IamA 21 year old girl suffering from an incurable and sometimes untreatable condition called POTS (postural orthostatic tachycardia syndrome) uodates and more, AMA!

What was the last bowel movement you took classified as based on the bristol stool chart?

http://www.gutsense.org/constipation/img/BSF-with-highlight.gif

Um I guess it was yesterday and type 6....

You said AMA. :)

I know :P and I answered. I just didn't expect it haha

It was probably lucky you were near a toilet then

Yes, yes it was. I had been heavily drinking two days before so I'm going to assume that's why.

Yes heavy drinking can do that to a person.

But it was New Years eve!

Hello! I'm a New Zealander with the same diagnosed condition, and we have next to no doctors here that actually know anything regarding POTS. Therefore it's hard to find support or valuable information here in my country. My POTS symptoms took me out of school, and I spend most my time resting in bed (when I am able I try to exercise, but it can be rather difficult). What are the best 'tools' you use to get through the day? (Besides a positive attitude! :D)

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It seems we could form our own sub reddit. Mine is due to sjogrens syndrome damaging my nervous system. Antiinflammatory drugs help with all my symptoms include the POTS.

It is worth pursuing an autoimmune diagnosis for anyone who has this symptom. POTS is a symptom, and can be caused by many diseases. However, at put age it is almost definitely autoimmune. Treating the underlying disease is your best hope for normality.

The brain fog is terrible, and now I've had 4 years experience with the condition, I can confirm it does long the damage, even when well controlled. Both by limiting your ability to learn and grow, and by damaging existing brain networks. The frustratiom of not being intellectually as capable as you were is indescribable. It is worse than losing a limb. At least a lost limb can be compensated for somewhat, and garners you some sympathy. With this disease, people just assume you're a forgetful, slow fool, who is so lazy you have to pause while standing up, like an old person.

Apart from copious immune modifiers and anti inflammatoies, all I can recommend is krill oil, and regular vitamin d intake. Also, exercise, although difficult, is super important. It makes a huge and notable difference to brain fog. Just make sure it isn't too vigorous, as it will induce fainting and possibly dangerous tachycardia. Also, avoid hot showers and baths like the plague.

/r/dysautonomia :)

You sir get me. Perfectly haha

My medication is a big one, without it I would be bedridden. Also drinking large amounts of water. A huge thing that helped me to is only taking lukewarm to cold showers. If I feel fine, then I take a hot shower it takes all of my energy for the day.

I am almost positive I have this. Went to a neurologist on nye and am going to be doing tests. I have all of these symptoms. The palpitations are more than once an hour and the chest pain is really scary. The passing out is so weird my vision goes fuzzy black and I feel like my hands and face are tingling/vibrating. Do you have a MTHFR mutation too? Pretty sure I have EDS as well as my entire body cracks and crunches like I'm made of wicker and my ribs are constantly out of alignment (from a shallow cough or from nothing!!!) I have been dealing with all these symptoms for a long time and I feel like I'm going to punch the next person that tells me its all in my head. How do you muster the energy to do anything? I feel like I have energy one day and the next I am totally tapped out (maybe even for a couple days.)

I don't think I have that mutation. I also dislocate my ribs all the time :( It hurts so bad.

Just keep pushing until you get a doctor who will see you as a person not just another hypochondriac. There is someone out there who will help you!

And honestly I have to force myself to get up and do stuff sometimes. Like this week I didn't do much of anything until New Years on purpose, then I partied pretty hard. The next few days if I even wanted to move I had to mentally prep myself. Even today I only got out of bed to go to work and I could barely move at all.

I just try to know my limits with my energy and prepare for the days that I think might be bad.

I work in the medical field. I had no idea one could dislocate ribs, sound like it hurts like a bitch!

It actually haven't done it in a while thankfully. I mostly partially dislocate my knees and fingers now. I will agree that it hurts like a bitch. It's like just getting the pain of breaking a bone without actually breaking it.

How do you... put it back in? Not sure of the terminology to use.

I just kind hold my kneecap and the bend my leg. It pops back in pretty easily meow.

Meow

:)

Interesting, but I meant your rib, if that was to happen.

