Living with epilepsy - Introduce yourself & meet others

@carissadennery)
Welcome to Mayo Clinic Connect.
It’s great you have control of your Tonic-Clonic seizures.
Are you taking anything besides Keppra to help with the Myoclonus? How often do have jerks? What’s your Keppra dose?
Take care,
Jake

I am Carissa Dennery, I started having grand mal seizures at the age of 19 years old. I was untreated for 4 years because my husband at the time, divorced since 2011, refused to take me to a Neurologist. I was only treated when I went into the ER because I would have 3 in under 18 hours. I would have 3 or more grand mals a week. I finally saw a Neurologist in 2008 and grand mal seizures ended at the end of 2009. Dilantin did not work and after a year I started on Keppra. I also went away from Gluten in 2009. I tried to follow a Keto diet cuz I heard that it was supposed to help, plus I was learning about Celiac Disease. I still get myoclonic seizures and tremors, but no grand mals. I do have short term memory loss from all the falls and hits. I have gone to Occupational Therapy to help me get back to work and keep a job. I used to not have luck with keeping a job because of my memory loss and I was told by one company they wouldn't hire me because I was a liability. I have come a long way. I have had my current job for almost 1 year, they are so helpful at my new job.

Hi @heal33
Sad to hear that it seems hard to find a doctor experienced in CBD/Medical Cannabis therapy in your region. As I live in another country, I can not help you much with the recommendations of epileptologists with Medical Cannabis experience in the US. Sorry for that. But, perhaps the Epilepsy Foundation can help you with that? They have a 24/7 helpline that works very well!!! I have already made use of it.
What my doctor (epileptologist) always recommends is to test one thing at a time, so as to know what is working well on you. If you become gluten-free and at the same time start to use CBD, it will be difficult to know what is working or not on you. When I took gluten out of my diet, I maintained all the rest just as it was. Just change one variable at a time.
Santosha

Well Colleen, surprised to see me posting my health problems on this group? I thought so. You see, it wasn’t until my one neurologist finally listened to my latest seizure in March 4th 2022, did she order a CT Scan. All I can say is the results are not good. I believe I experienced another seizure but I cannot for the life of me remember the event. So here’s what happened on March 4th. I was up about 3am because I had to get a full body X-ray survey to look for bone lesions because of my possible progression to Multiple Myeloma from my MGUS. I was sitting on a chair in my kitchen, eating a bowl of cereal. It’s an “L” shaped counter and I was in the corner. I felt strange all of a sudden and quickly put the bowl on the corner. That’s when the seizure started. All of a sudden I started to get hot, then really hot like I was on fire. Next my eyesight stared to get all messed up like sparkly specks floating all around me. I got sick to my stomach as my head started to build up pressure. If it was my blood pressure, it was so high I thought my head was going to explode. I’ve had bp reading as high as 211/113, that’s stroke territory and this felt worse. And that’s when it happened. Everything stated to get dark as I was falling off the side of the chair. I get spontaneous blackouts(no warnings) but this was totally different. Then out I went. I don’t know how long I was out but I was on the floor. It was a seizure because I’ll go out under similar conditions.

The worst consequence from going out like this happened on 9/9/99. I was delivering newspapers from my car when it happened. I doing 45mph when it felt like my brain was be electrocuted. I swear I could hear the sound of electricity in my head and then complete silence, followed by total blackness. Unknown to me at the time, there was a very large SUV stopped directly in front of me but I never saw it till I slammed into it doing 47mph according to the Police. It was a near fatal accident and it was so bad, I was trapped inside the car and they had to tear the car apart to get me out.

