Getting Dismissed As "depressed And Anxious" Arrgh

[mkoven]

I've posted here in the past several months about my recent struggles with insomnia. I'm feeling potentially mad at my sleep doctor for how he wrote up the report on my sleep study that I've just received. I can't tell if I'm being paranoid or if I am being written off as a psych case. Should I have a conversation with this doctor, or based on his written report, conclude that he won't get it. Recall that I am in a small town, and it's hard to switch doctors, esp in a small specialty.

My problems with insomnia are recent-- the past year or so, esp past 6 months. So my whole life, with whatever ups and downs, I only ever had problems falling asleep when I was in a lot of untreated pain or on high doses of steroids. otherwise, insomnia is not and was not a lifelong problem, but a recent one.

I am also a 44 year old woman, whose bad sleep seems to correlate with huge hormonal surges. It is always worse whenever I am around a (now very irregular) period. I am often then wide awake and sweaty. Nothing particularly on my mind. Just wide awake, hot, tired, wired. Seems like a pretty clear smoking gun, no? Autonomic issues and hormones are not a pretty combo.

So I had a repeat sleep study to ensure that my sleep problems were not caused or at least aggravated by previously diagnosed apnea, for which I diligently wear my cpap. Apnea can also cause trouble with sleep maintenance, as one regularly wakes up to breathe. Well, I slept minimally during the study, but it does seem that whatever apnea I demonstated was adequately treated with my current pressure. So we can probably rule out the apnea as a cause for my insomnia. That's good to know.

But in the written report, the doctor seemed to chalk up my sleep issues to "depression and anxiety." To quote" Other medical problems are listed as ehlers-danlos syndrome, migraines, presumed autonomic insuffuciency, anxiety, and depression." He lists anxiety and depression, when we have never discussed these. I have not discussed these issues with him, and he has never, to my face discussed these. If he thought those were relevant diagnoses, why not bring them up with me in person?

He also refers to my autonomic issues as "presumed." Un;less the use of the word "presumed" has some other meaning in medical lingo, I detect a note of skepticism. Why? There is plenty of documentation in my file to support my autonomic issues. I see a cardiologist at the same hospital. I had a positive tilt table test. So why the "presumed"? And if he bothered to be up on recent literature, he would see that a large number of eds patients have some form of autonomic dysfunction. (This is not an exotic diagnosis that hysterical women conjure up as an excuse for the being a psych case??? Sorry for being snarky...)

And nowhere in the report does he mention the possible role of night sweats and hormones--but does feel free to list anxiety and depression.

This makes me wonder whether I can trust him to treat me, listen to me, etc. Am I being unfair? My medical file is thick enough that his writing this probably will not make a huge impact. I doubt anyone takes the time to read each report. And my pcp knows me well enough to believe me. My pcp does not doubt my autonomic issues, and has shown no sign that he believes the sleep issues, or other issues are caused by depression and anxiety. But the sleep doctor's report does make me wonder if I can work with him.I am not particularly more anxious than usual, when I didn't have insomnia. And I don't think "psych case, till proven otherwise" is a good diagnostic strategy.

Why so quick to label me with anxiety and depression and discount my other documented health problems (autonomic, perimenopause)? He could list those as possible sources, but I don't think he should just decide that because my apnea isn't the problem, by exclusion, they must be the cause??? It does make me wonder if I can trust him to get it. Do I give him another chance? I don't really want to have a painful conversation

And I know a lot of us on here have had to battle against psych diagnoses, so this is a sore spot!

But if I can't work with him, because he can't listen, does not consider the role of perimenopause in my sleep issues, and is ready to put his "presumed" diagnoses in my chart without actually talking to me, then that also stinks. Advice? Am I just being paranoid? Do I give him another chance? If so, how to approach him?

[lieze]

You know I wouldn't even mind the anxiety and depression diagnosis if they showed compassion for it.

Acting like I should just get over this on my own or not have my life impacted by it is inexcusable to me.

If I go to a professional it's because I want help.

Not to be insulted.

[HopeSprings]

Ugh, I am SO with you on this. Not to fuel your fire, but NO you aren't being paranoid and yes, it's insulting! "Presumed" autonomic insufficiency!? I don't know why Doctors do this. Is it because we're women? Do they think we are just being hysterical? They should force Dr's to take sensitivity classes in Med School. If you plan to continue seeing this Dr., I would calmly address it with him and ask that he ammend his diagnosis. On another note, is it possible the insomnia and nights sweats are symptoms of peri-menopause? Maybe you should speak to your GYN.