Oh oh oh. Yeah I have a hard time doing that. I usually had my mom pop it back it. You just gotta make sure you push it back in right, and not mess it up even more.

This is crazy. You may be done with the AMA but I have been going to the doctors for the past year having tests and these symptoms fit. How did they diagnose this? What's the test procedure?

I got a tilt table test. That is how most people get diagnosed I think

I have POTS. Neurologist referred me to a cardiologist who made a definitive diagnosis with a tilt table test. It was easy and non invasive.

Treatment is more if a trial and error process, and I understand it is different for everyone. For me, I increased my salt intake and I make a huge effort to stay hydrated. Those simple changes made a world of difference. I do other things too, and now manage my symptoms quite well.

If you want more info let me know.

That's how I try to do it. I used to take beta blockers. They showed my heart rate, but didn't make me feel any better so I stopped. I'm also an alcoholic, so staying hydrated is a struggle sometimes. Needless to say I don't feel well very often.

I'd like to know why I got sick. I figure if I knew what subtype I have, maybe I could treat it differently. I've read that sometimes people get over it, but have yet to ever hear a real person confirm that. Been sick over 2 years now.

I have to be careful how much I drink or else it raises its ugly head again. Alcoholism is likely a significant contributing factor. I didn't even know there were subtypes! I guess my version is pretty basic. I had/have juvenile arthritis but I never considered they could be related!

I did beta blockers for a couple of years and eventually my cardiologist agreed that I could atop taking them. I am not sure if they made a real difference or not.

In addition to staying hydrated (seems too simple but it really works!) I also did exercises that helped "train" my body. The doc admitted studies on efficacy were inconclusive but it was worth a try. Worked for me.

Life is so normal now it's almost easy to forget how bad it used to be.

I think your takeaway is that there is hope for improvement. You need good medical care. If you aren't getting it, change docs. And make sure you are completely open about potential exacerbating factors like alcoholism.

I want to share my story as a PSA.

I got POTS shortly after contracting mono (Epstein-Barr). It took two years to diagnose until it was finally confirmed with a tilt table test. I tried various medications to control the symptoms, but they only helped modestly.

Finally, I saw a neurologist at a Boston teaching hospital who specializes specifically on POTS. He completely changed my life. He started me on a cardio exercise routine with the theory that as my cardio conditioning improves and my resting heart rate declines, I would be able to better tolerate the heart rate spikes when I stand up.

I won't lie - starting an exercise routine at a time when simply walking was exhausting was not easy. It took about six months to wean myself off medications and about 24 months before I started feeling normal again. I don't have any POTS symptoms anymore.

My resting heart rate now is in the 40's and I run about 20 miles per week to keep in shape. Different people respond differently to various exercise routines, but for me intense interval training was most effective.

If you have POTS, talk to your doctor about starting an exercise routine. It may change your life.

Wow that's amazing! Congrats on all the progress!

I agree exercise can do wonders!

Cardiac ablation rep here. Palpitations/chest pain could be a million things. The first thing that comes to mind mind when I hear that a young woman (if that's what you are) has palpitations is AVNRT (basically a short circuit in the heart), which is the most common form of tachycardia and is most prevalent in women. I had honestly never heard of POTS until now and I have been working in the industry for 4 years.

My advice to you is to see someone called an electrophysiologist in your area. They will run an EKG while you are having symptoms and diagnose you fairly easily. If it is AVNRT (or almost any other kind of tachycardia), there is something called a cardiac ablation to safely and permanently fix it.

It's funny how people are bringing theses things up and I have appointments set for most for them haha. I have a test just like that set up in February because I've been having a new arrhythmia.

For EDS with POTS, you should see a rheumatologist. There are a few things that can make your life easier and less painful, like bracing.

I am actually on the waiting list for a rheumatologist haha. 6 months wait minimum around here.

Are you my girlfriend? She has POTS and is 21yo

Nope haha

(Psst, guy, this is the part where you say 'do you wanna be?' and everyone thinks you're a smooth mother fucker. Any time now.)

Wingman here..

"Do you wanna be (his girlfriend)?"

Sorry guys I'm taken ;)

By him?

