Epilepsy Talk
What Part of Your Epilepsy Do You Hate Most? | May 16, 2020
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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I do know I’ve posted this before but for any new readers, this is it. For me, nothing is worse than the memory loss – both long term and short. I HATE it – I feel I’ve lost a large part of me.
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Comment by Margaret Hay — May 16, 2020 @ 12:14 PM
Hi, Margaret….I just wrote the same thing before reading your comment. I feel you, girl!
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Comment by Vivacia K. Ahwen and Rachel Robbins — May 16, 2020 @ 12:20 PM
Loss of memory can maybe be easily corrected if you know what AED’s that you are taking has a lot of METALS in those drugs, and mainly stop taking ALL AED’s & other drugs that have ALUMINUM in them. No doubt in my brain that SHARPNESS & QUICKER THINKING HAPPENS, and ALL MEMORY becomes better. It is almost like walking in a dark room or in a long hallway 100% dark & the switch is right there that turns ON, & the light shows you clearly where you are at. Same with taking any of the DRUGS with out METALS. See for yourself, & just stop taking the ALUMINUM & other METAL DRUGS. EXAMPLE of 1 AED is VIMPAT 100mg tablet. IT IS THE LEAST METAL CHEMICAL IN IT, compared to the 50, 150, 200 mgs that have MORE metals & ALUMINUM in those 3 strengths of VIMPAT, Check them all out & other AED’s & drugs on http://www.dailymed.nlm.nih.gov Like I always say THE BRAIN NEVER LIES. But remember the FDA & CDC made it illegal to sell & make ALUMINUM POTS & PANS,, but they allow any drug maker to put ALUMINUM & other metals in all drugs, and the same for foods & drinks instead of using dangerous cookware. Who is fooling who ? Look at all the INCREASES of brain health diagnosis over the past 40 years. .Don’t be fooled. METALS WILL make your thought process slow or die over time, depending how much that you allow BIG PHARMA to destroy your brain by taking their drugs.
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Comment by James D — May 16, 2020 @ 3:09 PM
My brain lies all the time. Or, rather, at unpredictable intervals. Sends one picture to one eye and a different picture to the other eye. Tells me there is an oval rose-colored A-flat disk in my path at shoulder height.
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Comment by HoDo — May 16, 2020 @ 3:41 PM
Margaret, Hi!
Maybe this link may help in some small way:
Memory Tips You (Hopefully) Won’t Forget!
https://epilepsytalk.com/2020/02/01/memory-tips-you-hopefully-wont-forget/
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 12:18 PM
Memory loss, comprehension issues, trouble word-finding, and lack of facial recognition.
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Comment by Vivacia K. Ahwen and Rachel Robbins — May 16, 2020 @ 12:19 PM
These little tips may help you with some of the things you mentioned:
WHAT’S THAT WORD?
Problem: A word, a place, or the name of something, is on the tip of your tongue, but you can’t come up with it.
Solution: Try to think of the first letter. (I often end up going through the whole alphabet, but eventually I get it.) Try to attach a rhyme to it. Or else skip it. Eventually, you’ll remember it. (Probably at 2:00 in the morning!)
I FORGOT HER NAME!
Problem: You have a hard time remembering people’s names. Who doesn’t? But if it’s your next door neighbor’s name, it’s a little embarrassing.
Solution: Take a good look at the person, repeat their name to yourself at least three times, then use it in a conversation. Or subtly fake it. Just greet them without saying their name. It’s better than calling them by the wrong name.
You might also try reading the link in Margaret’s response.
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 12:24 PM
Sorry I meant to do a thumbs up not a thumbs down
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Comment by Eve Quigley — May 16, 2020 @ 2:00 PM
Sorry to put a thumbs down I meant thumbs up
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Comment by Eve Quigley — May 16, 2020 @ 2:01 PM
You are a winner! I have so many you can laugh at going through glass. Waking thru an apartment twice naked during a seizure. The funniest one was huggy Residents, Interns, and Medical Students and my friend said I hugged only the guys! I came back and described the EEG data and my friend told them that was a partial complex seizure. My boss came in said chuckled ! That was a good one!
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Comment by Toni Robison — May 16, 2020 @ 12:41 PM
Hey, hugging is a source of energy — giving and taking! Don’t knock yourself! 🙂
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 12:59 PM
Except alas when it’s a serious source of over-stimulation and confusion.
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Comment by HoDo — May 16, 2020 @ 1:07 PM
Toni,
You’re very fortunate you’ve a good friend to protect you & explain your medical condition & fantastic boss with a very good sense humor to understand your seizures before anyone made criminal accusations of your medical hardships.
This world needs a lot of good compassionate people like your friend & your boss.
Thank you for sharing your story.
Gerrie
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Comment by BahreNegash Eritrea — May 21, 2020 @ 4:31 PM
I’ve been using my morning walks as memory training tools. On each walk, I try to remember one or two interesting sights. Began with one. It’s been six weeks, I’ve worked up to three.
What I hate most is how difficult it is to be present, rather than fretting about what might happen.
Or, no, what I hate most is explaining the condition to someone, especially to a bored medical person.
Except, no, what I hate most is when I’m on my own in the middle of a nightmare seizure.
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Comment by HoDo — May 16, 2020 @ 1:05 PM
None of them sound like fun.
But, I think your walking exercise is terrific!
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 1:16 PM
The memory enhancement walks started when passing chain-link fences with heart-attack dogs on the other side. Noise, fangs, etc. I’d want to avoid them in the future. Then there were interesting houses. Then there were gardens doing especially well. For each walk, I draw a map when I get back, with points of interest noted. A strange sort of virus diary. Yet, looking at the notations, I find I can remember most of where I’ve been.
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Comment by HoDo — May 16, 2020 @ 1:30 PM
The maps are a great idea. But, I’m sure no one, memory impaired or not, would forget those heart-attack dogs!
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 1:37 PM
I hate feeling vulnerable because of my epilepsy. Especially now that I’m alone! My main support and love, my husband died last year. I’m very grateful to be quite well controlled, but…
I am not saying this to garner sympathy. It’s just my life now.
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Comment by Eve Quigley — May 16, 2020 @ 2:08 PM
Oh Eve, I can’t imagine losing my rock and my foundation. Please accept my condolences.
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 2:12 PM
Dear Ever,
I too live alone and have for many years. It wasn’t because of a death it was divorce. There was and still is a mourning process at times even though it has been a while. This group is a great one for support.
Many times when I feel vulnerable I remind myself of something I said often while going through my divorce…
”A woman is like a tea bag. She grows stronger when put in hot water!!”
For me, this is very true!🤣 I have a son and he was young at the time. My lawyer said to me it is absolutely the wrong thing to do if you are considering messing with a mother!!
You will be fine. I know you will😊
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Comment by Janet Ranieri — May 17, 2020 @ 6:40 PM
Eve,
I’m very sorry you lost your husband.
Please accept my condolences.
I would suggest you to join some support group who may help you to overcome this difficult time. I’m sure there’re a lot people like you who need, support & care for each other to overcome adversity.
I hope you find peace in your heart, mind & soul.
Best wishes!
Gerrie
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Comment by BahreNegash Eritrea — May 21, 2020 @ 4:54 PM
The fact it they are not controlled by meds.
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Comment by Bonnie — May 16, 2020 @ 2:51 PM
Sigh. Bonnie, have you considered a VNS?
Vagus Nerve Stimulation…Is it for YOU?
https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%e2%80%a6is-it-for-you/
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 2:56 PM
I was told by a neurosurgeon at the office visit that I’m not a candidate for VNS … he burst my balloons.
But I pulled up my big girl pants and thank God every day (multiple times) that I am thankful to be alive !
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Comment by Bonnie — May 17, 2020 @ 10:14 PM
Hi Bonnie, I was told the same thing. Also from my understanding it really does not help much. It sort of helps reduce the severity of seizures but does not get rid of them
My hope is tDCS may help me. Ask your Neurologist if tDCS could help your situation. It is sort of harmless since unlike VNS where electrodes are placed in your body – tDCS just passes small amount of electrical current to your brain.
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Comment by prasadmok — May 17, 2020 @ 11:28 PM
Certainly a sense of helplessness and uncertainty. What if I have a seizure here, with these people, etc. Or, what if nobody notices?. You come out of your seizure in the middle of nowhere at the end of a bus line, and nobody had noticed.
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Comment by skolly9 — May 16, 2020 @ 2:53 PM
It’s like a dark cloud hovering over your head, waiting for the storm to hit.
Nobody understands it but you.
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 2:58 PM
I’ve always been a rabid note taker due to memory problems as a kid, long before anticonvulsants began their additional rot of the memory. Little notes in my pocket helping lead me home, reminding me of names or where I parked. I was kinda made fun of it, but it worked. Hodo, I can totally relate!
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Comment by skolly9 — May 16, 2020 @ 3:09 PM
And I’m the “Queen of Post-Its”!
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 3:13 PM
I send myself a lot of text messages. This way I have a time stamp and I can attach a picture when needed.
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Comment by Nicole Roper — May 17, 2020 @ 9:30 AM
That’s an ingenious way of remembering things!
