Anyone Else Go Through The 'it's Just Anxiety' Thing With Doctors?

[Nikki]

This past week I went to an eye specialist (after seeing my regular eye doctor, things didn't look 'right' so he sent me to him). He said that I have optic neuritis in my left eye, optic nerve swelling in both eyes but the left is worse (my vision as been messing up in that eye more lately, kind of like a funhouse mirror-look to things). He asked me if any doctors mentioned it and in the past two others have, but I was never really tested for it. He kept talking about MS but said he said it could be anything and he can't say because he's not a neurologist.

I thought we could finally be on the right track to finding out what else is going on with me. Problem is, I saw a new neurologist today and he's pretty much chalking it up to anxiety. I've heard it from so many other doctors over the past 10 years that I was already irritated and frustrated 5 minutes into the appointment. I told him my heart rate and blood pressure are all over the place no matter what I do, he pulled a confused face. I said that the eye doctor said I had optic neuritis, he pulled a face..He had me lay down for a bit and took my blood pressure and it was 140/100 laying and kept rising when I sat up and stood..and he seemed to take me more serious after that but still said that sometimes we're anxious and don't know what's causing it until we take a deeper look at our lives and see what's going on..yet, he said I don't look like an anxious person..so he needs to take some time 'scratch his head' and get back to me, basically. He was pretty much questioning everything past doctors have said and questioning me..Asking me what I do all day and when I said I can't really do a whole lot cause of how I feel, he didn't seem happy about it. He asked if I'm working, I said no to which he responded with, 'why not?' It's like are you kidding me? I would think doctors would have a more of an..understanding personality about them to know how much things effect people and their daily lives. Instead I get treated like I'm crazy person who doesn't want to do normal things. I explained how I used to do tons of things (and listed them off), but I just can't with how I feel. Whenever I said how dizzy I am, he'd just say 'but you never faint, right?' and I said no..and he must have said, 'but you never faint' 5 times likes he's trying to get it into my head. I'm aware I don't faint but feeling so dizzy that I'm walking like a drunk person half the time doesn't make it any easier to deal with..

So I have no follow up appointments scheduled with him..He wants to talk to my family doctor first. I do get an MRI tomorrow..and now I don't know who to send the results to. This is the third neurologist I've seen who hasn't taken me seriously. I feel like I might as well settle with a lousy one in my town instead wasting an hour and a half car ride each way to someone is going to treat me just as bad.

What do you tell doctors who think it's all in your head, basically? Is there anything that will get through to them? I just feel so hopeless trying to get things figured out..

[arizona girl]

Hi Nikki, You are so not alone in hearing it's in your head thing. Please honor your instincts with this doctor, they will serve you better then the doctor. How could anything be wrong with a pretty, young healthy looking person! You'd think doctors would know by now, that what someone looks like doesn't mean they aren't sick. Most illness you can't see on the outside until the ends stages. Stick to your guns, you know something is not right. I have found that when doctors can't figure out whats wrong with you, rather then admit they don't know, they spare their ego and decide your crazy. Read Erika in orlando's posts, this happened to her in the extreme, she finally ended up at Mayo, because she didn't give up, and they found she has a very rare illness called stiff person's syndrome. So don't give up hope, keep going till you find a doctor that hears and sees you. So as far as how to handle this doctor for now, at least he admitted he didn't know.

All neurologists are not created equal. The kind of neurologist that is best for those of us with dysautonomia are neuromuscular neurologist who deal with autoimmune neuropathies, most neuro's don't speacialize in this. So ask his office what type of neuro he is. You might as well get what you can out of him, for now. It is good he has ordered the MRI, probably for your head, right. He's probably looking for MS or other lesions. When I have tests and labs done I always make sure that copies of the report go to all the doctors I have on my team. So, just do that and you won't have to worry about getting results from him if you don't want to go back. If you can get a new referral to a neuro who specializes in neuromuscular conditions like cidp, or small fiber neuropathy, these are just a few of the autoimmune neuropathies. My neuro has a lot of info on his web page, read up and understand the medical terms and get comfortable with using them. My neuro is with Phoenix neurological associates in arizona. You may want to give them a call and see if they know someone in your area that could help you.