Haha again nope :P I know my bfs reddit acocunt name and it's not that.

Unless it's his alt

:o maybe ;P

gasp sudden plot twist

http://media.giphy.com/media/kKdgdeuO2M08M/giphy.gif

by me :D

It's true

Am I your bf? :O

Are you an asian doctor?

Hi,

Just curious - have you been to the Mayo Clinc, or spoken to anyone there? My sister has type 3 EDS (including POTS), and they have her a few treatment options that really improved her quality of life.

I don't really have the money to afford the mayo clinic :/

We couldn't, either. My sister got financial assistance from them - it might be worth giving a call to see what they can do.

Oh I didn't know they did that. I have heard amazing things about how they help POTS patients. Thank you for the advice.

How does it feel to be one letter away from being POTUS?

I never really thought about it before :o I feel special now

Does knowing that you are incurable make life harder?

I have my days where it gets me down, but for the most part it has just become my reality. It only really bothers me when I think about potentially having kids. I don't want to pass anything on to them.

Were you given a time?

It isn't going to kill me, I have a normal lifespan at the moment. Unless we are missing something.

Spend it all now then.

Lol

Last time I checked with my doctors pots is untransferable. So you'll be able to have kids without passing it along

The cause behind my POTS is EDS, and that is transferable. So my kids could have the same issue as me. My mom has the same problems I do, just less extreme.

Another optimistic pots patient here. Its not necessarily incurable, a majority of patients essentially "grow out" of pots in there 20's. So there's always hope

I guess maybe I should reword the title. It is sometimes incurable depending on the cause. For me I know it won't go away since it't caused by my EDS. Others who develop it in their teens just get better sometimes, and some people just recover in general. I guess I mean there is no real cure. Like you can't go to the doctor and get a shot and be all better over night/

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It's kinda a tie between getting the help I need and being able to go to school and work.

Most my doctors now are fine but in the beginning they were terrible. They thought I was making things up or they just thought it was anxiety so they didn't take me seriously.

School has been a huge struggle. I can't do full time, and even when I am able to make it to class I can't pay attention do to brain fog. It bums me out to know college is going to take me 2 or 3 years longer than planned.

My girlfriend has all these symptoms and whenever she goes to the doctor's (which is frequently) they tell her she's just making it up. Which is absurd because you can clearly see she's having palpitations, she's been like this for the past 4 years, and her palpitations have only gotten worse. I'm going to show her this and hopefully she'll finally have some answers.

Tell her to tell them to give her the test she needs! Also look for different doctors until you find someone who gives a crap, because doctors can be super shitty

Try caffeine tablets for the brain fog

I don't eat or drink any type of caffeine unfortunately

From one person with a rare disease to another, I feel for you, especially when it comes to doctors claiming you're just making shit up - that's the worst. I'm not sure the technical term for it, but are you often plagued by the sound of blood rushing in your ears? If so, is there any way to alleviate it?

Yes. Yes I am. Especially when I feel like I'm about to pass out. Unfortunately I haven't found a way to help.

My friend's girlfriend has POTS, I'm very sorry, it's horrible.

What restrictions, if any, do you have on your diet?

Is your best friend /u/Jareyjareyjareyjarey?

Nice haha

I don't eat or drink caffeine very often. I eat a lot of salt to keep my blood pressure up. I try to eat small meals throughout the day to help my stomach pains.

Have you ever been evaluated by a neurosurgeon? I happen to be one, and have treated similar patients. POTS is not necessarily incurable. Some patients with POTS have it due to craniocervical instability, a condition where their head is unstable on their necks due to problems with their joints/ligaments. A lot of these patients also have Ehler-Danlos syndrome. Their brainstems get compressed against the bony structures causing their symptoms. A possible treatment is a surgical decompression and fusion of the upper spine and bottom of the skull.

I have been to a neurosurgeon :) I also go to a neurologist twice a year because he prescribes me some of my medication for another issue.

I unfortunately was just diagnosed with POTS from a clinic here in Arizona. It's apparently been affecting my life for a long time and I have had a lot of troubles with coping due to it. The recent move to the state caused a change that made my symptoms more prevalent and I struggled through high school dealing with fainting sessions and sever fatigue because of it.