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Comment by Phylis Feiner Johnson — May 17, 2020 @ 10:16 AM
I like that!! In fact I just started doing that as well. Lol once I knew what it was that is!!
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Comment by Kathy S.B — May 18, 2020 @ 9:12 PM
Lol I use my cellphone note app or write it on my calendars
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Comment by Kathy S.B — May 18, 2020 @ 9:11 PM
I am not worried as much about my Seizures which happen almost everyday. I fall sometimes get hurt badly or I am confused for a while after a Seizure. It’s the loss of memory and unable to recall events or inability to get the right words or names – even my niece and nephew or friends names that I hate the most. I keep grasping trying to recall names, I can see/picture them in my head but can’t recall the names. According to my neurologist it’s because of the part of my brain that was affected that has an affect on my memory.
Apparently the thought process/intelligence is not affected, but then again what difference does it make if my intelligence is not affected since memory plays an important role in what you do. Even simple things as seeing a number on one screen and flipping the screen to type that number in another is hard since I forget it by the time I flip the screen.
I don’t know if it’s the same case with others but it’s odd that I remember names and shortly after I forget them and they come back to me later on. This happens to me all the time. I try associating names with something else but then I forget this “something else” as well. Sometimes I start from A-Z all the alphabets and the names or the associations come back to me.
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Comment by prasadmok — May 16, 2020 @ 4:06 PM
Sometimes I can remember the first letter of something, then next go through the vowels, and finally, go through the A-Z process.
But that cognitive exercise doesn’t work when I’m in a conversation.
But the time I have the word/name, they’ve already moved on.
I had a friend who worked hard on this in cognitive therapy, after a car crash.
She said the work was so hard on her brain that she’d come home every night, crying.
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 4:16 PM
I was really weak when I got out of the hospital – where I was in a medically induced coma for three and a half months. I was so weak that I had to move around in a wheelchair. Took me a long time to recover. My weight was around 180 pounds before and I dropped to 115 pounds when I got out of the coma.
I was a power lifter before I was hit with epilepsy. I set up a home gym and started working out which probably helped me be sane and not think a lot about my Seizures. I had a workout partner who was helping me out when I have Seizures during workouts. Unfortunately because of the Coronavirus we don’t work out together anymore and had to stop working out. Not sure when we get out this virus so we can get back to working out again. Working out keeps my mind off my Seizures. All I do these days is work out on a stationary bike at home 😦
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Comment by prasadmok — May 16, 2020 @ 10:06 PM
Three and a half months in a coma. Wow! I was just in a coma for five days (because I went into status and had two heart attacks) and I was a wreck.
And trust me, I was no power lifter.
I can’t imagine how awful that must be for you Prasadmok, especially not having your workout partner to get you through this mess.
I have a Physical Therapist that I now work out with on FaceTime because of the Coronavirus. Is that a possibility for you?
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 10:51 PM
Wow!! I like that Phylis!😃
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Comment by Kathy S.B — May 18, 2020 @ 9:25 PM
I COMPLETELY UNDERSTAND!!!!! I had a friend to whom I did everything with as well!!!!!!! At some point I think we just DECLARED EACH OTHERS FAMILIES “OUR OWN COHORT FAMILIES”!!!!!!! For friendship, married and mother sake!!!!!!! Here in Alberta we were allowed to have one other family we could be with and do things with. Her, her husband and children were ours as we are theirs. My mother inlaw is pretty much LIVING WITH US (RIGHT NEXT DOOR) anyways.
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Comment by Kathy S.B — May 18, 2020 @ 9:24 PM
I’m like that too Prasadmok 😊. Lol in fact I changed from the actual workouts (with weights and push ups and sit ups) to a cycle that actually lays on the floor and I sit on it. Then I just made myself start lifting out boxes from my basement and going through them, to building shelves in my basement, to do my yard, and cleaning my house. Now back to my basement!! I have 13 slightly steep stairs to my basement and I have to keep hauling my HUGE POSTS up and down the stairs to insure I have the proper length before building the shelving unit!! I cut my posts outside (too much debris for my basement), then cutting my plywood!! It hasn’t been easy but even one a day eventually everything gets done and I know NOT TO TRY IF I HAVE HAD ANY SEIZURES for a week!!!!!!! Hence why it’s taken so long to build them! Lol plus I don’t want to fall with posts, plywood and 2×4’s down my stairs either!! Lol 😂. But the moral to the story is “the rabbit doesn’t always win the race 😊. The turtle does too (very slowly, but regardless it still wins) and I have nothing but time 😊. It’s called “FAITH AND TRUST AND BELIEVE IN YOURSELF AND YOU CAN DO WHATEVER YOU WANT!! Just be PATIENT AND KEEP TRYING!! 😊🙏🏼🦅😇💕
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Comment by Kathy S.B — May 19, 2020 @ 10:44 AM
Hi Kathy, It’s great that you are back to your workouts. I am sure it gives you a high like it does for me. Keeps my mind off my condition – Seizures. I am nowhere close to where I was before, but I keep trying. I used to work out at worlds gym and seeing those big guys at the Gym and how much they can lift used to pump me up. Since I am not allowed to drive, I set up a “home gym” in the garage with a rack, barbells, dumbells and so on so I can work out.
I do have Seizures during my workouts, I take a little break and go back to lifting again. I have a workout partner who helps me when I have Seizures. Unfortunately, as I mentioned in my earlier posts due to Coronavirus we don’t workout together so I had to give up on squats and lift light weights on other lifts. Having a workout partner helps since we can pump each other up. Instead of squats now I use my daughter’s Stationary bike so I can at least workout my legs a bit.
I am proud of my girls and looking at how well they do keeps me pumped up and going as well. I am bragging but here’s my daughter who keeps me going – https://www.mercurynews.com/2018/05/30/anna-mokkapati-loses-shoe-wins-ccs-title/
https://www.tka.org/cf_news/view.cfm?newsid=1299
My older daughter is into Frisbee and their team won state championships.
Keep doing what you are now. This gives us the strength and confidence that we can take on any hurdles that come our way.
Go for it. Nothing can stop us from what we want to do !! 🙂
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Comment by prasadmok — May 19, 2020 @ 11:48 AM
Goodevening Prasadmok 😊 thank you very much 😊🙏🏼🦅😊. Yes as long as we keep trying and we don’t give up we can still and will always be able to be active!! Lol I just find it takes a bit more of “SELF TALK AND SELF PUSHING” or not giving up that helps me more than anyone will ever realize!! It’s nice to know we have eachother on this crazy journey of life we’re all in now. Thank you so much for the support I greatly appreciate you, Phylis and everyone on “Epilepsy Talk” 😊🙏🏼🦅😇💕
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Comment by Kathy S.B — May 24, 2020 @ 1:01 AM
I WOULD BE SO PROUD OF HER AS WELL PRASADMOK!!!!! Please tell her “CONGRATULATIONS 😃” form me 😊🙏🏼🦅😇💕
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Comment by Kathy S.B — May 24, 2020 @ 11:01 PM
I remember always teaching myself a sentence or saying to ensure I could remember it in the future. I.e. “MANY (mercury), VERY (Venus), early (earth), men (mars), jumped (Jupiter), straight (Saturn), up (Uranus), near (Neptune), Pluto (the what used to be farthest planet from earth!! But now we hear there’s a new one with no name yet).
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Comment by Kathy S.B — May 18, 2020 @ 9:18 PM
The worst part is NOT KNOWING WHEN OR WHERE THE NEXT ONE WILL HAPPEN. I just had one last Monday and after not having one for like 3.5 months, it was a relief to have one because now i know the next one will not happen for at least a couple of weeks. I used to have them monthly, but know that I’ve retired it’s more like 2-3 months that i’ll have one. The longer i go without having one the more i become relaxed and become off guard at times and forget about the emergency procedures i try to do when one happens. Like forgetting my emergency pills when i go outside the house. Other times I’ll be worried to the point where i won’t do things i should just for fear if i have one.
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Comment by Zolt — May 16, 2020 @ 7:37 PM
That happened to me too!! But my last seizure was 19 months ago!!!!! I seem to be having problems getting a re-fill on one of my medications though. Yet I am not allowed to go and see my doctor and I did contact him and his office and my pharmacist, but I’ve been without it now for 4 nights unless I go to emergency!! And I was told by my doctor “STAY AWAY!!!!!!!”
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Comment by Kathy S.B — May 18, 2020 @ 9:28 PM
Zolt,
What emergency pills are available out there to take & stop or prevent oncoming seizure, besides the regular prescription drugs we take to helplessly control our seizures?
It would be wonderful to know that I can carry around my rescue pills to stop or reduce the incoming seizures in progress, before I end up knocked out unconscious & seizing.
Thank you for sharing the information.
Gerrie
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Comment by BahreNegash Eritrea — May 20, 2020 @ 4:53 AM
Some people have been using Ativan or Klonpin tablets or wafers, placed under the tongue for rescue from seizure activity — which is an excellent way to go.
Then there’s Diastat which is now available in a liquid oral form that comes in a syringe and goes right into the cheek of the mouth.
Also, Versed (Midazolam) and Ativan have been approved as antiepileptic nasal sprays. Plus, Versed can be inserted in the side of the cheek.
