating just fine when you lie down… I can’t help but wonder if they missed something…
Hello David, I sincerely hope that your daughter has in fact improved since you wrote this post? I too have a 16 year old daughter diagnosed with POTS. I thought that I would share with you what appears to be working for us.
Our daughter became unwell with POTS after a series of serious sinus infections and surgery, Like your daughter she was so unwell that she did not get out of bed. This is when the POTS presented itself. Unbeknownst to us, bed rest was the very thing that was causing her to become ‘deconditioned’. She was literally making herself worse by resting in bed.
I subsequently read an article in ‘The Very Well’ magazine titled ‘The Pots Controversy- Dr Levine Responds’. This article absolutely answered some questions for us.
Our daughter had to get out of bed and had to get moving. We bought her prescribed compression stockings that definitely worked; without them the world starts to spin. She was loathe to wear them understandably but once she realized how much they helped her she started wearing them all the time.
She started bike riding only for 2 minutes on a supine bike and because of all her previous sinus infections we have had her having iv vitamin C and B12 injections. They are helping her to feel a lot better.
She too has been unable to attend school this semester but as of this week she has been for 4 half days. Nothing short of a miracle.
Our daughter takes midodrine to elevate her blood pressure and various gut supplements to help with all the strong drugs she needed to take in the past.
Please take a look at the article, also PoTS UK is a very comprehensive website too. I wish your daughter and you all the very best.
I am 53 and the dizziness and head sensations hit 3 years ago. I was just diagnosed by Cleveland Clinic as having POTS after going to 15 doctors and I am so grateful. This doesn’t sound like an easy fix but like your daughter I try and have good spirits but miss a lot of work and have not felt normal since this all started. Good luck to your daughter.
I pass out when lying down and was told its not common. 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.
I take florinef I was dignosed with pots in 2017 I am a junior in hight on 17 and I cant control my pots I have Postural orthostatic tachycardia syndrome (POTS). I passed out last week at school and just this past monday I havent took my medication in a year or so. I drink water and eat salt but its like It still wont control it I missed 28 days of school last year from passing out and being so sick.
I take florinef I was dignosed with pots in 2017 I am a junior in high school. I’m 17 and I can’t control my pots I have Postural orthostatic tachycardia syndrome. I passed out last week at school and just this past monday I haven’t took my medication in a year or so. I drink water and eat salt but it’s like It still won’t control it I missed 28 days of school last year from passing out and being so sick.
There are some support groups on Facebook. Check out POTS, Dysautonomia, POTS and Hashimoto’s. There is no specialist where I live, but these groups have helped me. I also use a high quality line of essential oils products because I can’t tolerate most meds.
I find taking a Magnesium supplement daily helps a lot. I also cut out red meat on my diet.
San Francisco has a dysautonomia clinic for POTS SYNDROME
Stanford Dysautonomia Clinic in Palo Alto, CA?
I’m new to this site so I haven’t navigated through the whole thing yet but.. I just wanted to mention another reason for secondary pots or in the least there is a major correlation with POTS and elhers danlos syndrome. I have both conditions and through many years of researching I have found that there are many other people out there with both of these conditions and I wanted to mention it on this site so if anyone else has elhers danlos and POTS I wanted you to know your not alone. Best of luck managing this silent (sometimes very debilitating) chronic condition!
I have a 18 year old daughter who has been diagnosed with POTS. She has had it for approx. 3 years. She is seeing a Dr. at UCLA who has a clinic there. She has tried all the salt, water, exercise, compression stockings, all the beta blockers, channel blockers etc. She was recently prescribed Adderall for her brain fog and lethargicness. It has helped enough that she is taking 4 college classes. Online of course. She missed half of her high school years including the graduating ceremony, grad nite and all the dances. Her friends have fallen by the wayside. Her main complaint is dizziness. You can see her feet and legs turn purple due to the blood pooling in them. Does anyone know of anything that works for the dizziness? Any suggestions for any POTS systems is much appreciated.
My son is 17 and has had pots for almost three years. 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. It was specialized RX for each patient of course…
but helped him get back up in a few months and in about a year to practically normal. He still has a bad day here and there, but starting college next year. Does online school in am and goes to class in the afternoon. It’s been a very hard road because no one sees them when their bedridden. Gateraid helped too or flavoring the water just to get it down since you drink so much water. Made sure he was getting a daily vitamin and eating balanced diet. For dizziness someone said drink a glass of water or juice before getting up and get up slowly. Stop on the end of bed then rise. Best of luck in finding a speedy as possible recovery.
