Adults with absence seizures

@babycat I took lamictal for 8 years and it kept things managed until the blephraspasms started and I eventually had to stop the lamictal after discovering it was a major part of the cause. It's a very rare side effect of long term use. I'm on an extremely low dose of Keppra now that is partially effective but it turns me into a monster with a vicious temper. I'm about to combine it with briviact which has a similar side effect, and pray it doesn't make my temper worse. The side effect of the meds is why I'm looking at RNS. I don't understand how you know your seizures are getting worse if you are unaware. I know my condition is worse because my cognition is worse. My EEG and PET scan showed a lot of abnormal slowing (like the build up to a seizure) that never resulted in an actual seizure but does damage none the less. The slowing doesn't interfere with my activities or awareness as I don't know it's happening and nor would you if you were speaking to me at the time. Retiring will reduce my stress and hopefully reduce my seizures.

@absentsenior
My pleasure!
I'm so happy to hear you were able to continue working after your epilepsy diagnosis and treatment. What strength – God bless you!
Unfortunately, I couldn't continue my career after my diagnosis. I was working as a career coach when I was diagnosed in 2019 at age 48. I began noticing that clients would remind me of things they'd already shared with me – I wasn't retaining information the way I used to. I felt so embarrassed and realized I could no longer provide the quality of service my clients deserved, so I stepped away, hoping to return once I felt better.
After some time in treatment, I realized that returning to career coaching wouldn't be possible. But I've found new ways to stay active – helping with my father's business and caring for my mother, who has Alzheimer's. And earlier this year, I was invited to be a mentor for our group at Connect, which brought such a huge smile to my face! As you and doctors have well said, keeping ourselves active is like exercising a muscle.
Like you, medications at first took away my joy and laughter with all their side effects. I also had eye problems with one AED I was on in 2019/2020. I should mention that I've been very sensitive to conventional medications since childhood and was mainly treated with homeopathy, which worked well for me until my epilepsy diagnosis.
A real turning point in my journey, besides finding my neuropsychologist, was finding the right doctor – one who truly listens and respects your body. I'm so happy to hear you had the same experience at Mayo Clinic! I found my right doctor in 2021 (I'm in South America), who started treating me with CBD oil and other alternative approaches, including seizure trigger management and lifestyle modifications. This reduced my seizures significantly with very minimal side effects and allowed me to restart my life. Unfortunately, after some very stressful events – my father was diagnosed with cancer last year – I experienced my first tonic-clonic seizures and had to add an AED to my treatment, keeping it at a child's dosage because of my high sensitivity to medications.
It's such a comfort to connect with someone who truly understands this journey – thank you for sharing your story with me! I'm praying that the doctors at Mayo Clinic will find a solution that brings you more relief and comfort. Please keep me updated!
Have a very nice week!
Chris

@babycat
I don't think we've connected before – nice to meet you!
I'm a big fan of Japanese acupuncture myself – it's been really helpful for the insomnia caused by some of my AEDs.
I came across information that B vitamin deficiency from AEDs can trigger burning mouth syndrome. Have you talked with your doctor about this side-effect? It might be worth having him or her check your vitamin B levels in your blood. If your levels are low, supplementing might help ease this side effect from Lamictal – definitely something to discuss with your doctor.
Chris

Hi, I’m 19 and still waiting to grow out of them (really really hoping so so that I can drive) had had a few tonic clonic in the past most recent being June and the one before that 18 months. I’m on lamotrigine but only see the neurologist once a year and my next one has been pushed back 7 months! And I don’t seem to be able to communicate much with him. Is there anything I can do to help stop like keto diet..does that help?

