Adults with absence seizures

@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

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?

@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

@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 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.

Is there anyone out there with Burning Mouth Syndrome? I suddenly got it 5 months ago. And my life is completely recked! Is there anything that has helped? I’ve already seen an internist, dentist, oral surgeon and an oral medical specialist. Not ready to start meds yet. I just started acupuncture which I heard can help. I’d like to try a holistic approach before meds.

@absentsenior I also get absent seizures. I was lucky to work till retirement 4 years ago. Within the last 3 years they have been getting worse with increased frequency. What meds are you on. I’m on Lamictal and Fycompa.

Thank you for the feedback. I've worked as a Travel Agent for 45 years and am still doing so. I've been amazed I've been able to continue to work. Doctor tells me my job is like muscle memory after so long. It's getting harder each day and I can only hope I can make it to retirement in September. Three things have been the hardest. The first was to stop my family and friends from asking "Do You Remember?" They work hard at no longer using that phrase around me. The second has been giving up reading for pleasure. That stopped a long time ago and I now understand was the 1st indicator. It became exhausting to read. By the time I get to the end of a paragraph, I've forgotten the beginning and cannot maintain continuity. The last and almost the worst is who the meds have turned me in to. I've tried many of them and the side effects have been particularly bad. They've taken my laughter and joy away and made me angry and short tempered and caused blepharospams. Those involved shots around my eyes and lids. Eight for each eye until I figured out the cause and stopped that medication. I just hope the doctors decide I'm a candidate for RNS. I should find out soon.

@absentsenior
Good Morning!
Sorry for not replying before, I was on vacation last week.
Accepting changes, especially cognitive ones, is incredibly difficult. When I was first diagnosed, accepting epilepsy and all the changes it brought to my life was one of my biggest challenges. I truly understand what you're going through.
What made a tremendous difference for me was working with a neuropsychologist since my epilepsy diagnosis. In those earlier years, she helped me come to terms with my condition and the ways my life had changed. She also taught me strategies to work around my cognitive difficulties and introduced exercises to help me keep my mind engaged and active.
Have you had access to this kind of support? If not, I can't recommend it enough. Working with my neuropsychologist has given me the strength to keep moving forward.
Chris

@27angel we in this together doesnt have to be perfect our bodies went thru alot but we here I just seen the national they lost alot tears to tell me I am not alone with a differnt life all will saulte soon we will have our memorial of completness thsi is what my brain remember no spell check so I get it