The way they work is by crossing the nasal mucosa and the blood brain barrier, providing rapid relief for people as they feel a seizure coming on. Or if someone is in the midst of a cluster of seizures.
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Comment by Phylis Feiner Johnson — May 20, 2020 @ 10:01 AM
I seem to remember that both Versed (which I love!) and Ativan are highly addictive, so care is needed.
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Comment by HoDo — May 20, 2020 @ 11:14 AM
Hi Phylis,
Do Ativan, Klonopin help prevent oncoming Seizures ? I can sense I am about to have a Seizure and it would really help me during my workouts. These seem like antiepileptic drugs and I don’t know if they have immediate effect.
I am not sure I want use Versed to inject something into my cheek 🙂
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Comment by prasadmok — May 20, 2020 @ 12:15 PM
Why don’t you try them once and see how quickly they resolve a seizure?
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Comment by Phylis Feiner Johnson — May 20, 2020 @ 12:21 PM
Hi Phylis, Thank you for your response. I will consult my neurologist before I take these to make sure that they have no adverse interaction with the drugs I am currently taking.
I am already on very high dosage of drugs and they are not really helping me since I have Seizures almost every day. I consider myself lucky if I don’t have a Seizure 3 days in a row.
My current dosage every day is
3000 mg of keppra (2 in the morning just before my workout and 2 in the evening – 750 mg each)
500mg of lamotrigine (2 in the morning and 3 in the evening – 100 mg each)
60mg of Phenobarbital ( 1 in the morning and 1 in the evening – 30 mg each)
I believe drugs have very little effect on some people and unfortunately I fall into that category.
My best hope right now is tDCS.
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Comment by prasadmok — May 20, 2020 @ 12:46 PM
Oh Zolt, I’m so sorry. I’m sorry that you had a seizure …and I’m sorry that you constantly have to be “on guard.”
That’s a horrible thing to go through, whether it’s every 3.5 months, or every couple of weeks.
It’s the waiting that stinks. Just when you thought you were safe…
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 8:02 PM
Phylis,
Thanks for sharing the information.
I need to start taking some of these potential relief for oncoming seizures in progress.
Having something to hold on too in case of urgent need to stop my seizures is a relief from the total concern, stress & anxiety I got to live with everyday.
Anything is better than feeling helpless to stop the nightmare of oncoming seizure.
Gerrie
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Comment by BahreNegash Eritrea — May 21, 2020 @ 5:41 PM
What I hate the most is walking into things and finding bruises and not having a clue how I got them. Not to mention the many times I found myself somewhere that I had no intention of going to, or how I got there or, for that matter, why I went. At least I got an answer for that as I wondered how I could possibly get across town and not get run over by a truck. My Epileptologist told me it was called Focal Retrograde Amnesia. and it happens for me post ictally so I may have known why, but the amnesia after the seizure wiped it all out.
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Comment by Donna Jones — May 16, 2020 @ 8:08 PM
Oh Donna. At least I walk into things and then discover (after a few lumps and bumps, or a concussion or two) WHY I’m there.
But to not know where or why you’re somewhere, must be just terrifying.
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 8:14 PM
It’s extremely terrifying. I somehow ended up at somebody’s door one day, but I had no idea what I was doing there.
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Comment by Donna Jones — May 16, 2020 @ 8:19 PM
I bet they were as surprised as you. Scary.
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Comment by Phylis Feiner Johnson — May 16, 2020 @ 8:22 PM
I am so sorry to hear that!!!!!
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Comment by Kathy S.B — May 18, 2020 @ 9:30 PM
This video – https://www.youtube.com/watch?v=PHw7T2sjQlc on youtube motivates me when I bike on the stationary bike. I can’t believe these bikers – some of them biking 69 miles/hour. It’s worth watching to get motivated.
I thought of committing suicide a number of times when I got out of the hospital given my situation. I got over it after a while. Working out helps. I used to work out with my friend at home and walk the days I don’t work out. I put on a helmet, knee, elbow pads and gloves when I go for a walk. I look like a roller blader. Couple of times people asked me I if lost my roller blades 🙂
My Seizures happen in my left leg. Fortunately for me I can sense them and I lie down flat on the ground and take the Seizure. Folks walking by see my Seizure and try to help me. Sometimes somebody driving by stop their car and come by to see if I am Okay. A couple of times they called 911 and ambulance came by and I had to tell them I am okay and nothing to worry about.
I don’t go out on walks anymore. I have enough issues to deal with and don’t want to end up with yet another health issue – Coronavirus.
My neurologist got funding from Stanford to do a trial tDCS and see if it helps. Unfortunately due to Coronavirus Stanford is not allowing any trials now. My hope is that tDCS would help reduce Seizure frequency. The device itself is small and you can take it hit home and use it. Have to wait and see when Stanford will allow this trial.
I will let you and others in this forum know if tDCS helps. Maybe some other folks may benefit from it. Just a caution – tDCS devices are available online but please don’t buy them without consulting with your Neurologist. They have to be calibrated to send appropriate current and the sensors placed at different angles based on which part of the brain is affected. Also not everybody may benefit from these devices.
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Comment by prasadmok — May 16, 2020 @ 11:43 PM
Thank you so much for your insights and sharing all that you’re going through with us.
And also about the tDCS trial. I hope the opportunity comes and that you can profit from it with less seizures.
I wish you the best.
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Comment by Phylis Feiner Johnson — May 17, 2020 @ 10:32 AM
May I please ask what a “tDCS” is? Thank you Prasadmok 🙏🏼🦅😊💗
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Comment by Kathy S.B — May 18, 2020 @ 9:32 PM
It’s Transcranial Direct Current Stimulation. You can read more about this at https://www.hopkinsmedicine.org/psychiatry/specialty_areas/brain_stimulation/tdcs.html and https://thebrainstimulator.net/what-is-tdcs/
Here’s what my Neurologist wants to try and see if it helps.
“I have written the protocol using the ActivaDose device.
Also the fancier Soterix Medical device.
The Philips Neuro stimulator I was going to use went out of business, introducing yet more delays!
But please don’t use these devices on your own.
What is safe for the average person may not be for someone with epilepsy.
The research study should be approved within 2 months.
You will likely be my first patient.
If tDCS does not work, I will recommend another round of magnetic stimulation.”
I was given a different magnetic simulation a while back at Stanford but it did not reduce my Seizures.
My neurologist wants to try this device. Apparently it helped some folks. I trust Dr Fisher – my neurologist – he is well known and has been researching epilepsy for a number of years.
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Comment by prasadmok — May 18, 2020 @ 9:48 PM
WOW!! I COMMEND YOU! And I SINCERELY KNOW WHERE YOUR COMING FROM!!!!! I just make myself do things too. Afraid if I stop I may not start again sometimes
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Comment by Kathy S.B — May 18, 2020 @ 9:35 PM
Hopefully AI will come up with a solution.
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Comment by prasadmok — May 18, 2020 @ 9:52 PM
I’ve always tried to enjoy the independent spectrum of life…until..epilepsy struck. I don’t like having to ask others to take time out of their day to help me complete my daily task. Examples are giving me a ride to the grocery store, taking me to a doctors appointment, or even sometimes having to ask one of my children to stay home for 10 more minutes just so I’m able to take a “safe” shower. I’ve learned to humble myself and appreciate all of the help that I can get, however.
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Comment by Nicole Roper — May 17, 2020 @ 9:54 AM
It IS humbling and even embarrassing to depend upon others. And the loss of freedom is staggering.
Things you used to take for granted, like going to the grocery, or to the pharmacy.
However, it’s important also that you stay safe and know your limits. Especially when in a potentially dangerous position.
You are smart to accept the help of others, and to appreciate it.
I know that’s not easy.
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Comment by Phylis Feiner Johnson — May 17, 2020 @ 10:26 AM
You are so right, Nicole and Phyllis. My most humbling time was having to ask my husband to move back to Edinburgh from his beloved cottage in the French countryside where we had lived for 20 years, all because my epilepsy – you can’t live in the middle of the French countryside without a driving license – it turns into a prison when you depend on others for almost everything you need/want to do on a daily basis. It was turning into a prison for my husband as well. He didn’t feel able to leave me alone to go and do HIS things either. At least here, in the city, I have buses – on good days – and lots of friends who can come round for a chat.
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Comment by Margaret Hay — May 17, 2020 @ 10:37 AM
I’m sorry I did not mean to hit the thumbs down, I meant to hit the thumbs up!!
