Epilepsy Talk

Good news, there’s a new AED in town! | December 4, 2019

On November 19, 2019, the U.S. Food and Drug Administration approved cenobamate (XCOPRI®) for the treatment of focal epilepsy in adults. This medication will be available in the pharmacy by the spring or summer of 2020.

In research trials, XCOPRI was shown to significantly lower seizure frequency when taking the drug with other seizure medications.

To find out more, go to:

https://www.epilepsy.com/article/2019/12/fda-news-cenobamate-xcopri%C2%AE-focal-epilepsy-adults?fbclid=IwAR0uqrN8rRhM56_BRecy7jMy8zsk5zu1zkcknsDaiJwSK6gdNht7oMpq2dU&ct=t(eNewsletter-11-20-2019_COPY_02)

 

 


68 Comments »

  1. WOW!!!!!! That looks VERY PROMISING!! Almost makes me want to ask about it!! Like I said earlier my visit with the neurologist is this Friday. Maybe I’ll bring that up then? I wonder if we have it here in Canada?

    Liked by 1 person

    Comment by Kathy S.B — December 4, 2019 @ 8:05 PM

  2. I will MAKE SURE TO ASK!!!!! Thank you SO MUCH FOR GIVING ME A GLIMMER OF HOPE!!!!!!! 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🦅🦅🦅🦅🦅😇😇😇😇😇😘😘😘😘😘. NOW JUST TO PRAY🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼😘😘😘😘😘😘😘😘😘😘😘😘😘

    Liked by 2 people

    Comment by Kathy S.B — December 4, 2019 @ 8:10 PM

  3. Thank you Phylis any new effective AED is welcome BUT this Korean drug is very new and has not been used in many people or for a long period of time yet. As new drugs are used first by thousands and then by millions of patients for extended periods of time the side effects and interactions profile grows. XCOPRI significantly increases plasma levels of Dilantin (Phenytoin) and seems to have a potential for habituation which might make it difficult to Change off of if needed. I have read that one should avoid new drugs until there is two years of wide scale use … Unless if course there are strong extenuating curcumstances. Personally I hope it really works over the long term so that I can use it to recuce my dose of Dilantin!

    See:
    https://www.rxlist.com/xcopri-drug.htm#description

    Liked by 2 people

    Comment by Michael H — December 4, 2019 @ 8:57 PM

    • Michael, you’re entirely right. I was just so excited about the possibilities of this new drug that I had to post it.

      But thanks for your extensive research and input.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 5, 2019 @ 10:00 AM

  4. Why is no matter how new the drug is it causes depression and suicidal thoughts? How can they approve a drug that can can change the electrical currents to the heart? This is not hope its exchanging one problem for another. Not one of these drug companies investigate what component of this chemical cocktail causes the suicidal thoughts and depression?
    Sorry that’s bullcrap. It’s done on purpose.

    Liked by 2 people

    Comment by Tom — December 5, 2019 @ 6:35 AM

  5. Goodmorning Tom 😊. Well when an epileptic is made to feel as though they’ve run into a road block then maybe it’s time to check and see if a different medication would be able to help that person more than what their being helped or hindered with now on the medication they’ve always been on their whole life. At this point I’ve been on tegretol and Dilantin for 41.5 years and I can feel the toll it’s taking on my body. It’s true the suicidal tendencies don’t appeal to me but based on keppra maybe it’s time to try or none of us will ever have any options except to have our heads cut open and half of our brain removed IF IT CAN BE!! As for me I just want to live and enjoy my husband, children, hopefully one day grandchildren and my friends 😊. On the flip side yes i do make sure to take into account the suicidal tendencies and emotional toll it takes on us. However hyponatremia is not a battle I would ever wish upon my worst enemy!! So sometimes we need to have a new medication on the block simply for hope. Thank you and please have a very good day today 😊🙏🏼🦅😇💞