I don't know what all your symptoms are, or what tests you have already had done, so hard to advise what direction you should take. With inflamation of the eye nerves though I think you should be seeing a neuro opthalmologist (md, eye doc). Oh when you get asked again if you faint tell them that you get presyncope and that if you remained on your feet you would faint, but you sit down before you do. As far as what to say when they act like it is in your head. Look them in the eye and say, I'm sorry are you saying you think I have anxiety or psychological problems, if they say yes or maybe, assure them that they are wrong about that and you don't have those kind of problems, then say do you think you can you help me figure out what is really wrong? If they still want to blame anxiety, then you must drop them as a doctor, they will never be able to help you.

Good luck with your MRI tommorrow!

[Justpots]

Hi Nikki,

Yes, you are definately not alone. My GP has never believed that I have anything but anxiety. When my first symptom was the tachycardia and chest pain - he told me it was anxiety. After heart rate monitors and numerous tests at cardologists he said "see anxiety". After TWO positive Tilt Table Tests he said, "So what, now you have a label for this but it is still all your emotions controlling this."

I have fluctuating BP and pulse about 90 or higher at all times. Whenever I mention POTS he rolls his eyes. Why I am still going there? I guess because it is close and I am currently trying to find a new GP. I have also had eye problems. Vision blurry, permanent black floater in my left eye and whenever my BP is up, I get really bloodshot eyes. My Opthomolgist believes the POTS is contributing to my ongoing eye issues. Don't worry I have never fainted either but still have so many other disabling symptoms. Terrible headaches which come and go - all MRI's normal.

Good luck with your upcoming tests and in the search for an understanding, helpful Dr. I am on the case in Sydney here too!

Justine.

[issie]

arizona girl, Loved your post. Really like your comebacks.

I've had this experience too. Despite her colleagues telling a whole different story -- she still wouldn't budge in her assessment. I went as far as I could to get my records changed and in the end had notes attached to each reference showing that her (opinion) was refuted by her colleagues and science. This doctor was so arrogant and prideful. She'd rather not back down, than admit being wrong. Like arizona girl said --- GO ON TO SOMEONE ELSE --- that will help you. Not cause you grief. When they keep insisting that it's in your head and not your unconscious, uncontrollable autonomic nervous system ---- you've reached a dead end.

[houswoea]

Yes, however, they actually convinced me! I saw a counselor and a psychologist because they said I was just crazy or anxious! Quite an experience. It was helpful in the end because they both can give me a note for other doctors to verify that this is not the cause.

Having someone be so condescending to me would make me very sad. How's your heart doing with that? I can't believe you've gone back to this dude so many times! Ditch him.

[pat57]

alas yes. I was diagnosed with pseudoseizures (seizures meant to get attention and sympathy) and was sent to a psychiatrist.

I did go. He mistakenly diagnosed epilepsy -

turns out to be convulsive syncope

[Christy_D]

They tried to tell me my son had anxiety, depression or just didn't want to go to school. Even after a psychologist said it wasn't anxiety or depression, a diagnostician told us to find another psychologist. Even after he got his diagnosis of dysautonomia, they still wanted to blame some of it on anxiety. Yet, none of these doctors had spoken to my son for more than 10 minutes. One doctor told me depression was underdiagnosed in this country.

So don't feel alone. We finally found the right doctors, who immediately reassured my son that this was not in his head.

Christy

[Chaos]

I think this is, unfortunately, all too common for most of us here. When I was at CC last month, the nurse was telling me that pretty much every patient they see in the autonomic/syncope lab has been labeled with depression and anxiety by the time they finally get to them.

When talking about the autonomic system though, a lot of the same chemicals that mess with the heart and gut and other organs are the same chemicals that seem to be implicated in depression and anxiety, as well as migraines etc etc.