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Comment by Janet Ranieri — May 17, 2020 @ 7:15 PM
You know Nicole there are times even MY HUSBAND simply just has to come into the washroom with me while I shower too!! Incase I have a seizure in the shower (which has happened more than once) even my oldest daughter had to break into my washroom to get me out because I fell in the shower and burnt myself when I hit the water tap during my fall!! I also fell in our tub during a nice soak one night. I have a VERY HUGE DEEP OLD TUB (WE JUST LOVE IT!!) 😊. My husband actually realized I was having a seizure and physically pulled me out of the tub!! Poor guy he said I just went under the water and net came up!!!!!!! So yes it is very scarey, but again I just have to keep trying I have no choice!! Be well my friend 😊🙏🏼🦅💕
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Comment by Kathy S.B — May 19, 2020 @ 10:53 AM
Hi all. I can sure relate to so much of what you have written in what you hate the most about your epilepsy. I’m grateful that I can just be able to do stuff – I really am. However, if you notice the time of this post it really is a peculiar time for a priest to be posting: Sunday morning. I am volunteering at a church and they have asked me to participate in the “virtual” church services. (Many of them are pre-recorded.) When I watch them, I simply cannot believe how slooooooowly that I read. Frankly, I am embarrassed. Is it medications? Is it the multiple surgeries? Is it the hundreds of tonic clonic seizures? Is it these that make me so slow? It must be almost painful for people to try to listen to; it just drags along. Ugh. Well, I know I am safe to share here about my frustrations. Please take it for what it is – a very frustrated priest trying to get back into his vocation. Thanks for listening.
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Comment by George Choyce — May 17, 2020 @ 10:57 AM
Hi George, From what I know Seizures definitely have an effect on reading comprehension as well as listening to others and comprehend what they are talking about.
My wife and kids keep telling me that I am misunderstanding what they are talking about.
Having a lot of Seizures especially Grand mals are dangerous – based on what my neurologist told me – can have a detrimental effect on the brain. That’s one of the reasons I could not get off Phenobarbital. I know it’s addictive so wanted to get off it but the few times I did I ended up with Grand mals.
I know it’s very frustrating having epilepsy and hard to deal with. This is just my opinion but I think you have to take your mind off these issues by doing something else you enjoy most. To me it’s working out – maybe it’s the adrenaline kicking in or software development that keeps my mind occupied on something else and not concentrate on my health issues. I am not allowed to drive since I have Seizures almost everyday and am stuck at home and unable to go anywhere. It’s just taking my mind off my condition and concentrating on something else is what keeps me going.
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Comment by prasadmok — May 17, 2020 @ 12:03 PM
Oh George 😊🙏🏼🦅😇🙏🏼💗. Well so you know I maybe be a “First Nations woman”, but everyone of my children has served mass here in our church from the time they were all 4-5 years old up until they were 18 years old. Also my brother (who me and my husband raised) actually was part of the “liturgy Group” who was able to meet “POPE JOHN PAUL THE SECOND” in Toronto, Canada at “WORLD YOUTH DAY” when he went there. My brother was also a “flag barer” at the opening ceremonies 🙏🏼🦅😇❤️. Trust me WE NEVER MISS CHURCH!! But yes I WHOLEHEARTEDLY AGREE WITH YOU “INTERNET CATHOLIC CHURCH SERVICES” ARE JUST NOT THE SAME AS IN PERSON!! As for reading at least your there and at least you keep going and keep trying and DON’T GIVE UP!!!!!!! We all almost have nothing but time and trust me nothing is more painful than watching an epileptic struggle and have headaches and hurt!!!!!!! As long as we have THE FAITHFUL THE REST WILL BE HERE ALWAYS!! 🙏🏼🦅😇🙏🏼❤️💗🦅💕
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Comment by Kathy S.B — May 18, 2020 @ 9:49 PM
I know it was a tremendous sacrifice, Margaret. But I think, in the long run, it was a change for the better.
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Comment by Phylis Feiner Johnson — May 17, 2020 @ 10:58 AM
Hi Phyllis,
It has been a long time since I have commented on here but that’s only because I have had my own share of issues and things I hate about seizures that are very unfair too to deal with too. Now, may be as good a time as any to share if it helps someone else.
I live alone and my Drs find that scary but I no longer do. I have been made well aware of myself and how my body feels and I am well controlled on the meds I take. I also wear an ID bracelet with a scan on it thru MedID. In one way I am fortunate that it isn’t that easy recognize I have a neurological problem. The meds I take are strong but they have not stolen the expressions from my face or how animated I am in general. That too has surprised my Drs.
My memory has been an issue at times and besides all the things all of you have done I also sought the help of a neuropsychological. I can’t recommend this enough to anyone like us because depression and suicidal thoughts go hand in hand with any neurological problem and we are not immune. My memory is pretty good now and like the rest of you, I have been thru hell.
A special note to Father George…
Watching a virtual presentation of yourself may not be the best way to judge your own speech patterns. If you feel there may be some kind of problem please see a speech/language pathologist. They are the best at being able to evaluate your speech and would be able to tell you if further evaluation or therapy is needed. I have a background in this area. It’s worth looking into if it could ease your mind.
Please stay safe everyone ❤️
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Comment by Janet Ranieri — May 17, 2020 @ 2:43 PM
Thank you for your encouragement, Janet. I also think a neuropsychiatrist can be very helpful, but good ones are few and far away.
After I tried committing suicide, I was recommended to one, who truly was a quack and I ended up much better with my original psychiatrist whom I had been with for years.
I tried cognitive behavioral therapy with him, but it just didn’t take. Perhaps I wasn’t committed enough.
But obviously, you have put a lot of work into becoming who you are now.
Your perseverance and fortitude are enough to inspire us all.
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Comment by Phylis Feiner Johnson — May 17, 2020 @ 2:56 PM
WELL SAID!! 🙏🏼🦅😇😘😘😘😘😘
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Comment by Kathy S.B — May 18, 2020 @ 9:52 PM
Sleeping so much after then I miss the day
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Comment by Richard bentley — May 17, 2020 @ 11:15 AM
Thank you Phylis and I’m sorry to learn you thought about taking your own life. What a terrible day that would be for so many people not mention your own family. I’m happy to see you did not go down that path!!😁
I was actually speaking of a neuropsychologist. A lot less expensive and much easier to find. Many are covered by insurance as well.
I have been down that deep, dark tunnel and it seems too dark and endless and no hope of getting out of so suicide seems like a logical solution. What you need to be able to say to yourself is that suicide is never a logical thought, it’s irrational. Once you say that to yourself you can tell yourself you are on the mend and getting out of that tunnel starts to become easier.
I credit my Drs who taught me very well how to listen to my own body and pay attention to how I feel and use that as a guide because I wasn’t going to be able to have too many choices of meds to be put on. It took a long time for me to adjust to the one’s I take. It’s been 9 yrs for me of being seizure free. I’m ever so grateful ❣️I know that isn’t the case for others so I try to share my hard work because it was worth it. I don’t have a lot and I lost a lot. I blame what I lost due to ignorance and lack of education and knowledge of Epilepsy. It’s not Leprosy! However, that happens to be what I hate most, the ignorance and the way we are often treated. The stigma still exists.
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Comment by Janet Ranieri — May 17, 2020 @ 4:36 PM
Nine years being seizure-free! But what a price you paid, Janet.
Thanks for setting me straight on a neuropsychologist and a neuropsychiatrist. But, I’m not sure if I was ready for either at that point.
It was off to the psych ward where every day was the drug du jour, in a prison setting. Punishment for having survived?
The tunnel was long and narrow. Climbing out was a commitment to my husband. Certainly not to my family who treated me like a pariah and wouldn’t even say the “E” word.
The stigma and ignorance lives on. And sometimes it’s difficult to keep myself from falling down that rabbit hole again.
This group helps. It’s the reason I get up in the morning. To help others in a way I never was helped.
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Comment by Phylis Feiner Johnson — May 17, 2020 @ 4:50 PM
Hi again Phylis,
I truly am sorry you have endured some difficult if not horrific times of late. But as dark as some of those times must have been for you I don’t believe coming through in the Psych Ward was a punishment with new meds every day. Somewhere in the back of your mind you were thinking of Arthur and if you hurt yourself he would blame himself for not being there to help you. That’s what pulls me out except it is my son. I can’t put that blame on my son, it doesn’t belong there. The fact is suicide is a very selfish act. It hurts everyone else around us. We are gone and don’t have to deal with the mess we left. But that’s the rational mind thinking. It takes a lot of work to get to this point when you recognize where you are and say to yourself that , ”This will pass, I need to breathe, relax and remember who is important to me.” This does work. I have severe migraines too as a result of the beatings, I took and the concussions. After a bad one I find myself in that dark place too and willing myself out of it. I admit it is hard to do. My son only learned of this recently. I think I was too ashamed to admit it. Now we have no secrets and it’s better. And, it can only get better! That’s what I say now and I’m hoping you will too!!😊
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Comment by Janet Ranieri — May 17, 2020 @ 7:51 PM
You’re correct, suicide is a selfish act, but I could not see my way through. And yes, it was a mess.
The only thing that got me through was Arthur.
But there are still deep tunnels to work my way through.
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Comment by Phylis Feiner Johnson — May 18, 2020 @ 9:57 AM
Hi Richard,
Sleeping helps your body heal. Don’t fight it. The meds often make you tired as well but you will get used to that.
Take care and stay well!!
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Comment by Janet Ranieri — May 17, 2020 @ 6:14 PM
Awww….Phylis, it can take a long time to get out of the dark tunnel or it can feel like it is taking a long time. What’s important is that you recognize that feeling for what it is and let those who love you, Arthur, and your own self awareness guide you through those dark thoughts and moments. You can do it! I know you can because I have. The first time I did I realized later that I did it on my own and was stunned! My therapist wasn’t 😂 She knew I could do it on my own I just had to see for myself. The fact is it is so much easier to stay in that dark place and think the worst about ourselves. But the truth is we as Epileptics do not give ourselves enough credit for being the intelligent, creative, articulate, beings that we are. And you are amazing!! Don’t ever under estimate how many people you have been able to help 😁 We would be lost without you!!
