Epilepsy Talk

It’s YOUR Turn! | November 5, 2020

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57 Comments »

  1. I’m venting frustration. I love my epileptologist, but getting an appt. to see her, no matter how bad my sz, takes forever. First I have to ask for an “appointment ticket,” justifying the need to see my neurologist,” which someone reviews, allowing me to move to step 2: going to MyChart to find the next opening in the calendar. On Monday I managed to grab a Zoom meeting on Jan.12, 2021 @ 4.30. BTW, I’m charged the same amount for telemedicine as an in-person appt. In the meantime, I’ll have to deal with the sz-o’-the-day and brain crashes, even when I think my medications could use some serious tweaking or changes. But at least I don’t have Covid-19!

    Liked by 1 person

    Comment by qmfub — November 5, 2020 @ 10:39 AM

    • An appointment ticket? That’s a new one on me!

      What was your Zoom meeting like? What did she do?

      I’m selfishly asking because I was thinking of writing an article on telemedicine and you could be my “guiding light”!

      Like

      Comment by Phylis Feiner Johnson — November 5, 2020 @ 12:42 PM

      • Sometimes I try to skip the whole computerized system by just punching “0” on the phone until it connects me to a person who can actually do something!

        Liked by 1 person

        Comment by Maralou Higgins — November 5, 2020 @ 12:56 PM

      • When I press “0” (and there are endless options for confusion), I just get dead air!!! 🙂

        Like

        Comment by Phylis Feiner Johnson — November 5, 2020 @ 1:06 PM

    • I am so sorry you have to go through such “steps.” If they refused to see me–or didn’t have the *TIME, I would be ready to “take the tweaking in my hands.” Many years ago, I did this with my first neurologist by hand writing and telling him I was increasing my medication, which one and how much. This was in the day when one had to wait an entire YEAR before the next visit! Well, I succeeded in getting my dosage up enough that the “blackouts” STOPPED! After a year of waiting with NO “Blackouts,” I wrote Dr. Adams, telling him. He was already head of the DMV here in Richmond, Va. for people with medical conditions. I was seizure FREE, had my driver’s license AND a car for about 7 years! One extra year was without “blackouts.” After having a complete hysterectomy, it wasn’t long before they came back.
      Just let them know you are “SOS SERIOUS.”
      *My opinion, only. “Letting out some steam” with you. Take care.

      Liked by 1 person

      Comment by Effie Erhardt — November 6, 2020 @ 8:39 PM

    • I tried to attend my meeting today and yet my epilepsy specialist didn’t even show up! I waited an entire hour! Nothing. •sigh• Lovely…has to check in 15 mins. early, filling out all the necessary questions and all. 🙄 Still no Doctor arrived. All the while my blood sugars got lower and lower since I had not eaten; being a type 1 diabetic as well, I did not want to miss my Appt. I had to try and cook at same time. I ended up burning myself on a Stove at same time w/ low bg of 44. It’s preposterous, no show for this epilepsy specialist. •sigh• Of course, we’re just patients w/ health issues. They’ve tons of patients. Our health issues don’t matter. All this is way too much for me. All these seizures, all this stress, all these health issues that aren’t getting resolved for me and my life feels like it’s just getting worse.

      Liked by 1 person

      Comment by Mirabel Filomeno — November 9, 2020 @ 8:27 PM

      • Ouch. That must have hurt physically and on a visceral level as well…

        Not even being treated like a person, no less a patient. I believe common manners dictate that IF you can’t be on time, to call and at least apologize.

        Such disrespect is hard for me to accept — from anyone. Be it a doctor or a taxi driver.

        And your blood sugar went awry to boot.

        I guess this wasn’t exactly a stellar day for you, Mirabel, and I’m so very sorry for that.

        Perhaps you’ll find some comfort in this piece:

        Ode to a Doctor’s Visit… https://epilepsytalk.com/2020/10/29/ode-to-a-doctors-visit/

        Like

        Comment by Phylis Feiner Johnson — November 9, 2020 @ 9:06 PM

      • Does your health care group have patient advocates? I haven’t had occasion to use one, but a friend has. Worth checking into.