I would argue that if we do have anxiety or depression, it may be a result of the screwed up chemicals and is just as much a symptom of the ANS dysfunction as rapid heart rate, sweating (or not) etc etc. Doctors seem to keep wanting to say it's the anxiety causing the symptoms. I think they have it backwards- at least for some of us.

I've seen my share of docs who've wanted to tell me I was "just anxious" and that's why I was so short of breath that I couldn't say more than 2 words at the same time. Really truly I don't care if a doctor needs to just say "I don't know". I appreciate that. What I really hate is when they decide they are now all specialists in psychology as well as their primary specialty (e.g infectious disease or whatever). PUH_LEASE!! Just because they don't know what the problem is, they have NO right to tell us it's all in our heads! YEESH!

[issie]

I think this is, unfortunately, all too common for most of us here. When I was at CC last month, the nurse was telling me that pretty much every patient they see in the autonomic/syncope lab has been labeled with depression and anxiety by the time they finally get to them.

When talking about the autonomic system though, a lot of the same chemicals that mess with the heart and gut and other organs are the same chemicals that seem to be implicated in depression and anxiety, as well as migraines etc etc.

I would argue that if we do have anxiety or depression, it may be a result of the screwed up chemicals and is just as much a symptom of the ANS dysfunction as rapid heart rate, sweating (or not) etc etc. Doctors seem to keep wanting to say it's the anxiety causing the symptoms. I think they have it backwards- at least for some of us.

I've seen my share of docs who've wanted to tell me I was "just anxious" and that's why I was so short of breath that I couldn't say more than 2 words at the same time. Really truly I don't care if a doctor needs to just say "I don't know". I appreciate that. What I really hate is when they decide they are now all specialists in psychology as well as their primary specialty (e.g infectious disease or whatever). PUH_LEASE!! Just because they don't know what the problem is, they have NO right to tell us it's all in our heads! YEESH!

AMEN, SISTER!!!!!!!!

I do believe you're right. What came first --- the chicken or the egg ---autonomic disorder or depression/anxiety???????

[jem15]

How sad that all of us have to go through the same infuriating issues! I was just diagnosed recently after 15yrs , so yes, have had my share of " just anxiety" doctors. Way too many! I too, don't faint but feel faint so yea, that sometimes causes them to take you even less seriously. I too had seen psychologists, psychiatrists who said it was medical and I need more testing, so I repeat that, but it doesnt always mean anything, maybe a letter would work like some said above. But sometimes, if that's the type of doctor they are, nothing changes their attitude, tilt tests, etc.. I've realized I'm just not going to get anywhere with that type of doctor and don't waste my time anymore.

Sometimes I tell them, I wish it was anxiety or depression, or all in my head, cause then I could fix it. I don't care what's causing it, I just want to get better. I've tried treatments for the above and it hasnt worked, I've tried every lifestyle and psych approach you can think of, and still no better. So please help me, if you know of something I havent tried that has the power to give me my life back, by all means share it. Usually that quiets them. Also, I used to make a deal with them, if they came up with something else "psychological" to try, I'll say, yes , I'll do that, but for the sake of the argument, lets say it's not actually a psych. condition, what could we do then, what are possible next steps.... But honestly... to not even have to go thru that, I would just keep looking for another doctor, as frustrating as it is... and i've seen probably literally 40-50 specialists over the years.. and it is just not worth it having someone who doesnt believe you. It's hard enough getting the doctors who do believe you to help you, that's where I am now. I've had better luck with "neurophysiologists" in relation to the POTS, so if any of them are by you, they might know better. If you're near NYC, Columbia has a guy to do testing and some consults.

In relation to your eye stuff, I would definitely pursue that further. I dont know how they'd chalk up optic neuritis to anxiety. Either a neuro ophthalmologist, or maybe even a neuro optometrist might help. One of the neuro optometrists I saw actually did VEP testing at his office. That's another test that picks up on eye stuff, and they sometimes use it to pick up on MS that may not show on a brain MRI. I think 5% of MS cases dont show on brain MRI.. sometimes cervical or thoraic is also needed. Sometimes the VEP catches it if there's eye involvement, so if you havent had a VEP yet, maybe ask about that? if that would help diagnose anything? just might be costly.