Try to remember that and/or reach out to us if you need us.
We will be here for you too❣️
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Comment by Janet Ranieri — May 18, 2020 @ 3:18 PM
Janet, thanks for the encouragement and support. They mean more to me than you can imagine. Especially coming from a survivor of those deep, dark places.
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Comment by Phylis Feiner Johnson — May 18, 2020 @ 3:39 PM
If you look back in history a lot of intellectuals had epilepsy. Alfred Nobel, Newton, Socrates, Aristotle etc .. http://www.edmontonepilepsy.org/epilepsy/living/famous.html
Just because we have epilepsy nobody should discount us or us feeling we are “lesser” than others. Mind is a brilliant thing. We can do a lot regardless of our situation.
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Comment by prasadmok — May 18, 2020 @ 5:18 PM
Prasadmok, you’ll enjoy this:
Epilepsy Hall of Fame
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Comment by Phylis Feiner Johnson — May 18, 2020 @ 5:24 PM
Hi Phylis, Sorry, I did not read your posting before. Your posting reflects the same points I was making. All of us with epilepsy go thru these ups and downs most of time due to the fact that people around us don’t understand/know what epilepsy is and treat us badly. Especially folks who knew us before and after our epilepsy and don’t understand why we are behaving/acting differently.
It’s hard not to get depressed at times but we have to get over that knowing that we are better than most folks out there.
Never give up believing in yourself.
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Comment by prasadmok — May 18, 2020 @ 5:44 PM
I think a lot of it is simply trust!! Trust doesn’t come very easily for me! Or knowing exactly who to turn to for help or who isn’t in for the money but for the person solely. 😘🦅🙏🏼💗
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Comment by Kathy S.B — May 18, 2020 @ 9:58 PM
Thank you to everyone responding with personal details. You help me understand what a newly-diagnosed friend is going through. His seizures are very different from my own.
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Comment by HoDo — May 17, 2020 @ 12:55 PM
Oh Phylis, I know all too well what you went through and I am sorry you had to go through it. It seems the psych Ward is the only and best way they have for us because they still don’t understand us.
This is what really hurts me. I have a degree in Special Education and Elementary Education with extra certifications in special areas. My Masters is in Speech/Hearing and Language Pathology. I retired a few years ago but decided to go back to the school district as an aide b/c I love kids. What a mistake!! I worked with several kids who had seizure disorders and some I could tell had them but no one would listen to my words. They all knew better. I didn’t say I have Epilepsy because watching what the system did was bad enough. I left because I was seen as an intimidating person and usually an aide does not have the education I do. I did what I was asked to do but the politics involved and the egos if the people I had to work with was insane.
I also know about how it feels to be in a psych Ward. I was put in one after being beaten up and almost killed by my partner at the time. He claimed I tried to commit suicide by taking too many pain pills. It wasn’t true. Oh, we had an argument that became physical but that was him and it caused me to have a seizure. He didn’t realize that’s what was happening. He thought I was fighting him which made him angrier. I am very tiny and he was irrational. I got away from him but was unable to walk. I needed my pain meds and I took more than usuakbecause he gave me a very bad concussion and the seizures I had left me weak and unable to walk. I wanted to sleep. He came back to find me asleep on the floor and panicked. To this day my story is the same, his is not. However, I was in the hospital for 3 weeks from that and 2 of those weeks were in the psych Ward. It didn’t take long for the Drs to figure out I wasn’t suicidal. I still had to go through their ridiculous therapy program but I called the shots because it was stupid. I said I would go to a Domestic Violence program and I did. Much better and I found my own therapist who is awesome.
Too often we are afraid to speak up for ourselves. I’m finding that we have to. The so-called experts do not understand us so we need to educate them. We live with this illness they do not, tell me who knows better how it feels to be an Epileptic?
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Comment by Janet Ranieri — May 17, 2020 @ 6:05 PM
Well, you paid a price larger than any mortal should bear. Both physically and mentally. How smart to go to the Domestic Violence program.
And how sad that you weren’t able to put these experiences to work for those suffering kids. And teach them what you so painfully learned.
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Comment by Phylis Feiner Johnson — May 17, 2020 @ 6:21 PM
That’s courage!! 🙏🏼🦅😇😘
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Comment by Kathy S.B — May 18, 2020 @ 9:59 PM
Thank you Phylis!
In short, there is nothing intimidating about me. I take what is given to me to work with and run with it. In many ways that makes me smart I suppose. Too many kids in the special Ed setting don’t belong there. The system is a mess and unfortunately too many teachers do not know what to do with them. It’s very sad. It’s taken a very long time for Autism to be understood! It will take that much longer for Epilepsy.
We need to be good to ourselves because we deserve that 😊
I’m convinced that everyone has something which means we all need to be empathetic and show compassion for each other. It’s easier said than done but it is what I try to do mostly because I hope when I need it back I will get it back. That’s all I could want for.😊
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Comment by Janet Ranieti — May 17, 2020 @ 7:02 PM
You are very smart. It’s shame your intelligence wasn’t put to work.
And yes, we are here to help each other with honesty, compassion and caring.
The challenge is passing those feelings to the outside world and hope they come back in some understanding form.
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Comment by Phylis Feiner Johnson — May 18, 2020 @ 9:51 AM
Janet,
I admire & respect your determination to overcome all odds & stand up for yourself & for many voiceless victims of medical hardships & negligent institutions.
Your case & the case of many neglected victims of the establishment you’ve witnessed over the years prove that there’s an urgent need to overhaul the system & let the victims of medical hardships represent themselves, manage & decide how to protect their wellbeing without the interference of those who has never been affected by the medical hardships & institutional negligence.
Your brave journey to conquer your destiny is inspiring example to all those who’re still suffering from medical hardships & negligent institutions. 👍!
Gerrie
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Comment by BahreNegash Eritrea — May 18, 2020 @ 10:59 PM
Thank you Gerrie for your very kind words and thoughts. At the time, I did not know what resources were available to me as I guess is the same truth for many of us. It’s been my experience as well that those of us who have this illness try hard to help each other in any way we can. If nothing else we have have each other.
Stay well 😁
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Comment by Janet Ranieri — May 19, 2020 @ 5:19 PM
You’re very welcome Janet,
Yes, I agree with you most of us had no idea where to ask & look for help.
And some us were ashamed to accept & admit our medical hardships & tried to deny & cover up our medical conditions & refused to ask for help.
In the end, we all learned the hard way that we can & should fight for our lives by any means necessary.
Therefore, thanks to Phylis bringing all of us together to EpilepsyTalk, we got to make this world a better place to live for us & for millions of voiceless lives languishing in negligent institutions.
Keep up the great work.
Gerrie
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Comment by BahreNegash Eritrea — May 20, 2020 @ 7:23 AM
Not just the effects on me, but the effects on my family. A spouse finding me passed out in a pool of blood, and wondering when it might happen again, and again.. Forgetting my own kids names. Passed out in the car, and my toddlers throwing tiny shoes at my head to wake me up. My kids fear of potentially inheriting my epilepsy. etc, etc.
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Comment by skolly9 — May 17, 2020 @ 2:59 PM
Skolly, this article might help allay some of your fear about your kids potentially inheriting your epilepsy:
Is Epilepsy Inherited?
https://epilepsytalk.com/2019/12/09/is-epilepsy-inherited/
As for the effects on your family, they are tragic. All you can do is try to explain and deal with your anxiety and their’s, which must be incredibly high.
I’m sorry.
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Comment by Phylis Feiner Johnson — May 17, 2020 @ 3:11 PM
One of my LARGEST FEARS AS WELL BUT NEVER SPOKEN!!
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Comment by Kathy S.B — May 18, 2020 @ 10:01 PM
That was my fear as well – if my kids would inherit my epilepsy. I asked the same question to my Neurologist. As Phylis pointed out and my Neurologist confirmed as well the chances are extremely low that our kids would inherit it.
It is a very scary thought and would be hard to live with if we were to pass it on to our kids.
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Comment by prasadmok — May 17, 2020 @ 4:10 PM
I hate the frequency of my seizures! Especially any falls; with no warnings at all. Making it very difficult to get any employment?
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Comment by Keri Teavae — May 18, 2020 @ 12:50 AM
I feel for you. I used to fall constantly. But now, with physical therapy, my fall rate has lessened considerably. You might consider it.
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Comment by Phylis Feiner Johnson — May 18, 2020 @ 10:11 AM
This may sound a bit off the wall or wholly inappropriate, but hey. I study aikido. I am very clumsy and make little progress in advancing from belt to belt, but I have learned to fall. Since then, the number of falls has decreased dramatically.
If this sounds at all appealing, I would suggest interviewing the Sensei up front, hoping for someone not totally ignorant about seizure disorders. There were real problems with my Sensei, some of which continue, but the benefit remains. I can’t control my seizures but apparently my body / brain can affect when / if I hit the ground. Keep in mind, this is temporal lobe, not grand mal.