        Liked by 1 person

        Comment by HoDo — November 10, 2020 @ 7:17 AM

  2. I lost my job due to a mild epileptic seizure. It stops me for a min, and I go back to work. My disability was written in a separation document. I am trying to file a EEOC complaint, but can’t get an interview. It may not matter due to the company being small. I am not sure how many worked there? I am trying to replace this job with another, where I am alone, or at least accepted. My area if employment is limited due to transportation, and at home jobs don’t accept wirless dish connections.

    Liked by 1 person

    Comment by Chris Keylon — November 5, 2020 @ 10:45 AM

    • I don’t know about the dish connection part of it, but maybe this link will help:

      11 Companies Hiring for Jobs You Can Do at Home https://epilepsytalk.com/2018/12/12/11-companies-hiring-for-jobs-you-can-do-at-home/

      As for your previous job, have you contacted the ADA?

      The ADA (American with Disabilities Act), applies to all employers, employment agencies, labor organizations, and joint labor-management committees in which at least 15 employees work for each working day in each of 20 or more calendar weeks.

      The ADA excludes the federal government or other employers that receive a certain level of federal support (because they are subject to other similar regulations), as well as Indian tribes and private-membership clubs that are exempt from taxation.

      For more information about the ADA, got to #5 of the subtitle What Are My Legal Rights? in the article Epilepsy, Employment and the Law https://epilepsytalk.com/2019/02/20/epilepsy-employment-and-the-law/

      I hope I wasn’t too confusing!

      Like

      Comment by Phylis Feiner Johnson — November 5, 2020 @ 12:37 PM

  3. I saw a man who had no shoes but then I saw a an who had no feet , then I decided there were others far worse than me so my whole attitude changed

    Liked by 1 person

    Comment by Wally venechuk Gibsons Canada — November 5, 2020 @ 12:22 PM

  4. I like the support and education I receive from epilepsy talk. After 45 plus yrs of struggling with epilepsy I had a left temporal lobe love tiny and now 3 yrs and 2 months seizure free. My life is better but still difficulties due to meds. Currently on 3 meds only off 1 since surgery but I took on lexapro for moods. Plz let’s think positive by reaching out to each other. My drs are at loma Linda. Dr boling neurosurgeon and dr Losey epileptologist. Read about them and what they’ve done with epilepsy in the world. I kiss the ground these drs walk on.

    Liked by 1 person

    Comment by Janet deardorff — November 5, 2020 @ 12:42 PM

  5. I do not have epilepsy but my son does. Had his first seizure at 9 months of age, is now 19. He will never drive, never live on his own. I hate what this disease has taken from him more than I can articulate.

    Liked by 1 person

    Comment by Chester Kuhn — November 5, 2020 @ 12:43 PM

    • I think for a parent, it might be more difficult than for the child. Because your pain is at a more visceral level and deep seated.

      Nobody wants to see any harm come to their “baby” at any age.

      Like

      Comment by Phylis Feiner Johnson — November 5, 2020 @ 12:55 PM

  6. I have had a couple of great telemedecine appt. because my doctor was really paying attention. Then we had one where her kids were coming into the room. That was awkward for her!

    Liked by 1 person

    Comment by Maralou Higgins — November 5, 2020 @ 12:52 PM

  7. I imagine it was awkward. But how was the appointment otherwise?

    What did you do? What did she say?

    I’m being selfish in that I’m thinking about writing an article about telemedicine. But not having had any personal experience with it, I’m kind of in the dark.

    Like

    Comment by Phylis Feiner Johnson — November 5, 2020 @ 1:04 PM

  8. Even though it’s not cool to say, “My stigma is worse than your stigma,” I take issue with the web site listing the Ten Worst Health Related Stigmas and epilepsy is not on it. Rant! Rant! Rant!

