How Do I Bring This Up To A Physician?

[shathaway0811]

Hi all,

So I really wasn't sure whether or not I wanted to join this as I am a fairly private person but I figured it would be the best place to get information/advice on how to proceed.

I'm a 23 year old female, and for the past 2-3 years, I have been experiencing continuous spells of light-headedness, tachycardia and general dizziness/queasiness almost every single time I change position (lying/sitting to standing, rolling over in bed, standing up for awhile in the shower without moving, etc). My heart rate is generally between 90 and 120 all the time, and I have low blood pressure (runs on my mother's side), usually like 100/60-70. I haven't ever actually passed out but I've come pretty close multiple times. I also have had very frequent and strange episodes of waking up in the middle of the night with an extremely fast heart rate (usually like 150 or faster); at first, as I do have panic disorder and general anxiety, this was brushed off as night terrors. But the more it happens, the more aware I've become that the rapid heart rate and physical discomfort is actually what CAUSES the panic - not the other way around, and night terrors are extremely uncommon in adults. I also have constant stomach pain/discomfort/irregular intestinal function ALL THE FREAKING TIME. I feel like I just don't ever feel normal, and I'm really frustrated.

Both my parents are physicians and my father is a cardiologist, and he has suggested that POTS might be to blame for some of this but they have a tendency to brush off the physical discomfort that I voice and focus on how this is all somatic. At this point, I rarely bring it up anymore because I still feel like a lot of what I feel hasn't been validated because of my history of mental health issues and the ridiculous amount of overlapping symptoms between the two things.

Because I still am fully functional and I've built up a high tolerance to a lot of this and just don't find it necessary or appropriate to complain about how I feel all the time, I've had a hard time convincing somebody that I really think that treating me for the mental health side may not be what needs to happen at this point. I guess with all that said, my question would be how do I bring this very valid possibility up to a physician without sounding like I'm self-diagnosing and lend credibility to the hypochondriac/anxiety-centric label that everybody seems to give me currently? If anyone has any advice on this, that would be great!

Best to you all,
S

[BeforeTheMorning]

Hi Shathaway,

Welcome to the forum!

I'm sorry you're going through all this, it is hard. I know a lot of people with PoTS are told it's just anxiety or they're just making up their symptoms, because a lot of doctors don't really understand PoTS and some have never even heard of it.

It seems like the best idea would be for you to see a doctor who specialises in PoTS and other dysautonomias. There is a list of physicians on the dinet website:

http://www.dinet.org/index.php/physician-list?view=physicians

If you can get to see one of those doctors, they will be people who are used to having a lot of patients with symptoms like yours and won't just brush it off as some mental health issue.

The fast heartrate in the middle of the night, doesn't quite sound like PoTS, but others on here will probably be able to tell you more about that.

I hope you manage to get in and see one so that you can start treatment to feel better.

Best Wishes,

Lyla

[SarahA33]

Hi Shathaway!

Welcome to DINET, I'm happy that you've found us.

Just thought Id share a bit of my story since part of yours sounded similar, I was diagnosed at the Cleveland Clinic w/ Hpovolemic & Hyper POTS, In addition to Innappropriate Sinus Tachycardia. I wore a 30 day holter monitor that showed HR spikes , Certainly your dad would know all about POTS and IST and how they tend to overlap or sometimes get misdiagnosed maybe he'd listen. If you spoke to him would he refer you to collegue of his in electrophysiology? We'll be keeping our fingers crossed for you..

http://heartdisease.about.com/b/2013/05/31/inappropriate-sinus-tachycardia-ist.htm

Best of luck to you! Again, welcome to DINET!