I have two children with Ehlers Danlos and POTS. POTS, along with many other diseases and issues, is secondary to Ehlers Danlos.
I have hyperPOTS secondary to MTHFR deficiency. I did not respond to any blood pressure lowering meds, and steroids made me worse. A very high salt diet and the use of corsets made all the difference. I still have mild symptoms if I drive more than 30 minutes in traffic, and symptoms get much worse if I come down with an illness, but otherwise I am essentially normal.
I encourage anyone with POTS to have genetic testing. I saw 30 doctors, and even the Mayo Clinic couldn’t figure out the cause of my dysautonomia. I had my own testing done and took the results to a local endocrinologist to get prescription methylfolate.
I was completely bedridden in my mid 30s. Now, some years later, I can easily do yard work and take my kids to the mall, and I do it without traditional medications. Never give up hope.
my 18 year old daughter has been recently dianosed with EDS and POTS and also has the MTHFR mutation. She takes 15mg Deplin daily but that has not helped her chronic leg pain and all that goes with both illnesses. Correlation between MTHFR and EDS/POTS? We are in LA. Who is the doctor at UCLA?
I am 18 and a college student, and I was diagnosed with POTS around eight months ago and have been in a “flare-up” since I had surgery last June. I, likely, have HyperPOTS, but my insurance doesn’t cover the testing to figure out definitively. I currently take 10+ daily oral medications but, due to my symptoms being as bad as they are, I often have trouble digesting them fully, and days when that happens, my symptoms increase as if I didn’t take any medication that day. I also have the fairly common HyperPOTS issues with hypovolemia, and a couple friends I have who also happen to have POTS, have mentioned that getting saline infusions and IV medication might help with some aspects of my symptoms. My doctor has not heard of this type of treatment, and doesn’t want to try it due to the possible complications and consequences (getting a port, constantly being in and out of the hospital — like that isn’t already how I live my life). Anyway, has anyone heard of that being helpful/has this type of treatment helped anyone? I have been seeing the same doctor who diagnosed me and, while he is a good doctor for this in many aspects, I think I need a doctor who’s a better fit.
I currently have such severe symptoms that it’s hard for me to leave my bed on a daily basis, which makes being a student even more difficult than it already is. I have such terrible nausea and stomach pain/issues that I struggle to get even a minimal amount of calories every day, I am constantly dizzy and lightheaded when standing, I suffer from pretty bad bouts of syncope (at least once every other day), I am “out of it” about 75% of the time, I have no regulation of my body and body temperature, and every time I stand up my heart rate increases by 50-90 BPM every time. On top of everything else, my POTS is only one of 17 chronic illnesses I suffer from.
I am very grateful to have found this website since my doctors aren’t very helpful in providing new ways of treating things, and my parents are not at all understanding of my abilities or lack there of, and this has made my relationship with them very strained.
Thank you all for being here to give advice and support to others, it means more to me than many people may realize.
Signed, a broke, disabled, weird college student, living on her own, dealing with all of this with parents who have no idea how to interact with me and all the problems I am forced to live with on a daily basis.
-Dev
My daughter is going through the gi issues. She has POTS as well Her GI Drs do not know what to do. Any advice?
My daughter with POTS and Ehlers Danlos Syndrome has severe Gastroparesis (paralyzed stomach). A stomach emptying test verified the Gastroparesis and she now has a stomach pacemaker which saved her life. Prior to the pacemaker, she spent weeks at a time in the hospital from dehydration and malnutrition due to non stop vomiting because her stomach was not moving the food through her digestive system.
Dev,
I am so sorry to hear about your situation. I totally get it especially the constant dizziness and how people just don’t understand. The main difference between us is I am 53 and have become much more compassionate towards other people with illnesses. It seems like people who have never suffered themselves have trouble empathizing. You are not alone and when you have children you will be much more sensitive to their needs. I go to Cleveland Clinic Neurology and see Dr Wilson in case you ever could try a new doctor. He is amazing and diagnosed my POTS when 15 other doctors couldn’t.
Good luck to you.
