"it's All In Your Head"

[SeattlePotsy]

I have had POTS for 2 and a half years and have had many doctors (especially in the beginning) say that my symptoms were just from stress and purely psychological. I have GI issues (nausea and vomiting) and body tremors and non epileptic seizures as part as my symptoms and I was told today that they are just psychological and not related to my POTS. I struggle with this because I know stress plays a role in POTS symptoms but interactions like this one make me second guess myself and my pyche. Anyone else had an experience like this? What helped you to come to a conclusion about your symptoms and stay positive in working for recovery?

[looneymom]

I don't have POTS, but I am a parent of a 12 year old boy that does. Every doctor that said it's in your head, my son never saw them again. At first, it might be easy to believe that, but when the symptoms return over and over again, you realize that POTS is for real and it's unpredictable. My son has finally accepted the fact that his body just does not work right all the time. When he over does it, he knows it. He has tremors in his legs and has a vocal tic. Our goal is to find the right medications to manage the symptoms, so he can eventally go back to school. Believe in yourself and listen to your body. There are so many symptoms to POTS and doctors just don't know enough. Never give up looking for a doctor to treat your symptoms. This forum has great information that you can take to a doctor. If your doctor, does not take you seriously, it might be time to find someone new. Hang in there and do what you know best that helps manage your symptoms.

[Relax86]

When I have a provider that tries to steer me in this direction I come to this forum. I see the people here desperate for answers and anyone's small or large success story. Do we have stress?? Sure we do b/c most of us have had our lives taken from us without warning or reason. Did that cause me some anxiety; absolutely. There are more than a few people who can describe my symptoms to a tee. We absolutely have a misfire and figuring out the answer is not easy for these docs so they go to what takes the stress off of them and puts it onto the patient.

I got lucky that I found a few things that helped me move out of my flare. Hopefully you will find pieces to your puzzle as well. POTs is real and there's multiple forum members here that demonstrate proof of that.

[Joann]

Many of us have been told our symptoms are psychological, "all in our head", or "just anxiety". And many us began to believe it, even while at the sametime knowing something was really wrong.

Loonymom is right, once a doctor says that, it is time to drop them. I learned the hard way, I stayed with my initial doctor for over 6 months, getting worse and worse. I was told I just had Gerd and anxiety. My symptoms got worse and worse, until I ended up in ER (multiple times). It wasn't until I had to be admitted to the hospital for uncontrollable labile hypertension, did I finally get some validation. Here I was in the hospital crying because somebody finally believed.

The best words I had ever heard were "This is not all in your head. If you could make yourself have this type of blood pressure and heart rate response, the Secret Servce or CIA would want you."

I am a work in progress on staying positive, but this site has helped a lot, it has given me information and I have made some great friendships.

Stick around here and just keep looking/fighting for answers!

[SeattlePotsy]

Thank you everyone for your response....it really helped me feel less alone:)

[Angelaintexas]

The truth is most doctors don't believe that POTS and some of the other dysautonomias are actually anything at all. One of my specialists said that trying to convince a doctor of POTS was like trying to turn his religion. I have hyperadrenic POTS. My very first specialist my primary dr sent me to was convinced I had an eating disorder (a lot of the symptoms are the same) and I was a 22 year old Zumba Instructor... I had another (one who doesn't believe POTS or Dysautonomia is actually 'anything' ) he was convinced I was very dehydrated... A few (3) bags of fluid later ... He sent me away saying I would probably feel better later .

[Christy_D]

Yes, my son was at first told he was trying to ditch school(even in the summer?) or it was anxiety,etc..We did not go back to those doctors. Even with his POTS diagnosis, one doctor said the nausea wasn't related to the POTS that it was depression, so we never went back to him. I didn't want to waste our time or make it more upsetting for my son by seeing those doctors.

FYI- Nausea and vomiting were his first two symptoms. He no longer(or rarely) vomits, but the nausea is a constant. While he doesn't have seizures, he has terrible tremors in his hands. Just keep looking for that one doctor that gets the whole picture.

Christy

[abbyw]

Do you ever wonder if they are right?

Please don't get me wrong. It has happened to me over and over again, and there is nothing more insulting or that makes me more angry. But other people don't measure their pulse standing and sitting, etc. I know my life can get pretty stressful, what if I am just not a good coper and I just think too much about how I feel?