    Liked by 1 person

    Comment by Kathy S.B — December 5, 2019 @ 9:06 AM

  6. While this might be good news for some, I wonder why they are pushing it through without doing phase three of the testing. Initially it was to be completed December 2020, and now they are pushing it through early and eliminating phase three, unless I’m understanding it incorrectly. Big red flag, to me. https://www.drugbank.ca/drugs/DB06119/clinical_trials?conditions=DBCOND0064692&phase=3&purpose=treatment&status=active_not_recruiting

    Liked by 2 people

    Comment by Marlyn — December 5, 2019 @ 12:48 PM

  7. Phase 1,2 and 3 trials were completed in order to get the drug registered in South Korea. Of course the FDA does not have to accept trials conducted outside of its jurisdiction but the fact that FDA approval was granted shows that phase 3 trials were conducted satisfactorily.

    A (partial?) list of trials completed and in progress can be seen at :

    https://clinicaltrials.gov/ct2/results?cond=&term=YKP3089+&cntry=&state=&city=&dist=

    However, this drug does seem to have a few major drawbacks AND the trials to date did not include enough patients over 70 to allow a dosage recommendation for those over 70. However, like Kathy I would welcome a safe effective alternative to Dilantin…but for me at least it must have a dosage approved for the over 70’s!

    Liked by 2 people

    Comment by Michael H — December 5, 2019 @ 3:52 PM

  8. Well when your son has JME and he is drug resistant to AED’s and all he can tolerate is zonegram which gives him anorexia and klonopin which does nothing except raise his seizure threshold and does nothing for his anxiety then you get pissed. He also has majotvdepressive disorder and ketamine treatments only work for 2 weeks at 200 a treatment not covered by insurance then what? The only thing that helps is he is on 30mg of oxycodone a day and sometimes that’s CV not enough. He is a nuero psychology major and is 27 and 16 credits short of his degree. He tries to hard and his life is hell.

    Liked by 2 people

    Comment by Tom — December 6, 2019 @ 8:23 AM

  9. What an accomplishment for a guy going through hell!

    For all his experiences, I’m sure he’ll be an ace neuro psychologist.

    He’s been on the other side.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 6, 2019 @ 8:52 AM

    • Thank you Phyllis, he is a good man who feels he will never get a break. He gets what he calls brain zaps most days. all day and night. Its driving him mad. The isolation is killing him as because of his mood swings. he has lost friends and brothers who no longer talk to him.

      Liked by 2 people

      Comment by Tom — December 6, 2019 @ 9:31 AM

  10. That must be so difficult! 😦

    I really feel for him — and you.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 6, 2019 @ 9:54 AM

  11. Whatever happened to sincere love and compassion? I’m sorry to hear that about his friends and brothers. On the flip side sometimes less is easier for us epileptics to handle. It’s hard enough being an epileptic as it is. We need support, unconditional love and a willingness to truly help us understand what is happening to us first. Then we can deal with everyone else later. I HOPE YOUR SON CAN OVERCOME AND BECOME THE BEST PSYCHOLOGY MAJOR IN THE WORLD!! 😘🙏🏼🦅😇💗😘

    Liked by 1 person

    Comment by Kathy S.B — December 6, 2019 @ 11:22 AM

    • Thank you Kathy, unfortunately I cannot say that his isolation from brothers especially is unwarranted. The youngest brother especially really tried but when you are constantly verbally abused and his anger over his disease is taken out on all around him then he has no one to blame but himself. He needs therapy , DBT therapy but he refuses. He blames my wife and I for all the side effects of meds we pushed him to try and stick with long enough to see if he could get past them. But not only did they not work he suffered the most extreme side effects. In fact once in hospital they pumped him so full of depakote he actually seized and he suffered kidney damage. He has had steven johnson, keppra rage that destroyed a 1/4 of my basement ,cut his hand and refused to go to doctor and got MRSA and had to be pumped full of antibiotics. The suicide attempts have taken a toll on us. I blame myself for bringing him into this world to suffer. My wife is beside herself because he takes it out on her and we have the other 2 to deal with . Her tears never stop and I fear for her health. I am hoping once the other 2 go out on their own it will get a little better. As he said he would rather have cancer then to live his life Iike this. He fears that we die and he will be left alone and I cannot blame him. And yet we know if he did not come down with this disease he would be thriving in a career already . He is a 3.8 avg in school. May GOD bless us all and I pray for all of us who suffer from this disease.