@ambo2006
I'm sorry to hear about your seizures. I have had epilepsy for 60 years.
What age did you start having absences?
The chance of absences stopping are best when you only have absences and no other type of seizures and they started when younger than age 9-10. While you wait for your seizures to hopefully stop, you need to do all that you can now to get them under control because seizures can become more frequent and severe if not controlled. Although you may still outgrow your seizures.
If your telling your Neurologist that you're still having seizure and he doesn't adjust your meds, either by increasing your lamotrigine or adding another medication to it, I would seek out a new Neurologist. Have you ever tried adding another drug to your lamotrigine or increasing its dose? If you don't want to change doctors, you may ask your doctor about adding an additional medication perhaps Zarontin which is quite effective for absences. Keppra and Depakote also help absences as well as other seizure types. Zarontin and Depakote are first generation drugs, and some doctors shy away from prescribing those drugs.
When taking generic drugs, you should always make sure that every refill is from the same manufacturer. If I were you, I would also switch to an extended release version of your medication if your not already taking one.
After 45 years of uncontrolled seizures, my medication became unstable and had to be discontinued. My last neurologist insisted I take the brand name and the extended release version and my seizures stopped.
The ketogenic diet may help but you'd need to ask your doctor about if its a reasonable option for you. Also its not an easy treatment to follow. It takes a lot of dedication and perseverance.
Good luck,
Jake

I'm 25 years old and I've been dealing with absence Seizures or 5+ years now, and I have tonic seizures once in a while. I think I've almost tried every medication now and now I'm trying to combine medication and I'm still having seizures.

I'm curious if anyone has tried a keto diet. Has anyone tried that yet and does it help?

@cancersurvivor05
Welcome to our group at Connect!
I'm so sorry you've been going through this. I've also struggled to control my seizures (mostly focal ones), so I truly understand your frustration.
There's a lot of truth to the gut being our "second brain"—our diet can have a significant impact on seizures. The ketogenic diet is an established treatment option for refractory epilepsy, and while I know people who've had good results with it (though unfortunately none are currently active in our Connect group), I understand it's quite a challenging diet to follow. I haven't tried it myself yet.
I have made several dietary changes that have really helped reduce my seizures. For example, removing gluten from my diet reduced my seizures by about 60%. I've also switched to a much healthier overall diet, eliminated simple carbs, and avoid eating any carbs at dinner.
I'd like to share the Charlie Foundation with you—it's a highly respected resource for information on the ketogenic diet for epilepsy patients: https://charliefoundation.org/.
Have you had a chance to discuss the keto diet with your neurologist or epileptologist? It might be worth exploring with him/her to see if it could be a good option for you.
Wishing you better days ahead!
Chris

Yes I’m 58 and I didn’t start until I was in my early 50s

@ambo2006 I totally forgot Keto is supposed to help seizures. Does anyone know why? I’ve had more seizures in the last week than I’ve had in the last couple of years. I’ve had my doses changed and it didn’t help. Boo! Maybe I’ll start keto After Christmas. It’s the one day a year where everyone is eating the egg casserole, the cinnamon pull apart bread, etc. and I eat a big piece of chocolate cake with my coffee. I’ve done this for years and my relatives. Still look at me like if they can’t believe I’m doing it and every year when they ask why I respond with, “because I can.” so much of a life is a choice. If you celebrate the holidays, I hope they are great, happy, healthy, and full of cake.

Hi @irishgirl2005
I'm so sorry to hear you've had more seizures this past week than in the last couple of years. Something similar has happened to me in the second half of this year. I know how unsettling this can be.
Though the keto diet is well known for helping reduce seizures, especially for people with medication-resistant epilepsy, it's not yet fully understood why it helps. Reduction of brain excitability seems to be part of it.
If you do decide to explore dietary changes, I'd suggest making them one at a time so you can really learn what works (or doesn't work) for you. Medical supervision is important too. When I decided to go gluten-free, I kept everything else in my diet the same for a whole year before introducing any other changes. Taking out gluten alone was challenging enough and required a good dose of perseverance, especially in those first few months! If I'd tried to change multiple things at once, I probably wouldn't have stuck with it.
Did anything particular happen this past week when you had so many seizures? Stress, less sleep, more anxiety, or changes in your routine? These can all be triggers. Learning my own seizure triggers has been really helpful in managing them.
Thank you so much for your holiday wishes, 💜. May this coming year be filled with an abundance of well-being, resilience, joy, peace, and love. 🙏🙌
Chris