Epilepsy Talk

What Part of Your Epilepsy Do You Hate Most? | June 14, 2017

You mind find my answer trite: But I HATE falling down and walking into glass doors, walls, anything you can think of.

And my special talent is falling UP stairs.

My legs are a mess, I’m limping along, but refuse to give up.

Compared to others, I know I’m very lucky, but the concussions really stink.

And the anxiety never goes away.

 

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115 Comments »

  1. i hate it when people think i am just making having a seizure so that i can have people feel sorry for me

    Like

    Comment by pooterbear — June 14, 2017 @ 3:21 PM

    • People feeling sorry for you — whether they are, or you think they are — is truly the bottom of the barrel.

      Like

      Comment by Phylis Feiner Johnson — June 14, 2017 @ 5:24 PM

    • I get told that too it upsets me

      Like

      Comment by Tyesha Wolfe — July 24, 2017 @ 7:19 PM

      • I can certainly see why. 😦

        Like

        Comment by Phylis Feiner Johnson — July 24, 2017 @ 8:28 PM

      • Don’t these stupid folk realise that WE don’t know what we look like when we have a seizure because we are the only people who can’t see ourselves when we are having one!! That would make it very hard to “fake” even should we want to for some peculiar reason!!!! Also, I can think of a lot easier ways to get sympathy from others if we were desperate for it!!

        Like

        Comment by Margaret — July 25, 2017 @ 3:56 AM

      • You rock, Margaret!

        No one could have said it better.

        Like

        Comment by Phylis Feiner Johnson — July 25, 2017 @ 8:29 AM

      • i hate it when people looked at me and say don’t you remember and i tell them no

        Like

        Comment by pooterbear — July 25, 2017 @ 7:39 PM

      • Fake it! Just greet them without saying their name.

        Memory Tips You (Hopefully) Won’t Forget!

        https://epilepsytalk.com/2014/02/09/memory-tips-you-hopefully-wont-forget/

        Like

        Comment by Phylis Feiner Johnson — July 26, 2017 @ 8:00 AM

      • On the memory thread – when people look at you and say “don’t you remember”, if it’s about someone’s name, as Phylis said, you can either totally fake it, OR you can try this one; you can say – “I’m so sorry, I can’t remember your name” – when they say it’s “John” – or whatever – you say, “of course, I didn’t forget it was John, I meant your surname – or the reverse if they give you their surname!! I found that worked quite often!!!

        Like

        Comment by Margaret — July 26, 2017 @ 11:17 AM

      • GREAT idea. Next time, I’ll try that. (I called my neighbor Tony, instead of Terry!)

        Like

        Comment by Phylis Feiner Johnson — July 26, 2017 @ 11:51 AM

  2. I hate the underlying after effects that can occur after seizures. (Postictal Psychosis, depression, anxiety, etc).

    Hi Phyllis,

    I was wondering if you have created any articles or research on Postictal Psychosis. I was previously told about it last year after my run in with it. Of course I am still running into it now ever since. I want to try and help educate our community more about the after effects of seizures with more definitive information about it and not just my own experience with it.

    Thank you always for your help in educating our community.

    Thank you,

    Joseph Laxamana
    raveni79@hotmail.com
    (808) 391-1894

    Like

    Comment by Joseph I Laxamana — June 14, 2017 @ 3:42 PM

  3. i hate the side effects of my medication and my fear of changing to another in case its as bad or worse

    Like

    Comment by phil — June 14, 2017 @ 3:47 PM

    • It’s sort of being stuck between the devil you know and the devil you don’t know. But they’re ALL devils. 😦

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 14, 2017 @ 5:25 PM

    • I hate the side effects of medication so I am taking CBD oil. My problem is my epileptologist just believes in drugs. He has me on Keppra 1000 mg. but I reduced to 300 mg. and CBD oil. I will be so glad when insurance pays for it because it is expensive. Mary Jane

      Liked by 1 person

      Comment by Mary Jane Levell — June 14, 2017 @ 5:57 PM

  4. Not being able to drive for 3 months. This is worse than the seizures.

    Like

    Comment by Kate Jacques — June 14, 2017 @ 4:09 PM

    • I’m not able to drive for 6 months and have to apply for a new license…. Agree it can be worse than the seizure….

      Like

      Comment by deborah — June 14, 2017 @ 4:18 PM

    • I’m in the middle of the not being able to drive phase. I’m hoping to be able to drive in the fall. I don’t like losing my independence, and I’m going stir-crazy. It’s beautiful weather, I can see my car out the window, but I have to depend on my husband to take me anywhere – after he comes home from work.