Also, if you dont already, my advice is to get your own copies of any testing you have done. I've had too many bad experiences due to not knowing exactly what my results said. And its also so much easier when you have the copies at your disposal to bring to whoever you want. They have to give you copies if you ask, so dont let them tell you you cant see them. I even sometimes get copies before I see the doctor, I do that with my oncology stuff so I can prepare for the visit better. So when you get the test, ask who you contact to get a copy.. if it's at a hospital or facility, sometimes they have a separate dept for that. If they say, just get it from your doctor, say, no I need a copy before.

PS: one last funny , ha or sad story, to show I feel your pain, but why it's impt to get your own testing and switch drs....

a few years ago, i saw a cardiologist who told me i didnt have anything wrong and it was in my head. I was pushing for the tilt test, and he's like, we can do it if you want, but i highly doubt it'll show anything, you wont pass out, etc... the tilt test was done poorly(wont get into that), but they told me it was negative. the dr told me if the tilt was negative, that i have to pursue the "correct area".. that i probably fell off a merry go around when I was 8 or something, and am somehow still bothered by this today. LIterally, what he said, no joking! (ha, i've also been told I need a vacation w/ boys fanning me, that what I was saying was "star wars" .. which doesnt even make sense, but he meant, made up stuff...but i digress....)

Anyway long story short, I got a copy of the tilt later on, but didnt know how what to look for other than low blood pressure, didnt know about POTS and the HR increase. Just recently, upon getting a 2nd tilt, I brought the old copy to the new dr, and said I just noticed my HR went to 123 upon tilt, was this test positive for POTS? and he said yes! How crazy, the idiot cardiologist didnt even know how to interpret the tilt test he ordered, but told me I must have fallen off a merryground that scarred me for life... ha, a far more likely explanation indeed;-)

[Nela]

Gosh did I ever...

I started having most issues around the age of 18 so automatically doctors seem to associate anything medical to something mental. It was an extremely aggravating period of time. I remember how upset and angry I would get whenever someone would mention the 'stress' word. I mean, how insulting! Seriously...

The turning point was one day when a doctor blew up at me. I think I could have torn her up to pieces right then and there. We had a screaming match, and I stormed out of there in tears. She basically told me to quit wasting her time and said I didn't need a 'real' doctor. (Shows how respectful she is towards her co-doctors ) Anyway, after that, I started seeing a nice doctor who actually listened.

She remarked that I seemed to have a good head on my shoulders and like everyone else my age, had stressors but seemed to handle them properly. She noticed a lot of things were off medically so as cortisol levels, sugar levels, blood pressure, heart rate, etc. Anyway, she was a HUGE help. However, after I was hospitalized for my heart, the cardiologist I was referred to also suggested it was all in my head. How can you have a heart rate of 180+ for hours and days and see it shoot up just by sitting or standing if it is anxiety? Seriously... A few years later, 2 different cardiologists diagnosed the IST.

I've been fighting doctors for years and years because of this whole 'it's in your head' attitude. Luckily, I was blessed with a few doctors who believed me and spotted things which led to more testing etc. It's a bit scary now because I will have to go through it again here since I changed country but I hope that I will find someone proper.

Trust yourself. No one knows you like you do. I had to learn that. Sometimes it's extremely hard, and you start to question your own sanity but it often turns out to be way more than just 'in your head'.

[gtg287y]

Heh, it's even worse when you used to actually HAVE an anxiety disorder (PTSD for me, which I worked through after a lot of blood, sweat and tears). The symptoms showed up just on the tail end of my struggle with anxiety, and doctors would see my chart, raise their eyebrow and start with "Have you considered....".