I'm only half way through my senior year and it's causing some major stress issues due to the fact it's limiting my life in all sorts of ways now. I can't say I'm glad that you have this as I wouldn't wish it on anyone but you do have my greatest sympathies.

Try looking into compression socks, like the sports brands, as my doctor said that it can help blood flow and thus reduce some issues. As for a question, have you figured anyway of coping with the effects of the disease and if so what are they?

Edit: I heard someone mention the Mayo Clinic and I felt the need to say that it's where I am going. They're amazingly helpful and the doctors know exactly what they need to do, and with the financial aid services they provide it's been a lot easier on my parents who don't make top dollar. I'd recommend anyone to go there for problems they're experiencing, even if it's not specifically POTS.

I'm not OP, but I have POTS as well. It caused me to go into cardiac arrest multiple times as well as have a stroke on my 29th birthday. I'll let OP answer your question, but I want to encourage you to never EVER give up on your education. It took me way longer to get my BA than most because of all my medical setbacks. I graduated 3 weeks ago & it feels amazing. It was a big "Screw you!" to my POTS. You can do it too. Disease can take a lot from you, but your goals doesn't have to be one of them. PM me if you ever feel discouraged!

Congrats on graduating! I'm working on my degree now, slowly but surely haha.

I have this too! How has it affected your life?

I know it can be rough, but the prognosis tends to be good! I missed two years of high school while my doctor adjusted beta blockers and blood pressure meds to alleviate the symptoms. But I am about to graduate college after this semester and am heading to grad school to be a nurse practitioner. I still take beta blockers for the tachycardia, but the symptoms have mostly subsided and can be managed.

If you ever need to talk, feel free to PM me.

It's mostly was the same thing you said. I missed two years of college and was getting my meds set up. I just feel like I will never be 100% again, but I'm honestly okay with that at this point. Some days I have my bad days where I go to the ER, but I'm usually fine.

I'm glad you have everything figured out! It's always awesome to see someone rise about the illness :)

How do you explain what the conditions are to people? I find it difficult to give a short but accurate explanation to people when they see I have some difficulties.

I also just wanted to say thank you. I also have POTS and EDS, and was going through a hard time last year where I felt really alone because of all of my friends going to university, and me being stuck at home not being able to do anything independently. Your post was one of the things I found when i was searching for anyone who could relate - it helped to keep me sane. I'm really glad that you've had some improvement

If I just want give them a short explanation I say I have a heart condition, even thought that isn't really accurate. If I really tell someone I feel like it's over dinner, and we are talking for a long time about it. At this point I try to avoid telling people, where as before I told everyone. I find it easier because people can be jerks about that kinda stuff.

I'm glad I could help. I know exactly how you feel, it's really hard not being able to do anything anymore. If you ever want to talk feel free to PM me!

I have had every symptom you have except for the stomach problems. I've had to drop out of college, there would be days when I would be sick in bed and couldn't take care of my children, I couldn't think of simple words, I couldn't have a normal conversation, my body ached and burned, I thought I was going to die. My previous Dr thought I was depressed so I changed Dr. After a year I'm finally starting to feel normal. I realized my medication was making me sick, I had an infection, and a vitamin deficiency. Now, I can actually live a normal life. Has your Dr ruled out all other possibilities? Does yOur intuition tell you that this is the right diagnosis? I only ask because it's so horrible when someone is diagnosed with a debilitating illness when that diagnosis could be incorrect.

I am almost 100% sure this is right. Thank you for your concern. I didn't start taking any type of medications until after I couldn't get around. I do get tested for a variety of things from time to time to make sure that something else isn't going on.

If you don;t mind me asking what kind of infection did you have?

Are you allowed to drive?

Yeah, I only pass out when standing up so I'm legally able to drive.

Do you switch to a wheelchair when you can't afford to pass out?

I honestly am pretty bad at that. Like I have forced myself to walk and passed out just to avoid using a wheelchair. It's kinda embarrassing still.

