2 Docs Said Its Anxiety, Now What Do I Do?

[abbyw]

Hi,

I am feeling really lost right now. My whole story started last Nov, when one fine day I started getting dizzy episodes. Exercise intolerance, pre-syncope and inability to regulate my body temp.

I went from dr. to dr. who all told me that I had anxiety and I should start an anti-depressant. One doc said I had low blood pressure. Didn't feel righ to me, but I accepted it, while continuing to research my symptoms. Someone mentioned orthostatic hypotension, and I looked it up. I stared taking my BP a few minutes after standing, and found that my BP stayed the same, but my pulse was shooting up.

Googled it, and found POTS. Fit all of my symptoms to a T.

Went back to my dr, who never heard of it, but agreed that it fit. Started an SSRI, basically to cover any basis - Grubb lists it as a treatment, and it would help if it was anxiety.

Found an expert in my country who deals with POTS. He heard my story and did a poor man's TTT while I was on the SSRI. He then said that he does not recommend people diagnosing themselves on "Dr. Google" that I should stop thinking about my symptoms so much and forget about it.

Fast forward a year and 3 different SSRIs, trying to find one whose side effects don't drive me nuts. I feel like I have a condition, but noone who knows anything about treating it.

I tried another doctor, who says that if the SSRI makes me feel better, then it is not dysautonomia, it is anxiety. I feel so frustrated. I explained that I do not have any anxious thoughts, no feelings of dread, etc. He says that free floating anxiety attacks the body without any thoughts necessarily involved. I asked him about the exercise intolerance, and he had nothing to say. First lets get a diagnosis, he says. He wants me to to testing while on the SSRI. I feel there is no point.

I feel so lost.

If two supposed "experts" in dysautonomias have claimed that all I have is anxiety, maybe they are right? But so many of my symptoms cannot be explained by that!

Do I keep looking or do I just give up now and say that I was wrong?

I am pregnant and I was really hoping to have a good, knowledgeable doctor on my side who could help me find an good anaesthesiologist to work with for the birth.

Should I wait till after the birth and then fly into the US to get into a place like cleveland clinic or mayo and do thorough testing? Or do I just accept the anxiety diagnosis and forget about it?

I feel so alone.

Thanks,

Abby

[jpjd59]

Abby:

My daughter was told by several doctors that it was just "anxiety" until we finally found a team of doctors that we are working with that seem to understand. My daughter also had a doctor do a poor man's tilt table test and he brushed her off too. It wasn't until she went to a cardiologist who did a tilt table test that the POTS was confirmed.

Did the doctor say what your heart rate was when he did the poor man's ttt?

Pam

[abbyw]

No, he didn't. I know that when I was checking my BP and pulse before I had ever heard of POTS, I was getting jumps of over 30, after 5 minutes of standing. I don't know how much more, but I definitely fit the criteria.

Unfortunately, my GP only tested it once before I started the meds, but I was sitting up for 5 minutes or so for the 1st reading and standing for 4 minutes for the 2nd reading, and my pulse only went up 20 points, which I don't think tells us much of anything.

I think my question is stemming from the fact that these doctors are supposed to be specialists for dysautonomias, not "regular" doctors. If a regular doc was saying anxiety, I could think that they just don't know about POTS. But these guys are calling it anxiety without testing me for anything. Maybe I am just exuding anxiety. Why would they be dismissing it as anxiety otherwise?

[Christy_D]

My son was also told by several doctors, 'anxiety, or he doesn't want to go to school or depression.' Even after being given an "Autonomic Dysfunction" diagnosis they wanted to say his nausea was anxiety or depression. We left those doctors behind until we found those doctors who knew what was going on. My son is very laid back and nothing rattles him, not even being sick for the last several years has made him anxious or depressed. So I knew their label was wrong. Keep looking for the doctor who doesn't dismiss your symptoms. You know yourself better than they do.

[jangle]

Keep in mind that POTS patients tend to have reduced NET (Norepinephrine Transporter) function, which leads to a situation where you have norepinephrine staying in your sympathetic nerves for longer periods of time. This in and of itself can cause anxiety. Anxiety can cause a heightened sense of symptoms, but it is incorrect to say that anxiety is the primary cause of POTS. It can be a symptom, but it is not the cause.

[Tobiano]

How frustrating. Is there anyone in the DINET physician list who happens to live close to you (for another opinion)?