It was so frustrating. I KNEW what anxiety and depression felt like for me, and it was nothing like the collapsing/exhaustion/fainting spells I was dealing with. (If anything, anxiety had a WHOLE lot more energy than my fainting spells did ;:angry:

I guess I can sympothize, because anxiety OFTEN takes the form of unexplained high heart rates, hyperventillation, etc. But to just assume ANY undiagnosed similar problem is anxiety...that's unexcusable. And even worse to assume that if it's "all in your head" it doesn't require any treatment! I would say the BEST thing to do in that situation (as a doctor), is to systemically try a variety of treatments (INCLUDING psychological) until something sticks, and THEN speculate on how "real" the problems were.

[comfortzone]

Your doctor and the neuro I saw might be the same guy .... the conversation went the same way -- so I truly know how hard that must have been on you because I went through it almost verbatim. First was the question, "well are you working?" I said no I am on disability. He says how do you make ends meet? I told him disability insurance. I told him I tried working and got fired because I couldn't keep up with the demands of the job.....though they truly valued me as an employee and hated to let me go. He then tells me to get therapy. I tell him I've had a full year of non-stop physical therapy and then he said, 'no not that kind of therapy - I'm talking about counseling. Counseling you see can help fatigue'. I wanted to slap his face straight on but of course wouldn't ever do that. He's this young wet behind the ears guy who was made the head of the neuro dept. at a major university......I get angry just thinking about that visit. To add insult to injury - the local neuro doc tells me that I have to prove to the world that I'm sane and go for psychiatric evaluation because of what he wrote in my chart. To which point I pondered my horrid luck in getting two goof balls in a row for neuro. I would imagine they are helpful to some extent for some people - and if that's the case I'm grateful - But for me they cause harm and that is one thing a doc is not supposed to do - cause harm.

So as I distance myself from that trauma - I've had nothing but caring clinicians that are doing there best to diagnose and help me and everyone of them has been kind and told me to forget about those visits and press on for answers as they still can't explain my case with any answers...that make sense.......I'm still in the middle of diagnostics - so time will tell ...

I guess it's a badge of courage you get for having to go through those kinds of visits - YUCK my heart goes out to you! Stay focused and work for what you deserve - a happy life with as much health as is possible!

[Troy]

I actually diagnosed myself with POTS

None of the doctors I went to were able to figure it out, so for the first 6 months every single doctor labeled me as anxiety when I insited that my heart was only racing from movement and standing up, and that I didn't feel an emotional component.

Eventually I searched online in google for the keywords that matched my symptoms, such as "rapid heart" "standing up" "movement" and it came up with the condition "POTS".

I then took it to a cardiologist and said " I think I may have POTS" and asked for a table tilt test. It turned out I was right, I ended up diagnosing myself, its now been 10 years and if it was for those idiots I would still have no diagnosis and still have the word "anxiety" shoved down my throat.

[noodlemaster]

Like most of you, I have been told that I am simply anxious and doctors have sent me away feeling like a time-waster or worse. I was diagnosed with POTS and joint hypermobility earlier this year.

A few months ago I had a "click" moment when I read about functional illnesses. These are, as far as I understand, illnesses where the body does not have an obvious problem with its structure, but it is functioning incorrectly.

In short, I believe that POTS, in my case, has been caused by chronic anxiety, with hypermobility as a predisposing factor. It doesn't feel like anxiety, because I am always worrying and I have few relaxed times for comparison. I believe my body is frequently stressed by becoming ready for fight or flight, and that this has caused a semi-permanent change in how the body functions, but not in the structure of my body. Even when I do feel noticeably more relaxed, my body is still dysfunctional and feels odd physically.

I think that there is a spectrum of ways that anxiety or stress can express itself, from anger to panic attacks to longer-term insidious effects. I think that for me, my body has changed itself in response to being stressed by my thoughts. If a doctor had told me this a year ago I would have been angry at them. I had to sort of feel this for myself. This realisation made me concerned at first, but I now feel more in control. I think I can beat it mainly by changing my lifestyle and outlook. I believe this will help me feel more in control and, over time, allow my body to spring back into its original functioning - at least some of the way.