Hi! I'm another 21-year old girl with EDS. I've had a whole array of partial dislocations and was taught how to relocate my own ribs at 15. I've never met anybody who had a similar experience with dislocations and EDS.

What's the place you would most want to go if you could travel anywhere in the world?

Neither have I actually. Like I've met people who mess up their legs and hands, but not really their ribs.

I would want to go to Germany I think.

It's kind of a shot in the dark for you, but my sister was diagnosed with POTS before she was eventually correctly diagnosed as celiac disease with mitral valve prolapse. Following my sister's celiac diagnosis, I and my siblings were tested and turned out positive for celiac as well. One of us tested negative but clearly responded positively to the gluten free diet.

Prior to diagnosis, all of us had histories of dangerously low blood pressure. Something to consider.

Any chance your sister was really sick when she was younger? Maybe with rheumatic fever or mono? I'm beginning to notice a trend I think.

Edit: used the wrong word. Twice

A lot of POTS patients report having an infection right before they get sick, so there is kinda a connection.

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Depends on if I'm having a good day or a bad day. I once went to the ER for a resting hr of 180, and another time for it being 40 (that was a medication mix up though). So yeah on normal days probably 80-130ish.

I am able to exercise but it helps the be sitting down. like a recumbent bike or crunches, and other strength exercises. I just can't go for very long.

Your symptoms sound similar to what I suffer with, have you been tested for Chronic fatigue syndrome?

Yeah I have been, and I don't have CFS :)

Do you think that your condition may be more treatable or maybe curable in the future?

I don't think so because mine is being caused by another condition. It really depends on the person because there are so many different reasons to get POTS or any type of dysautonomia.

I'm kind of shocked to see so many people with this in one place. Normally I feel so alone. I actually forget I was diagnosed with this because no one knows what it is so I don't talk about it. I started seeing a neurologist for migraines and that's what I talk about.

Can you tell me about how you worked through discovering all these seemingly unrelated things were related? Are there natural habits you had that turned out to be preventative or in response to these problems?

It almost was a relief when I found out it was all related because I thought I was going to die.

The biggest habit is how I drink water now. I will finish like 12 glasses at dinner, just because they keep filling them up haha.

Have POTS, 21 years old too. Be strong, sister! Have you been tested for Addisons too?

Yes I have :P and I don't have it. Thanks!

How does it handicap your life expectancy?

POTS doesn't, but if I do have lupus then that could shorten it depending on how bad it is. I don't know for sure, but as of right now I have a normal life expectancy.

I've read a little bit about this. How is it different from being light headed after standing up quickly? In other words, how much of a problem does it pose for you in your daily life?

Some of my symptoms never go away even when I'm laying down. The constant pain, inability to sleep, brain fog, ect. Some doctors compare the quality of living to someone with heart disease. Also it's not just the dizziness it's how my heart races when I stand up.

I am also constantly tired no matter how much sleep I get, and if I don't have my meds I can forget about even getting out of bed.

How much time have you spent in the hospital trying to diagnose this problem? Or were you fortunate enough to have tests completed on an outpatient basis?

It was all outpatient

How is your sex drive?

I would say about average. I would say it hasn't killed my sex drive at all haha

Mmph. Average would be so relaxing.

Oh?

How does this impact your social life? Do you fear that dating prospects may turn you down, out of fear of having a "disabled" child in the future?

When I first got diagnosed I lost all of my friends and boyfriend at the time. It was really hard for me to get out there and meet people.

Then I met a group of girls who are still my best friends. I also have a boyfriend right now and he is very accepting of my condition. We have been friends for a long time and he knows all of the issues I have. My hope is that if it is an issue we can adopt one day.

Overall I still have a pretty good social life

I've been reading this AMA and don't really have a question to ask, but I just wanted to wish you the best of luck. May you find something that alleviates your daily struggles!

Thanks!

Are you absolutely sure you have POTS and not AVNRT? I know I'm a little late here, but I'm cardiac ablation rep. It sounds like you are happy with your diagnosis, but the first thing I thought of when you said young woman with sustained tachycardia ~130 was AVNRT, not POTS (which I had honestly never heard of until now and I have been in the industry for 4 years). I know it seems like you are happy with your diagnosis, but if you haven't already I would strongly advise you to see an electrophysiologist as well. The electrophysiologist can diagnose you 100% and not base it simply off the results of a tilt. If it is AVNRT or a tachycardia other than pots, you can get a cardiac ablation (to essentially burn the short circuit) to permanently and safely eliminate your problem forever.