      Liked by 2 people

      Comment by Tom — December 6, 2019 @ 1:35 PM

      • One time I had a personal incident with one of my children. I sat there for the longest time asking why and what was she thinking?’ The response I got was “she wasn’t thinking and that is not your child, but at this point in time at least she’s alive and eventually things will get worked out and she will get the help she wants and needs for herself. Don’t blame yourself 💞😊🦅🙏🏼

        Liked by 1 person

        Comment by Kathy S.B — December 6, 2019 @ 1:43 PM

  12. Also THANK YOU MICHAEL 😊. And YES I AGREE WITH YOU AS WELL!! Please be well and have a very good day today 😊🙏🏼🦅😇😘

    Liked by 1 person

    Comment by Kathy S.B — December 6, 2019 @ 11:24 AM

  13. I find for me the ZAPS come from the side or the back side of our necks then switch to the other side. I’ll find out how my neurologist appointment today goes and I’ll get back to you. Please be well and have a very good day today 😊🦅🙏🏼💞

    Liked by 1 person

    Comment by Kathy S.B — December 6, 2019 @ 11:26 AM

    • Kathy, good luck at your neurologist appointment. Wishing you positive outcomes.

      You are in my heart.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 6, 2019 @ 2:11 PM

      • THANK YOU PHYLIS!!!!!!! As you are in mine 😘🙏🏼🦅😇💞😘

        Liked by 1 person

        Comment by Kathy S.B — December 7, 2019 @ 12:35 AM

  14. Yes that’s all I say to myself is at least he is still alive.

    Liked by 2 people

    Comment by Tom — December 6, 2019 @ 3:46 PM

  15. Where there’s life, there’s hope.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 6, 2019 @ 4:48 PM

  16. Goodevening Phylis 😊 thank you for the WELL WISHES!! I greatly appreciate it and you!! 🙏🏼🦅😇😘💞. It looks like I am going to be weaned off of the Dilantin and tegretol and slowly changed to “TOPIRAMATE” which I think is a generic version of “TOPOMAX”. So on that note first things first I guess I need to make sure “topiramate” is NOT GENERIC!! Because I’ve already been down that road and DON’T WANT TO GO DOWN IT AGAIN!!!!! Secondly it turns out I am/ was toxic!! I knew that already and I kept saying that too!! But the nice part to “TOPOMAX” “TOPIRAMATE” is there’s no HYPNATREMIA with it!!!!!!! YAY 😃!! However again I am switching and again my family and friends are now feeling worried and on eggshells as well!! However with the switch on to on drug I will be weaned off of two old VERY PAINFUL DRUGS at the same time. I wasn’t able to feel a couple of spots on my body and i was told I am having a “focal seizure” now. Therefore the medications are being changed and I guess we will see how this goes this time!! Lol if it’s any consolation I kind of chuckled when the neurologist told me “you’ll lose weight on this medication too” 😄😉. I just looked at him and asked told him “okay, but will everything come back in terms of feeling?” He said it should. So here I go again for the next 6 months on another change of medications. OH HOW I HOPE THIS WORKS!!!!!!! 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼. The funny part is as he’s very slowly weaning me off of tegretol and Dilantin I have to bump up my clobazam back up to 20mg a day?! Hmmm 🤔. Well for now it’s time to rest and try and figure out the rest tomorrow. Thank you and please have a very good night tonight and please have a very good sleep too!! 😘🙏🏼🦅😇🙏🏼😘💞💞💞💞💞

