Dr. Said Its Stress And Not Pots And I Don't Buy It

[abbyw]

I got into the only autonomic disorder doctor in my area. He listened to my symptoms and claimed that I have too much stress in my life. I pointed out that my sumptoms started from one day to the next when nothing had changed in my life and he maintains that it is a stress buildup. I think he was basing his diagnosis on the fact that my pulse did not shoot up during his examination. I pointed out that I have been taking Lexapro for a few weeks, and couldn't that skew the results? He agreed that it could but still maintained that it is not POTS, Now, before I started taking the Lexapro, my pulse was consistently going up more than 30 points after standing. At the same time, I developed exercise intolerance from one day to the next and anxiety symptoms without any anxious thoughts. I was dizzy several times a day and had severall near fainting episodes, which I never had before. I don't believe that all of that happens from one day to the next because of stress that has not changed for years.

I know that having a doctor confirm a diagnosis does not really make a difference. I am continuing with the Lexapro, drinking a lot, adding salt, and trying to exercise a little bit every day. Practically, there is nothing else I can do. Some days are better than others, I have to be careful not to overdo, and that's it.

But it was very disappointing to be told it is all psychological. I feel very invalidated.

Thanks for listening......

[Lemons2lemonade]

This is the kind of process that we all have gone through, and im sure many with any chronic illness have as well. Ultimately you are not meeting the diagnostic criteria. I had symptoms of pots for almost four years before I became orthostatic and was able to be diagnosed. I probably had orthostatic vitals taken once a year for those years and never tested positive. Something to.consider is talking to your doctor and seeing if you can stop the med. to check for orthostasis. However, intervention for any disease is not usually done until it becomes remarkably symptomatic or disabling. Unfortunately, I am not aware of any tests that can be provided by a normal provider other than the ttt. The other concern I have are the qualifications of this specialist. I do not feel that anyone in my area is qualified for managing this--including the university of Washington's highly acclaimed medical program. Another thing to note is that during a ttt they give you medication that can aggrevate orthostasis. One thing you should consider though is that stress can do some bizarre things. In no way am I saying that something may not be wrong. Either way, stress aggrevates many illnesses. Before I was diagnosed I went through the process of chemically treating "anxiety" when that didn't work it also made my case stronger. No matter what happens though, I wish you luck and hope that you can get to the bottom of this.

[songcanary]

Learning to deal with stress is my biggest challenge. It is hard for me but I am much better at it now and my symptoms are milder because of it. However, I still have OH and take meds for that. So, I am not offended when a doctor mentions stress AS LONG AS he/she recognizes that I also have a physiological problem. We can have more than one thing going on . And Lemons is right, stress can cause some seriously bizarre problems.

My rheumatologist was the first one to diagnose me and he attributed many of my symptoms to stress, but he also ordered a TTT and other tests to try to find underlying problems so they could be treated as well. Good luck in your quest, we've all been there.

[HopeSprings]

I've never understood how any testing (of this nature) can be done while a person is on medication. I would think it can definitely skew results.

[E246]

Hi Abbyw-goodness it is frustrating when no one believes you and you have to test in an exact way for anyone to take you seriously.

I have been diagnosed with pots but was tested on beta blockers initially and it so did not get confirmed.

I wrote a post about this over the weekend and the problem of being tested on drugs and the subsequent suspicion.

You are the expert on your health - be persistent and trust your experiences and say them clearly. Good luck.

[abbyw]

I feel like I should clarify. He based his "stress" diagnosis on the fact that I have a lot of kids (which totally shocked him, as he has 2) and I work outside the home. So a working mom + lots of kids must mean stress. He asked me if I had help with the kids or with the house. I told him that my husband is a big help, and he laughed that off, and kept talking about stress and anxiety.

Now, I have always been a high -intensity type of person. I tend to be hard on myself and demand a lot from myself, but there has been no intensely stressful event in my life lately (thank G-d!).

I was so frustrated that he was looking at my life and assuming it was stressful and ignoring the fact that I was on meds which could affect the results.

I lived 37 years without feeling faint from strolling down the block. It is hard to believe that one day, my intense personality causes that!

My GP also tried "You seem to be a sensitive person. I think you just have to be careful about eating regularly and not overdoing it." Since when is walking one block overdoing it?