My daughter is 24 and has had POTS symptoms since age 14. She was never very active because it made her feel bad and have dizziness and headaches. She has always had diarrhea and nausea also. 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. She would pass out more often but has learned to sit or lie down quickly to prevent losing consciousness . She has fatigue, fast heart rate with standing and low blood pressure . The only med she is on now is Zonegran for headaches. she drinks a lot but says that salt does not help but I think she is not taking in enough salt. She cannot eat very well because of constant nausea. She is on probiotic but her diarrhea and nausea will not subside. During her pregnancy the first few months she was very ill and had to lay around all the time but then in middle and end of pregnancy she improved due to her blood volume increasing? (my opinion). She has tilt table scheduled but no one here in Arkansas has been much help . Going to Cardiology and Gastro docs in Memphis, TN soon.
I live in Memphis. It was hard to find a Dr who knew anything about Dysautonomia, POTS, etc… There is a nurse practitioner that I saw that knew a lot about it. Her name is Debbie Turner. She’s with Semmes Murphy now. You might try her.
Realize they have dysautonomia/pots specialists in Tennessee, ar Vanderbilt. Maybe you can go there while in Tennessee.
Its very disturbing and infuriating reading all of the comments, i’m 32 y/o female, mother of 3, youngest is 5. I have been dealing with these issues for about 3-4 months. The increased heart rate, loss of weight, headaches, shortness of breath, etc. i live in lousiana, we dont really have a specialist here either. I read some comments that people have had this for years!!! I cannot continue like this. I am like most of you, better laying in bed or sitting. My heart rate literally doubles just getting up to use the bathroom. Ive never fainted, Thank God. Im desperate for answers, or at least treatment that works, seems like no one had any success with any treatment above. we are not alone in this struggle, that makes me feel better, but i actually want to feel better.
I have 2 children with POTS and we live in Louisiana just outside of New Orleans. My daughter was diagnosed at UT Southwestern in Dallas, TX (as there is no testing facility for POTS in Louisiana other than having a tilt test performed) 13 yrs ago when she was 16. My son is 16 now and sees Dr Flatt in Lacombe, LA, a Pediatric Neurologist who understands POTS. We have not found a Neurologist for adults who knows enough about POTS but since my daughter is knowledgeable when it comes to POTS, her primary care doctor treats her for it. Until my daughter became too ill, she was studying to become a Pediatric Neurologist and wanted to specialize in Dysautonomias. The good news is that more and more doctors are becoming familiar with POTS. 13 yrs ago, the doctors that my daughter saw didn’t have a clue of what POTS was. Now, we get a better response when we say she has POTS. They have at least heard of it and don’t automatically think something psychological is the issue. I think showing the doctors proof from UT Southwestern tests makes a big difference in their attitude and treatment.
I’m in SW Louisiana. After years of the run around, irrelevant treatments, false diagnoses, too medications to remember, a spinal fusion, and two first rib resections bc of Thoracic Outlet Syndrome. In early 2017 My geneticist at ochsners in New Orleans diagnosed me with Ehlers Danlos, CFS-ME. He has recently told me that the Dysautonomia component is beyond his care. I received a phone number to a former patient of that presented the same. She had international blood work done and communicating with her was his only idea to guide me on where I go from here. I have not received any return calls or texts. I’m absolutely hopeless at this point. The POTs,
DDD, PCOS, gastrointestinal problems, sweating until my whole head of hair looks like I just got out of the shower, feeling my heart want to break through chest from beating so hard, migraines with tunnel vision and tinnitus, anxiety, sacfricial professional and personal identities have been completely stripped. Custom podiatrist made shoe inserts, joint stabilizing braces for every joint in my body, compression socks daily, physical therapy twice a week, additionally because I’m a mental health professional I did advocate to have myself referred to a psychologist. 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. Once upon a time, there was nothing in the world that made me feel like I did after a days work. I was valuable contributing member of society making differences in youth lives. My dad now buys and delivers my groceries, takes to me to any appointment requiring more than 25 minutes of driving, takes out my trash, brings me his home cooked meals and sweeps my floor. That makes my heart ache and is an unbearable side effect to having to be a full grown woman with a masters, car, condo, career who becomes the burden to my aging daddy. I should be taking care of him.
*I really need help in finding someone who can help, who knows what they’re talking about, who doesn’t just throw in the towel. I’m asking for any names, any ideas, anthing at all that will at least out me on a track back to happiness and not constant excruciating pain or being the unsuspecting spontaneous victim at the mercy of my body. Please, anyone.