    Liked by 1 person

    Comment by Kathy S.B — December 7, 2019 @ 12:34 AM

  17. Goodmorning Phylis 😊 I hope you have a very good day today 😊. I was wondering Phylis if I’m allergic to generic medication (before I start this medication) should I check as to the brand name of this “topiramate” first? Meaning genie or brand name before I start? Because I don’t want to have to do what I did this last time with the medication switching from a generic to a brand name. Thank you and please take care of yourself and have a very good day today 😊🙏🏼🦅😇💞😘

    Liked by 1 person

    Comment by Kathy S.B — December 7, 2019 @ 8:18 AM

  18. The generic name for Topamax is indeed called Topiramate.

    Other generic brand names include: Qudexy XR, Topiragen, and Trokendi XR.

    With your history, you know what road the generic may take you down.

    I’m sure you won’t be sorry to say “good-bye” to Dilantin.

    Best of luck.

    I’ll check in tonight.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 7, 2019 @ 8:21 AM

    • Goodmorning Phylis 😊. Well it appears YOU MAY BE RIGHT!!!!!!! This is the first weekend I’ve been on “topiramate” 25mgs. I’m not sure if it’s the infection however I am already ready to JUMP SHIP!! This is the scariest feeling in the world and the WORST HEADACHE EVER!!!!! I’ve always been one to push myself, husband and children but I swear I think If this is what 25mgs does then maybe it’s time to reconsider my options. Thank you and please have a very good day today and please take care of yourself 😊🙏🏼🦅😇😘

      Liked by 1 person

      Comment by Kathy S.B — December 15, 2019 @ 2:13 PM

  19. Ya I thought that too myself!! Apparently what I am experiencing is a focal seizure. I couldn’t feel a couple of things he touched on my body and this is also supposed to get rid of the hyponatremia as well. He hasn’t heard of Qudexy XR yet. So I’ll address that with the pharmacist before I receive my medications today. Also he’s VERY VERY SLOWLY WEANING ME OFF OF THE DILANTIN AND TEGRETOL AS WELL!! Thank god 🙏🏼🦅😇😘

    Liked by 1 person

    Comment by Kathy S.B — December 7, 2019 @ 8:30 AM

  20. Wow , sounds promising .. til read the side effects .. ie rage , outburst , insomnia, for a sec , thought was reading another drug { keppra } , So far Keppra , been good , just as long i take my vitamins

    Liked by 2 people

    Comment by Cathy Flowers — December 7, 2019 @ 9:22 AM

  21. Be sure you take B Complex Vitamins. They are, without a question, the star of all vitamins. In sufficient quantities, especially those that combine B6, B12, folic acid, thiamine and biotin, they are vital to the production of numerous brain chemicals.

    Like the neurotransmitters which serve as the chemical message bearers between your nervous system and brain.

    The most efficient way to make use of this “brain food,” is to take it in a B complex form, since this contains all the vitamins in the B group. And when combined, they work synergistically together.

    Take a single B-50 B complex tablet twice a day with food.

    Each dose should contain 50 micrograms of vitamin B12 and biotin, 400 micrograms of folic acid, and 50 milligrams each of all the other B vitamins.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 7, 2019 @ 9:32 AM

    • Oh ya I meant to tell you Phylis my family doctor asked me why I was on folic acid in my last visit. I looked at her and told her “it’s brainfood! I thought you would know that”. She looked at me and kind of smiled then agreed with me. But I was already prescribed folic acid.

      Liked by 1 person

      Comment by Kathy S.B — December 8, 2019 @ 11:47 AM

  22. Ok so I’m wondering I’m on folic acid, iron, vitamin D, calcium, magnesium right now. I wonder if it’s safe to take a B complex vitamin as well? Also I found out today the prescription is for TOPIRAMATE not TOPOMAX!! So I’m going to call my neurologist on Monday and see if he could change that before I even start. Because I don’t want to end up in the same position as I did with the generic tegretol and Dilantin. But what caught me was the clobazam. I was down to 10mgs/daily now he wants me to go back up to 20mgs/daily yet clobazam is also infamous for hyponatremia!! I don’t understand!! I wish I could just take ONE MULTI VITAMN instead of all of these vitamins as well.

