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Horrible Doctor Visit - Don'T Know What To Do


Tuesday
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Just got back from a horrible appt with my cardiologist and I don't know what to do.

Back in July I had a 30 day cardiac monitor to evaluate me for POTS. I've been having really wild fluctuations with my heart rate. Anywhere from a low of 37 just sitting watching tv to a high of 140 walking across the parking lot. My resting hr has been between 44-55, and I have regular spikes of 50+ points when I get up and move around. I've had debilitating fatigue, dizzy spells, and pre-syncope that has kept me out of work many days over the past few months. In addition, a few weeks ago I had a severe allergic reaction to something and my gp took me off all meds until it cleared to be sure that I wasn't allergic to them.

I went in today for my follow up and to get the results of the monitor, and to talk about what to do about Midodrine being pulled. I take 10 mg five times a day, along with salt tabs. I don't ever see the EP, just the nurse practitioner. I've had some unpleasant interactions with her before, but today takes the cake.

When she came in and asked me how I was doing, I started telling her about my extreme fatigue (I had actually fallen asleep in the room waiting for her). She interrupted me to tell me that yeah, we're all so tired because we're all so busy these days. Um, I wasn't making small talk. She then goes on to say, "Wait til you have kids, then you'll really know what tired is!"

I wanted to punch her in the mouth.

She then went on to say that my monitor didn't show anything abnormal. Just PVCs, sinus rhythm and sinus tachycardia, which are all normal. She said it showed no bradycardia, which is ridiculous because I can verify by my heart rate monitor (chest band) that I had many instances of a very low heart rate. The monitor went off automatically and recorded them. I verified not only by my watch monitor but also by just feeling my pulse. I pressed her again, because I was in such disbelief. I almost wonder if they mixed up my results with someone else's. She said I could do another 30 day monitor if I wanted but there's no way in **** I'm putting myself through that again.

She dismissed my concern and said again there was nothing abnormal, and that I was just having a bad time because of the heat and because I'd gone off my meds for a few days. Told me that hives were just one of those things everyone gets, not to worry about it.

The last time I was there she had mentioned maybe needing to put me on a beta blocker so I asked her about it. She said she didn't like beta blockers, they didn't really seem to help, but said if I wanted to I could try it again. I said no way in ****. So, she is putting me on florinef and I go back in a couple weeks for bloodwork.

I just feel that this whole visit was absolutely ridiculous. She spent the whole time dismissing my concerns and condescending to me. The last time I was there she told me I just need to "slow down," as if that would fix everything. I got back out to my car and couldn't stop crying. I don't know what to do.

I requested a complete copy of my records and I will pick them up when I go in for bloodwork in a couple weeks. I am just at my wits end and don't know where to go from here.

Oh, and on top of this she didn't know anything about Midodrine being pulled, even though I had called in two weeks ago to tell them and get a 90 day supply. She just kind of waved it off saying, "Yeah, I dunno what's going on with that."

I had to tell her the details, how the FDA requested they pull it because of the inconclusive studies and Shire decided to stop selling it because it wasn't profitable. I knew more than she did! When I asked her what the plan was she didn't really have anything to tell me. Just that we would "figure it out when the time came."

Um, hasn't the time come?

I want to just scream. I'm so scared and angry and confused.

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I am sorry you have to go through that! I can understand how you feel, as I have had a few "professionals" treat me in a condescending way. There really is no excuse for it.

Can I ask what you b/p does alongside your wild pulse swings?

My bp without medication is generally pretty low, regardless of whether I'm laying, sitting, or standing. With the midodrine my bp has been pretty steady and close to normal. But, it generally drops a little when I stand up.

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Wow - do you want me to hold her still while you slug her? I'll be willing to help you out! Okay not really of course but DANG - she's one of the worst of the worst - granted! I had a clinician in a department that was similar - gosh it's like someone took a chunk of their real brain out and replaced it with --- I'm not sure what. That dismissive crap should be reported to a Dismissive Attitude Board to protect patients & their dignity. I'm serious! I had one the other day -- & it seems to be more evident when you bring new current knowledge into the picture - for some reason it seems their psyche's are hard-wired to defensive mode - then they dismiss to avoid any discomfort perhaps. I had one guy tell me to get counseling for fatigue & another tell me to see a shrink 'just in case the first guy was right about a need for counseling' - None of which addressed my very difficult and challenging symptom set.

So do know IT'S NOT YOU. And you are right in being angry. And it's almost a stinking right of passage when you are treated shabbily as you press forward to find the light at the end of the tunnel. Well at least you got that horrid part over with. Now while I don't really know how to help you at this point - that doesn't change the truth which is you have the right to optimal care and expert treatment....you deserve to function in your most healthy and happy state! I've had two years of the honest docs that just say, 'I don't know' - and while frustrating it sure beat the other ones in the two years (only 2) that decide that their discomfort should become your issue and blame you. Finally in the end - I found an honest and straightforward doctor to work with that seems to have figured things out. That's what's hard - to find a doctor who is willing to take on your case and hammer out all the details while being on your side - not against you.

I think the famed institutions like Cleveland Clinic and Mayo have good reputations because the system is set up to facilitate just that -- though I only recently have experience with Mayo. It is however such a life affirming thing to have this happen - I now want to uproot and move in close proximity of the places or cities that have such services. Certainly such attitudes do and will happen at all institutions regardless of reputation because people are people....

Anyway rant over - I do feel for you....but this will pass and with perseverance you will most likely uncover what's going on and get appropriate treatment... It just stinks when you have doc visits like this for sure!