Dr Wilson Cleveland Clinic Neurology. I am going through the same thing. Getting a diagnosis has lifted a weight but added a new one since now I am being tested for which kind of POTS. There are many kinds of neurologists you want one that deals with the autonomic nervous system if you cant get to Cleveland. When I am there I cant tell you how many people travel hours and from out of the country to get treated there. Good luck and I understand your frustrations and suffering.
(Orthostatic HTN/Hyperadrenergic POTS, ACM I, Aortic Aneurysm, newly dx’d hEDS) I completely understand your situation. I recently found the physician/specialist provided below. She is the ONLY one who instantly knew what was wrong with me. She does telephone and video conference consultations. Very knowledgeable, compassionate, and has formulated a cohesive plan for me. I have been suffering from seemingly unrelated symptoms for years and years, which suddenly became overwhelming about 12-18 months ago –I have been housebound ever since. I am “only” in my mid 50’s and desperately want my life back. I feel that Dr. Blitshteyn may be the one to help me get there.
Dr. Svetlana Blitshteyn
Dysautonomia Clinic/Amherst Neurology
300 International Drive, Suite 100
Williamsville, NY 14221
Phone: 716-531-4598
Fax: 716-478-6917
http://www.dysautonomiaclinic.com
How many of you with POTS are slightly or more than slightly overweight? I have 2 children with POTS. My 29 yr old has always had issues and 16 yr old started with issues at 12 yrs old. They both also have Ehlers Danlos Syndrome. Most POTS patients are physically active and thin when symptoms begin.
When my daughter gains weight (5′ 4″ weight around 145 lbs) her POTS symptoms dramatically improve to almost gone. When her weight lowers back to her original weight of 120 lbs, the symptoms debilitate her. All symptoms re-appear in full force. I need someone to research why weight affects POTS patients.
Note: she also has severe Gastroparesis and internal organ prolapse and my 16 yr old also has Klein Levin Syndrome and scoliosis
POTS & Addisons Disease…
I was diagnosed with Addisons disease at the age of 16. I have a great health plan and dealing with it well now. Within the past year…my 14 year old sister has been diagnosed with POTS, but she just continues to get worse even with medications. Her doctors are not being proactive. She is on the verge of having to withdraw from public school to home school. I’ve read that Addisons disease can be an underlying factor of Secondary POTS? Is there anyone here that is currently diagnosed with both? During our pre-diagnosis era…we share about 90% of the same symptoms. I would LOVE to speak with someone that has been through the diagnosis phase of both POTS and Addisons. It has been a struggle to find a doctor who knows enough to treat her. Does an Endocrinologist treat both diseases? Or is there a specialist? We are from Alabama and literally cannot seem to get help without being put on a six month wait list. Hospitals just refer us to these doctors with a six month wait list. My Addisons was discovered as my body was about to shut down, and I am looking for any answers that will help her before she gets to this point!!!
Thank You all for sharing . I have found allot of answers from the information provided that lead to my daughters latest diagnoses. I will share my daughters story in hopes for more guidance. I was stationed in Jacksonville NC. When my daughter was 8 she started have horrible headaches. After many trips to the Naval Base E.R. I had finally had enough and paid for a neurologist out of pocket. She was diagnosed with Chronic Migraines due to an overactive brain at age 9. Blockers didnt work for her, E.R. cocktails gave about 2hours of relief none of the migraine meds at the time worked.. The FDA finally approved her Treximet 80/500. $1011.00 per pill. Being Active duty my Tricare insurance would only pay for 4 pills and I paid for 5 each month. For the next 4yrs the pill was worth ever dime spent. Then at age 13 the meds stopped working and her Migraines started lasting from 10- 22 days. We were lucky that a cardiologist was present at the E.R. when a nurse was taking her vitals for check in. When she stood up she passed out in my arms. The cardiologist began to ask me questions. Later on he would diagnose her with POTS. We did what most said the salt pills , increase liquid intake, and things seemed to work until age 15. Now living in Florida We had a hard time finding a doctor who understood her Pots or Migraines. It took going seeing 6 different doctors to get a referral to a neurologist and Cardiologist. By the time I found one to refill her prescription for Treximet . Migraines and Pots became out of control again. My then 16yr old daughter went from a walker to a wheelchair. We now have a neurologist who is working on getting her blood pressure under control with 20mg propranolol, and Xanax and Percet 10 as needed. My daughter now 17 has been diagnosed with Hyper and Neuro POTS ( you literally see the blood pooling in her legs and feet when sitting up) Ehlers-Danlos syndrome hyper-mobility (Both her feet have turned inward to the point she trips when trying to walk). Her Platelet count is still High, Her B12 is still low even after taking B12 shots and pills, We are currently waiting for an appointment with the cardiologist who knows a little about POTS. I’m willing to travel to Any State and pay what ever the amount is for her to see someone who specializes in her conditions. She is currently on Home Bound from her High School . She has worked hard to maintain her high GPA and its paid off with offers from IVEY League Universities. My hope is to find guidance on a long term care plan to give her a normal life as possible. I should add she has had no infections, no surgeries, no trauma . Thank you again for all your knowledge and I prey all of you will find resolution.