      Like

      Comment by Sherry Smith West — June 16, 2017 @ 11:07 AM

  5. I can’t drive for 12 months after my last daytime seizure – I live in the middle of the countryside – no public transport – I HATE it!!

    Like

    Comment by Margaret — June 14, 2017 @ 4:43 PM

    • Well Margaret, you’ve got us all beat. What did you do?

      I kissed up to neighbors. Friends live too far away.

      Like

      Comment by Phylis Feiner Johnson — June 14, 2017 @ 5:28 PM

      • Sorry folks – I just realised it looks as if I forgot to join in/reply to this last chat! Although my daytime seizures are under control with my Lamictal, my nocturnal ones have now become so frequent again, and are verging on daytime, that my medics have decided once more that I can’t drive – just as if my seizures were daytime ones – and unfortunately I have to be realistic and agree with them!! Over here – and in the UK too – the ban, normally just on daytime ones, is from 12 months after your last seizure so each time you have a seizure, even at 11 months and 29 days, the ban starts all over again at 12 months – is it the same method on your side of the Atlantic? As I said, I live almost literally in the middle of nowhere and my husband has to take me absolutely everywhere – even to get my legs waxed, ladies!!!! It is causing tensions between us too, no matter how patient he tries to be – and I understand. I truly don’t know what we are going to do if things can’t be got under control!?

        Like

        Comment by Margaret — June 18, 2017 @ 7:43 AM

      • Loss of freedom stinks. It appears almost all of us have been there.

        And the tension that can follow is just like a double whammy.

        Another kind of punishment, even if not intentional.

        Like

        Comment by Phylis Feiner Johnson — June 18, 2017 @ 10:07 AM

  6. Incontinence

    Like

    Comment by Marie — June 14, 2017 @ 7:15 PM

    • Ugh. How humiliating that must be. If you don’t mind me asking, what do you do?

      (You don’t have to answer that question if it’s too personal.)

      Like

      Comment by Phylis Feiner Johnson — June 14, 2017 @ 7:26 PM

      • Sorry Marie – I meant to reply and forgot. When my seizures were at their worst – before the doctors managed to get any kind of control over them – as I said in another section of this chat, I have late onset epilepsy so was 56 when this started – I am 68 now. During the first 3 years , I had incontinence on a good few occasions – and most embarrassingly – several episodes were of the “double” version!! I was “fortunate” enough to have these in my own home – I was living alone at the time – and to be found by friends – but it was still mortifying – I wouldn’t wish it on any compos mentis adult!

        Like

        Comment by Margaret — June 18, 2017 @ 7:51 AM

      • when someone finds me down on the floor and my panties are wet from me peeing in my pants

        Like

        Comment by pooterbear — June 18, 2017 @ 8:07 PM

      • 😦 😦 😦

        Like

        Comment by Phylis Feiner Johnson — June 19, 2017 @ 9:00 AM

  7. Living with seizures for over 56 years, & since 7 months old being on AED’s, I think the BETTER question can be this,>> What 1 THING or more things do YOU LIKE, about having Epilepsy / Seizures ? I see no advantages or benefits to have seizures for over 56 years & I may never be a seizure free person before I am 6 foot under. When that happens, THAT DAY will be the best day ever, as I know then where I am going to be, and nothing will ever make a seizure happen, & I WILL be healed forever living in HEAVEN. No drugs or side effects there, just a totally healed body & BRAIN, if we have brains in HEAVEN
    .

    Like

    Comment by C D — June 14, 2017 @ 7:38 PM

  8. i hate it when people think I amy just doing the seizures to get people feel sorry for me thay think I am making it up

    Like

    Comment by pooterbear — June 14, 2017 @ 8:35 PM

    • That’s so unfair — whether they are — or you think they are. It’s rude and ignorant.

      Pardon my vindictive language. It just makes me crazy.

      The only thing that makes me crazier is people who make fun of you having a seizure.

      That’s plain unforgivable.

      Like

      Comment by Phylis Feiner Johnson — June 14, 2017 @ 9:22 PM

  9. The realization that I must have just said or done something bizarre because someone’s looking at me as if I’m insane!