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Sorry to hear about your experience with your cardiologist. I've had similiar experiences with a few doctors also. I guess what I've learned to do is either find another doctor, which can be difficult if you live in an area that has only a few specialist, or continue to try and work with her. You could chalk it up to them having a bad day or that they just do not have an understanding of chronic illness. From the sounds of her replies, she's probably exhausted herself, which makes it really hard to offer compassion on to her patients. If you've seen her previous times, and she's tried to help you, than it was probably just a difficult day for her. If this was a first visit, than it's hard to tell if you should give her another chance, or switch doctors. Finding a compassionate doctor who understands POTS is extrememly difficult. It seems like Neurologist have a better understanding of the multitude of all our symptoms, even though they don't have any better ways to treat POTS symptoms, but you may want to try seeing one if you haven't already.

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Sorry about your experience. I have experienced it many times, and I have finally figured out either change docs or speak up and I mean speak up for real let the doc know exactly what they are saying and how its making you feel and express the disappointment in the way that they are practicing and decide to stay with them or move on but at least you gave that doctor some self-awareness and it may make them a better doctor. Even in smaller communities there are at least 5 cardiologists and chances are 1 of them would be interested in learning about *dysautonomia* and would be fully capable of handling treatment of this condition you just have to find the one willing to listen learn and care I made a mistake thinking no-one could treat or even understand this problem unless they were a specialist , thats not the case and if a doc is a very competent and they take the time to learn about their own patient and from what your doctor has said means she has no idea the extent of your issues, so I'd get the results from your monitor the actual numbers and move on to the next one but I'd go back in the 2 weeks speak your mind and get all the results and tell her she needs a refresher coarse one with dysautonomia.

Lissy keep your head up you'll get to a place where you can trust whose handling your care*

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We all need to calmly and politely form a line to punch her in the mouth. While my cardiologist/PotsDoc is great and works with me to determine the best course of action, his nurse practitioners still have a lot to learn from him, but they?re nowhere near as reprehensible and disrespectful as yours seems to have been. It?s good you?re getting a copy of your records. Keep copies of everything.

Yes, 37bpm is most definitely bradycardic (unless you?re a well-tuned athlete) and 140 is well into tachycardia. One must remember that the word ?Orthostatic? in POTS means ?standing without movement?. Is it possible the moron thought you were running a marathon when your heart monitor registered 140?

I don?t know what your blood pressure readings actually are, other than ?pretty low? and ?drops a little?, numbers would help a lot. Do you have a BP monitor at home? Anyway, depending on the dosages, Florinef can sometimes spike your blood pressure, especially while lying down, so please watch out for that.

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120/80 or 110/70 sounds good. It's important to remember that no two people will feel identical at the same blood pressure, some feel absolutely normal at 90/60 and I know some who walk around with a 160/100 and feel fine, but generally 90/60 is a little low (especially the 90 systolic). Pulse pressure should be around 40 on average, so again 25 is a little low, but more importantly is what happens when you stand up from a supine position? How does your blood pressure react, after one minute of standing, two, etc.?

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The trouble is that a lot of doctors look at pots as just simple sinus tachycardia. They fail to see that pots is a circulation problem and not always an electrical problem. The body for whatever reason is not getting the blood it needs even though the heart is fine. Your best bet is to find another doctor, even if you have to go out of your area. Some doctors can not get past their preconceived ideas.

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Oh I'm so sorry you're dealing with this. I unfortunately like most of us have had similar experiences. I really don't care about bedside manner as long as the doctor/nurse LISTENS to me and is willing to help. If that doesn't happen, I find a new doctor period. I don't bother giving them another chance anymore because I've learned that for me I'm left frustrated and back at square one after wasting my time. As far as the Midodrine, they should definitely know that. Even my PCP who is a family doc knew I was taking that and mentioned the FDA watch to me before I brought it up. I wish you the best of luck. Hopefully you'll get some relief soon. Take care.

Elizabeth

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Tuesday,

I'm really sorry you had to endure such nastiness. I'm not trying to be annoying, but it makes me feel so lucky to have never had a doctor treat me like that. No "it's all in your head" stuff at all. Thank God for those doctors who really get it and treat us with respect.

Please find someone else who will treat you with the respect you deserve!

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So sorry to hear about your bad appt. I agree that you should probably look for another dr. It's not worth waisting your time on a dr that doesn't listen or isn't willing to help you.

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Sorry about the bad appt. i so understand and have often , fare to often, felt some what the same... It seems like there are more health care people that dont understand that do.. Do they think they comfort us when saying stuff like that? ore do they dont belive us? i dont know, and I havnt found a way to respond to that.. Some say change the dos etc.. And i have many times, but then many times that not an option. And for me now its better whit the devil u sort of know then....

i wish u luck

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Tuesday, is there any chance you could try the EP cardio in the practice? I think you said you'd never seen them but just have seen the nurse practitioner. Sometimes people practice together in the same group because they have similar personalities but sometimes they are completely different and just happen to share office space. If you live in a smaller community where you might not have a lot of options for docs, it might be worth it.

I have had similar experiences and spent time crying in my car after appts. so I feel for you! Maybe we could all line up and make all these "awful" practitioners run the gauntlet! And then have a parade to acknowledge the ones who actually "get it" and practice with care and compassion!

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I love the " Dismissive Attitude Board " that would be a great idea. Unfortunately, this is what I expect of most clinicians and chronic illnesses. No ability to see the impact on peoples lives. Sorry you had that experience. This is why 1x year I take my daughter to Dr Grubb and Bev Karabin PhD in Toledo. I can;t take the chance of idiots - it is so discouraging.

Louise

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