IamA 20 year old girl suffering from an incurable and sometimes untreatable condition called POTS (postural orthostatic tachycardia syndrome) AMA!

What happens when you get aroused? Can you have an orgasm?

It doesn't effect any of that stuff.

This IS an AMA though.

I answered truthfully :)

Really, I figured an issue with a racing heart would be a problem

I have never noticed it, probably because I am focusing on something else. I'm sure if I was hooked up to a HR monitor I would see it.

wow, my mother has had this - as well as Ehler-Danlos - for the past ten years and it is next to impossible to find a doctor that knows anything about it. An awful illness. If you don't mind, could I maybe put her in contact with you? I don't think she's met more than two people that have the same illness, and that's just for an hour or so at the two appointments she has in London each year.

I also have Ehler Danlos. I wouldn't mind at all! I will PM you

Hi! I have some questions :)

*Does this disease affect your social life?

*You have been diagnosed in 2012.What took so long to find out about POTS? I mean, you have some pretty serious symptoms wich are hard to ignore, did they appear after the diagnostic?

I wish you the best! Ps: Sorry for my English,I hope it is still understandable :D

My social life has gone down, but I found who are willing to accept me for who I am. The biggest problem is making, because I have to cancel a lot. Also I can't drink and a lot of my friends like to go to the bars.

It actually didn't take too long to get diagnosed. I did research and my doctor and I talked about it. He said he would get me a tilt table test, and that's how we found out. Some of my symptoms have came on after I got diagnosed.

I have DCM and after my initial diagnosis my unwillingness to go to bars (since I couldn't really drink) really killed my social life. I have since moved and made an entirely different set of friends who don't let their social lives revolve around drinking and it has really helped. We still go out to bars occasionally for specific activities (i.e. karaoke) but if they want to pub crawl nobody gives me shit anymore for skipping out.

When I first got dx'd my friends stopped calling because they simply didn't know how to handle the news. Did your friends kind of drop off for a bit as well? It's hard because I think people think you'll want to talk about this big sucky thing in your life and how hard it is and they would rather avoid it, when in actuality I would have loved to hear about everyone else's normal, exciting lives and would not have dwelled on my situation at all.

Yes, a lot of my friends just dropped off the radar. I made new ones pretty quickly though :)

You're lucky you got diagnosed quickly! It took me over 6 months of 3-4 doctors appointments a week, during the course of which I got told I was lying about ten times and that I had two different types of cancer. It was awesome.

I got told I had brain cancer and stuff. I only got diagnosed so quickly because I did some research and thought it was POTS. I made them give me a tilt table test even though they didn't want to.

Just a shout out, nice to see someone else with POTS spreading awareness. I was diagnosed in 2006. POTS sucks but you can have periods of "remission" where symptoms aren't as bad. Hang in there!

Hello! I wanted to do this AMA to spread some awareness :) I feel like no one knows about it :(

So what is your day-to-day life like? Do you work or go to school?

My day to day life varies. One day I will be able to go out with friends and the other I will be in bed all day with a heart rate of 130. I do have a job but I have to work short shifts since I can't stand very long. They also know I could faint very easily, so I have to right to sit in the back when need be. I am also going to school, but I had to drop out of the university I was going to and I started to take online classes at a community college.

Do a lot of people think you are faking a disorder because there aren't a lot of outward signs?

Yes! That is a common problem among people with this disorder. We look fine so people judge us for the things we do. Even doctors doubt patients and tell us that it is just anxiety. I personally had to push to get more testing done. My family didn't believe me until I fainted and ended up in the ER. The only outward signs are my swollen feet, which happens because of blood pooling.

That must be extremely frustrating. It sucks when people assume that you are 'normal' based solely upon appearance and/or spending a small amount of time with you, but that seems to be the way of the world.

It can be frustrating, but I try not to let it bother me. One of my friends I met (online) who also has POTS told me we don't owe anyone an explanation for why we use the wheelchairs in stores or have handicap parking. I try to remember that because it is true. It's only gets to me when people try to tell me it's all in my head.

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It would be nice if I could do that haha :P Usually when people say that I get super flustered and all my symptoms act up. If I know the person I have the feel my pulse, which tends to be high.

What kind of job do you have? Also, if you have a boyfriend what's his take on POTS?

I work at Jimmy John's. Which isn't the greatest because I have to stand the whole time, causing me to be dizzy and have a high heart rate.

I did have a boyfriend while I was sick, but it's a different case because he knew me when I was healthy. He was very supportive and never made me do something I couldn't do. I could tell it was frustrating because I couldn't always go out or I would get somewhere and immediately have to leave. He went to the ER with me when I needed to go and stayed home with me when I felt sick. We couldn't do things like before, but we still had a lot of fun.