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Comment by HoDo — May 18, 2020 @ 11:35 AM
May I please ask what “Aikido” is? Thank you
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Comment by Kathy S.B — May 18, 2020 @ 10:02 PM
Aikido is a martial art which originated fairly recently – around World War II – in Japan. It is based on defense, not on attack, and least harm.
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Comment by HoDo — May 19, 2020 @ 7:08 AM
Goodmorning HoDo 😊. Wow I like that 😃. Maybe that’s something even I can look into!! I don’t remember having my seizures (2 of them. One for two nights in the middle of the night I guess). My husband told me. I was thinking it’s probably because where I live we say “when it rains it blizzards!!” And HAS IT EVER BEEN BLIZZARDING!!!!!!! So it left my legs a bit rubbery for a few days due to stiffness and body achy, but mostly my head and neck! However now I am beginning to come around again. I think for me the hardest most frustrating part is feeling like a “ping pong” between the doctor and the pharmacist!! I have been 3 nights without the clobazam I’m supposed to be on so I’m thinking maybe I’ll just try and keep going without it? Yes I must admit it the most awful feeling when it comes to withdrawal of a medication!!!!! I’ll give my pharmacist one more call and my doctors office today but that sounds like something that may actually be easier that meditation. Thank you HoDo and please have a very good blessed day today and please take care of yourself 😊🙏🏼🦅💕
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Comment by Kathy S.B — May 19, 2020 @ 9:53 AM
I agree. Hard to get employed if you have epilepsy, although companies are not allowed by law to discriminate. But in reality that’s not usually the case. I went for 2 interviews. On one I had a Seizure and fell off the chair. On another one I had to stop the interview and got down on the floor since I realized I was going to have a Seizure.
I also get confused right after my Seizure for a while and obviously did not do well in the interview process.
It’s bad that we have Covid now, however a lot of companies are hiring/having employees work from home. So maybe you can apply for jobs now thru Glassdoor, LinkedIn or other job sites and have interviews online and work from home once you get employed.
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Comment by prasadmok — May 19, 2020 @ 6:29 PM
Working at home would be a dream. Privacy. No one staring at you. No questioning eyes. No discrimination. Whew.
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Comment by Phylis Feiner Johnson — May 19, 2020 @ 6:43 PM
Interesting, Hodo. How might aikido help people with epilepsy perhaps decrease their falls? I, and others on this blog, might be interested! Thanks!
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Comment by skolly9 — May 18, 2020 @ 1:00 PM
First, as reassurance, most aikido practices are defensive and respectful.
You are taught how to stand so that you are most stable and grounded in the event of an attack.
Then, because techniques involve actually tossing someone to the ground, you are taught how to fall as well. You learn to throw and you learn to be thrown, how to land, etc. You practice on a thickly padded mat.
Your whole perception of your body and its capabilities changes for the better, whether like me you continue to be awkward (never learned to dance, either) or whether you’re all grace.
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Comment by HoDo — May 18, 2020 @ 1:13 PM
Equanimity. Aikido can teach you equanimity in the face of stress.
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Comment by HoDo — May 18, 2020 @ 1:39 PM
To look at this slightly differently – when you’re hyper-alert, you tend to be more in your head. Martial arts teach you to lower your center of gravity from your head to around your hips. It’s referred to sometimes as “dropping your center.” When your center shifts down, falling is (for want of a better word) easier.
Also, because you’re learning to defend yourself against an attack from in front, you’re less likely to run into things or fall into them. Your arms just rise automatically to make space around you.
This takes lots of practice. It’s not a quick fix. And then one day you are just doing it, your body looking out for you.
Not everyone’s cup of tea, of course, and possibly in some cases a really bad idea.
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Comment by HoDo — May 18, 2020 @ 1:38 PM
Hi Kathy,
Just a word of caution for you and everyone really…Its never a good idea to abruptly stop your meds. Disastrous results could happen. Your pharmacy might be able to give you a few pills until the Dr can be reached so you can always ask them if they will do that.
The other Marshal Arts exercise sounds great too but it is not a substitute for a medication. Rather, they could be used in combination (together ) for maximum benefit. I hope this is helpful 😊
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Comment by Janet Ranieri — May 19, 2020 @ 5:32 PM
I agree with Janet. Not a good idea to stop medications without consulting your Dr. You may end up with Grand Mals which can have a detrimental effect on the brain.
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Comment by prasadmok — May 19, 2020 @ 5:51 PM
It may sound weird but what I hated was having long streaks of no seizures. Why? It gives you the idea you will remain this way forever but you’re not that lucky. The end of my streaks came after deaths in the family. The first time I was seizure-free for four years. My sister and mom pass away in my last two years of high school and I get mad, I get stressed and the seizures start again. Later after a three-year span, my dad dies and guess what – anger, stress and the return of seizures.
One more thing: Side-effects of drugs like dizziness, double-vision and anger get old real quick especially when you hear it from your kids that you scare them by the way you act and you don’t realize what you did.
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Comment by Ed Lugge — May 18, 2020 @ 1:15 PM
Well, you know that stress is the number #1 trigger.
Stress can increase cortisol, known as “the stress hormone” because cortisol is secreted in higher levels during the body’s “fight or flight” response to stress. And, as you may imagine, it’s responsible for several stress-related changes in the body which also may influence seizure activity.
Negative emotions related to stress, such as anger, worry or fright, may also cause seizures. This happens because the limbic system, the portion of the brain that regulates emotion, is one of the most common places for seizures to begin.
Maybe this link will help, in some small way:
Some Stress and Anxiety Solutions…
https://epilepsytalk.com/2020/03/21/some-stress-and-anxiety-solutions/
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Comment by Phylis Feiner Johnson — May 18, 2020 @ 1:22 PM
I just decided to give a shot at eliminating seizures all together or gaining better control through surgery. This December I’ll be looking at 20 straight seizure-free years.
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Comment by Ed Lugge — May 18, 2020 @ 8:30 PM
TWENTY YEARS seizure free. WOW! Why surgery now?
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Comment by Phylis Feiner Johnson — May 18, 2020 @ 9:37 PM
No, 20 years is the result of the surgery. Sorry for the confusion.
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Comment by Ed Lugge — May 19, 2020 @ 10:19 AM
Hi Ed,
I was first diagnosed with Epilepsy at 5yrs old and became seizure free after graduating HS. I remained that way for over 25 years and never thought they would come back but they did after my mom passed away. So yes, stress is a definite factor but attitude is too. It’s like the ”self fulfilling prophecy”. I also became a single mom at that time and had no time for no support system.
May I ask what meds you are taking? And have you talked to your Dr about how they make you feel? It could be just an adjustment needs to be made. I have felt all those things and at least one of them I had to just give myself more than time. The others were an adjustment. However, the side effects or the postictal phase of seizures is much more awful and can last longer than drug side effects. Plus, being seizure free allows you to enjoy freedom you wouldn’t otherwise have.
Think about it and reconsider staying seizure free, you may like it❣️
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Comment by Janet Ranieri — May 19, 2020 @ 6:01 PM
Thank you, Janet. A temporal lobectomy appears to be the best solution I picked to control seizures. An almost fatal accident is what pushed me to try surgery.
I was taking Trileptal, Keppra and Dilantin. I went off Trileptal 19 years ago, Keppra 18 1/2 years ago and Dilantin 14 years ago. My family will never forget the person I was during and after taking these meds.
Right now I’m working on a sixth poem about my life with epilepsy but I’m trying not to jinx myself since this poem is about going 20 years w/o seizures and that’s not until this December.
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Comment by Ed Lugge — May 20, 2020 @ 12:39 PM
WOW ❣️❣️ you deserve to be celebrating this huge milestone, that’s fantastic and I am truly happy for you. The things that keep calm fairly stress free are meditation, listening to calmingsoft must While attempting to do yoga and going a bout my day
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Comment by Janet Ranieri — May 21, 2020 @ 3:53 AM
Far more than the physical scars I get to live with for having grand mal seizures, rubbing my face, head & body against hard floors, cements & rough objects, what I HATE the most about Epilepsy is the DREADFUL MOMENT when I feel & know that another grand mal seizure is coming on the way & there’s nothing I could do to stop it.
Knowing the epileptic strike is on the way,
I HATE the feeling of being helpless to stop the seizure & losing control of my own body.
The tormenting moment before I loose consciousness feels like standing in front of speeding train no one can stop nor can I escape from.
The aftermath & recovery process from the seizure, confusion, disorientation & memory lose,,, feel less fatal from the initial dreadful moment of the coming seizure.
Gerrie
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Comment by BahreNegash Eritrea — May 18, 2020 @ 6:22 PM
An oncoming train, that fatal bullet, a storm cloud about to burst, yes Gerrie there are so many ways you can describe oncoming seizures.
But the sheer terror, regardless of how we perceive them, is that they ARE coming and we are helpless in their path.
Like moths to a flame, the electricity of our brain stops us dead in our tracks, to regroup, rethink (if we are able), and reactivate our senses.
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Comment by Phylis Feiner Johnson — May 18, 2020 @ 6:59 PM
Yes Phylis, While for most part of Epilepsy seem to be less dramatic, subtle & gradual declination of brain functions, the terrifying part of Epilepsy I hate the most is the unpredictable nature & intial stage of oncoming seizure in progress.