    Like

    Comment by Deb — June 14, 2017 @ 9:57 PM

  10. Phyllis,
    You have built the most trust-worthy comfort zone to express our deepest concern to the chains of Epilepsy.
    Thank you for your time & dedication for sharing our lives with seizures.
    Phyllis,
    Imagine being suspected for illegal drug abuse to having grandmal seizures & handcuffed to ambulance & hospital emergency room bed for two days, until friends showed up at the hospital & DEMANDED/FORCED the hospital to release the patient ???
    Now, imagine the anticipation of another dreadful seizure coming & the helplessness to STOP the seizures & the hospital maltreatments on tracks?

    Without your informative, educational, inspiring & uplifting forum, learning to cope the ordeals of epilepsy would have been very frustrating journey.
    Learning & gaining comfort in KNOWING the effects of seizures, now you know why, some of us trust & worship your forum more than the hospitals, who handcuff patients to Emergency Room bed.
    Keep up the excellent mission.

    Like

    Comment by Gerrie — June 14, 2017 @ 10:32 PM

    • OMG, Gerrie. Was that you? Sensitive, sensible you?

      That’s too horrid even to imagine — no less conceive — that happening to you, my dear friend.

      If I can be a comfort, then a large part of my mission is realized.

      Like

      Comment by Phylis Feiner Johnson — June 15, 2017 @ 7:38 AM

  11. I hate it when people call 911 when it is unnecessary and the paramedics come and make a scene.

    Like

    Comment by Soo Ihm — June 14, 2017 @ 11:03 PM

  12. Hi been on tegretol for last four years with awful side effects struggling here and know i need to change to another med has anyone got any suggestions which one to try ..is there any one that is known to have the least side effects ..i have complex partial seizures ??

    Like

    Comment by phil — June 15, 2017 @ 4:08 PM

    • I cannot do anything other than agree with Phylis about none of us on here being doctors – it would be very dangerous of us to think otherwise but I can only comment on my own experiences. I have “late onset” epilepsy – started at age 56, out of the blue, and took 5 years to get under any kind of control. I took quite a large catalogue of AEDs without success – and with nasty side effects – before finding that Lamictal works for me. I stress “Lamictal” – as opposed to its generic form, Lamotrigine – as my GP and I found that, for some strange reason, the generic form gave me some side effects which the brand name didn’t!! I am unaware of any side effects (on me) of Lamictal except a degree of dry mouth. The only other AED which didn’t give me side effects was Topirimate (Epitomax here in France) but it, alone, didn’t control my seizures. Don’t know if this will be of any help but thought it worth contributing.
      Phil, I also completely understand your fear of changing drugs – for better the devil you know etc – my nocturnal seizures started again 2 years ago and I refuse to try anything completely new to control them as I am terrified that a new drug will stop controlling my daytime seizures – which my present Lamictal does brilliantly – and so I am only “allowing” the medics to experiment with adding “top up extras” – at the moment they are trying Topirimate – with little success!!!

      Margaret

      Like

      Comment by Margaret — June 15, 2017 @ 5:05 PM

      • Margaret, I’m on Lamictal also.

        At first it made me crazy/hyper. But when I changed my dose from bedtime to 5PM and added Klonopin, all was well.

        No side-effects and 99% seizure-free for 10+ years!

        Like

        Comment by Phylis Feiner Johnson — June 15, 2017 @ 5:14 PM

      • thanks Margaret had late onset epilepsy too at 53 will do some research on lamictal it helps to hear you have no side effects from it do you mind me asking are you on a very high dose Again thanks for taking the time to respond to me !

        Like

        Comment by phil — June 16, 2017 @ 6:10 AM

      • Hi Phil,
        No problem asking about dosage. Yes, I’m on a high high dose- maximum in fact; i.e. 500mg daily. 200mg morning and 300mg evening. Obviously built up to that from 150mg daily – which wasn’t effective enough. No side effects for me.

        Like

        Comment by Margaret — June 16, 2017 @ 6:55 AM

  13. Sorry meant to add have terrible depression from it do all aeds cause depression ?/

    Like

    Comment by phil — June 15, 2017 @ 4:09 PM

  14. Mine is the uncertainty. I’ve only had two seizures, about 2 months apart, and quickly got put on Keppra which is controlling them. But I’m always fearful of another one. And my son as well is on Keppra, so even at 24 years old, he’s still my baby boy, and I’m always afraid of him having seizures.

    Like

    Comment by Theresa Spooner — June 16, 2017 @ 10:37 AM

  15. I agree loosing the freedom to drive is frustrating. It’s been close to 2 yrs since I was allowed to drive but next month I can reapply for my licence and drive around town. I started seizures in my late adult life..