Again, sorry for the rant...... but this is all so new to me and suddenly I have these wierd symptoms where I am doing my own research and coming up with my own diagnosis, and doctors have never heard of it, and I am just hoping it will all disappear.

[Lemons2lemonade]

Abby, like everyone else said keep pushing for answers. Another funny thing about stress is that sometimes you dont realize how much stress you are under. I didn't "feel" stressed but when I got sick I was working 30 hrs a week (and competing strongly for my position), going to school full time, taking care of the house, dealing with relationship problems, and was staying out past 2 am over 3 nights a week and trying to do it all perfectly. When I read that now I say, "wow, that is a lot of stress!" But it didn't feel that way at the time. I realize now that most people don't load their plates that much. I don't think I had even sat on the couch and just relaxed for over a year. Guess I'm making up for it Another good story is my withdrawal from 3 months of taking lorazepam 4 times a day, cold turkey for an eeg. It was then that I truly learned how powerful my mind can be. I was seeing flashes (like lightning) every 20 minutes, I couldn't focus on a rock if you asked me to. I was sweating profusely. I'm pretty sure my heart is still running laps around that block, because of how many times it leaped out of my chest. If I thought about my arm it would hurt, if I thought about my ear it would hurt etc. Essentially, pretty much anything I could imagine being wrong was turned into a reality by my mind. I took 25 showers that night, talked to 5 nurses on the phone, urinated probably 100 times, and didn't sleep the entire time. It truly let me know what my mind was capable of.

[anna]

I am sure in the years to come medicine will find that stress in 'mental health' terms does not actually exist; I am sure it will be found to be caused by some, at present poorly understood, adrenal problems or some such thing!!! Ok that is my nutty thought for the day, back to the matter at hand! Even if you do not meet the criteria for POTS, but you have symptoms that interfere with your daily life it needs a more careful looking into. A logical step I would have thought, just to help you be able to continue to function as a parent and worker. I would say keep a chart/diary on how you feel do your BP HR when you feel bad see if it links to anything going on in your day any food triggers, any other environmental triggers and so on. I think if you have good documented evidence you might be able to find out what is going on.

[ramakentesh]

surely he would conduct a tilt table test before presuming that your symptoms are the resuilt of stress.

[abbyw]

No, he only did the poor man's tilt table. Took my BP and pulse a few times lying down and then once after standing for 3 minutes.

Also based it on the fact that my dizziness can happen at any time, not necessarily when going from lying to standing, and I don't have cold extremities.

[sandymbme]

A couple thoughts-

First- Dr. Grubb asks me every time I see him how I am managing my stress. Not because he doubts my illness, on the contrary he confirmed on dx and was the one who originally caught and dx'ed the cause of my POTS. But he told me that stress if the biggest, most common trigger of bad "flares" of the illnesses, and that stress has a negative impact of the physical health of ANYONE. What stress does to one's health is NOT imaginary, or psychosomatic, or insignificant. Stress can put you at much higher risk for heart attacks, strokes, various types of cancers, the list goes on and on. so even if stress is linked to what is making you ill, that in no way means that you are not ill, and it absolutely does not mean your physical experience should not be treated medically.

Second- Dr. Grubb has also told me on numerous occasions that if you are dealing with a chronic, incurable illness that has as much of an impact on one's day to day life, that alone is extremely stressful. Managing your stress helps to give you the perspective needed to be able to keep better track of your symptoms, which in turn helps to identify patterns and triggers, which is a huge factor in your doctor diagnosing the root problem. I am currently on a a SSNRI called cymbalta, which I fought tooth and nail trying not to be only any meds that were anti-depressants or related to anti-depressants. My major concern was that as soon as a doc saw that medication they would immediately dismiss me as being "crazy". And if I was crazy, then no need to treat me, right? I won't lie, I have had some bad experiences over the last several years, most of us have at one point or another. But I now kind of kick myself for not giving in on this med much sooner. While I don't love the side effects, (or the price tag!) cymbalta in particular has proven to be effective in helping to manage chronic pain, and it is stressful to have an illness where you might not ever get better. That can often be very difficult just to treat. So try to keep in mind that treating your mental health is part of treating you, but only PART!