By comparison, the rest of Epilepsy caused disorders seem to be less fatal & not dangerous.
Then again, it’s all about personal conditions & circumstances.
Gerrie
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Comment by BahreNegash Eritrea — May 20, 2020 @ 6:52 AM
I wonder what medications you are taking. For me getting off Phenobarbital and lack of sleep cause Grand mals. Do you have Grand mals on days you sleep less – less than say 5-6 hrs ?
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Comment by prasadmok — May 20, 2020 @ 12:53 PM
My memory is atrocious. I’ve forgotten so much. I go around pretending I remember stuff. Even my four year old granddaughter has reminded me of stuff.
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Comment by leica2015 — May 18, 2020 @ 6:33 PM
The side effects of some of the seizure medications can cause memory lose.
Have you thought of switching & trying different medications to see if your memory can improve?
I think your Neurologist may help you to make a better choice.
Gerrie
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Comment by BahreNegash Eritrea — May 18, 2020 @ 6:50 PM
Memory loss!!!! Well, I don’t even know if I have written this reply before – and I am NOT joking!! I’ve just tried to read back through all this recent list of posts to see if I can find anything. However, bad though the more “recent” memory losses are, the VERY worst of all are my long term kind. I don’t remember getting married (not a bad idea my husband says!), I have no memory at all of being pregnant and of my son being born – he is now 45 years old. I have no memory of my parents – and on and on and on! The only slightly light-hearted side (I’ve probably forgotten posting this before too!) is things like the fact that I have a big advantage over the rest of the world – I never have to watch a repeat show on TV or a film as I can’t remember having seen it the first time round!! Well, if you don’t find something to smile about, you give up altogether. Seriously, though, I feel as if I don’t really know who I am as our long term memories are what tells us who we are – no?
I have all the same shorter-term losses as well – I have investigated if that is caused by my meds but it doesn’t seem to be so. Both kinds are caused, I believe, by my seizures – my memory is always worse post-seizure. Thanks to all of you for being here; you make such a difference, make me feel much more “normal”.
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Comment by Margaret Hay — May 19, 2020 @ 4:58 AM
Unfortunately, my long term memory is fine. And so I remember all the rotten things of my childhood. (It wasn’t pretty.)
Short term memory is a total loss. I’m a cheap date. You can take me to the movies three times and I’ll never remember what I saw!
I’ll take the short term memory over the the ugly long term memories, any day.
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Comment by Phylis Feiner Johnson — May 19, 2020 @ 8:57 AM
I do agree about the falling down going up (and in my case down the stairs though)!! And YES THE NASTY CONCUSSIONS feel more like a “SET BACK” than anything else!! Which was why the very first thing I taught any of the children I coached in any sport was “TO FALL!!!!!!!”. People/parents could never understand it, but in all honesty after falling, getting checked or hit by a ball and puck and a kick by a horses hooves I just learned to either drop or move REALLY FAST when I could remember!! After awhile even the dropping, falling and seizures almost feel like a very awkward unwanted, but part of who I am. So I keep getting up and trying EVEN HARDER to keep MAKING AND LEAVING MY MARK ON THIS WORLD WHILE I CAN REMEMBER AND NEVER BE BEAT!!!!!!! Lol 😂 and it gives my children a mark to ALWAYS TRY AND BEAT AND A REASON TO NEVER GIVE UP!! 🙏🏼🦅😇😊😘
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Comment by Kathy S.B — May 19, 2020 @ 10:02 AM
I can understand why you say that, Phyllis – bad childhood memories are particularly awful things – I have a few rotten ones. I remember things quite well until about age 15 .The horrible part is nothing to do with epilepsy – mine is the late-onset type – but I was overweight and was teased really cruelly and endlessly about it – you never truly put that behind you and yours sounds 1000 times worse than mine.
You say you’re “a cheap date” – well I tell my (close!!) friends that they could ask me to repay any sum of money they like to dream up and I’d have to pay them as I wouldn’t be able to remember whether or not I owed it!!!
Thanks as always for your support – just by being there.
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Comment by Margaret Hay — May 19, 2020 @ 10:05 AM
Ok Margaret. You owe me $10,000. No looking back and cheating! 🙂
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Comment by Phylis Feiner Johnson — May 19, 2020 @ 10:09 AM
No problem, Phyllis but, unfortunately, my bank manager won’t let me be that much overdrawn (sorry, I don’t know the American term for that). You’ll have to wait till I save up a bit but, hopefully, you’ll have forgotten about it by then!!!
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Comment by Margaret Hay — May 19, 2020 @ 10:16 AM
LOL! How about $5,000?
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Comment by Phylis Feiner Johnson — May 19, 2020 @ 10:18 AM
I’ll give him a call tomorrow about that amount but hopefully you’ll have forgotten all about it by then!!!
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Comment by Margaret Hay — May 19, 2020 @ 10:20 AM
Sorry, missed out some of the text – it should have read – you’ll have forgotten ALL about it even by then!
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Comment by Margaret Hay — May 19, 2020 @ 10:24 AM
Sorry Ed – I was slightly confused too – thanks for clearing it up – you deserve praise for having the courage to go through with surgery – especially 20 years ago – fantastic that it worked out so well for you.
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Comment by Margaret Hay — May 19, 2020 @ 10:28 AM
Thank you and sorry for the confusion. Once in a while, I communicate to others like I’m talking to myself.
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Comment by Ed Lugge — May 19, 2020 @ 1:47 PM
Strangely enough I can identify totally with that – my husband and my son often look at me as if I I was not on their planet.
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Comment by Margaret Hay — May 20, 2020 @ 3:47 AM
Margaret, you have something even more important right now and that’s a sense of humor! Let’s face it, it’s the key to our sanity! Sometimes I will say, do, forget things and just shake my head and think wow, what the hell just happened, and be flabbergasted at how silly, quirky. Gotta do that, or Ill (we’ll) be crying, instead, lol. However, do please stay safe as well, too.
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Comment by skolly9 — May 19, 2020 @ 7:30 PM
Thank you for your comment, skolly9. Yes, for me, it’s always been essential to hold on to my sense of humour otherwise I’ll just give up and crawl into a dark corner and stay there. So, if I can help other folk at the same time as helping to keep my own sanity – or as much of that as I ever had – then that’s great. Strangely enough, I think my sense of humour has grown since the onset of this horrible illness. Maybe that’s my brain’s way of compensating for what I’ve lost?! Thanks to all of you for your support – it’s really important to me.
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Comment by Margaret Hay — May 20, 2020 @ 3:42 AM
During the course of all of this recent post, I’ve read so many different comments about what we all hate about our own individual situation and that has been so helpful and comforting to me – and I’m sure to everyone else. Apart from the aspect of losing “me” that I’ve already written about, my other main one is having severe tonic/clonic seizures during the night and falling out of bed. Of course, I always manage to hit something (no matter how much non-essential stuff I shift away) but that isn’t the most important part. I am, shall we say, by no means, a small person and once I am on the floor, my poor husband doesn’t have a hope in the world of getting me back into bed or even into a different position on the said floor. He has been known to be so worried about me that he has felt he had to go and ask a neighbour to help him to get me back up. It’s not too bad for me, I haven’t got a clue that it is happening!! – but it is awful for him – he feels so helpless and inadequate. No matter what I say to him, even after 14 years, he cannot shake that feeling.
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Comment by Margaret Hay — May 20, 2020 @ 4:09 AM
While your husband’s strong will to protect you is admirable, I wonder if having sliding protective bars around a larger bed could have protected you from falling to the floor, like children’s bed?
I would give it a try & save my wife a whole lot of hustle.
Gerrie
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Comment by BahreNegash Eritrea — May 20, 2020 @ 5:44 AM
Thank you for your kind thoughts and input. We have investigated the idea of something like this but are concerned that I would try to climb over it to get out of bed to go to the toilet for example. I sometimes get quite confused just before a seizure comes on – and before my husband is aware of it – and I have been known to ‘fight” him for trying to get me to lie back down!! So, we aren’t sure quite how to progress with this!
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Comment by Margaret Hay — May 20, 2020 @ 7:44 AM
You’re Welcome, Margaret!
And I agree with you that since my seizures can start with blackout, hallucinating confusion & delusional disorientation before the grand mal seizure takes over, I can see your point that putting protective sliding bars around the bed might NOT be a good idea to protect you from falling to the floor or harming yourself to climb over the protective bars.
Therefore, I think getting rid of the bed & putting the mattresses on the floor to sleep would be much more safer than sleeping on the bed.
Best Wishes!
Gerrie
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Comment by BahreNegash Eritrea — May 21, 2020 @ 4:12 PM
Hi there all of you – what a great idea – as they say “why didn’t I think of that”!?? Seriously, that is something that I will investigate properly – once this horrible lockdown situation allows me to go and shop around with my other half! The more I think about it, the more I like the idea. Thank you for all the care and thought. I’ll let you know how it goes – don’t know how long I’ll have to wait though – over here in Scotland, we are still in pretty total lockdown and lifting of the restrictions is going to be in “baby steps” as our Scottish First (Prime) Minister calls it. Better safe than sorry though. Epilepsy pkus Covid19 I can do without!
