You are welcome. I wish the best for your son. Make sure you tell your insurance you are looking specifically for a pediatric neurologist. When I was young, they assigned me with an adult neurologist and a lot of what my parents should have been told about or services that I needed we were never told about.

I am 45 and I have had bilateral tonic-clonic, complex partial, and simple partial seizures in my lifetime. Thankfully, my medication is working well and everything is under control. I have some complications, but it is more negative side effects of medication and other chronic illness complications.

@DefeatingEpilepsyFoundation I have had the confused crying seizures my whole life. No tumor, healthy brain, healthy development on time. I was diagnosed with generalised epilepsy when I had my first tonic clonic seizure at age 15. The medication stopped the tonic clonic seizures but the crying confused seizures has never stopped. I'm 43 mid January. ​

@@SoniaJbrt there are many situations in which neurologists cannot pinpoint why someone has developed epilepsy. I'm glad they got the tonic-clonic seizures under control. I had them from 2-17 and it was awful. I'm sorry the crying confused seizures are still occurring. I hope in time they can find a solution. Along with taking medication, I do things such as exercise, art and music therapy, and meditation to keep mine under control. I find that medication helps greatly, but it is only one piece of the puzzle. If you haven't tried any stress relief techniques, I would suggest trying. I hope this helps.

I'm so sorry you are experiencing this. Gelastic and dacrystic seizures are rare and a lot of times they are not recognized. Antipsychotic medication has a lot of horrible side effects. Years ago, a former doctor tried to put me on one and I refused because being on anticonvulsants is life draining enough, I was not going down that path. I'm so happy you were able to get off of them. Epilepsy can appear at any age in life and a lot of times doctors do not figure out why. I can understand the fear of asking for help. I would talk to your primary doctor and ask for a referral to see a neurologist or even better an epileptologist. Let them know your history and what is happening. If a neurologist can do an MRI and EEG to see if they can find anything that would be a start. When finding a neurologist, please look at their reviews. Some neurologists are great but I have had plenty that lack bedside manners. The two I have had that were great, they got down to business and helped me reach my goals. Also see how much experience the doctor has working with patients with epilepsy. A couple of my former neurologists were more focused on conditions like Parkinson's and stroke recovery. They were good, but they really didn't understand what I was going through even though they wouldn't admit it. If you have any questions, please email me at info@defeatingepilepsy.org. Even if you feel overwhelmed and just need to talk, we are here to help you.

I would bring it up to your neurologist. Any time you have a new symptom or any changes, it is good to document it and let the neurologist know. I found the best thing to do is to keep a journal that way you don't forget what happened or the date. Take it with you to the doctor and let them know what is going on. It could be a dacrystic seizure or it can be depression. I'm not a doctor so I cannot give advise, but as someone who has battled epilepsy for forty years, make sure you communicate with your doctor and advocate for yourself. I wish you the very best and you can email me at nboehm@defeatingepilepsy.org if you have any questions or just need to talk. Take care, Natalie

Absolutely bring it up. My daughter had gelastic seizures for years and then it was like a switch flipped and she started having dacrystic seizures. It took us a long time to realize the crying spells were seizures.

This is Matt St.John and I'm wondering if you 🤔 have dicrystic in your / their adult years ... symptoms are: crying or 😬 grimace, absence from reality 🤔 or even the other side fully secured tongue bit/dropy and floppy 💾 are possible for HH. SEARCH FOR It...scheuze me. Torrettes and or torrents.

@@83shaunam Did you go for the surgery or were they controlled with meds?

The doctors can order an EEG to see if they can detect where the abnormal brain activity is coming from. If they suspect there is any scar tissue or injury to the brain, they will order an MRI to see if they can find anything out of place. Has the doctor done any tests in the past?

@@DefeatingEpilepsyFoundation thanks for replying. First 4 yrs ago, I thought he had headaches so they ordered an MRI w/o contrast and said it was normal. Years past and the headaches, weird laughing and excessive crying got worse and he began to fall down or drop to the floor. Dec 2021, he had first EEG with new neurologist and it detected abnormal brain activity in the right frontal lobe. He started epilepsy medicine but he has extreme side effects and we currently on the 3rd one. Not sure what to do - another MRI or a MEG scan.

@@profmj7630 they would do an MEG scan to pinpoint where seizure activity is coming from. If it is coming from the temporal lobe and his seizures are considered drug resistant, surgery may be an option.

@@DefeatingEpilepsyFoundation thanks so much. I will definitely discuss this with his neurologist

@@profmj7630 you are welcome. If you have anymore questions or need help finding any information, please let me know. I am happy to help.

Gelastic seizures can be treated with medication or a combination of medications. There is no cure for epilepsy, but it can be managed.

@@DefeatingEpilepsyFoundation I am currently taking keppra but it has t changed anything in my laughter. Should I take another brand?

@@divinesedonu8341 I'm not a neurologist so I cannot advise when it comes to treatment. I would talk to your physician and let him or her know that the Keppra is not working and is there another option. Good luck with everything, I hope you can find something to help. You are welcome to email us at info@defeatingepilepsy.org if you have any questions. We are happy to help.

@@divinesedonu8341 I would ask your doctor. When it comes to medication, what works for some people may not work for others. I have never been on Keppra so I can't say how it is. If you feel your treatment is not working, please let your doctor know so you can see what other options there are available.

Are you working with an attorney to get her SSDI? Epilepsy is one of the hardest conditions to get disability for. Most people I know, unless their epilepsy was severe, it took a few years to obtain benefits. I have epilepsy due to a TBI and have PTSD so I can relate to your frustrations. One thing I would suggest is contacting the Epilepsy Centers of Excellence (ECoE) that is part of the U.S. Dept. of Veterans Affairs. They have caregivers support and they may be able to get someone to help assist with care. The website is www.caregiver.va.gov and their support number is 855-260-3274. I hope this information helps.

Why are you the bestest 💓

Iknoy

@@vonleek8645 glad I can help. I wish you the best and I hope they can arrange some help for you and your wife.

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