    Liked by 1 person

    Comment by HoDo — November 5, 2020 @ 3:26 PM

  9. Good rant!!!

    Like

    Comment by Phylis Feiner Johnson — November 5, 2020 @ 3:29 PM

  10. My experience with Zoom, as with any flickery bits on a screen, is that warning signals go off – Keep this up and you will be sorry, neurologically speaking. My doctors and I talk on the phone.

    A friend uses telemedicine extensively, though. It serves her well.

    Liked by 1 person

    Comment by HoDo — November 5, 2020 @ 3:34 PM

    • Hmmm. I’ve had several Zoom meetings. But I was wondering about the effectiveness of a one-on-one doctor/patient visit.

      Not personal enough? Not targeted enough? Not thorough enough?

      Like

      Comment by Phylis Feiner Johnson — November 5, 2020 @ 3:44 PM

      • Medical appointments by phone are just as targeted and (im)personal as face to face meetings. They don’t feel private, because I can hear other people where I live. And, of course, your vitals can’t be taken. You can hide more, if there’s something you feel uncomfortable with. If it were a diagnostic appointment, I’d be dubious.

        Liked by 1 person

        Comment by HoDo — November 5, 2020 @ 3:55 PM

      • Excellent advice. Thanks HoDo. I may just skip the article after all. Unless I do a Pro/Con kind of thing.

        Like

        Comment by Phylis Feiner Johnson — November 5, 2020 @ 8:16 PM

      • I’ve wondered the same thing, Phyllis. At least now that I’m much older.
        Dr. Adams was my very first neurologist. I was scared to death whenever going to see him! Always felt I was going to be judged–like at home, I guess. He couldn’t have been a nicer man.
        When I DID see him by myself, it was because my mother had died. Now my husband goes and does a lot of the talking. We always carry a printed list of what I take. The doctor already knows this.

        I DO have questions I would like to ask, sometimes. THIS TIME: I want to ask about ANY difference between *Mysoline and *Primidone. If the first is even made any more. Doctors sometimes throw medications at us and we “just take them!” Like someone else mentioned, I need an increase in mine, also. This will take more of his *TIME.

        Things should be much easier for Today’s Doctors. They have *computers! Dr. Adams would hand write everything down! I was in his office for close to an hour–when there, between examination, talking about “events” and writing things down. Plus writing out Prescriptions! They were not called in, like today. Things have changed a lot since 1959.

        Liked by 1 person

        Comment by Effie Erhardt — November 6, 2020 @ 9:10 PM

      • Mysoline is the brand name used in the United States, Canada, and many other countries for the seizure medicine with the generic name Primidone.
        Drug classes: Anticonvulsant

        https://www.epilepsy.com/medications/primidone

        I agree that things sure are different than when I was diagnosed in 1963. Especially the attitudes of the docs.

        But, I think a lot of that has to do with overload. And sometimes the impersonality of the computer age can be your foe rather than your friend.

        Like

        Comment by Phylis Feiner Johnson — November 7, 2020 @ 10:13 AM

  11. Another semi-rant (file under “Only to be Expected”) is that when people try to list problems about having epilepsy, what the patient sees as a problem and what the healthcare workers sees as a problem are often quite different. Thank you to the World Health Org for pointing this out. Let’s give that one a single Rant.

    WHO also seems to, or did seem to in 2005, view epilepsy as a mental health issue. If true, Rant! Rant!

    Liked by 1 person

    Comment by HoDo — November 5, 2020 @ 3:40 PM

  12. I’ll add a third rant to that.

    So, were all crazy? Or is it “all in our heads”? (All puns intended.)

    Like

    Comment by Phylis Feiner Johnson — November 5, 2020 @ 3:46 PM

  13. Anyone know of a life jacket-like head support out there? A family member with temporal lobe epilepsy (none for 7 months, not grand mal, he has arm jerking, and head bobbing) wants to go in his hot tub and take baths. He has anxiety and says warm water helps him calm down.
    Thanks

    Liked by 1 person

    Comment by Suri — November 5, 2020 @ 4:25 PM

    • If you do a search for “inflatable head support,” all kinds of products for travelers will pop up. Some of them look like they will work in water. You could also try “head and neck support.” Maybe a physical therapist could suggest something as well.

