I Have So Many Symptoms Cropping Up On And Off, I'm Not Sure What Is Pots And What Is Not!

[lynnie22]

I read some old posts about breathing problems, and for the last few days once again, that is me. But, is it POTS, or is it not? Most doctors who are specialists in other areas like the pulmonologist are not very interested in seeing me these days. For years, I kept asking all of them for help with my racing heart, my breathing problems, my exhaustion most of all, so many things, and they dismissed me as "not in shape" or as 'depressed'. I finally got diagnosed, but problems still crop up, and the regular crew still dismiss me, thinking I'm making too much of a deal of things, which maybe I am. I hate the fact that I focus so much on all these limitations. Some days are good, but then there are a string of 'bad' days, and I'm never sure if I'm sick, if something else has gone wrong, or it's my autonomic dysfunction.

What do you do, how do you balance it all, and what do you do about the uninformed, and dismissive other specialists? How do you know?

[looneymom]

I hear you loud and clear. Some of my son's symptoms are not usually associated with POTS. However, since you have been diagnosed with it, you really need to find a doctor that knows POTS. The other doctors who do not seem to know how to help, fire them. You may have to visit with several doctors before you find someone that really takes an interest in your case. If you are able to go see a POTS specialist that is out of state, make sure a nurse line or email is available. POTS is not a psychological illness and not all doctors understand this. Many doctor will blame it on anxiety because they do not know how to help you. Keep looking for a doctor that will listen to you and be willing to run other test out rule out underlying causes of your POTS.

[Lethargic Smiles]

Prior to being diagnosed, I had so many doctors tell me I am anxious, depressed, or experiencing medication side effects.

Now that I have my diagnosis of POTS, I take a simple, short journal article with my to appointments with specialists. Rather than explain everything, I say I have an autonomic disorder that is fairly rare and I brought information that could explain it to them better than I probably could. I hand them the article and let them teach themselves. I circle/underline symptoms I suffer and put check marks next to all of the tests I have had (ALL of them!). I insist it be put into my chart even when they say it is unnecessary.

Here is a link to an abstract of my personal favorite article. I like it because it has figures/ boxes outlining symptoms, treatments, and tests. It is short, but covers most of the bases, even the different types of POTS. I'd link the actual article, but you need to have a subscription to access it. I access it through my library.

http://primaryhealthcare.rcnpublishing.co.uk/archive/article-postural-orthostatic-tachycardia-syndrome

Ever since I went to Mayo Clinic's POTS Clinic and can throw in that disclaimer, I never get doctors who don't take me seriously. It's sad we need a "disclaimer" to be taken seriously by certain doctors.

At this point, if a doctor is dismissive (which I haven't had happen since my diagnosis except once with a homeopathic doctor), I would find a different doctor. This is an autonomic disorder which therefore has the potential to impact every one of our body systems... They should take it pretty seriously. I don't catastrophize my illness, but I do ask that it be considered along with their existing knowledge of their area of expertise.

[blueskies]

I agree with all the replies. Find a doctor who is open to Pots. Honestly, what drives me nuts are docs who say, 'this can't be happening.' Really? And since when did doctors know everything? Medicine does not have all the answers but there are some docs that just seem to have forgotten this.

I know it's exhausting but I've perservered over the years and now have a team of specialists (for my worst symptoms) that all work for the same hospital or clinic attached to that hospital and I'm getting as good care as it can seem I can expect. I have also found a very good gp who deals with a lot of people with chronic illness -- I struck out with a few gps before I found him.

I did fire a gi doc once. He was just so dismissive. Happy to take my 300 dollars each of the three times I saw him. Told me to ring him if the last thing he told me to try did not work -- it didn't so I rang him. He did not get back to me. I spoke and left messages with his secretary 3 times over a three week period. Eventually I left a last message. I told his secretary to write down on his message pad that he was fired! I got a laugh out of it. Although I would like my 900 dollars back, to this day, still.

blue.