I finally sold my car I own now because I’m afraid of killing someone I didn’t see because of seizures. After March 4th, I know I’m experiencing seizures but am still not being treated. It’s like I dropped off the face of the earth. What can I do to protect myself? What can I expect this to progress into, a tumor because my MGUS is causing all kinds of problems. How bad can this get? My eyesight is getting bad for some reason. My younger sister died from a Anaplastic Astrocytoma tumor at only 39yo. She had Grand mal and Petit mal seizures. So what do I have to look forward to if my bad guys or my heart doesn’t kill me first. Hope you are doing well. @becky1024

Santosha,

I am trying to follow your suggestion of gluten free more strictly. I am also trying to get my doctor to reduce dosage of one of my drugs as it has never had my seizures under control. It seems hard to find a doctor who would assist me with CBD therapy. When I brought up Epidiolex (think that's the spelling) I guess it hasn't been approved for adults only children with certain types of seizures--Dravet seizures. So she (the physician's assistant) said I wouldn't be eligible. The drug has CBD .

Hi @heal33
This Thursday, I have thought so much about you! We were without warm water here in our building on this day for maintenance purposes and I tried to take a cold shower. BRRRR, it did not work. Could just put my feet in cold water and gave up. Here in the southern hemisphere of the planet is wintertime by now. But I am splashing cold water on my face every day, introduced it after you recalled me of that suggestion of Dr. Cynthia Li.
I will read again what Dr. Cynthia Li says about the vagus nerve. Thank you for reminding me of that.
Have a great weekend!
Santosha

Hi @heal33
Thank you for your reply. Hope you have had a nice weekend :-)!
Regarding meditation, for me it would be hard just to sit down and be able to enter a meditation state. I practice traditional hatha yoga, starting with asanas/postures and followed by pranayamas (breathing exercises), which help me to prepare myself for meditation. Many people understand yoga as a practice of postures/asanas. Yoga is much more than that (there are 8 stages in yoga practice: starting with nyama, yama and asanas and ending with samadhi). The asanas and other techniques are just tools to access more your inside and to help you to reach a meditative state. Those tools help you to focus on your body and control your mind. Even so, my mind still escapes. It is a training.
Putting my yoga experience in words would limit very much this experience. The best is to try and see if it is something for you.
Have a nice week!
Santosha

Santosha,
Guess I should look it over for more suggestions. As I mentioned she talked about the vagus nerve as one suggestion including gargling. I chew gum, hum and sometimes sing (when no one is around) which stimulate. You can also try a cold shower but don't know about that. I've heard you only have to splash water on your face (cold water). She mentions meditation which I have never really gotten much out of but don't know how to do it the right way. I think I should cut down on use of the computer as I am probably sensing the flashing light from it same as you would be a television. I think it is called photosensitive epilepsy which is not common.
Breathing is also part of the meditation which is important. Buteyko breathing may help.

Hi @jamessr and @kel1
I agree with you that epilepsy like other neurological diseases (i.e.such as Alzheimer's) has so many variables. I believe there is still much progress that needs to be done in the study of those neurological disorders by our conventional medicine.
It is sad to see that Medical Cannabis is still not much used to treat certain diseases. I believe it has to do with the pharma lobby, unfortunately. Though CBD has not controlled 100% my seizures, it has helped me to reduce them and I feel much better with this treatment rather than with AEDs. As I said, I prefer to have 2 seizures a month with the CBD, rather than no seizures at all, but to be unwell, sick and in bed like I was with Lamictal, Tegretol and Vimpat. In addition to CBD, I am on a gluten-free diet, which has clearly brought benefits in my seizure reduction. @jamessr has your son tried any kind of diet to see if this might be beneficial for him?
Laser ablation as well as conventional epilepsy surgery seem also scary to me, but unfortunately there is no other option for certain patients. Therefore, for those that can not control seizures with AEDs (like it is in my case), I would try any other alternatives such as diet, CBD, Chinese, Ayurveda and Integrative Medicines before going for surgery.
Best of luck to all of us!!!!
Kind regards,
Santosha

@kel1, just to avoid any misunderstanding, my birth control pill does not cause seizures. they are caused by menstruation and hormonal variation. Therefore, I take a birth-control pill without any pause, so as not to get my period every month.
Santosha