When you make a #9 unwich, do you put a lot of mayo on? I've noticed that it varies depending on who makes it for me and am curious.

This is how the mayo portions are supposed to work: Light mayo- a leveled scoop Regular mayo- a heaping scoop Extra mayo- a leveled and heaping scoop.

It may seem like you have more or less depending on the size of the unwich. It's really hard to spread around sometimes so it ends up sorta heavy in some areas.

How are you able to handle that job? I can't stand for more than two or three hours at most, given that I'm doing something I really enjoy so I'm not paying attention to my symptoms. Do you wear any stockings or have a stool nearby to sit on?

I work very short shifts and am able to sit in the back when I need to. I also wear tights under my jeans and sometimes wear a tight top under my shirt.

I've been dealing with POTS for about 8 years now. I'm glad you're trying to spread awareness! I've had so many people, including doctors, just not understand it at all or think I'm overreacting when I get too lightheaded or dizzy. Ugh.

It's had a huge negative impact on my life (I used to be a dancer) so I know how frustrating it can be. If you even want someone else to talk to about it/vent/whatever, feel free to send me a message!

I have had to teach so many doctors what POTS is. It's actually pretty sad.

Same here. I explain it and they're like "hmm, never heard of it." D: I mean, it's unreasonable to expect that all doctors know every single syndrome but every time I go to a new doctor for whatever reason I have to give them my whole story.

It's frustrating at the ER because I know all I need it IV fluids and maybe some more Lopressor ( beta blocker) but they don't believe me and freak because my hr is so high.

My husband has syringomyelia and chiari ... if he needs er/doc in the box it's this ordeal of me explaining and them being afraid to touch him. Trying to get something for strep while out if town recently was ridiculous!

Yeah it's incredibly frustrating sometimes :/

Like a lot of us say, we just don't look sick!

Yeah we really don't :o

Is one of your symptoms a "brain cloud"?

Yeah brain fog. It makes it super hard to focus on anything. I usually mess up typing or talking. I end up saying the wrong things.

You should watch Joe Versus the Volcano, it is funny and topical. :D

Haha okay :)

I sometimes get a weird stutter where my brain just freezes up for a few seconds and I literally sound like a broken record :p

Me too! Like H-h-h-hey guys how are.... how are... how are you? is that the right word? :P

What was the biggest scare you've had?

I passed out on a bus and woke up not able to breath in the ER. The HR monitor they hooked me up to was going crazy and the nurses were all over me. Immediatly hooked up to a IV and they gave me oxygen, like I said I couldn't breath. I was in and out of consciousness, and felt like I was having a heart attack. Finally after injecting me with some meds my HR went down to 160 (it was 200) and it continued to slowly fall under 100 over the next couple of hours.

Do you have a medic alert bracelet, or card in your purse out something? Ya know, just in case...

I don't but I really should. For things like passing out on the bus and stuff. They just cost money I don't have.

I don't have anything else to say except good luck to you and may happiness find you!

Thank you :)

Is it possible for you to exercise?

It is, but it is incredibly hard. I pass out very easily and my heart rate skyrockets. During a stress test I could only walk on the treadmill for 2 minutes before my HR was 200. I hope to being doing physical therapy soon where they monitor my heart rate.

I have POTS too! Good to know I'm not the only one lol.

Yay! Well not yay to POTS but yay to finding someone who can relate :)

Hey! My doctor was discussing POTS with me the other day s a possibility for me, though she doesn't have experience with it, and I can't find any doctors near me that know about it at all. I also have anxiety, and when I ask people about the possibility of dysautonomia* they always insist it is just my anxiety causing the symptoms. I worry that they are right, and I'll spend all this money for tests to find out it's just anxiety. I also have Elher Danlos.

So my question is, was it worth getting a diagnosis?

Oh yeah it was worth it! I also have anxiety so no believed me for the longest time. I have to drive 3 hours to see my doctor about POTS, we usually just talk on the phone though. The main test they use to confirm POTS is a tilt table test. If you really believe you have POTS push to have one done. Especially since you have EDS.

When I got diagnosed I cried though. I was happy to finally know, but I wanted it to be something curable.

Not sure if you know, but anxiety can be caused by POTS due to the release of high levels of adrenalin, which can trigger panic attacks and raise stress and anxiety levels.

Very true, I feel like I get more panic attacks now than I did before. I have learned to keep it under control more, and my beta blocker helps a lot.