[HopeSprings]

Amazing how others, especially Doctors, have the ability to get into our heads and make us question and doubt ourselves. I've been in your shoes many times before, especially before diagnosis. I now know when I go into a Doctor's appointment chances are I know more about this illness than they do, therefore, if any stupid or insensitive comments are made, this comes from lack of information, misinformation and ignorance. Stress is a component in any chronic illness and may exacerbate symptoms, but is not the cause of our illness. Autonomic disorders present with such a vast variety of symptoms and we don't all present with the exact same set of symptoms. I have probably 30 symptoms head to toe that don't seem to connect, but dysautonomia pretty much explains it all. I can understand how a Doctor would be confused, but I hope going forward that more and more Doctors will learn about this illness and will get better at connecting the dots.

[Tobiano]

Hi – I’m new here but have been lurking here for quite a while. I have undifferentiated dysautonomia and Inappropriate Sinus Tachycardia, diagnosed within the past year. I am on my third specialist right now (luckily a very good one) but had several unhelpful encounters with doctors before finding this specialist. My GP did mention anxiety near the beginning, when I was still undergoing testing. This really made me mad because I knew something was physically wrong with me. I did begin to doubt myself and this actually seemed to make things worse. I would ignore early warning signs (kind of like …no I’m ok, I’m really ok, it’s nothing… and then bam…too late, full blown episode).

I agree with others here…if a doctor is not taking you seriously try to find someone else. I find it extremely frustrating when I feel that I am not being listened to.

Abbyw – These feelings still creep up on me sometimes, especially when having a string of ‘good’ days which is usually followed by a crash. When I’m functioning better I almost start asking myself why I can’t ‘cope’ like this all the time. But when I see my wildly fluctuating HR and BP data I see that it would not be at all possible for me to ‘make this up’ or just ‘make it go away’ by ‘coping better’. In fact, one thing that really stood out to me when I found this forum is just how many people here are tremendous copers considering the physiology we are living with.

[badhbt]

Tobiano,

I agree with you I think we all are tremendous copers considering all the symptoms we deal with, and the roller coaster ride it brings with them.

I work in the health care business and I personally knew the Doctors that I went to. A lot of them would dismiss my symptoms for anxiety/panic attacks. I felt like I had to sell them and convince them.....this isn't anxiety....I feel like this all the time.

It is so nice when you get a Doctor that believes in you and is knowledgeable....

[crshore]

I just wanted to tell you I really feel for you, because I went through the exact thing for over six months. My original PCP sent me to a cardiologist, who gave me a bunch of tests, including a til-table test. He said, "You have POTS, but we're not going to call it POTS, because it makes you sound crazy." I was SO sick at the time, I didn't even care...I just wanted to get better. After 7 days on florinef, I went in for my follow up, and told the guy I was having a tough time with the drug...I felt anxious, had headaches, etc. So he gave me metoprolol and told me to see a psychiatrists, I didn't need to see a neurologist. In his note, he wrote, "It is unclear to what extent anxiety and depression are playing on her symptoms." Lovely. It made me feel totally insane.

Fast forward to this week, almost six months later. I finally got into a neurologist..he did some tests. And gee, guess what? It's POTS and autonomic sensory neuropathy. I've suffered all of this time, believing this guy. To say I'm furious is an understatement. If I had listened to him and not sought out a second opinion, I have no idea where I'd be.

[Tobiano]

badhbt

I also work in the industry and found it infuriating that some of healthcare practitioners I was interacting with seemed to lack empathy, professionalism, and basic listening skills. It must have been incredibly frustrating to feel like you had to sell your situation to doctors you knew personally. I agree that finding a knowledgeable doctor who is willing to work with you is so useful (and honestly the way things should be).

[badhbt]

Tobiano,

It makes me wonder how I would have been treated if they didn't know me, and I wasn't in the medical field. I think it is a shame to say the least. It has definitively changed the way I will treat my patients, I will be more compassionate about them. I guess a few good things come from being diagnosed.

[Mytwogirlsrox]

I never had anxiety till I had pots symptoms., so they're related -- In my opinion'. Who knows, Dysautonomia might just cause anxiety-- they're the same darn chemicals that mess everything else up. Why don't Drs think that rationally? Or at least recognize that anxiety is a symptom of Dysautonomia. I think for me, it was really beneficial to deal with my anxieties... Pots got easier to manage, and I no longer fit the pots diagnosis criteria. But I don't chalk that up to solving my anxiety purely. I still suffer "panic attacks" I've just learned coping mechanisims so they're not as frequent and less intense.