Epilepsy Talk

Ode to a Doctor’s Visit… | June 10, 2018

They forget that we live 365 days or 8,760 hours a year with our illness…

We see them for four 30 minute visits or 2 hours in that year while we’re struggling…

We spend time planning in anticipation of this precious, important moment…

We invest hope and sometimes fear into the event…

We have often orchestrated endless tests and other Doctors’ assessments in order that instruments will be tuned to perfection…that they might render us an orchestral visit…

The Doctor will listen to us as we have observed our condition relentlessly and respond with the respect due, to the information we offer and know what is needed…

That is what we ask.

By Sally Komar

 


38 Comments »

  1. at times you sometimes feel like you’re wasting time with the doctors not all feel that way but I’ve encountered quite a few that feel that way !!

    Liked by 1 person

    Comment by maryleeparker — June 10, 2018 @ 5:46 PM

    • And sadly so, sometimes (oftentimes?) they make you feel like you’re wasting THEIR time.

      Your time is equally valuable! And NO ONE’S time should be “wasted”.

      Like

      Comment by Phylis Feiner Johnson — June 10, 2018 @ 7:04 PM

  2. Right. You would think doctors knew enough to give you advice on your condition, but it’s only if a patent has that ‘magic’ moment- having a spell/seizure the very moment you are in the eyes of the doctor. Trying to describe what it’s like to the doctor- how do they
    know? Hardly any doctors actually experience the moment(s) themselves- also take into consideration- if they did have it, what would the percentage be they had the exact same type you have. Until recent years, anyone having Epilepsy was thought of as one who passed out in a freakish manner.

    Liked by 2 people

    Comment by Karen — June 10, 2018 @ 6:25 PM

    • The one who knows your body best is YOU.

      The challenge is making another person, who theoretically is a professional, understand it in a medical way too.

      No, they can’t experience our seizures or how we feel, but communication, time and empathy go a long way.

      Like

      Comment by Phylis Feiner Johnson — June 10, 2018 @ 7:08 PM

  3. My favourite quote was from a specialist nurse, “Yours isn’t photosensitive”, so how do you explain my having one after seeing a strobe?” “Autosuggestion”, ??????

    Liked by 1 person

    Comment by Clare Ashton — June 10, 2018 @ 6:27 PM

  4. Amen! All I wanted was a doctor’s note after my car accident. Who would think I would have to ask 3 doctors and a nurse to confirm what everyone knows?

    Liked by 1 person

    Comment by megambon2164 — June 10, 2018 @ 8:11 PM

    • A note is the least they could do.

      Did they have to examine you first?

      Like

      Comment by Phylis Feiner Johnson — June 11, 2018 @ 9:47 AM

      • Well, I was examined by the pain management specialist. He told me that my pain from the Uber accident was so bad from my neck to my right big toe that he couldn’t give me the cortisone shot. So I have to be on muscle relaxers and PT for a couple of months. And I got banged into by a shopping cart, which put my whole right side into spasm. The doctor said it is aggravating my PTSD! Because I am a reporter, I have to be in up-front seating, but recently I had my stuff moved out of my seat by a snotty man while I was taking pictures. He even moved the cane! So I wanted to get a doctor’s note, but he didn’t have time. So I called the secretary the next day, who couldn’t comprehend that I need a seat up front with a back for support for my spine. The doctor never called back. So I talked to my social worker. He can’t write notes, so he referred me to my epi, who wasn’t in. The desk called her PA, who referred me to the nurse. I couldn’t reach her. Seeing primary care for the note and some Ativan. Wish me luck, dear Phylis! Between the pain and my nerves, I am about to have a meltdown – and God forbid, a seizure!

        Liked by 1 person

        Comment by megambon2164 — June 11, 2018 @ 10:54 AM

      • Oh Mary Ellen, what a horrid time you’ve had.

        Can the Pain Specialist write you a note? What about the Physical Therapist?