      Liked by 1 person

      Comment by HoDo — November 6, 2020 @ 1:21 PM

  14. Suri, the only thing I can think of is one of those neck bath pillows that also supports the head.

    But no complete body float or preserver. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — November 5, 2020 @ 8:20 PM

    • There used to be inflatable neck pillows that were marketed to travelers. They might not be waterproof.

      Liked by 1 person

      Comment by HoDo — November 6, 2020 @ 7:27 AM

  15. I’m here because I want to be an inspiration. I had 40 years of battling with seizures, meds and setbacks before surgery so I know what everyone is going through.

    Back on November 5, 2000, I went to work even though I didn’t feel right. Later that day I had a seizure, got sent home and returned to work the next day. Why bring this up? That was the LAST seizure I had. I’m officially 20 years seizure-free!

    Last night was my bowling night so I went to celebrate with my team. I brought food, bought drinks and we looked pretty bad as far as bowling. 😉 Then I gave the other four guys lottery tickets. I told them, “You have just one chance to feel as good as I do tonight. I just wanted to see five seizure-free years but I’ve seen 5, 10, 15 and now 20 years so that’s what these tickets represent.” Only two tickets were winners and just for $1 but I think they knew what I meant.

    I never thought this day would ever come but it did so I’m just saying, “Never give up! The only way you can win your battle is to fight back! Even if seizures look like they won, think of all the times you got a good shot in!”

    Here’s to many seizure-free days, weeks, months, years! 🍺

    Liked by 2 people

    Comment by Ed Lugge — November 6, 2020 @ 8:28 AM

    • Huzzah! Hooray! Congratulations! May it be so!
      And thanks for sharing.

      Liked by 1 person

      Comment by HoDo — November 6, 2020 @ 8:52 AM

    • Oh Ed, that’s wonderful. Your attitude and generosity are inspiring. Your love of life and gratitude are touching.

      May we all share your fate and have the grace to appreciate the positive in our lives.

      Like

      Comment by Phylis Feiner Johnson — November 6, 2020 @ 9:15 AM

      • Thank you. I just want to spread a positive feeling.

        Liked by 1 person

        Comment by Ed Lugge — November 6, 2020 @ 9:24 AM

    • CONGRATULATIONS!

      Liked by 1 person

      Comment by Effie Erhardt — November 6, 2020 @ 9:38 PM

    • Wow Ed,,, Thank you for sharing your beautiful story, it’s uplifting.
      Congratulations for your victorious
      struggle to beat epilepsy.
      Gerrie

      Liked by 1 person

      Comment by Gerrie — November 7, 2020 @ 3:29 PM

      • Anytime I see what I share is helping others and giving them a positive feeling, it encourages me to stay on this positive track and let loose with anything that will build people’s confidence.

        Liked by 1 person

        Comment by Ed Lugge — November 7, 2020 @ 4:06 PM

  16. I have been asked to consider writing about a difficult time in my life. Such writing would not be fun, so I waver. Why revisit negatives? Why put them out there?

    In an essay in Leslie Jamison’s excellent book, Make It Scream, Make It Burn, I found the line, “Finding darkness in another story is so much less lonely than fearing the darkness is yours alone.”

    So I thank also all of you who share dark stories, and consider how to string the beads of my own.

    Liked by 1 person

    Comment by HoDo — November 6, 2020 @ 1:51 PM

  17. HoDo, however you look at it, you are a jewel.

    Like

    Comment by Phylis Feiner Johnson — November 6, 2020 @ 1:57 PM

  18. Right now my anxiety is through the roof! Especially with Covid. My neurologist‘a office is in a hospital. Now there’s an outbreak there. I want to do a phone visit. I’m already working at a Covid testing site

    Liked by 1 person

    Comment by Chantel — November 7, 2020 @ 1:20 AM

    • Some people are reporting good results with telemedicine. I think it’s probably worth a try.

