Living with epilepsy - Introduce yourself & meet others

Posted by Colleen Young @colleenyoung, Dec 7, 2016

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let’s learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. You’re likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@ketomom

Hello! I am the mom of a beautiful 19 year old who has epilepsy. Christina’s first seizure when she was just seven months old. We quickly learned medical care for seizures is not the same and traveled to Mayo. She has been a patient at Mayo ever since. In fact, we just got back home after being in Rochester. Christina has been through a lot since the first seizure including brain surgeries. We have found that advocacy and hope can change things for the better. Our favorite treatment (if there is one) for seizures is dietary intervention. Christina has been on the original keto diet as well as another form called the low glycemic index diet treatment. She is also on a low dose of an anti seizure med.

Christina will be attending college soon and inspires us everyday.

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I would like to try the low glycemic diet or a keto diet that was mentioned in a woman's magazine as being more alkaline. I tried keto for 1 year but had to quit due it's causing me acid reflux. Too much fat I guess. I tried to keep the fat plant based. It did reduce my seizures about 30%.

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@heal33

I would like to try the low glycemic diet or a keto diet that was mentioned in a woman's magazine as being more alkaline. I tried keto for 1 year but had to quit due it's causing me acid reflux. Too much fat I guess. I tried to keep the fat plant based. It did reduce my seizures about 30%.

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@heal33
Hello,
I was just curious is you strictly followed the
Ketogenic diet or did you occasionally stray?
I could never follow that diet, no sugar.
Good luck,
Jake

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I followed the diet very strictly. It did help some (30%) but after 1 year I wasn't able to tolerate it anymore due to acid reflux. Often wondered if the diet was healthy.

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@heal33

I followed the diet very strictly. It did help some (30%) but after 1 year I wasn't able to tolerate it anymore due to acid reflux. Often wondered if the diet was healthy.

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@heal33
Although I am far from a nutrition expert I have a hard time believing that a diet of 70% fat is a healthy diet overall. One problem is that restrictive diet‘s are hard to stay on long term. It’s reasonable to assume once people go off the diet any weight they lost will likely return.
Take care,
Jake

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Hi there. I just posted a long message to Jake and it pretty much sums up my epilepsy journey til now. My biggest worry at this point in my life, 72 years young, is should I risk Changing meds or continue with increased dose of Dilantin even though it has created issues for me. You know as I look back over my life, I realize now many of the other health related issues I have or have had, are side effects of the Dilantin. Guess each person has to weigh things and with the help of a doctor decide the next step in their journey. Another problem for me right now, for the first time in my long life I do not have a family doctor. Outpatients at hospital is where I go, even for prescription refills now. My doctor moved To Vancouver or some place out west.
Thanks for the steps to posting will give it a try.

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@maggiek
First of all with Epilepsy you you should be going to see a neurologist as well as a primary care doctor.
Personally I would be more concerned with staying on Dilantin for such a long period of time. Although an allergic rash is a possibility it would be very very unusual and if it’s Steven Johnson syndrome you’re concerned about as I said in another post that 0.04% probability and also there are DNA tests that can be done to check and see if you may be allergic. Also get a vitamin D level. If you do in fact get the vitamin D level checked I hope you will share your results although I am 99.9% positive you’re low and if I were you I would start a vitamin D3 supplement ASAP. Although I probably wasn’t supposed to advise you to do that I feel it’s more important to give you that information than to follow the rule in this particular case.
Jake

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Hi there.. before Covid and as a follow up to recent activity in February I was scheduled for a test…the one with the little pads stuck on my head, with a follow up with neurologist. The call from the nurse practioner recently was part of that as an assessment . . She consults with the neurologist Before any changes are made and follows up with his recommendation. I have the new meds but as mentioned not taking them Just yet. Still waiting for the head test. And had some other things going on we wanted to settle down first. Over the years I have had many tests, scans etc so that is good too… gives them something to compare to.
On a regular basis and for years have taken multi vitamin, b complex, d3, vitamin e, calcium, and omega. Since my hip replacement I will,say I have gone down hill physically. It went well and they said I had an awesome recovery…poster Child of hip replacements. I was an active person, gym, though not as much as prior to working, a walker, and at home if no gym still exercised. I think that Covid shut me down. My daughter is the opposite. She couldn’t stop doing things, painting, purging etc. I was like that when I was working and as a young mother. I became a bit more reclusive after Covid. I do not like shopping, husband does most of that thank heaven. I think too when a person has been a go getter and worked from young years to 70: And then StopS and stay at home for whatever reason, it’s a trauma. Seriously, after last seizure activity I was home, didn’t go back to the office, and I probably never will even for a visit. That’s not me. MostLy the not introducing new sales rep to my clients of many years, not easing out, just over like that, shut the door, has been extremely difficult. On top of the hip developed shingles, so it’s been really stressful. Probably all contributing to additional seizure activity. .
Then there’s the aging which I simply don’t agree with. Lol Pastor friend once told me “old age isn’t for sissies” !

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Hello, I've just picked up your post here and not looked for Jake's response. I'll come back to see what has taken place in the next 24 hours.

If you don't already know Jake will give you an excellent response that can be trusted.

I'm 64 and have had epilepsy since 22. Dilantin was one of the first I used, for 4-5 years. Your mention of Dilantin having side effects was the story for me too. It's one of the first 5-6-7 drugs used and is, (Jake can set me straight), not used alone or very much at all any more.

I just lost my primary care MD after 33 years, or can get him back for *1800 a year, as a VIP I'm told by his office. It's something that is changing in the wonderful healthcare system America affords (the wealthiest I've heard too). Probably 80% of the primary's will be gone in the next 5 years, and $2100 by then. I haven't spent any time on it yet. Sounds like you do not have a neurologist? A primary care MD is (although you go your meds from him?) not a good idea, (again Jake?). Unfortunately I have a neurologist 60 miles away not really qualified either, probably a C and D student. I'd read a lot of reviews from his clients, good and bad and judging for yourself because not all are accurate. I live in a town of 700k and there is really nobody here, total of 6.. My current I keep because I'm, by my definition, 90% controlled. He still is always anxious to try something new. That comes with a C/D student and he's 39-40, a young buck in neurology practice for most. Now that I've depressed you a bit, I'd keep using the Dilantin while doing your research, because it's cheap as I remember. And, if you are even 75-80% controlled, it's another reason. Jake can also comment on just how much of the mass of epileptics really are 100% controlled. Richt now I use Limictal 500mg only, 600 is getting a bit high, low dose probably 150-200 and with some other. I haven't had a med or dose change in 7-8 years, and from 400. Lamictal over the counter without any assistance is around 3000 a month. With Cigna Medicare 35 but I have to go through a contract provider, GSK. That company is hell for paperwork in the beginning

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