        I hope, at least, that your Primary Care Physician can come through.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — June 11, 2018 @ 12:33 PM

  5. I actually had a pretty good appointment with my neurologist last week….. I’d been worried about it for days prior but things went so smoothly it was surprising…and great. My epilepsy was caused as a side effect of a crainotomy. The neurologist has wanted me to have MRIs yearly. This time,as I explained stressful, financial difficulties, he listened carefully and not only was the MRI (which was due) not scheduled, he even volunteered to put off the levels check he had been planning on! On the less happy side…one of my meds was adjusted — seems we had a miscommunication on what I should be taking (which, interestingly he took the blame for), and so it was raised and now I’m back to sleepy, sleepy, sleepy as my body adjusts to the new dosage. How such a little amount added can make a person so sleepy is beyond me!! This too shall pass!

    Liked by 1 person

    Comment by Ellen LaFrancis — June 10, 2018 @ 9:18 PM

    • Happy you had such a positive experience and the glitch was acknowledged and appropriately handled.

      Isn’t that what we should expect?

      Like

      Comment by Phylis Feiner Johnson — June 11, 2018 @ 9:52 AM

  6. I live over in France and we are fortunate enough that a very large percentage of our health care is “free” 70% in fact and the other 30% has tpo be picked up in varying degrees by the patient and/or by a top up private insurance. However, even better is that if you have any long term illness – epilepsy being one of them and any conditions linked to your epilepsy – then you are covered 100%. When I was living back “home” in the UK, absolutely everything was covered for everyone, medication included – we were so lucky – but we had much less choice in where we went and saw and waiting times for appointments were often lonnnnnng!! How long you got with your specialist also depended on the specialist. I got all of 10 minutes with the first one and then 2 hours(!!) of totall time and attention from my second one. That was the beginning of my seizures becoming controlled!

    Liked by 1 person

    Comment by Margaret Hay — June 11, 2018 @ 1:43 AM

    • The good news is that your seizures became controlled.

      The bad news is it took forever and two doctors to determine your solution.

      I guess there’s really no such thing as “FREE”.

      At least not trouble “free” or “worry” free.

      Like

      Comment by Phylis Feiner Johnson — June 11, 2018 @ 9:58 AM

  7. PS – sadly they reared their ugly heads again 2 years ago and are still refusing to go away despite my medics best efforts – and I can’t fault the French doctors for time and effort.

    Liked by 1 person

    Comment by Margaret Hay — June 11, 2018 @ 1:46 AM

    • Oh no.

      Who do you go to next? Another specialist?

      How long will it take for some resolution?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 11, 2018 @ 9:59 AM

      • Sorry for the delay in replying – have had a slightly ropey spell over the last few days. I have another appointment with my specialist here on the 28th of this month but don’t know where that will take me?! However, my husband and I have decided that we have ot leave our lovely little French village – no public transport and miles from any hospital (12 hours from my specialist). So, we have taken the difficult decision to sell up here (22years home) and move back to our home city of Edinburgh in Scotland. I just can’t be “trapped” here in a French hamlet with no driving licence any longer – I’ve tried now for 3 years. In Edinburgh, I will be only a short distance from a specialist epilepsy clinic and all sorts of “things”!! Sad and temporarily quite stressful – NOT good for the old seizures – but hopefully, a good long term solution. Thanks for listening – it’s always a huge help!

        Liked by 1 person

        Comment by Margaret Hay — June 16, 2018 @ 4:16 PM

      • Margaret, I’m so glad to hear from you. I must admit, I was a bit worried.

        I’m sad that you have to leave your lovely French hamlet, but your sensibilities take you elsewhere.

        Best of luck to you in Edinburgh. Do you already have a home picked out?

        Liked by 1 person

        Comment by Phylis Feiner Johnson — June 16, 2018 @ 4:41 PM

      • That will be a hard change. But I do know that is needed, from how I’ve had to make simular sorts of changes in my past.

        Liked by 1 person

        Comment by whittemore1958 — June 17, 2018 @ 6:10 PM

      • Thanks for taking th etike to read my comment – I am just taking each day as a time at the moment. Had a bad weekend of seizures unfortunately – hence my silence – but almost bouncing around now!!