      If nothing else, it may put your mind at rest.

      Like

      Comment by Phylis Feiner Johnson — November 7, 2020 @ 9:50 AM

  19. As long as this invitation stays open, I’d like to share another milestone in another month.

    Liked by 1 person

    Comment by Ed Lugge — November 8, 2020 @ 1:40 PM

  20. Sometimes you wonder if you will ever be able to get off of social security. You can feel so smart, maybe even smarter than people you know. Financially, it can be scary. I want to bbn publish my children stories and book for disabled, as well as, get married. I do not care to live alone or on low income all of my life.

    Liked by 1 person

    Comment by Macena Mason — November 10, 2020 @ 6:38 PM

  21. First of all my heart goes out to each and everyone of you the struggle sucks… I have suffered with OCD most of my life which just by itself really sucks…reached out to many docs their answer was antidepressants which helped a little…had my first grand mal at 56 so what the hell add that to my OCD…and in my younger days some addiction to alcohol which at the time thought helped my OCD…now at 59 I’m truly exhausted can’t seem to get through the darkness…on keppra for nocturnal seizures it works but I don’t like the side effects tried others …can’t seem to get answers from docs…on lexapro don’t feel like that’s doing much…very frustrated sick of neurologists …when are they’re going to be specialists in mental illness and epilepsy….glad I can vent just very frustrated 😠

    Liked by 1 person

    Comment by Jody — November 12, 2020 @ 8:29 PM

  22. Oh Jody, what a tough road you’ve been traveling. I think the addiction was just you trying to self medicate yourself. And I’m sure the pain was all too real.

    Epilepsy is tough, but Keppra in itself is a challenge.

    Keppra — What People Are Saying https://epilepsytalk.com/2020/05/21/keppra-what-people-are-saying/

    It can bring out the darkest side of many. And to others it’s a life-saver. And I’m sure the nocturnal seizures are depressing too.

    I’ve been in talk therapy and on antidepressants (as well as Lamictal) for many years. The combination really works for me. But sometimes you have to kiss a lot of frogs to find your magical mix.

    I tried many antidepressants. On one I almost leaped from a third story terrace. Not very reassuring.

    And I “interviewed” many therapists. Until I found one who truly is a “prince” of a man.

    Things can be grim. But they also can improve. You need to be your own advocate and just believe.

    Like

    Comment by Phylis Feiner Johnson — November 12, 2020 @ 8:49 PM

  23. Thank you so much for your insight I have been limited on doctors I can see but fortunately I will be getting Medicare in March so hopefully I can find some better specialists….I’m on disability which effects my self esteem…. I was a hairstylist for many years and issues with my hands and wrists… I also wonder if some of the chemicals I worked with added to my problems…anyway I’ll stop going on and on…thanks again for your help…so glad we have this platform to share our issues it makes me feel like I’m not alone in my struggle ❤️

    Liked by 1 person

    Comment by Jody — November 13, 2020 @ 8:35 AM

  24. You know Jody, perfumes like those found in hair care chemicals and the like, CAN be seizure triggers. Which is an unfortunate effect of your profession.

    Medicare will help with the doctor and drug costs, but they’re very stingy about counseling. So you’ll have to be a bit persistent on that point. (One of my therapists takes Medicare, one doesn’t.)

    But you’ve made it this far, Jody. I have faith you’ll succeed, and find your way through the darkness.

    Like

    Comment by Phylis Feiner Johnson — November 13, 2020 @ 10:28 AM

  25. I just received an email from Love Your Brain Foundation, a support group for us brain-damaged. It included an annual report with the notation that the report contained a mild animation, but if you’d rather have the unanimated pdf, click HERE. Brought tears to my eyes. Finally, someone gets it!

    Liked by 1 person

    Comment by HoDo — November 19, 2020 @ 4:46 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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