Doctors Appointments...

[BeforeTheMorning]

Okay, I know this is stupid and I'm probably the only one who feels this , but when I get into a doctors office where it's often too hot and the lights are really bright, I can get so brain foggy and zoned out feeling. I then find it really difficult to ask and answer questions, it feels like my brain has gone really slow and I have to think about things for ages before I say anything, and therefore I often end up leaving out things I should have asked. This doesn't always happen, but it happens often enough to be extremely annoying (probably even more so for the doctors ) and I was wondering if any of you guys had any good ideas as to how to get the most out of your doctors appointment? Only I have an appointment with my cardiologist soon, who I've been waiting to see for about 8 months, and I don't want to come back with as many questions as I went with!

Thanks everyone,

Lyla

[Becia]

My friends and I take a checklist in with us, and if I don't ask, she or he will. I also try to wear my sunglasses if I'm really sensitive. Most of the time I end up passing out just trying to get there, so he knows I'm pretty foggy, but if we can write as much of this stuff down as possible beforehand, we seem to get more answers. Also, tape recorders can be of benefit, incase we don't write down what all is said.

[corina]

Hi Lyla, I write everything on paper (questions, new symptoms, everything I want to talk about) and take that with me when I'm seeing my doctor. At hospital appointments I always ask my husband to come with me as at times I don't understand questions and he can help out. He also adds to the conversation when I can't answer the question when I forgot.

[dkd]

I always leave a doctor's office wishing I had asked about something that I forgot. I do take notes in with me, but then I still won't ask about stuff--duh.

I feel like I wasted a $350 consult with a neuro because I left out half of the stuff I wanted to talk to him about (he intimidated me a little also).

So, take in notes and don't be afraid to ask whatever is on your mind. And write things down that they say back to you. I easily forget things once I get home, so I write down what they say on the paper that has my questions on it.

Hope your appointment goes well!

[Katybug]

I take notes too and even though I usually get through my list of things to talk about, I have trouble recalling the conversation afterward. Plus, having to wait in the waiting room, stand up to check in, never being the right temperature, etc. basically just makes me want to get the **** out of there as quickly as possible. Although that often doesn't happen if I have to wait too long because I become presyncopal and they have to lay me down in an exam room for a while anyway. I am actually amazed that docs offices more often than not do not have a seat readily available at the check in/out counter especially specialists who deal with cardiac, eds, dysautonomia, elderly patients on a regular basis. I often pull a chair over to the counter and I get crazy looks but oh well....they'll be looking even crazier if I fall out. :-)

[Dustbunni]

I can so relate to this. Here was how I handled things before my brain fog started clearing:

First, I wrote a brief but informative summarized version of my medical history and gave it to all new doctors. Some doctors loved this, some were jerks. Regardless it saved me from jumbling it all up because I couldn't think clearly. In addition, any time a new symptom or strange event happened that left me especially concerned, I'd write it out as soon as I felt able to. I'd also write down any questions I had for the doctor. Then I could just hand the doctor the new paper and we could go through it at the next appointment. I frequently was not able to remember things after visits - too sick, too stressed. That's where my husband came in. I made sure he was there for everything so he could assist me in answering questions if I was floundering or remind me of what the doctor said if I forgot later.

Also, I tried to always make my appointments as early in the day as possible when I could think the clearest. Obviously, this is not always possible, but it doesn't hurt to try.

My next strategy was about comfort and reducing symptoms during the doctor's visit. I always wore layers in case the rooms were too warm or cold. Having my husband push me in a wheelchair kept me from having to walk or stand (which often wasn't doable anyway) and reduced extreme in-office symptom flare-ups. (This might not be necessary for most people with POTS, but I have a probable mitochondrial disorder as well that effects my muscle strength.) In addition, it's helpful to have a travel bag with things like water, tissues, as-needed medications, etc. A small travel pillow can be useful as well during those long waits to see the doctor. When my symptoms were at their worse I couldn't even sit up without them flaring. Since doctor offices never have recliners, I'd bend forward with my head on my knees to reduce the symptoms while I waited. A soft pillow is more comfortable than bony knees. If the symptoms are so bad you can feel yourself declining rapidly while waiting, don't be afraid to ask the nurses if there is a place you can lay down while you wait. They'll usually find a place, even though they may not be nice about it.

Despite everything I've tried, I don't think I've ever had a doctor's appointment where I didn't leave and then think, "Darn, I forgot such and such!" That's when I write it on the list for the next appointment.

[Chaos]

As others have said, lists help, although even if it's on a list, I will frequently forget to ask it. It helps if I've told my husband (or other family member accompanying me) about things I especially want to ask about as they will help me remember.

I also like to record the visit. Most docs have been ok with this if they are specialists in this disorder as they know about the foggy brain issue. I always ask before doing so.

Once I'm in their office, I will frequently lie down on the table to help get blood back into my brain so I feel a little more cognitively intact when they come in. It disconcerts a lot of them to see me lying down when they come in. Strikes me as funny how some of them can't handle having me lie down and want me sitting up to talk. Hello! This is how i have to spend much of my life. Maybe they need to see this more often to help them face the reality we live with all the time.

[Lethargic Smiles]

You're not the only one! I think this happens to most of us.

I am getting ready to go see a geneticist and am going to have to go through my pre-doctor routine. It takes lots of energy but is worth it.

• I haven't been to a medical establishment yet where they turn me away when I nicely (and pathetically) explain I really need somewhere to lay down while I wait to be called back.
• I always point out to the doctor, "You might notice I don't seem quite with it, this is a symptom." I'll explain how I would have been prior to becoming ill (for example -- alert, probably with just a post it note to remind me of major issues)
• Is there anything you really don't want to happen? For example, you don't want to leave without a certain test ordered or without a certain symptom discussed. Write down your goals for the appointment. For example, "I made this appointment for 3 reasons. I want to talk to you about my dizziness. I want to talk about medication x and I want to find out if you have any thoughts on my abdominal pain". This lets the doctor know your goals for the appointment so if you start getting foggy midway through your first topic, the doctor will know its not that you are done with him/her, you just aren't feeling well.
• Record the appointment. Most cell phones can do this.
• I ask doctors to write down things for me. I don't ask for an essay, I just ask if they could write down any possible disease/diagnoses discussed and courses of action. I've never had one even look at me twice for asking this. If anything, it makes them realize I need their help to get the most out of the appointment. Of course... I've never asked a doctor who is a jerk to do this because I always just want to get out ASAP.
• I always write everything ahead of time. It depends on the doctor. I find the most effective way to communicate via paper is to make a chart with symptoms on the left, then in the right column, I go into detail using bullet points. For each symptom, I include the severity, how often you get it, if anything seems to make it better or worse, how long you've experienced it, if any symptoms seem to occur with it, and what has been tried to help it. This way if the doctor sees "fatigue" s/he can easily look over to the right and read more, or if s/he already knows about this issue with me, can keep moving along. If I am going to a gastro, I'll highlight the gastro symptoms, but still give the full chart because you never know what will be handy.
• Don't leave without finding out "what next" or if the plan of action doesn't work, what should you do?
• Know you'll probably always leave and think "Darn it! I wish I would have asked ______!!" I think this happens even to healthy people!

[BeforeTheMorning]

Hi everyone,

Thanks so much for your kind words and suggestions, I'm going to go and write myself out a list now!

Thanks again,

Lyla

[dkd]

Oh, and I make two separate lists: a list of symptoms and a list of questions to ask.