Did any of your doctors diagnose you with atrial fibrillation at first? I recently found out afib runs in my family (I also have the symptoms) and it scares me! It's amazing how things like this are misdiagnosed and can go undetected for so long! How difficult is it for you to take OTC medications or do you have to go to the doctor to cure the common cold?

I also have POTS so I just figured I'd share my experience as well.

Every time I go to my cardiologist (earlier in my diagnosis = once per week), they would do an Echocardiogram while I was relaxed, and while I was having an "attack" just to check for any sort of afib.

They did the same for me

I did not get diagnosed with AF, but I am having some palpitations that I think are PVCs that I have to get checked out. It can be really scary when your heart starts messing up :/ I can't take most over the counter stuff or prescriptions. It sucks because when I get sick I kinda have to deal with it, but I literally feel like death haha. Most OTC stuff makes me feel worse.

No question, I just wanted to say congratulations for struggling through having this condition and still managing to answer strangers fairly cheerfully; one of my friends suffers from Chronic Fatigue Syndrome, and her strength of will, as yours does, never fails to amaze me.

Thank you! That is very nice of you to say.

Are there any foods that you are forbidden to eat because of your condition?

There are foods I shouldn't eat but I still do sometimes. I shouldn't eat a lot of sugar or foods with caffeine. No energy drinks ever. I have my own specific triggers other than that.

I can't take a lot of medicine because of my condition though since I am hypersensitive to most.

No caffeine at all? My father and I have POTS and we both drink coffee with minor side effects. It helps me get rid of my fatigue, even though it'll raise my heart rate a little bit. It's funny how different some forms of POTS can be!

Yeah even tea makes me jittery! It really is funny haha. That's why it's so hard to treat, everyone has different symptoms.

As someone who was diagnosed at 28 with Dilated Cardiomyopathy (after having all those same lovely side effects that you get) but had symptoms as early as my late teens, I understand some of the struggles you currently face (and will continue to face) with your condition.

I find some of the hardest issues, for me, have been in getting people to understand that there will be times when I feel sick and that they need to slow down a bit when I ask them to. Do you ever feel self-conscious about your friends seeing you in a lessened/weakened state? I admit, it's hard for me to have gone from being this super independent go-getter to someone who gets winded going up stairs and needs help balancing at times.

Also, I see they have you on metoprolol. I started on that, then got switched to carvedilol. Have you had any weight gain side effects from the drugs? I am being titrated over to busiprolol right now in an effort to help shed the 100 pounds that carvedilol packed onto me in the first year I took it.

This was more statement than question. Sorry about that. I feel a weird sense of community with other young heart patients and it's always refreshing to see someone else going through similar circumstances. It's pretty shitty when you go see the cardiologist and you are the youngest person in the room by several decades.

I get very self conscious about being sick and I usually try to hide how I feel. Sometimes it makes it worse because I should go lay down, but I make myself go out with people.

Yes I have gained some weight while being on metoprolol but I can't really exercise and I haven't been the healthiest eater haha.

It's fine :) I also feel connected to the younger patients. My mom took me to the cardiologist and someone said it was nice of me to support my mom... even though she was there for me. The next youngest person there was maybe 70

I have some of these symptoms but the doctor told me it was vertigo. After reading this I'm going to look into it more. I hope the best for you. Are you able to drive? Or play video games. Or is it all the same?

I usually can drive thankfully. I also play a lot of video games when I'm stuck in bed. I have had days where I can barely open my eyes I'm so dizzy though.

Really push your doctor to look into thinks. I had to when my symptoms showed up. I went through a few doctors before I found one who believed me.

How are you cleared to drive if you pass out frequently? Don't people who pass out generally have to have a long period with no incidents to be able to drive legally?

I only pass out when standing up for long periods of time, never when I'm sitting down.

My family doctor is awesome. Always trying new things and shit. Doesn't like pushing pills on people unless they have to have them kinda thing. I'm happy to hear you can drive and still play games. I would go nuts without my games lol

I would go crazy too x.x I'm glad I am able to work the small amount I do, it keeps me busy and makes it easier to sleep.

That's true .you should uploaded and try the YouTube life making that YouTube money. That way you can sit all day not having to worry. Sorry if this sounds a little bad joke but I have been on vaca and drinking since noon. Hope the best.

I have thought about doing that, but I don't think I'm funny enough :P

Best question of all, Do you like hugs?

Yes I do :)

The symptoms of POTS generally do dissipate overtime, but not always completely. As a 22 year old male who was also diagnosed with POTS at 13, I can say I've struggled with much of what you're going through currently. Including but not limited to every single symptom you've listed, as well as doctors telling me it was all in my head.