    Like

    Comment by deborah harley — June 16, 2017 @ 3:24 PM

    • You must feel sooo relieved. Just take it slowly at first.

      Like

      Comment by Phylis Feiner Johnson — June 16, 2017 @ 3:40 PM

      • I was a week away from Six months being free from seizures and reacted to something I ate which we suspect MSG and had multiple seizures. Yuck, now I need to wait another six months before applying for my restricted drivers liscense. Oh well things could be worse….

        Like

        Comment by Deborah Harley — July 12, 2017 @ 8:33 PM

      • I’m real sorry you lost the opportunity to get your license back again. And your freedom.

        But this article might be of interest to you. (Even a comfort that you’re not the only one?)

        MSG: Dangerous or Deadly?

        https://epilepsytalk.com/2009/10/08/msg-dangerous-or-deadly/

        Hope you’re feeling better now.

        Like

        Comment by Phylis Feiner Johnson — July 12, 2017 @ 8:41 PM

  16. Having just gotten a confirmed diagnosis of drug resistant intractable epilepsy I have to say the anxiety is ramped up when I have to go out in public.

    Like

    Comment by Tracy — June 17, 2017 @ 10:00 AM

  17. I hate other people’s reactions to my seizures. For instance, had one at Walmart, knocking over a display. When I became conscious, people were standing around staring, some with disapproving looks, or shaking their heads. It’s embarrassing and frustrating.

    Like

    Comment by Michele — June 17, 2017 @ 1:20 PM

  18. Never knowing when its going to hit. Trying to hide it at work meetings (which is my whole job – meeting with clients) when I’m in an altered state of consciousness for long periods of time.

    Like

    Comment by Jeannette Barber — June 17, 2017 @ 3:50 PM

  19. when people find me on the floor and my paints are wet

    Like

    Comment by pooterbear — June 18, 2017 @ 8:08 PM

  20. My seizures started in my lates 50’s. I had to quit my job and stop driving.

    Like

    Comment by Deborah Harley — June 18, 2017 @ 8:58 PM

    • That’s a double whammy.

      Losing the financial independence of working and losing the physical independence of driving.

      How frustrating!

      Like

      Comment by Phylis Feiner Johnson — June 19, 2017 @ 9:21 AM

    • i hate it when people think that I am making it up just because I want them to feel sorry for me

      Like

      Comment by pooterbear — June 19, 2017 @ 1:45 PM

  21. Thank you for writing “falling upstairs!”

    Like

    Comment by red2robi — June 19, 2017 @ 9:37 PM

  22. Falling Upstairs 😊 Is a total talent I will agree!

    Like

    Comment by red2robi — June 19, 2017 @ 9:42 PM

    • And FEW share it. Just those of us who are privileged.

      Like

      Comment by Phylis Feiner Johnson — June 19, 2017 @ 10:04 PM

      • Upstairs, downstairs, sideways – it doesn’t matter sometimes!!! Folks always look at you as if you have had “one too many”!!! My total balance is lousy since my seizures started 12 years ago.
        Margaret

        Like

        Comment by Margaret — June 20, 2017 @ 8:13 AM

  23. Margaret, I went to Physical Therapy for 1 1/2 years to improve my balance and it really worked!

    Like

    Comment by Phylis Feiner Johnson — June 20, 2017 @ 9:45 AM

    • Thank you Phylis. I’ve just discovered that my right eye is totally not “focusing” – thought to be possibly because the muscles have been damaged by the seizures and I am starting some sessions to try to retrain this. Don’t know if it will change things but anything is worth trying. It’s cover by state insurance over here so nothing to lose.

      Like

      Comment by Margaret — June 20, 2017 @ 12:51 PM

  24. Sorry – meant to say that this is thought to be the possible cause of the stumbling/bad balance.

    Like

    Comment by Margaret — June 20, 2017 @ 12:53 PM

    • Definitely. 😦

      Like

      Comment by Phylis Feiner Johnson — June 20, 2017 @ 1:03 PM

      • Thank you Phylis – am really hoping to see at least some improvment. Will let you know.

        Like

        Comment by Margaret — June 20, 2017 @ 1:12 PM

  25. Keep me posted…

    Like

    Comment by Phylis Feiner Johnson — June 20, 2017 @ 1:14 PM

    • I meant to comment back a while ago but unfortunately my seizures have been playing stupid games over this last few weeks and life gets a bit muddled up. My eye exercises haven’t had the attention they should have had because of the amount of cancelled appointments but there has been a bit of improvement nevertheless so I am going to keep on trying. Once again, Ill try to keep you posted.
      Margaret

      Like

      Comment by Margaret — July 24, 2017 @ 6:11 PM

      • Hi Margaret, I remember as a child, my mother doing eye exercises and they helped lots.