    Liked by 1 person

    Comment by Kathy S.B — December 7, 2019 @ 8:53 PM

    • You CAN take one multi-vitamin as long as you check the contents. Perhaps your pharmacist can steer you in the right direction.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 7, 2019 @ 9:52 PM

      • Goodevening Phylis 😊. Yes your very right. NOW JUST TO FIND A PHARMACIST that WILL TAKE THE TIME to help me. In my defence I have asked my pharmacist and he had no clue as to which vitamin I could take. So once again I’m on the hunt for the best multi vitamin on my own. Which in all honesty is not such a bad idea anyways. Then I know for sure what it is I am getting! Turns out it’s the dosages of certain vitamins that throws my pharmacist off. But I am in COMPLETELY AGREE with you about the B 50 B Complex Vitamin. Thank you 😘

        Liked by 1 person

        Comment by Kathy S.B — December 7, 2019 @ 9:59 PM

      • Well, I tried to research ONE multi-vitamin for seizures/epilepsy and only came up with a long list like the one I have.

        So, I’m sorry to say, I don’t have answer.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 7, 2019 @ 10:06 PM

      • Lol ya me too!! So for right now I’ll stick with what I have and in the mean time take the vitamin B 12 as well. Thank you 😊

        Liked by 1 person

        Comment by Kathy S.B — December 7, 2019 @ 10:18 PM

      • See Michael’s helpful comments below.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 8, 2019 @ 10:34 AM

      • That’s alright Phylis 😘 that’s how we learn 😘😘🦅🦅🦅🦅🦅

        Liked by 1 person

        Comment by Kathy S.B — December 7, 2019 @ 10:27 PM

  23. Oh ya one more thing!!!!! When I phoned my pharmacist today she said that apparently I’m on some other generic medications!! And couldn’t figure out why the Dilantin and tegretol were changed to brand name and the others weren’t?! I told her “then that must be why I’m still getting rashes on the top of my feet and what I thought were bruises on my knees are actually rashes as well!!”. I guess my husband tries to stop me from scratching myself in the middle of the night and all this time I thought they were bruises and their not!!”. Plus I have to have the prescription changed to read “topomax”, but who do I call for that? Lol. And he’s never even heard of XCOPRI before either!! Seems to me we here in Canada ARE VERY VERY BEHIND IN OUR MEDICATIONS AND TREATMENTS OF EPILEPSY!! That is NOT GOOD AT ALL!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — December 7, 2019 @ 9:06 PM

    • Hey, if you manage to get the name brand, in your case, that’s a victory! If the generic is working without you knowing then… (???)

      If you want the name brand instead of the generic, you must insist that your doc write DO NOT SUBSTITUTE on the scipt itself.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 7, 2019 @ 9:57 PM

      • Yes I was going to do that on Monday. I just wasn’t sure which doctor 🤔 to call. On one hand I feel maybe the neurologist, but something tells me I won’t get very far that way. So it leaves thinking maybe it would be best to just go back to my family doctor once again. SHUCKS!! This DARN GENERIC MEDICATION IS THE PITS!!!!!!! Lol or I could ask for Benadryl or which kind of Benadryl works best lol 😂. I have to agree with my husband this time around though after what I went through for the past 5 years!! It’s taking a toll on my body and my head. Thank you for all of you caring Phylis I WILL ALWAYS GREATLY APPRECIATE AND THANK YOU FOR EVERYTHING!!!!!!! 😊🙏🏼🦅😇😘😘😘😘😘. I hope the tree comes up SOON!! 😘😘🙏🏼🙏🏼🦅🦅😇😇😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — December 7, 2019 @ 10:06 PM