As for your current situation, I have been in a very similar spot, and it can be maddening. My mom, a retired nurse, gave me this suggested phrasing for when I am getting nowhere with a doctor, pointing out to me that very few doctors care much about diagnosing anything. They really just want to treat you, get you stable, and get you out the door. I have to admit, this phrase seems to do wonders when I am ready to throw things at doctors who are being dismissive and condescending: I appreciate the suggestion, and would love to explore that. However, that course of action has not/likely will not reduce my pain/prevent my fainting/stabilize my vital signs. These issues are interfering with my ability to care for myself and others, as well as with my ability to work. Do you thing a tilt table test/eeg/ekg/mri/insert desired test here would better pinpoint exactly what is going on with me? And what sort of treatment do you suggest while we try to clarify this AS WELL as managing my stress? And when would you like me to come back to discuss the efficacy of this plan?" I thought it was a bunch of ego petting to no great end, but I was forced to thank my mom when the specific doctor (an internist who was insisting nothing was wrong with me despite the copper coil {from a tubal ligation procedure} that had apparently managed to migrate back into my uterus, and ended up causing an emergency hysterectomy last year!) did a complete 180 in his treatment. The fact that I wasn't asking for anything specific, and thanking him for his suggestions, actually worked!

In the meantime, as I think someone else in the thread mentioned, start keeping a detailed symptom journal. You can pick up an automatic blood pressure cuff at most drug stores for around $30 or so. The machine will also give a heart rate, which is not quite as responsive or accurate as a pulse ox, but will do the job fine for your purposes. If you can squeeze in time in the mornings, keep the meter on a nightstand or somewhere right around your bedside where you can reach it in the mornings without sitting up or getting out of bed. Take a laying pressure, swing your legs around and carefully sit up on the edge of the bed. Wait at least 10 minutes, and take another reading while you are sitting. Carefully stand up, (standing up after laying down to sleep all night is one of the very high risk moments in the typical day for a syncope, or faint, because of the position change after laying down for so long. ) wait ten minutes, but feel free to support yourself with a cane or hang on to a dresser or such. Taking a bad fall is NOT the goal! Take the final reading. Write all three measurements, laying, sitting, and standing every day for at least a month. All of us have good days and bad days. You may have had a good day in his office, which is why it can be so much more beneficial to do the readings daily for a fairly extended period of time. You are more likely to pick up readings when you are not doing so great. In that same notebook, or excel spreadsheet, or however you want to track it, make sure that you also make note of any headaches, migraines, nausea, and/or pain and the location of your pain. Write down what you may have taken or done (gentle stretches? meditation? cup of tea?) for your pain, and if it helped.

I know this sounds like a lot of work, and it is. But doing a record like this is the best tool you can give your doctor to help him figure out what is going on with you, and what tests you would benefit most from. If he still isn't much help, fire him and take your notes elsewhere. Good rapport is actually really important, in order to get the best care you have to feel comfortable enough with your doctor that you are willing to share any and all issues. Keep in mind as well, there are many forms of dysautonomia, and while POTS is the most common, (I think? Correct me if I'm wrong, somebody! ) there are actually many types of these illnesses. SO even a negative POTS diagnosis would not necessarily mean you don't have an autonomic systems disorder. There is a ton of good info about most/all (?) types on the dinet.org main site. Hope this wasn't information overload! Feel free to PM me if you have any questions, and good luck!

Sandy

[ramakentesh]

and Blair is right - my current relapse is a direct result of incredible work stress. And it never comes on at the time, it comes on afterwards the moment I start to relax - wham!

[songcanary]

I replied to this last night and accidentally deleted the whole thing. Then I was too tired to do it again. But Sandyshell said exactly what I was thinking. And very well said, indeed!

And I must agree that using judicious language with doctors is sooooo helpful. And when you think about it, it's common courtesy. We all want that. I worked for doctors for most of my career (I was a medical asst even before vet tech & pet sitter), and believe me, they appreciate a courteous patient. OK off my soapbox.

Even right now I am a little anxious about making some pet visits today because hubby and another sitter are both out of town. But I've always made it before and I'll probably be fine today. This is when I do the deep breathing and talk some sense into myself. But the physical reaction is THERE and makes me symptomatic--so annoying! I HATE stress .

[abbyw]

I really appreciate allof your support. It's so nice to feel understood.

I think that keeping a journal is a good idea, and I am going to try that. He did say to get back to him in two months, so if I am still symptomatic, I will have good evidence for him.

They have been so supportive at work, letting me work from home for as long as I need. I keep thinking about going in to the office, but I am worried that I won't feel well and I'll be 1.5 hours from home...but I digress.....