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Comment by Margaret Hay — May 21, 2020 @ 5:31 PM
I do have Seizures at night and some times Grand mals. If I did not enough sleep the night before and did not take a nap the next day, I tend to have bad Seizures or Grand mals. On those nights, or sometimes even in the afternoon I wrap my blanket around me tight in bed so I can’t really move around. When the Seizure happens I tense up start shaking but can’t really move around and fall out of bed.
This may not work for everybody but it works for me.
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Comment by prasadmok — May 22, 2020 @ 6:12 PM
Thank you to both Prasadmok and skolly9 – both of these are good ideas. I had never thought/heard about the blanket idea and that sounds worth a try, especially when I need to have a nap during the day. Regarding the platform bed – that also sounds great. I had thought of trying just my mattress to start with as I realised that my current bed base, having drawers etc, has no springs so the floor wouldn’t make too much difference except for being very low indeed – the “old” joints protest a bit these days!! If it works in general then the platform base sounds well worth investigating – maybe with Phyllis’s idea of the bodyform mattress. Thanks again for caring.
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Comment by Margaret Hay — May 23, 2020 @ 4:57 AM
How about one of the thick foam core mattresses for the floor that contour to your body?
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Comment by Phylis Feiner Johnson — May 21, 2020 @ 4:46 PM
Wow Gerrie!
This may sound odd but I think you may already know when a seizure is happening. From your description it sounds like you are very aware and that’s a good thing. You can use those feelings to help yourself prepare for what is about to come. I have and it’s paid off. I’ve called 911 on myself and then done breathing exercises to keep myself in a state of calm before help strived. Once they came, out I went.
You can do this. I think as Epileptics we are so much more aware of our bodies than most other people. We have to be. As an aside, my brother had Parkinson’s Disease and has since passed. I watched him will his arm to stop shaking while a tech was trying to draw blood. He has always been my inspiration for making me trying to accomplish things that are hard. Sometimes it just takes another pair of eyes on your situation for you to see that you have this! And you do Gerrie😁 If you can describe all that, then you know you can try to get yourself to a safe place, possibly call 911 if no one else is around to help and then pay attention to how you feel after, well enough to describe it to a Dr. You will be amazed at what you remember. I have been. You have more abilities than you realize and you are very intelligent. Just think on all this for a bit and have an amazing day!
Janet
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Comment by Janet Ranieri — May 21, 2020 @ 5:02 PM
Janet,
Thank you for your compliments, inspiring encouragement & brilliant advice.
It never crossed my mind & I never thought of calling 911 for myself.
Now you came up with brilliant idea, I may need to consider that I can call 911 & get help for myself & should NOT be totally paranoid by feeling helpless to stop the oncoming seizures.
Thank you for your advice.
Gerrie
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Comment by BahreNegash Eritrea — May 21, 2020 @ 6:10 PM
You are so welcome! You got this!!
Now believe it!! There is a company online called MyID that makes medical ID bracelets. You put all your info in and pick the type of bracelet(s) you want and those vary in price and type. For a very nominal fee each month your info is kept up to date. You are assigned a scan that’s imprinted on your ID. This way if you are ever unconscious your scan may be scanned by EMS or hospital staff and they will know your Drs, meds, who to contact etc…
I have been using this product for several years and love it.
If you need to know breathing techniques just ask. It works well for relaxation among other things.
I know you can do this!!!
Janet
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Comment by Janet Ranieri — May 21, 2020 @ 6:47 PM
MedAlert offers the same service. It pays to shop a bit.
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Comment by HoDo — May 21, 2020 @ 7:33 PM
Not sure what you mean HoDo. MyID is very reasonably priced. There is a wide range of items and prices. The service fee is minimal if that’s what you are referring to. I have no complaints 😊
Kindness always,
Janet
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Comment by Janet Ranieri — May 21, 2020 @ 9:14 PM
Janet Hodo,
Thank you for advice.
I need all the help I can get to feel less vulnerable to oncoming seizures & from end up handcuffed to Ambulance & hospital bed, suspected of illegal drug overdose for having grand mal seizures.
Any kind of service to reduce the frustrating struggle with epilepsy is appreciated.
Gerrie
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Comment by BahreNegash Eritrea — May 22, 2020 @ 12:11 AM
I’m sorry such terrible things have happened to you Gerrie. Never be afraid to tell the Dr to do Tox screen if they think there are other drugs involved. It proved me to be right when I was being accused of trying to commit suicide. They found only what I said they would find.
We can’t be afraid to be our own advocates. If no one else will be then make sure you are!! Seizures are still very misunderstood. Make sure you know what your meds are and what their generic names are…very important!
So much of this is really common sense and you wouldn’t believe who doesn’t have it sometimes 🙃
Stay well
Janet
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Comment by Janet Ranieri — May 22, 2020 @ 5:46 PM
Janet,
I admire your resilience in having to go through it all & still keep your sanity & endurance to stand your ground.
Thank you for sharing your experience, I’m learning from you on how cope with & challenge the negligent medical establishments, demanding detox test for their misconceptions.
It’s good to know how you can stand up for yourself & prove that their misguided suspicions are nothing more than misdiagnosing the patients who need emergency medical attention for seizures.
It takes brave people like you to stop the wanton abuse of negligent establishments failing to provide medical services to the victims of epilepsy, when they need it the most.
Keep up the great work.
Best wishes!
Gerrie
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Comment by BahreNegash Eritrea — May 23, 2020 @ 1:19 PM
Gerrie, have you ever considered getting a seizure dog? It could be helpful when walking and doing errands.
Margaret, a friend of mine has a platform bed which is very low to the ground, and any mattress width you want.
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Comment by skolly9 — May 22, 2020 @ 6:35 PM
Skolly9,
No, I have NEVER thought of of having a a seizure dog but it seems a good idea to have one & I may need to look into it & plan of having one.
Thank you for your helpful advice.
Gerrie
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Comment by BahreNegash Eritrea — May 23, 2020 @ 12:50 PM
The medicine that doesn’t do much.
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Comment by Patty Martin — June 24, 2020 @ 10:52 AM
I agree Patty. It’s a crap shoot. It took me many years before I found my “magical” medicine mix.
Hopefully, you too, will be that fortunate.
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Comment by Phylis Feiner Johnson — June 24, 2020 @ 11:02 AM
Hi I hate sevral things 1 is when i know im goimg to have a seziure and im with ppl who i tell my story of going into asexiire just let me have one no need to call ems to take me to hospital and release me when i come out of a sleep then tryn to fimd a ride home from the hospital 2 when i have aura and im tryn to get to my place they well stop me and say are you oka im on the elvator and they keep talking when im tryn to focus on things while tryn not to fall out grrr
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Comment by Theresa — June 24, 2020 @ 11:30 AM
I guess the people mean well, but they just don’t get it. A little education would go a long way.
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Comment by Phylis Feiner Johnson — June 24, 2020 @ 1:26 PM
I can deal with the public seizures, the muscle pain after a grand mal, being exhausted for nearly a week after. But the worst part is the post-seizure brain fog that can last for up to five days. It’s an off feeling that is uncomfortable beyond words. Like solving a challenging brain teaser, I know what path to take to solve it I just can’t find the entrance to the path. I’m always terrified that it will be permanent
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Comment by Sierra — June 25, 2020 @ 3:22 PM
I can understand the fear. Sometimes you just have to take a deep breath and let the path come to you.
Have you read the latest post?
10 Ways to Cope with Your Stress and Anxiety
https://epilepsytalk.com/2020/06/24/10-ways-to-cope-with-your-stress-and-anxiety-2/
Hope you find it helpful in some way.
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Comment by Phylis Feiner Johnson — June 25, 2020 @ 3:26 PM
I hate not being able to drive myself anywhere I want to go. Having no control of my seizures even though I have been epileptic since I was 18mths old and I am now 55yrs old. I know that they are worse for others so I think of others who have it worse than me.
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Comment by Kathy — October 3, 2021 @ 2:50 PM
That’s a hard question to answer.. but I would have to say that my loss of short-term memory and the problems that has given me would have to be the worst. My Epilepsy started in my late 20’s, and I have no problems remembering things from way back in high school (like quoting Shakespeare’s Macbeth), but I can forget things from yesterday or even earlier today. I’ve lost a few important things in my life just from this single problem. Some people just couldn’t understand why I have to keep so many notes and notes on changes to standards on my desk and that probably led to problems at a job I used to have for over 12 years. I would have to say that there is a close second though.. and that would be not being able to drive… I actually used to drag race a car, I still have.. A ’70 Plymouth ‘Cuda.
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Comment by donscuda — October 4, 2021 @ 10:51 AM
The feeling – every so often I get the feeling that used to mean a seizure is coming unless I work my way out of it by talking or singing. Only difference is now when I get the feeling, I have no fear of a seizure coming and I just relax and make it go away.
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Comment by Ed Lugge — October 4, 2021 @ 8:39 PM
Your self-control amazes me, Ed.
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Comment by Phylis Feiner Johnson — October 5, 2021 @ 9:31 AM