        Liked by 1 person

        Comment by Margaret Hay — June 18, 2018 @ 4:02 PM

      • Margaret, I’m rooting for you! I know you can get through this — with flying colors.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — June 18, 2018 @ 5:17 PM

  8. What I’ve had to deal with, when it comes to my seizures, is that since an EEG monitor has a hard time picking them up, a number of neurologists have said that my seizures are “Non-Epileptic”, or “Not Real”.
    How can they say that when they are not the one experiencing it? There are a lot of types of seizures that are difficult to describe, too deep inside the brain or simply too fast for a monitor to pick up.
    The last time I had an MRI done, I felt the left side of my face tighten up, like it always does during a seizure. I told the technician about it, and she simply said “It’s not real.”
    One neurologist said “No, I’m talking about the Real convulsions.” While another one, who just worked in the monitoring unit and rarely checked in on me, said that my seizures were “Psychological and were coming from some where else in my body.”
    I’ve always thought that there is too much that they still do not know about the brain, to say that a person is having “Non-Epileptic” seizures. Plus, for the sake of the person’s feelings about themselves, this title should be changed from “Non-Epileptic” to something like Epileptic Seizures of Unknown Origin.

    Liked by 1 person

    Comment by David Jensen — June 11, 2018 @ 12:49 PM

  9. My doctor is Awesome. He spends an hour at a minimum with me every visit. He really tries to look at every Avenue had to help my disorder is open to new developments and is not just stuck on feeding my body with meds. Which is great for me because I am all for alternative medicine. My doctor always returns calls and I have been seeing him for 10 years and would be devastated if he ever retired or left his practice

    Liked by 1 person

    Comment by Janet — June 11, 2018 @ 2:03 PM

    • Wow Janet, it sounds like you’ve found a gem.

      And one that even believes in alternative medicine. That is rare.

      A doctor with an open mind. Wouldn’t we all just love that!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 11, 2018 @ 2:41 PM

  10. When I was growing up, I went to see the neurologist. O didn’t see anything more than my seeing a doctor. That was because of being a kid and my mom talked to the doctor. In my teens, I liked the neurologist who I say for many years. He always showed that ye understood my feelings and health. While seeing him, he tryed to do what ever he could, to help me.
    In 1981, I moved far from there. I’m still in that same state. It’s been 37 years. I already am seeing my 6th neurologist. In the first 20 years, I say neurologists who were very far away, because I could easily get a ride. Since then, I only see a neurologist here in my rual town. There is only one doctor who travels here from far away. when I set up an appointment, I’m forced to wait 6 months. I can’t understand why my town hospital won’t try hard enough to help the hundreds of neuological patients who live in this part of the state. In my seeing so many doctors, this past January, I saw a neurologist here in town, for the first time. Real soon after that, he decided to no longer come to this part of the state. What happenned, did I scare him away? From the same office, another doctor is coming to this town. I hear that he is a nice doctor, but I sort of wonder if my seeing him, will scare him away, too. Because of this, I don’t like doctors. I feel that doctors don’t care about the patient, nearly as much as they are supposted to. With my deciding to be my own doctor, I’m feeling much better than when a neurologist says that he will help, but I think that they hurt me much better than how they think that they are helping me.

    Liked by 1 person

    Comment by whittemore1958 — June 14, 2018 @ 11:13 PM

    • I don’t think you “scared him away”.

      I think like the others, he probably moved on to a bigger hospital or practice.

      It is a shame that your hospital doesn’t value the importance of neurology or the many patients who need neurological care.

      But, I don’t know if you should take your own health in your hands.

      They’re neurologists for a reason, but I agree that an off-hand manner can be just as damaging as the doctor himself.