[cmreber]

I know that my cardiologist (who originally diagnosed me with POTS) mentioned that SSRIs can also be used to treat POTS, not because of depression, but because they inadvertantly help with disautonomia. It seems to me that if they were going to accurately do any sort of TTT, they should have done it without the meds. I know when I did my testing at Mayo Clinic, they had me go off all meds (I take a beta blocker) for 24 hours before hand so they could accurately see what my body was doing without meds. I also agree with Jangle, I know that I had no problem with anxiety prior to POTs, and now I will get the occasional panic attack due to adrenaline surges; for me, anxiety is a symptom due to POTs, not a reason for the POTS.

[HopeSprings]

Now this drives me crazy. I don't understand the first Doctor prescribing SSRI's without first doing some testing and trying to get a diagnosis. I swear they'll throw an SSRI at anything! I would think being on medication could affect test results. I would want a clear answer about where my body is naturally - unassisted by medication - and then go from there. However, you can't just jump off of an SSRI. You would need to work with a Doctor and have a plan for that. I also wouldn't bother getting testing done with a Doctor who isn't taking you seriously. The last Doctor seems to be insisting it's anxiety, so why does he even want to test? Also, is he suggesting you have this testing done while pregnant? Is that even safe? Is there anyone else you can see?

[southbel]

Honestly, anxiety is a diagnosis of exclusion but it seems so many doctors want to make that a first diagnosis without testing or meeting the criteria. Not to mention most of the doctors that do that aren't even that well-trained in the diagnostic criteria for anxiety.

My suggestion would be to just ask them how they came to a diagnosis of anxiety. Make them defend their diagnosis. Ask them the hard questions (e.g. why, when anxiety is a diagnosis of exclusion, are you assuming facts not in evidence). I have found when you make them actually think critically, you get the best results.

[FarmerAmy]

Hi Abby,

If it were not for "Dr Google", I would still be wondering what in the world was wrong with me! I went to a sleep specialist, a neurologist, a rheumatologist, and several alternative health care practitioners and NONE of them could figure out what was going on with me--even though I gave them a very thorough description of my symptoms. I am the one who diagnosed myself with POTS after reading tons of books and spending many hours with "Dr Google". I then went to a cardiologist and had a TTT and this confirmed my diagnosis. I'm tired of doctors having such snooty attitudes when they can't even give us a proper diagnosis!

I was taking an SSRI when I did my TTT. My test showed clear dysautonomia and POTS. I think you will find different opinions about whether or not you can be taking meds when you do testing. I was having POTS symptoms despite the fact that I was taking an SSRI and I really don't feel like my meds interfered with my test.

Does the SSRI help you at all? If not, do you need to take it?

Does your heart rate increase by 30 bpm within 10 minutes of standing? That is the definition of POTS.

I feel like you have unfortunately found doctors who are not very compassionate. I would keep looking until you find someone who seems like they genuinely want to help you. My best ally has been a doctor who practices Functional Medicine. She is not a dysautonomia specialist, but she is familiar with POTS. And she really listens to me and does research to try to help me.

Amy

[Katybug]

I agree with everyone else but especially the comment Naomi brought up. Is a ttt safe for a pregnant lady? Genuinely, I don't know that answer but I do know I had to sign a waiver for my ttt saying I understood the danger that the test could pose up to and including, in rare instances, a heart attack. I don't think that it is a horribly dangerous test but it does stress the body and amongst the other issues you may want to consult your obstetrician.

[spinner]

I understand some physicians sneering at google, and obviously there are multitudes of hypochondriacs who

wrongly diagnose themselves.

On the other hand, how many physicians know anything about POTS, or a multitiude of other chronic diseases?

A doctor has no idea if youre experiencing anxiety or a physiological problem. Therefore, their "opinion" is

completely worthless. Its not a scientific diagnosis. And theyre supposed to be scientists.

Now if they say "i suspect some level of anxiety" then thats ok. Anyone with a chronic illness should use anything

available to get better or manage their condition.

For what its worth, most of us on here have been to more than 10 doctors trying to get to the bottom of things.

Unfortunately, you have to be in charge of your own health. If you can find a specialist neurologist to spearhead your

search that would help.

[abbyw]

Thank you all for your encouragement.

The SSRIs tend to help me a lot, hence my hesitation to a) do testing on them and b)go off them to do the testing. It would take me months to wean off and then wean back up, all the while feeling horrible, so it is not something I am eager to do. But I don't think we will see the HR jump while on them.

I tried asking lots of questions: about how he explains the exercise intolerance or the HR jump. He basically said, "well, we would have to do the actual testing to see that. We don't diagnose by listening to the patient's narrative, we do tests". Which was good, but he insists that the SSRI won't affect the results, which I know it would, at least for me.