The "brain fog" was/is the most frustrating part of the illness for me. During my worst periods it was also negatively impacting my memory. The doctors had me on Provigil for awhile, which worked wonders. So if that particular aspect becomes a big issue I'd look into it. (Careful, it is addicting.)

But like I said, it does get better and I wish you the best of luck!

I will ask them about it :) Best of luck to you too!

Have you considered medical marijuana for your, ahem, POTS?

I actually have, and it was horrible. Started having seizures and shit. HR jumped to 200 and BP skyrocketed. I have tried it now and again for pain, but it still makes me feel sick most the time.

Whoa, really? That never happens with me.

I think I sorta panicked too. My BP is unstable so it gets too high, then I freak out causing a panic attack. I might be able to now that I have my beta blocker, but I'm to afraid to try.

I have POTS too and was diagnosed with it within the past month! It's AMAZING to find someone dealing with the same things as me!

It seems like I've found a lot of people with POTS on this thread haha.

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That's great! I hope we both recover one day!

Wow thank you. I accidentally clicked on this, but i think this is what i have. I've been to several cardiologists and haven't gotten any real answers just a confirmation of my symptoms. I'm very sorry you have to deal with such a severe case

If you really think you have POTS pus for a tilt table test :) Then find a doctor who knows about POTS. Also get tested for lyme by a specialist.

I actually don't have that bad of a case. I still can maintain a job and a small social life while many are confined to beds everyday.

I actually have done a tilt table test, but this condition was never mentioned to me. That was about five years ago. He told me i had "near syncope" which, you know, is a symptom not a diagnosis. i guess i will try to get the results of that test to someone who knows what he's talking about. Thanks again!

You might have NCS which is similar to POTS

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I have the same life expectancy as healthy people.

Hey! I have POTS too!

I take something similar, propranolol. I also take midodrine, fludrocortisone, and desmopressin.

I have had it for five years, I was diagnosed two years ago when I was 16.

I usually get fatigue, dizziness, neck and shoulder aches, cheat pain, tcycardia, intolerance to heat and exercise, and brain fog.

I used to take propranolol, but it made me too dizzy. I think my most worrisome symptom is the palpitations. I think they may be PVCs but I can't be sure

Have them run a cardiac monitor on you for a few weeks. It will record anytime there is an abnormality detected and/or you press a button to indicate a symptom. They found a ton of PVCs on mine each time I pressed the button to report palpitations (and a lot of PVCs other times when I wasn't even feeling symptomatic). If your PVCs are frequent enough there could be some electrical issues to have an electrophysiologist look at.

The monitor is basically like a long-term holter but you can change out your electrode pads each day and shower/bathe.

Thank you! I will ask them about it next time I go in. I sorta think my electrical stuff in fine because I've had soooo many EKGS and stuff. I do want to figure out my palpitations though.

I've had POTS for a few years. I had to go out on disability from my job at a nuclear site as fainting while holding plutonium probably isn't a good thing. I was out for about 6 months trying to figure out why the heck I was fainting. Since I started taking Fludrocortisone and increased my salt intake I haven't fainted. Seriously load up on salt and drink a lot water. It helps with increasing blood volume. I'm actually able to exercise okay as long as I keep moving my legs the whole time so that blood doesn't start pooling. Standing still for more than ten minutes feels like running a marathon though and I avoid it at all costs.

Yus all the water and salt. My room is full of pretzels and G2 haha.

Hi! I know this post is old but I am eighteen and I was just diagnosed with POTs a couple weeks ago after two years of being undiagnosed. I am having a lot of trouble with the symptoms and functioning normally. My symptoms are continuing to progress making everyday life harder and harder. I am a dancer and there are times when I get so dizzy in class I pass out. I am also leaving for college next spring and that worries me as well What treatments worked best for you? And how do you cope with this in college or in life on your own?

I personally had to stop most physical activity's like running, or biking. College is still tough, even though I am currently in online classes. My best advice is to not over do it and get disability on campus. My only treatment is the metoprolol twice a day. I wouldn't be able to function without it. I was legitimately depressed last year during my diagnosis. I lost friends and a boyfriend to my illness. This year I have people who love me even though I can't do everything.

Thank you so much! It is super tough I am still in the diagnosis part of it all trying to figure out my meds and stuff... definitely not fun! So happy I know at least one other person who gets it, feeling like this everyday really takes a toll on your life

I completely understand. If you ever need someone to talk to feel free to PM me on here :)

I have POTS too. It took me over 30 years to be diagnosed. Just wanted you to know that you aren't alone. Also an ED type 3 person. :)

Also has your doctor put in an internal heart monitor? Mine did a bunch of externals then I started seeing Dr. Grubb and he did an internal one. I now have a pacemaker that has made a big difference.