I actually answered a very similar question. I have an appointment with an electrophysiologist coming up soon to check for that.

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I didn't know it was on the front page! I love all of you beautiful people!

It's honestly hard sometimes because even my bf who has only even known me to be sick doesn't get that I can't do things. Like one time I was super sick and my friends and I were all staying in a hotel. We were on the second floor but there was no way I could make it up the stairs, so I took the elevator and they were all weird about it. Like you aren't even that sick right now, and that kinda stuff.

It's so hard to explain to people who can't see or feel what you see. I just tell them if they want me to not pass out they have to be understanding of my needs. Yes I do feel embarrassed. I feel like people look at me funny because I don't look sick

hi jen,

specifically how was your condition diagnosed? what tests did you have.

what are treatment are you on. have you found any relief?

I had to get a tilt table test. Which felt terrible. I had blood test, stress test, MRIs, CT scans, genetic testing, a halter monitor, and a few more that I can't think of the name of.

I take a beta blocker, and salt pills every day. I try to exercise because it's supposed to help, but it's really difficult. Most days I am fine, for the most part. Never what I used to be before all this, but I'm able to function.

My best friend has POTS, with the same symptoms you've mentioned, and difficulty staying in school or having a job. She didn't get fired, but decided to drop it all because she was suffering so much. I hate it, and what its done to her and people like you. Try to keep your chin up, I admire your courage!

Do you have any children or have plans to try someday? My friend and I always talk about trying to have kids at the same time in the near future but she has doubts she will be able to conceive. Have you spoken to your doctors about this at all? From what I've heard, pregnancy can either aggravate the symptoms of POTS or alleviate them for some lucky women. Just curious if you have any experience with this issue in particular.

Ever since I have been diagnosed I have been convincing myself I don't want to have kids, since it can be so devastating and can cause terrible symptoms. I really want kids though honestly. I haven't really talked to them yet because I would probably wait a few years to have kids, but I might just adopt when that time comes.

Have you been checked for EHLERS DANLOS? Its common wIth POTS people

Yup I have that :) I say EDS for short.

Hey girl! I also have POTS but I'm currently not on any medicines. I was on a beta blocker & a SSRI. But it only made me sicker and drop my blood pressure worse. The doctors down here don't know much of anything about POTS. So I've been on my own in terms of diagnosing and trial and error treatment ideas. So my question for you is, what medicines do you take &do they help???

I take metoprolol and salt pills :) and they work wonders for me. It took a long time to find the right beta blocker though. Like 10 different kinds.

second paragraph elaborates on diagnostic criteria.

http://www.dysautonomiainternational.org/page.php?ID=30

how much do you weigh? is that a factor?

Ahh yes I linked that page in my first AMA I think. And I weigh 160 and am 6' tall. It's not really a factor, but all the problems I was having before made me lose a lot of weight.

Have you tried medical marijuana? If not give a look into it.

I actually have, and it helped my emotional stuff but none of the physical.

uhhhh this disease shares the same symptoms as feminism. for example: shortness of breath and my favorite ---> intolerance of exercise. all top level comments have to include a question so here it is. how fucked up is that?

Are you asking if people are using it as an excuse not to exercise? Or that they are "similar"? I personally am not overweight and try incredibly hard to exercise. When I first got sick I actually lost 30 lbs, and was almost underweight. All exercise intolerance means is that you have a harder time working out compared to most people. Considering my heart rate can skyrocket to 180-200 bmp I feel incredibly sick and sometimes pass out when trying to exercise.

Are you willing to try anything?

I detach from all these thought forms and everything that contributes, in gods love and light it is so.

I am good. I am okay. I will be fine. Yes.

I can elaborate further if you wish. I know this is rather weird, but life changing. :)

I think I see what you are saying, like having a positive attitude and outlook. I do try to see things that way.