I live in Israel, and these are the two neurologists in Israel whom I have found who have heard of POTS.

I was going to send him an e-mail with links to Grubb's studies listing SSRIs as a treatment, but I am having a hard time imagining him taking that well......and I don't want to antagonize him considering he may be my only option.....

[Birdlady]

I was told from age 16 to 25 that it was anxiety and stress from school, college and whatever other excuse sounded good. /sigh No one wanted to do any further digging.

Hang in there and keep trying. I have no idea if a TTT is safe during pregnancy, so you may have to wait it out and decide later what to do with the SSRI. The only way I was diagnosed was by cold calling a doctor familiar with POTS and I told him to give me a TTT. I told him I knew without a doubt POTS is what I had. I was right. If it weren't for google I probably never would have been dx'd.

[bebe127]

I am sorry you feel so alone, but trust me (and the previous responses), you are NOT alone. I would definately keep seeking until you find a dr. that will help. Dr.s tend to give a dx of anxiety when they don't have any other answers and unfortunately, most dr.s don't seem to have the time or patience to help you on your journey to wellness. All too many times, they just want to throw meds at you to treat the symptoms without a clue as to what the root cause is. This is so unfortunate.

I've been dealing with this for 3+ years and still really don't have any answers. My GP treats me with a BB and Xanax. They seem to do as they are intended, but I still deal with the myriad of symptoms daily. One EP I went to who was supposedly an expert put me on an SSRI which I couldn't tolerate, then when I went in for a follow up told me that I should probably seek out a dr. closer to home and look into therapy. I am still on the search for a dr. that understands and that is willing to work with me to get to the root problem and help me. Don't lose hope!! There is someone out there that can help you, it just might take some time. Try to have patience and perserverance (I know this is so much easier said than done).

Here is a library of articles that might be helpful:

http://www.dysautonomiasos.org//journalarticlelibraries/PosturalTachycardiaSyndrome.pdf

Here is an article from a former Neuropsychologist and fellow Posty:

http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox

Hope you get some answers soon.

[FarmerAmy]

I personally would keep looking for a different doctor. It sounds like this one has his own opinions and doesn't take you seriously. I don't think you will be able to change his attitude by sending him articles.

I think the patient narrative is very important and I think it is bad that this doctor is so dismissive of your story. You know yourself better than anybody and I'm sure you have noticed all kinds of symptoms that are clues to your medical problems. Your doctor should be very interested in these clues.

Have you tried looking for a cardiologist who knows about POTS? That might be a better option.

[bebe127]

abbyw,

P.S. The articles in my previous post are intended for you and your personal education. I agree with FarmerAmy in that I don't think that sending him articles will change his attitude, it might indeed do the opposite and if this is your only option for dr.s at the moment, the need for good rapport is important.

[abbyw]

Thanks again, everyone. You are reminding me that I was not so doubtful of myself when this whole thing started. It was only once every doctor I have been to has thrown anxiety at me that I have started to doubt myself.

bebe - I really enjoyed that article about POTS and psychology. I am thinking of bringing it to my family doctor.

[HopeSprings]

Abby - I'm so glad you're not doubting yourself anymore. Doctors (bad ones) can really get into our heads, but I think we kinda know when something more is going on. If it were me... I would work with the family Doctor who seems open to the possibility of POTS for now, get through the pregnancy, recover from that and then pursue testing at an autonomic center. Since pregnancy itself and post pregnancy hormones can affect symptoms, I would wait until a little while after the birth. Would be nice if you could get testing done closer to home, but if you're considering traveling to the United States, I would contact the facility now because my understanding is the wait for an appointment can be many months. You can always cancel the appointment if you decided not to go, but at least you'd have it if you still need it. I would talk to someone at the facility beforehand to discuss the situation, the fact that you're pregnant, that you're on this medication and find out what their protocol is for testing. For example, would you need to come off the medication and how long beforehand. I would also let the OBGYN know that you suspect you have dysautonomia - that you have symptoms, but won't know for sure until you have autonomic testing after the birth. Even better if you're family Dr. will back you up on this. This way if anything did come up during labor/ delivery the Doctor will have a clue what might be going on. That would be my plan. Please keep us posted on what you decide to do.

[bebe127]

abbyw,

The article came from a fellow postie that has an awesome (in my opinion) blog. http://bobisdysautonomia.blogspot.com/ . Check it out if you have the time. She is a wonderful writer and finds humor in life.

Hope you feel better soon