I haven't considered a pacemaker yet since all the doctors say it might go away. Since I'm so young. Fingers crossed :)

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It wasn't a good pic, sorry!

What's the most debilitating part of the disease?

It's hard to say because some symptoms are really bad one month then better the next. It just makes it hard to go anywhere. I either can't go, or I go an I feel awful. That's why I have to do online classes, because physically couldn't make it to class.

I don't know anyone with this condition but how would you want people to treat you?

Normally :P I don't want anyone to treat me differently unless I need to go to the ER. It would be nice if people could be more understanding about it though.

You may have cranio-cervical instability, which causes your head to misalign on your spine, putting pressure on your nerves and upper spinal cord. The Chiari Institute treats many people with this kind of disorder.

I have been checked for that :)

Hi! Reading through your post, I was reminded of something I found while stumbling. It's a funny little blog that's actually about this girls life and living with POTS. Letsfeelbetter.com I was reading through for a couple of hours, fascinated and amused. It's pretty impressive to be able to laugh about something as serious as this. I wouldn't know what I would honestly do if I were put in the same position.

Thanks for the link :) I used to feel the same way before I was sick, but I realized I had to put up with it. I will probably be stuck with it for a while :P

Lyme disease caused my POTS. I was sick for years until all the tick borne infections were treated. Always try to find the cause of syndromes like POTS, usually it starts with an infection.

I am going to be tested for lyme soon, but I don't live in an area with ticks and have never been bit (to my knowledge). I had a bad staph infection right before I got sick.

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So a C6 will be accurate? The staph infection I had wasn't that bad, just a regular staph. I don't have polyneuropathym and I didn't have a Herx reaction. I think my immune system is okay, because I have only gotten sick one other time this year. I will get that tested anyway though.

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It was just a staph infection I got from a locker room, it was only bad because I didn't go to the doctor right away. Thank you for the advice! I will be sure to get tested right away. I just hope if I do have it I can still live somewhat of a normal life.

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Well I am getting tested within the week so I will let you know :)

When did you realize that this was a going to be a serious problem/you needed to go to a doctor for it?

I had supraventricular tachycardia! Ever since I could remember, I had SVT. My dad didn't think it was a big deal until my heart started racing when I was sitting next to him and I made him feel my chest.

I realized it when I couldn't walk to my classes anymore without taking a break. I used to be pretty in shape, so it worried me that I was so winded.

You sound alot like a girl from my Lil hometown! Where I live I pray for you and wish you the best! But I do believe you could be this girl!

Thank you!

Hey! Me too. I've never really heard anyone else talk about having it. Also have EDS.

It seems like EDS is so common among most with POTS. I always like meeting other potsies :)

I have POTS too! Gotta love explaining to every employer, professor, etc. that you casually pass out. All the time...
I take a sodium retainer, and it tends to help. Florinef is the name of it I believe. Increasing sodium has helped with the every day dizziness, like getting in and out of bed, sitting to standing, but doesn't help me at all when I get dehydrated, etc. I think because it raises your blood pressure, which means your bpm has to lower to compensate. But yay for raising awareness! Hopefully one day we'll get a solution that's not "Oh, well most people outgrow it... eventually..."

I seriously hate it when doctors say that. It isn't true for a lot of people that I have talked to, especially people with EDS. I also love it when they say diet fixes everything, which isn't true.

My best friend has POTS. She has most of the symptoms listed above and others, especially anxiety, and frequent nausea. She tends to avoid social situations and gets tired out easily.

What are things I can do to make spending time more easy for her?

I'd say don't suggest walking anywhere. Try to hang out in places with ac.

I'm so sorry but I fell asleep responding to you x.x I somehow submitted it. I was also going to say you should try to do an activity that she can also do. I started making jewelry and learning how to knit and I would love it if one of my friends learned with me :)

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Correct, you have to get a genetic test done to see if you have EDS. You could just be double jointed :). Have you ever dislocated anything? If you are truly concerned ask you doctor about getting testing done.

Not joking but have you tried marijuana?

The edible CBD form not thc.

I have tried some stuff before but it's doesn't make me feel good, just incredibly sick :/

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That can be caused my a drop in bp. I know a lot of people who just get dizzy when they first stand up :) I'd say check you HR and if it's really fast worry about it. Or talk to your doctor about taking your bp/hr when laying down, sitting, then standing.

Have you ever prayed for God to help you with this condition?

Nope, I don't pray at all

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It gave me seizures

..how sad

I personally am not sad about it anymore. I still have my days where I am down. Now I am doing all I can to try to regain what I once had.