  24. Maybe your family doctor CAN help you in this avenue.

    Ya know, specialists are called that, because they specialize in ONE thing.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — December 7, 2019 @ 10:11 PM

  25. YES YOU ARE VERY RIGHT THERE!!!!!!! He did bring up the keppra or the generic version of it. I finally told him (after my husband said “no damn way”!!) that when he’s considering putting other people of certain medications it may be in his best interest to probably become a little bit more in tune with the people he’s prescribing them too!! Because for my people “SUICIDE AND RAGE” ARE ISSUES SOME OF MY PEOPLE STRUGGLE WITH DAILY!! After SUICIDE IS ONE OF THE HIGHEST ISSUES THEN COMES RHE ANGER AND RAGE!!!!!!!”. Both of which even we’ve had to deal with in amongst our own family and friends or children’s friends. It’s always best to lean on the more careful side sometimes because not everyone takes the time to properly learn the side affects of the medications given to us. 😘🙏🏼🦅😇💗😘😘

    Liked by 1 person

    Comment by Kathy S.B — December 7, 2019 @ 10:26 PM

  26. Following up on a comment from Kathy. I agree that taking such supplements as folic acid, iron, vitamin D, calcium, and magnesium might be indicated BUT it is not straightforward.

    A Calcium compound for example ( preferably not Calcium Carbonate) should not be taken as the same time as many foods….see….

    https://www.bonejoint.net/blog/did-you-know-that-certain-foods-block-calcium-absorption/

    Iron compounds should not normally be taken as the same time as medications, or other supplements.

    Magnesium compounds should not be taken at the same time as Calcium compounds.

    Even Folic acid in doses higher than 1,000 mcg daily, can lead to undesirable side effects especially if you also eat foods fortified with folic acid such as some cereals, breads, pastas and rice.

    Frankly most additives consumed are not needed or not absorbed. But some of us actually need some additives some of the time. Luckily firms like Costco among others sell additives at fairly low prices. I admit I may not need the Costco brand fish oil, magnesium, Vitamin B12 and Vitamin D that I take regularly but they only cost a few dollars a month …. so called top line equivalents would cost hundreds.

    Liked by 2 people

    Comment by ichael H — December 7, 2019 @ 11:31 PM

  27. Goodmorning Phylis 😊. Yes I completely agree with Michael. It just seems to me it would be cheaper and easier if I just purchased one multivitamin that’s all. Thank you Michael and Phylis 😊😘. Please have a very good day today and take care of yourselves 😊🙏🏼🦅😇😘😘😘😘😘

    Liked by 1 person

    Comment by Kathy S.B — December 8, 2019 @ 10:37 AM

  28. I gave up long ago,It’s been since1964. and 4 mths is longest I’ve ever gone. I’ve had VNS,2001 brain surgery in 1982. life sux. meds would cost me thousands without my insurance.I can’t take generic.

    Liked by 2 people

    Comment by Belinda — December 13, 2019 @ 12:21 PM

    • You must at least have pretty good insurance.

      Like

      Comment by Phylis Feiner Johnson — December 13, 2019 @ 1:59 PM

      • The funny part is (as I mentioned before) here in Canada we are being switched to “BIOLOGICS” and even though my husband pays into insurance through his workplace some of our/my medications still are not covered even though my family doctor wrote “no substitutions” on my medications. So I am PRAYING THAT WILL BE CHANGED!! Possibly tomorrow, but who knows. For now I tough it out.

        Liked by 1 person

        Comment by Kathy S.B — December 15, 2019 @ 8:07 PM

    • I have problems with generic as well!! I am JUST PRAYING THIS TIME I CAN OVERCOME IT!!!!!!! 🙏🏼🦅😇💗

      Liked by 1 person

      Comment by Kathy S.B — December 15, 2019 @ 8:04 PM

      • I always thought that Biologics meant something that was biologically available naturally, which was a good thing.