I hear what you are saying, ramakentesh, about crashing AFTER the stress, I have always done that in life, pushing through the hard times and then feeling it after. It could be that that is happening here, but again, I never had any of these symptoms before and I think that the physical symptoms HAVE to be caused by something going on in my body -

the question is .. WHAT?

[Clairefmartin]

I'm so sorry you are being told the same junk most of us have heard. Here is a great journal article to

share with any future docs (and maybe ditch the one you just saw):

http://jnnp.bmj.com/content/80/3/339/reply#jnnp_el_4620 There are 4 journal citatacions in that as well with other studies differentiating between stress, anxiety, and POTS.

Also this from my blog because I am so fed up with this issue: http://bellaflorablog.blogspot.com/2012/01/open-letter-to-all-doctors-regarding.html

Good luck and don't give up!!!

Claire

[yogini]

You can feel sick and experience POTS symptoms even if your BP and HR are under control. This isthe hardest thing that drs don't understand. I remember after I got diagnosed and was stable, but felt dizzy/tired. My doc started saying that's not POTS, that's something else and sent me on a wild goose chase. Of course it all turned out to be the "big P" in the end. Yes, stress can make things worse, but POTS is POTS. Sorry you don't have a better specialist in your area.

Edited January 24, 2012 by yogini

[yogini]

Cold extremities are irrelevant, by the way. The fact that you had 30bpm+ pre Lexapro means you have POTS

Edited January 25, 2012 by yogini

[ramakentesh]

Yes Yogini - very true indeed.

You know as a male I tend to find that Ive been taken a lot more seriously than a lot of other patients. I may have been just lucky with my doctors or whatever but I really like to hope many of these docs werent that sexist! Just a thought.

[julieph85]

I get the stress thing a lot too cause I work full time and have toddler twins. One time I want one of those doctors that blames my symptoms on stress to tell me how the heck do you get rid of stress caused by being a mom? Every morning I wake up those toddlers are there and every night the same! tell me short of selling them how the heck do you get rid of that? What mother of multiples isn't stressed and how would you ever stop it? Nothing except them moving out which I've only got sixteen more years to go

[kclynn]

A couple thoughts-

First- Dr. Grubb asks me every time I see him how I am managing my stress. Not because he doubts my illness, on the contrary he confirmed on dx and was the one who originally caught and dx'ed the cause of my POTS. But he told me that stress if the biggest, most common trigger of bad "flares" of the illnesses, and that stress has a negative impact of the physical health of ANYONE. What stress does to one's health is NOT imaginary, or psychosomatic, or insignificant. Stress can put you at much higher risk for heart attacks, strokes, various types of cancers, the list goes on and on. so even if stress is linked to what is making you ill, that in no way means that you are not ill, and it absolutely does not mean your physical experience should not be treated medically.

Sandy

Sandy, Great Post!

[abbyw]

Cold extremities are irrelevant, by the way. The fact that you had 30bpm+ pre Lexapro means you have POTS

Well, he claimed that because my resting heart rate was in the 60's, even if it went up 30 points, I am not POTSy - that POTSy people's resting heart rate is much highter.

And, ramakentesh - I did feel pretty patronized being a woman. Like I said, he asked me how much help I had with the housework as a mother of lots of kids. As Julie pointed out, the housework and the kids are, thankfully! there every day.....I think they are what keeps me going.(Well, not the housework so much )

Again, I just don't know....yes, I have a stressful like, who doesn't?...but if my symptoms say POTS, why would he call it stress?

[HopeSprings]

Rama - you hit the nail on the head. I do think that sexism plays a role in the way many Dr's treat us ladies. And especially because many POTS symptoms can also be seen in anxiety disorders, I think they're quick to dismiss us.

[Chaos]

I don't know if it's sexism per se (because I've been treated worse by more female doctors than male docs ) but they sure are quick to dismiss women and their complaints. I always take my husband with me any more because it's night and day different in how I'm treated when he's there.

I took my daughter and one of my sons to the same doctor to check for vestibular issues. They were having similar types of issues although my daughter's were more disabling. He found no vestibular problems with either one. HOWEVER, for my son he recommended a brain scan to make sure there wasn't a "serious issue". For my daughter he said she was depressed. Seems pretty telling to me regarding how docs view females.