        Hope you’re feeling better and up to it soon.

        Like

        Comment by Phylis Feiner Johnson — July 24, 2017 @ 6:46 PM

  26. What I hate the most about seizure’s is that I am unconscious and I walk into traffic and taking things out of the oven without a oven mitt.

    Like

    Comment by Mary Priebe — June 25, 2017 @ 4:23 PM

    • Ouch! And please be careful, Mary. Have you considered a seizure/support dog?

      Like

      Comment by Phylis Feiner Johnson — June 25, 2017 @ 6:44 PM

      • i hate it when people just stand there and look at me after i have a seizure and tell me that i just made it up so thay would feel sorry for me

        Like

        Comment by pooterbear — June 25, 2017 @ 8:29 PM

  27. It’s the insecurity of ignorance. 😦

    Like

    Comment by Phylis Feiner Johnson — June 26, 2017 @ 9:29 AM

  28. The excruciating migraine headaches, the disorientation, being unable to drive, not being able to explain what is happening. That is really difficult.

    Like

    Comment by Jeffrey Liakos — July 12, 2017 @ 2:07 PM

    • The migraines I thankfully have never had. As for not driving, I had my license suspended for 8 months (for going into the back of the garage wall!) And not being able to explain things, I think that’s the most embarrassing for us all.

      RE: Migraines — Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy.

      And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

      There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide).

      Like

      Comment by Phylis Feiner Johnson — July 12, 2017 @ 3:48 PM

  29. Phylis Feiner Johnson, I am glad that you never have to experience the migraines. They are excruciating.

    Like

    Comment by Jeffrey Liakos — July 24, 2017 @ 1:02 PM

    • I’m grateful too. I can’t even imagine how much pain you go through.

      Like

      Comment by Phylis Feiner Johnson — July 24, 2017 @ 1:04 PM

      • I hate it when I have a seizure and people think that I am just making it up for people to feel sorry for me

        Like

        Comment by pooterbear — July 24, 2017 @ 5:11 PM

      • Or even worse if they thought you were faking it. That’s the pits. Aside from people feeling pity for you. 😦

        Like

        Comment by Phylis Feiner Johnson — July 24, 2017 @ 5:27 PM

      • so true I wish I could find away to show them how it feels so thay would know what we go through and mybe thay would stop making fun of me

        Like

        Comment by pooterbear — July 24, 2017 @ 6:21 PM

      • Sigh. Now THAT would be something, wouldn’t it?

        Like

        Comment by Phylis Feiner Johnson — July 24, 2017 @ 6:47 PM

  30. I’m sorry – this is not me joking but I can’t remember if I have commented on how much both my shorter term and my long term memory loss affect my life – I think I may have but I genuinely don’t know. If I haven’t, i would like to start a discussion thread about it as it has a massive effect on my life. Can someone let me know!!!!!

    Like

    Comment by Margaret — July 25, 2017 @ 3:43 AM

  31. I’ve been dealing with seizures since my early 50’s and I’m 61 not able to tolerate seizure medication. I’m currently taking lamictal but still deal with side effects. My memory struggles and very limited on what I can eat due to allergies and what will affect my health.

    Like

    Comment by deborah harley — July 25, 2017 @ 11:46 AM

    • I’ve been taking Lamical with great success for the past ten years. Virtually no side effects and 99% seizure free.

      I also have food allergies (no beef, lamb, pork or veal). Just fins and feathers for me.

      All that being said, my memory is in toilet I like to blame the Lamictal, whether it’s true or not. 😉

      Like

      Comment by Phylis Feiner Johnson — July 25, 2017 @ 2:01 PM

      • Lamictal – maximum dose (500mg daily) had left me seizure free for over 5 years until quite recently when nocturnal ones threw themselves back into the ring again. My specialist has put me onto additional – and increasing – doses of Epitomax (Topirimate) – now up to 100mg morning and 75mg evening to try to control those – without success so far!!! Not a happy bunny, you could say as my seizures do leave me confused and exhausted for up to 72 hours afterwards. Luckily neither of these particular meds seem to give me side effects – unlike long lists of others that my consultants and I tried in the past! Like Phylis, my memory is almost non existent – is it all down to Lamictal?? I think it is a combination of meds, seizures, damage to brain “channels” etc etc . I’m going to post a different thread about memory loss another evening when my brain is functioning better!! I’ve had a weekend of seizures so the “pathways” are a bit raggedy!!