Sarah

[Sheri Lynn]

Welcome. I would definitely talk to a Dr that specializes in pots and dysautonomia. I was diagnosed with anxiety and panic attacks 13 years ago after my father passed with me trying to revive him. I was always a high strung child and diagnosed with asthma at 14. Now my Dr thinks I've had dysautonomia most of my life and that caused the symptoms to appear as asthma and anxiety (although I'm sure the panic attacks following my father's death were mental health related). I'm finding much of my life (that I thought was normal) can now be explained as Dysautonomia. See if there's an autonomic specialist in your area and request a tilt table test. I've passed multiple tests with no results but the tilt table and ans testing had my diagnosis within 2 weeks. Good luck to you

[Sunshinegirl]

your experience and lack of desire to complain sounds a lot like what I have gone through. For 10 or more years I kept being dxed with panic. I had to prove it was my heart rate and insist on being taken seriously. Please don't wait or not take this seriously. Anyone who wont listen to you, is not worth seeing again. Its so important to stand up for yourself

I really hope you find what you are looking for in treatment as well as support here.

[gjensen]

I believe that discussing this with an autonomic specialist, or a cardiologist (or EP) that takes a particular interest in this is critical. It is very difficult otherwise. As you know, medicine has evolved to a point where it divides into specialties and subspecialties. No one doctor can be an expert in it all. Many doctors have only heard of POTS.

Forget about any other challenge when you are discussing this with a new doctor. It is relevant, but it is not. What you want is an unbiased work up, and evaluation. What does it really matter otherwise? Do not second guess yourself, to yourself, or to a doctor.

You want to be evaluated for something specific. Expect it.

If you have POTS, I wonder how much it contributes to the other. Many symptoms do overlap. Too much norepinephrine etc. causes real anxiety. Sympathetic over activity is real, and feels very real.

I am sorry that you have the challenges that you do. I wish you well on getting answers. The ladies here are helpful, and have good insights.

Good luck.

[Nymph]

Shathaway,

I just want to say that I understand. I have similar symptoms and am also from a medical family so I get how they brush off our "minimal" problems and make us feel like we are hypochondriacs.

My advice is ato keep looking, keep trying new doctors until you find one who takes you seriously. I have had major depression in the past and so everyone would always chalk up my other health issues to depression - even though I could tell the difference! Nobody knows your body like you do. POTS is certainly not an unlikely hypothesis and would be reasonable to anyone who was knowledgable (unfortunately the minority). There are other conditions that are important to rule out.

As far as advice, I would get a auto BP cuff and do a standing (poor man's) tilt table on yourself on several different occasions. This is what I did and having hard numbers plus symptoms made all the difference in getting my doctor's attention. One page of such data will sometimes do more than a five-page health history.

Best of luck,

Nicole

[Sunshinegirl]

I must agree with Nymph on the advise. this is what I did. I still do it after any and all new medication for at least a week...because you don't know the cause of the POTS. This is so important. now I wear a sports heart rate watch all the time and still take BP often and record symptoms in a diary....so I cant be refuted. I also keep a diary of what I eat and how I feel life is going...so it cant be blamed on situation things or hormones.

[shathaway0811]

You guys are awesome, thank you so much!! It makes me feel like I'm not crazy to know that others have had super similar experiences - especially the waking up in the middle of the night thing!! That is by far what bothers me the most. I've gotten to the point where I can really deal with everything else, except it definitely contributes to my baseline anxiety level. But the middle of the night episodes are really terrifying and cause me to have middle-of-the-night panic attacks which cause me to do things I don't remember. So thanks everyone!!!

[SarahA33]

S -- will reply this evening. hang in there girl!

[imapumpkin]

hello and welcome!

based on my own experience i would say you are doing the right thing trying to investigate this despite what seems like discouragement from others. i was diagnosed with POTS more than five years ago and was able to be high functioning, finish college, get a job and work the same job for 2 years (which required me to be on my feet all day.) i did have POTS symptoms, but i wasn't debilitated by it. i spent years being told what i was experiencing was anxiety, and it was really vindicating to be told that it was actually dysautonomia. three years ago i moved to the mid-atlantic for a job opportunity over the summer and in a matter of weeks i was in a full-blown POTS flare, had to move back into my mom's house and have been unable to work or function on a high level ever since. i often wonder if i had had all the information and known the extent of how serious the illness could get if i would have made the same choice to move to a hotter climate because i didn't realize until i was in the midst of it that i was making myself worse.

you may or may not have POTS, and if perhaps you do have POTS you might have a really really mild case, but i would definitely recommend finding a doctor that will take you seriously so you can learn as much about what's going on with your body as possible so you can keep it in the best condition it can possibly be in.