Hi Cynthia,
First of all….thank you for your service! We are also a military family dealing with both the challenge of this debilitating chronic condition and the challenge of dealing with the other debilitating condition, perhaps even more debilitating, which is the Military medical system. Dealing with that has been a horror! I can’t provide you any information about the condition, as we are still trying to effective treatment after 7 hospitalizations, many, many 911 calls, and visits to some great docs and visits to some dreadful doctors. 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). There is a doctor at Brigham and Women’s in Boston that specializes in POTS. His name is Dr. Peter Novak.
Regarding flares…. 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. If your daughter is 16, is it possible that her cycle could be wreaking havoc?? Just a thought.
One thing I have learned from my son’s experience is we really seem to be treating the symptoms of POTS aka….tachycardia, bradycardia, syncope, digestive issues, extreme rapid wait gain/loss, neuropathy, BRAIN FOG, cognitive dysfunction, dizziness, seizure-like episodes, etc. and always have to be on our toes for the “challenge of the day”. I hope you find the help you need for your daughter and don’t forget to take care of yourself! Please keep us posted!
Cleveland Clinic neurology Dr Wilson specializes in autonomic nervous system disorder and they will not give up. You will get an appt with his nurse practitioner first and he is amazing. I got a correct diagnosis the first visit. Good Luck and I empathize.
(Orthostatic HTN/Hyperadrenergic POTS, ACM I, Aortic Aneurysm, newly dx’d hEDS) I recently found the physician/specialist provided below. She is the ONLY one who instantly knew what was wrong with me. She does telephone and video conference consultations. Very knowledgeable, compassionate, and has formulated a cohesive plan for me. I have been suffering from seemingly unrelated symptoms for years and years, which suddenly became overwhelming about 12-18 months ago –I have been housebound ever since. I am “only” in my mid 50’s and desperately want my life back. I feel that Dr. Blitshteyn may be the one to help me get there. I will pray for all of us who struggle with this illness. GOD bless.
Dr. Svetlana Blitshteyn
Dysautonomia Clinic/Amherst Neurology
300 International Drive, Suite 100
Williamsville, NY 14221
Phone: 716-531-4598
Fax: 716-478-6917
http://www.dysautonomiaclinic.com
What is it called if you have the opposite of pots? I get rapid heartbeat when I bend over not when I stand up.
Thanks!
I have POTS for years started with panic attacks in my 20’s was better for a few years now at 78 have it gain for the last 5 years always had stomach and inflamed throat, about a month ago started taking allergy medicine Zyrtec, small meals low carb mainly. meat fresh fruit and veggies. my inflamed throat cleared up and feeling much better for the time being hope I keep feeling better and hope this might help someone. My symptoms were very low bp couldnot stand in one spot heart pap, did not sweat, panic attacks, which made me more anxious
A consultant has told me today that my 14yr old is pre Postural tachycardia syndrome (PoTS) ?? Is that possible ? 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 ?? I’m confused now as does she have pots or not ???
I would say yes she has POTS there is no acceptable range for POTS you have it or you dont. DONT give up many doctors have no idea what this condition is and try and find a neurologist who specializes in autonomic nervous system dysfunction or a syncope heart doctor. I see both kinds at Cleveland Clinic. Good Luck to you and your daughter.
Hello,
Thank you to everyone that shares their story. It’s so helpful to read your journeys.
I’m looking for help for my 13 year old.
She was diagnosed with POTs one month after an adverse reaction to eye dilation drops at the eye doctor. We met with a pediatric cardiologist who trained at the Mayo Clinic POTS clinic. He diagnosed her within 5 minutes of his examination.
Everyone talks about the dizziness with standing, but does anyone have severe dizziness all of the time?