[Freaked]

My cardiologist and gp both left a lot to be desired throughout all this. First it was 'post-viral' because it started with a bad flu, then when it didn't get better they were basically just like 'go away. Seek counseling. ' How something post-viral had suddenly turned into something psychological was never quite explained to me. Needless to say, I found new doctors, though I still have to do a lot of hounding.

As for symptoms, I haven't even been diagnosed yet, so I have no idea what's what. The heart tests they did came back normal except for the frequent sinus tachycardia, but I get a lot of different symps and don't know what's normal or who to ask, and then anxiety and panic muddy the waters too.

[Lethargic Smiles]

Blue --

I LOVE how you specifically asked the receptionist to write down your doc was fired. That gave me a good laugh.

Freaked --

You made me think of something I forgot to include because it was something I had to do in my pre-POTS days but actually would be useful with doctors who are suspicious POTS is in our heads.

I'd go to various doctors searching for answers. Specifically I wanted to know why I had a low-grade fever a minimum of 5 days a week for 6 months straight. You know what I was told when they didn't find answers? I probably don't even have to tell you. Yep, depression and/or anxiety. Really? Depression causes fevers? That's a new one to me.

I finally paid for a professional in-depth psychiatric evaluation. The psychiatrist said he had no idea what was wrong with me other than it was clear I had hyper-somnolence and it wasn't due to my lifestyle or a psychiatric issue. I took that evaluation with me to each doctor and would present it to them. I found a lot more doctors were willing to say, "I don't know what is wrong with you" after that point.

That's the thing; we don't insist these doctors know it all. We just want them to acknowledge there is indeed a medical condition occurring, but the do not know what it is.

I'd imagine this would be extremely helpful for doctors doubting POTS. I find my Mayo Clinic visit has the same clout as my psychiatric evaluation did. I'd ask the psychiatrist to make sure to address if there is or isn't somatization, as well as catastrophizing, type tendencies present.

[lynnie22]

Hi, thanks for all your support. It was good to read about your experiences -- I like the idea of firing a doctor. I did start at Mayo as many of you, although not in the POTS clinic -- but with a cardiologist for my tachycardia who then sent me for autonomic testing. From what I've been reading, it may be that Mayo will not take me back since I'm 'too old'. I find that so hard to believe that they are refusing to treat patients over 50, unless I misunderstood.

My internist I've seen for over 30 years....he's always been there for me. He believes I have POTS but knows nothing about it and won't learn. That is very disappointing. He and the crew of doctors at his hospital that I've seen for years think I'm making a 'big deal' about how I feel. I did find a POTS doctor here in NYC but I need other specialists who at least are willing to learn about it and help me differentiate between things.

Jackie, you mentioned about a low grade fever for days a month. Although this is off topic, I wanted to know if this was a related symptom.

My Mayo certification also has given me some legitimacy. It's just these docs think it's no big deal, and for example, I'm scheduled to have a endoscopy this week with heavy duty anesthesia and considering my erratic bp/hr these days, I'm alittle concerned. The doctor is completely dismissive because he doesn't get it.

Despite the legitimacy, I'm still viewed as somewhat crazy to get laid up so often.

[blueskies]

lynne,

I'm in Australia so not sure how it works in the U.S. But I think I would be able to accuse them of age discrimination. Here that works for private companies as well as public ones. Also, I'd think your need to see pots specialists is a 'human rights issue.'

blue

Edited June 25, 2013 by corina

[Lethargic Smiles]

Lynnie, it is a symptom and probably was the earliest sign my autonomic system wasn't a happy camper. It started after I got mono in Feb 2008 and has never gone away. It tends to run 99.9 to 100.3 on "normal" days. It wasn't high enough to warrant serious concern.

I was only 18 and was trying my hardest to hide how cruddy I felt since I was a freshman in college with the world at my feet. I suppose that contributed somewhat to the lack of them immediately pursuing in depth testing.