[Sallysblooms]

I would not be able to work with a doc. that didn't understand POTS, hormones etc. Maybe you can find another one. I finally found good docs that know about POTS but also know about compounding hormones...the correct dosing etc. At last they really understood so I can now sleep great.

Being ill, stress OFTEN makes seratonin lower. Doctors should know that. There are supplements that help that without taking prescriptions. Takes a lot searching to find the right doctors.

[lieze]

I am also 44, I wanted to tell you that.

Was totally functional for the last 20 years had four children, worked, I would work right up until the day I gave birth.

I'm not a whimp.

[comfortzone]

I have a few thoughts - dunno if they'll help or not ... One is I do understand your frustration with the small town doc situation.... I eventually moved out of sheer exasperation at the care available near me.

Two is - why are you seeing this guy anyway? I only ask that because I had a sleep study - ordered by a sleep doctor who saw me for under 60 seconds literally. Breezed in had me open and close my mouth and left. The nurse practitioner told me he'd do that so I wasn't surprised. I then was eligible for the study. It showed mild sleep apnea with severe desats to 72% on room air. I did not tolerate the cpap machine so canned it ... I still live with insomnia - but it fluctuates thankfully - never great sleep - but only a few times every couple months do I get the 'awake virtually all night' situation.

That being said I was done with the sleep doc that I barely saw. If I were to continue CPAP any of my doctors could have probably taken over that prescription - and if not - well it wouldn't be bad to see the invisible man again if I wanted a repeat sleep study to see if I'd improved any over a years time and wt. loss.

Another thing is - I do believe you can read 'presumed' - as he's actually presuming it. He hasn't tested for it - but things are crazy enough that yes it's presumed you have it. He's banking on it.

For the hormonal shifts and sweating and flushing or whatever all your symptoms are - maybe you could hire a gyn doctor? Or an endocrine doctor? Or a compassionate 'women's care' doctor? A caring and informed primary care internal medicine doctor? This man is not a hormone expert - nor a psychiatrist ~ I guess you could "presume" he has a purpose for a time - but I'd diss him asap. Dunno just an idea though - You can also handwrite a letter that states in reviewing his dictation it was noted the writing of anxiety and depression and clearly this is not an issue so perhaps there was some mistake....

Within the past year I had a doctor who met me for a brief ten minutes between surgeries - did a cursory exam and then declared I needed a three level neck fusion. Then additionally right in front of me did his dictation - and while talking I had to constantly interrupt him and tell him NO that is NOT the case. One of those was anxiety - which he followed 'is common in Ehlers Danlos syndrome' - then he went on to say I had Panick Attacks too - I almost jumped over the desk to snap him out of it....He was obviously over-tired and just making things up on the fly. Un-freaking-believable. YES anxiety is very very much documented to be a symptom that is a puzzle piece that snaps in nicely for the geneticists who diagnose EDS - it's that common. BUT to just make it up? His auto-pilot was on turbo and out of reality imho.... It is unfortunately not uncommon - rather very common to have your medical records read totally screwy. At least this guy of yours wrote 'presumed dysautonomia' rather than behaving as if he was diagnosing it - he's letting the others take credit. It is one thing to chart that a patient 'appears anxious with eyes darting about the room, feet shuffling, biting fingernails and hyperventilating' - and quite another to diagnose an anxiety disorder. It's one thing to say the patient presents with a flat affect, stumbles over words, speaks slowly, frowns and is tearful at most any interaction with the clinician ~ and quite another to diagnose a clinical depression in need of treatment.

At first I used to write letters to have doctors correct their errors - then got tired and perhaps lazy - as all of my errors added up got even quite hysterically funny..... And then it snowballs when doctors lift off diagnosis from other physicians... This same doctor said I had IBS.... Wrong - where was he getting this stuff? So then my local doctors read his stuff and go 'do you have IBS?' - and you feel like an idiot - and go Of Course Not - I think I would have mentioned that if I did have those symptoms!

Heaven help us! The lack of proper sleep for any reason makes everything else just so so much harder. In CA I had a nice primary who tried me on all kinds of different meds - in the end they didn't help - one doctor - (don't try this at home) gave me "a LOT" of full mg.s of Ativan to try and knock me out when I had 3 nights of total sleeplessness.... I just quit all the meds - they didn't work anyway. I have the mild apnea - but sleeping with hardware on my head was not something I could adjust to at all. Funny thing was when I quit the cpap - I began to sleep "okay" -- Perhaps just the relief to not wear it had me sleep - I don't know!