She is very sick with 24 hour dizziness and feeling like she will pass out. Her BP is within normal range, she drinks 160 oz a day, and is on a high salt diet. She sometimes sees black spots if she turns her head too fast or gets up to walk. Some of these persistent and unresolved symptoms of dizziness even while resting and laying down, do not seem consistent with other descriptions of POTs.
If anyone can relate, I would appreciate hearing from you. I’m so worried about her. Thanks for reading!
My son has symptoms like your daughter’s. He is nauseated all the time and cannot balance at all. It is not just when he first stands up, it is all the time. He can only stand/walk with a walker for balance and cannot sit up without his back supported or he gets very off-balance and feels like he will fall.
Teens just get Pots for who knows what reason, or after a vaccination. True Pots is when BP remains normal upon standing, but hr elevates and remains elevated leading to pre syncope or syncope, usually if one keeps standing without moving. All other variation is not pots, though many including doctors call it pots. 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. TTT must not be done after a prolonged bedrest. I gave up (diagnosed in 2011) on finding not just cure but anything that would make me function again. Most doctors are idiots. Good luck !
Thank you to all of you for your sincere input. It is so nice to find that I am not nuts (well, I could be for other reasons) or alone about what I have been plagued with since my early teens and even childhood. But the big difference for me is that I was born with rare A-Typical Cystic Fibrosis, which like POTS, is elusive and hard for doctors find or understand shifting patterns from week to week and sometimes hour to hour. In addition to those symptoms I believe I have had POTS for my life after 9 yrs. of age when I had a severe bout with acute pancreatitis (one of CF’s symptoms so don’t worry). It was intermittent for the next couple of decades but really has been ongoing since I turned 40 (diagnosed with CF at 38 and called a mental case by crappy doctors, like most of you shared, before that).
I have only recently stumbled upon POTS with my nurse practitioner helping. Yes, I unfortunately have Medicade and can’t get a doctor at the present time who takes it, and I can’t afford the medicines to help with CF much less the ones many of you have described in your individual stories and attempts at curing POTS for you or your child, family member. But in the recent months my POTS symptoms have been almost daily and very different from my CF symptoms I am used to. Very debilitating and it scares my 18 yr. old daughter who has always been the best help for me over the last several years with my Cystic Fibrosis. We have, at times, thought it was a heart-attack or ??? Finding out about POTS has answered a lot.
I got a flu vaccine right before this kicked up to a most unpleasant level this year. That is why I mentioned this to my Nurse Practitioner and we are working on getting me to the right specialist (looks like a cardiologist is what most of you have found the best focused help). So far the Gatorade, salt and extra water daily have been a big help to me at this time. I also know a body-builder with a sister who has POTS and she took some of his Creatine HCL 189 (GNC brand) a year ago (because it helps the muscle to retain a little more water), and she wanted to see if it would help her and it did. So I have been using it for a couple weeks and it has made a difference in the nausea and dizziness in the morning, and we suspect it is also helping me hold just a little water in my muscles (what little I have)! NOT medical advice, just thought I’d share as you all have been.
I hope from reading your stories and trials, setbacks and solutions and best approaches to take, that I will start by researching doctors who address POTS and take Medicade (GOOD LUCK as I’ve read). 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. Yes, age and CF are also big factors, but I now know the big missing gap has been the POTS and I have to thank this web-site and all of you kind people who are struggling with this and all of it’s symptoms and effects on your bodies and your lives. I have done much research on the syndrome itself, but now I am ready to put more into the arena for solutions and hope.
Thank you again to all of you who made the step towards sharing what has worked or not worked or still in the works to find out. I guess I am there now too, and I believe that putting yourselves out there in such a vulnerable position and telling your experiences, is bold, generous, whole-hearted and about as real as one can get. Awesome!
Any input from any of you, as to how things are going since starting your journey to solving POTS or other helpful information, I would love to hear about, and to chat, as I also feel pretty lonely from time to time and like to share all kinds of stuff that may help, or distract and just talk about life in general. I wish you all continued success in your efforts for yourselves or your loved ones, and hey, in time, this syndrome won’t be unfamiliar to the medical world, with more help and possibilities available for us affected, without being called a psychiatric mess for decades, (even when you get teacher of the year 3 times over 10 years of teaching alternative HS) as the start of this puzzle was for me and most of you also. So, Thanks for taking the time to help complete strangers in need. Again to you all, AWESOME!!