      Like

      Comment by Phylis Feiner Johnson — June 15, 2018 @ 12:11 PM

      • I understand what you are saying, but also, in the situation that I’m in, I feel like seeing a neurologist is more dangerous than my being “my doctor”. The reason for that, is because my family practice MD here in town tells me that he can’t help me at all, with my epilepsy other than writing my a medicine prescription. I have an appointment to see a neurologist, who is from the same office as the last one. That office is about 125 miles away. I would go to that office if I could. But I have no car. When the doc comes here, he comes every other week. That sounds good, but so many people need to see him, that I need to wait 6 months since I made the appointment, until I can see him. why won’t the local hospital care about all of the people here who have neurological illnesses? When I used to take the medicine the way that the doctor prescribed it, the medicine made me feel, now and then, like comiditing suicide. With my lowering my prescription, that went away. A couple times every year, the hospital brings up that we need to find a way to cut these suicides back. Why doesn’t the hospital find, still, another neurologist to also come here? That not only would be good for locals, but also, this is a resort town. Some visitors need a neurologist, especially if they had a ski accident ant injured their brain. I feel that I should be in Denver for a neurologist, but no way will I move because I love life here in this rual resort town.

        Liked by 1 person

        Comment by whittemore1958 — June 16, 2018 @ 1:03 PM

      • I see your point in taking the responsibility for lowering your dose on your own.

        And I agree. Pill pushing docs are worse than no docs at all.

        It seems the need is keen to have a working neurologist full-time in your area.

        Especially in light of the fact that it’s a ski resort town.

        And as you say, any accident can happen.

        A neurological injury could be a disaster.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — June 16, 2018 @ 1:21 PM

  11. There was a town meeting a few nights ago. It was for medical reasons. At it, I spoke up. The person who spoke up before me was asking about what we should do to help young ones who are having problems such as in school. I then said that to help this, those people should be able to have a neurologist here in town to help them. Just like I have epilepsy, just like hundreds of others in this county. I added that for years the hospital has told me that they are looking for a neurologist. But with it being such a long time, in several years, are they even trying? with my getting after them, in a harch way, I woke them up. They are contacting me, telling me that they are starting to try harder.

    Liked by 1 person

    Comment by whittemore1958 — June 16, 2018 @ 1:44 PM

  12. Would you know where I could get US stats on which level 4 epilepsy center does the most pediatric surgery? Each one will tell you they do. I have tried the CDC website and their informational number. Both very weak. I have called the National Epilepsy Centers also. They say they do not have those stats. This am I was told by Jen the program director to call Perc? No one seems to know what that is or a number for it. I find it hard to believe that these stats are not collected especially when the government has their hands in everything about healthcare today. I greatly appreciate any information you might have.

    Liked by 2 people

    Comment by Rita Miskin — June 18, 2018 @ 2:57 PM

  13. I’m very confused post-seizure so can’t remember how to reply to a reply Phylls made to a comment from me a few days ago – I am just staring at the screen and haven’t got a clue!!! Normal behaviour for my brain for at least 2/3 days after seizures!! I do want to write to you Phylis and don’t know how to indicate that my reply is specifically to you. Sorry.

    Liked by 2 people

    Comment by Margaret Hay — June 18, 2018 @ 4:09 PM

    • Was this it?

      “I live over in France and we are fortunate enough that a very large percentage of our health care is “free” 70% in fact and the other 30% has to be picked up in varying degrees by the patient and/or by a top up private insurance. However, even better is that if you have any long term illness – epilepsy being one of them and any conditions linked to your epilepsy – then you are covered 100%. When I was living back “home” in the UK, absolutely everything was covered for everyone, medication included – we were so lucky – but we had much less choice in where we went and saw and waiting times for appointments were often lonnnnnng!! How long you got with your specialist also depended on the specialist. I got all of 10 minutes with the first one and then 2 hours(!!) of total time and attention from my second one. That was the beginning of my seizures becoming controlled!”

      Me: The good news is that your seizures became controlled.

      The bad news is it took forever and two doctors to determine your solution.

      I guess there’s really no such thing as “FREE”.

      At least not trouble “free” or “worry” free.

      You: “PS – sadly they reared their ugly heads again 2 years ago and are still refusing to go away despite my medics best efforts – and I can’t fault the French doctors for time and effort.”

      Me: Oh no.

      Who do you go to next? Another specialist?

      How long will it take for some resolution?

      Sound familiar?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 18, 2018 @ 5:28 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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