        Like

        Comment by Margaret — July 25, 2017 @ 2:50 PM

      • I beat you to it! 🙂

        Here’s an article on Epilepsy and Memory

        https://epilepsytalk.com/2014/02/02/epilepsy-and-memory/

        Like

        Comment by Phylis Feiner Johnson — July 25, 2017 @ 4:09 PM

      • Thanks for your rely Phylis about my comment on the Lamictal and Epitomax. Have had a read of both your recommended articles on memory loss – lots of very interesting information and input from both of them. The research one had lots of good findings and comments.
        Wasn’t sure what you had “beat me to”!!

        Like

        Comment by Margaret — July 25, 2017 @ 5:34 PM

      • LOL! Never underestimate a research writer!

        Like

        Comment by Phylis Feiner Johnson — July 25, 2017 @ 5:38 PM

      • my vns has changed my life with it

        Like

        Comment by pooterbear — July 25, 2017 @ 7:26 PM

      • That’s great to hear.

        Like

        Comment by Phylis Feiner Johnson — July 26, 2017 @ 7:52 AM

    • Ironically, I take Lamictal too. And I have mega food allergies.

      I’ve been taking the Lamictal for 10+ years with 99% success.

      I’m allergic to beef, lamb, pork and veal. (Just fins and feathers for me!)

      And my memory is in the toilet. Why? I prefer to blame the Lamictal. (It’s so much easier to blame it on drugs!)

      But, here’s an article that may interest you:

      Epilepsy and Memory

      https://epilepsytalk.com/2014/02/02/epilepsy-and-memory/

      Like

      Comment by Phylis Feiner Johnson — July 25, 2017 @ 4:05 PM

      • Firstly, I’m saying sorry because I always seem to write such a long reply – I seem to be totally unable to reply in 3 or 4 lines! OK, that’s said! So, on to my usual book length reply about memory – if I can remember it!. It really is more about VERY long term “episodic” memory that I was wanting to ask others here. like lots of you, I have short and long term loss of the common kind – forgetting everyday stuff, names, words, to do’s, etc etc etc – all the aspects of memory loss mentioned in all the usual – and very important articles. What is worst of all for me though is the complete and utter “blank” I have for incredibly important events in my life – my wedding, the birth of my son, my parents themselves – the list could go on for ever. It is very hard to explain because I KNOW these things happened, I know my parents existed; I just have no memory of them as part of my life – even that doesn’t make sense to me!!!! Can any of you identify with anything like that at all?? I have lost almost all of these kind of memories from the last 40 years of my life which leaves. Since the AEDs got my seizures under control, these kind of current memories are there – but the old ones have never come back – and my specialists say they never will, that they are gone, destroyed forever. I find this incredibly difficult to deal with – but I do – as they say, you don’t have a lot of choice and there are worse things in this world.
        I would really like to hear from any of the rest of you who have this kind of memory loss – if there are any of you out there!

        Like

        Comment by Margaret — July 25, 2017 @ 5:30 PM

      • I have lost episodic memories, but in my case, I think it’s psychological. The memories and chunks of my life that I have lost are mostly traumatic ones.

        But, I hear what you’re saying and I know people have lost all recall of these memories. All they have are photos to remind them. 😦

        Like

        Comment by Phylis Feiner Johnson — July 25, 2017 @ 5:36 PM

      • Thanks again for your comment Phylis – much appreciated – will reply tomorrow – I’m on European time (nearly midnight!) and need to go to bed or I’ll stop making sense??!!

        Like

        Comment by Margaret — July 25, 2017 @ 5:44 PM

      • Understood. Nighty night.

        BTW, you always make sense! 🙂

        Like

        Comment by Phylis Feiner Johnson — July 25, 2017 @ 5:46 PM

  32. have you ever heard of a vns I have one and because of it I don’t have to take as many meds

    Like

    Comment by pooterbear — July 25, 2017 @ 12:02 PM

  33. What is VNS?

    Like

    Comment by deborah harley — July 25, 2017 @ 12:31 PM

  34. my vns has changed my life for the good

    Like

    Comment by pooterbear — July 26, 2017 @ 10:09 AM

  35. i have to wright everything down so I can remember

    Like

    Comment by pooterbear — July 26, 2017 @ 12:24 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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