Take care and I hope you can find someone to help you out -- truly you deserve the best care out there!

[Csmith3]

I think your instinct is right and if it happened to me, I would be very annoyed.

I would ask him, verbally or in writing, what evidence he has for your diagnoses of depression and anxiety. The degree of honesty in his answer would determine whether I had any confidence left in his views. I feel really strongly about holding doctors to account about this kind of thing. No other profession would get away with issuing such strong opinions/advice without factual basis.

I haven't been around much recently so I don't know who else you are seeing, but it sounds like even if this doctor retrieves some credibility, it is someone else you need to see to try to deal with hormones.

By the by, I have no problems sleeping except around PMT time when I lie awake most of the night. It had not occurred to me that insomnia may be in store in a few years time....

Best wishes x

[mkoven]

Thanks, you guys, for the validation. It's disappointing, as I'd more or less liked him till this point. I see my gynecologist in about ten days and can see how willing she is to treat hormonally induced insomnia. I continue to use my cpap, and am glad to have it. I tolerate it okay, and it has helped. I have apnea and feel awful when it's not treated. I guess now I know that my current issues are not from the apnea. But if you google menopause and insomnia, it's not an unheard of connection! Geez! Why reach for the psych diagnoses? Perimenopause can have psych effects, but it's not a psychologically induced condition.

This doc did rx me lunesta, which I've been taking. IT helps some, but I think I may want to taper off, as it seems to mess with my memory. I do need to work with someone, though, so that I can semi-regularly get sleep.

Just a bummer to find a doc whom i thought i could trust, suddenly seem like he doesn't get it.

It's not that I'm incapable of a bad mood from time to time, but I don't think that qualifies as depression. I am certainly not depressed in any sustained way. My life has its challenges, but overall things have been looking up. And I can be anxious in certain situations, but I don't think that intermittent nervousness qualifies me for an anxiety diagnosis. I've had far bleaker times in my life when I slept fine!

[sandymbme]

First of all, I would NEVER give a "second chance" to a doctor who gave a gratuitous psych diagnosis, let alone two of them! I had to have an emergency hysterectomy at the beginning of January, and my ovaries were removed along with my uterus. (Long story, I will spare you guys here!) Which threw me into instant menopause at age 35. Can I say how much that SUCKED?!?!?!?!?!?! I suffered from horrific insomnia, pretty much from the moment they took my ovaries until I finally broke down in desperation and started hormone replacement. Not to sound like the total arch-feminist,but it is the height of inequality that billions to deal safely and effectively with men's hormonal problems with aging, (viagra, anyone?) but women are still viewed as "hysterical" and "neurotic" rather than aging normally with normal discomfort that can be effectively treated. GRRRRRR........

Second of all, I would refuse on general principal to give my business and my confidence to any doctor that gives pat, general answers to my very specific set of issues and complications. After all, even a "presumed" or "probable" (forgive me I forget the exact wording) diagnosis of dysautonomia would have significant implications in treating sleep disorders. The doctor's dismissive attitude gives me little confidence he could treat me effectively, and more importantly, safely. I would NOT see this idiot again!

Sandy

[Daveb]

My son's symptoms were blown off for months by his pediatricians who had treated him since he was 2 (he's 16 now). They treated us like overreacting parents and him as a depressed teenager. I agree about the fact that it wouldn't even be so bad if it weren't for the lack of compassion.

[PotsMom]

mkoven,

What you have experienced is maddening beyond words and is unfortunately the norm rather than the exception with POTS, CFS, etc. I would not waste another bit of time, energy, or money on this doctor! Experience has taught me that you simply move on, even when the prospects of finding another physician who will understand are also slim. Regardless of other options or lack thereof, it is accomplishing nothing to stay with a doctor who clearly does not understand, believe, or have expertise that will benefit you.

For those who haven't watched the recent video by Dr. Montoya at Stanford which can be found on You Tube, I recommend watching it, at least the first part where he talks in general about CFS, etc. He has such obvious compassion for those suffering from such conditions and the frustration of finding cause and cure. One of the things he says is that he hopes that one day when the mysteries are unlocked that there will be a formal apology from the medical community to all the patients who have suffered over the years and have not been recognized as having a real physiological condition. It's worth watching the first part of the video to see and feel his compassion. Though very few and far between, there are a few health professionals out there who do believe and are trying very hard to find the answers and help patients. Too bad we can't clone them and spread them around!