[Katybug]

Hi shathaway0811,

Welcome to our community and I'm glad you found us!

From the post you wrote, you come across as a thoughtful and we'll spoken person. I believe that everyone else that responded to you is correct in that seeking out a doctor that specializes in dysautonomia could be the key to getting an unbiased diagnosis.

This illness is hard and the lack of or misdiagnosis has made many of us go through periods of self doubt and assigning negative feelings to our selves and our illness. It doesn't help that culturally, a diagnosis of anxiety or depression allows people, including doctors, to make certain assumptions about us that aren't necessarily the truth. I know some brilliant, wonderful people who are careful not to let others know they struggle with anxiety because of how it has changed prior relationships. It has happened to me as well.

One thing I learned after struggling to get my POTS diagnosis is that you have to be your own best advocate. The doctors will only care about you as much as you do. The doctors work for you but that is not how a lot of people see it. But, if you pay any other professional for a service, you expect them to perform that service to the best of their ability and to your expectations. While we aren't exactly raised to view our interaction with doctors the same way, they really are being paid to perform a service for you. If the doctor that is in front of you isn't doing that, then you can explain your expectations, and if they are not willing to meet your expectations, you have every right to sever that relationship and find a different doctor who will meet you on your terms.

Hang in there. You'll make it!

Katie

[jknh9]

You're not crazy or a hypochondriac. I think we have to be our own biggest advocates, because who else is going to do it for us? I agree with everyone here, keep looking. It took me a few years to be diagnosed and several more years after that to finally find a doctor who listened to me and put me on a treatment plan that I like. It turns out that my doctor's wife has POTS, so I think I got extremely lucky in that regard because he's so personally familiar with the illness Prior to that, doctors had brushed off my concerns as anxiety and panic disorder. Well, sure, I have anxiety because I'm always worried I'm going to faint! I have also struggled a LOT with the middle-of-the-night attacks. For me, it's been a hallmark symptom. When I am less symptomatic, I don't get them as much or at all.

You might even want to print out this thread when you go to a new doctor as a way of lending support to what you're saying. It's also worth it to stop the doctor if they're trying to rush along or brush you off and ask more questions. You are paying for a service and they need to hear you out. I'm also a very private person and very shy, so I understand how hard it can be. But trust me, it's worth it. I have come so far since finding a decent doctor. When I was first diagnosed, I had trouble getting out of bed at all for months.

One thing that helps me is to prepare a list of things I want to discuss before the appointment. Don't bring tons of research, but mention a handful of specific things that indicate why you think your symptoms may be due to POTS. It's also been helpful for me to explicitly say that I am not typically an anxious person, I practice yoga, exercise, etc to deal with stress.

If you don't like a doctor for ANY reason, do not be afraid to ditch them. Seriously. As patients, we need to feel comfortable and confident that we are receiving proper treatment.

Best of luck. Keep us updated

[shathaway0811]

Thank you again to all of you! Sorry I haven't quite figured this thing out yet (the forum haha), or I would reply to you guys individually. Just wanted to say I can't tell you how amazingly comforting it is to know that what I'm saying is not silly or irrelevant, and that people have experienced the same things (even though I really wouldn't wish most of it on anyone, because it's such a pain!!) But seriously, I will let you all know what I found out and this information has been incredibly valuable. I am more than happy to lend a listening ear as well if anyone needs it.

Thank you SOOOO much!!!