        Now, thanks to you, I’ve read that “natural biologics can be as potent as manufactured drugs”

        I’m totally confused.

        https://www.medicinenet.com/biologics_biologic_drug_class/article.htm#what_is_a_biologic_drug_biologics

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 15, 2019 @ 8:37 PM

      • Goodevening Phylis. I apologize for that!! I have to agree with you. But by the sounds of it people with Chroans, and Arthritis and diabetes as well as (DON’T QUOTE ME) but I think epileptics maybe the people who get the worst end of that deal!! It just really upset me because my grandma had Chroans and colitis is also runs deep in my people!! So it’s always been a hidden fear for me and my family and children. Almost feels as though our world needs to get their priorities straight!!

        Liked by 1 person

        Comment by Kathy S.B — December 15, 2019 @ 9:00 PM

      • Unfortunately Colitis gallops in my family. Including yours truly.

        My grandmother died of colon cancer, so I have to be vigilant with colonoscopies.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — December 16, 2019 @ 9:44 AM

      • Yes mine too!!!!!!! 😢😢😢😢😢. I’m so sorry to hear that Phylis! I always get tested for it as well because of my grandma and I have to admit the stomachaches sent me into a bit of a panic!! I was looking into the medication the doctor is trying to change me too and I have to admit it makes me nervous!! I was told that the stomachaches, headaches, my liver, numbness and eye sight were supposed to get better on this medication. But lastnight was the first time in over 1.25 years I ever felt as though I was actually fighting a seizure!!!!!!! Scared the crap out of me!

        Liked by 1 person

        Comment by Kathy S.B — December 16, 2019 @ 10:00 AM

      • Give it time, Kathy.

        Like

        Comment by Phylis Feiner Johnson — December 16, 2019 @ 12:03 PM

  29. Gosh I hate to be the bearer of bad news Phylis. I’ve been told to stop the medication until I finish my antibiotics. Lol or until the neurologist’s spider bite goes away. For a few days. BUT I DO HAVE TO SAY “YES!! I’m pretty sure it’s because it’s the fact that it’s generic version!! Or maybe it’s simply the wrong type of medication I don’t know”.

    Liked by 1 person

    Comment by Kathy S.B — December 16, 2019 @ 1:43 PM

  30. Well, I don’t know either. But, if it were me, I’d insist on the name brand and see if that makes a difference.

    Sorry you’re going through all this, Kathy!

    Like

    Comment by Phylis Feiner Johnson — December 16, 2019 @ 1:49 PM

  31. It’s not you fault Phylis. Please don’t ever be sorry!!!!! I’m thinking once I get over this infection maybe I’ll have a talk with my pharmacist and see if (between the two of us) we can figure something out or even if there’s a LESS POTENT MEDICATION THAT MAY HELP!! It could be the infection and antibiotics. However my body will only allow me to fight one battle at a time. I’ll get through this and then I’ll deal with that. 🙏🏼🦅😇💞😘

    Liked by 1 person

    Comment by Kathy S.B — December 16, 2019 @ 8:37 PM

  32. See today’s Washington,Post online for a story about people who intentionally target the seizure-prone with apps designed to cause seizures.

    Liked by 1 person

    Comment by HoDo — December 17, 2019 @ 6:57 AM

  33. YIKES!!!!!!! Makes me wonder if there’s anything out there that doesn’t or isn’t so scary for people who don’t normally take anything but their medication? I think it maybe best to go and sit with the pharmacist one on one and see if there’s something (or a medication) we can both agree on that won’t have such a HUGE IMPACT on my head or body? Maybe it is brand name and extended release tablets. Or a completely different medication. I will admit ITS SO NICE TO BE ABLE TO FEEL MY FOOT AGAIN!!!!! But the headaches are something else!

    Liked by 1 person

    Comment by Kathy S.B — December 17, 2019 @ 9:51 AM


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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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