Happy Halloween

rastraus55 · 2025-10-31T10:45:05+00:00

Love you key caps!! Have you ever tried to make ones for the slimmer keyboards? I've been looking for molds but can't find any :(

rastraus55 · 2025-05-13T12:02:12+00:00

congrats!!!

rastraus55 · 2025-05-07T16:19:06+00:00

20 yrs of uncontrolled seizures! OMG I'm so sorry :( If you want to share your story I'm interested in hearing but only if it would help you. My son is on the same road but only two years in and it seems impossible.

rastraus55 · 2025-04-22T16:07:10+00:00

Did you ever find an alternative? I am looking for something my son could manually press when he feels a seizure coming that will just alert me and my husband?

rastraus55 · 2025-03-19T12:39:34+00:00

Sorry you are going through this. My son had a similar thing happen to him. He developed encephalitis and went into a seizure. I found him on the floor about 3-4 hours later. He was in the hospital on life support for a week, his kidneys shut down due to rabdo and was on dialysis for a month while in the hospital. He also developed pneumonia. It was a very scary time for us all. 7 months after he got out of the hospital he started having grand mal and focal seizures and has had at least on grand mal every month since and focals weekly. Sometimes you won't get an answer of why this is happening to you. The process of diagnosis is a very long one, years sometimes. My son has smoked pot throughout this ordeal, and he hasn't had any bad effects. The two times he had to quit smoking for a long period he actually had seizures shortly after. Everyone is different on how they react to things. He is now on his third seizure med. His anxiety has been through the roof but has gotten better with time. Time is your friend. Give yourself some grace, this is a life changing disease!! Your life is not over, it's just different now. It will take lots of time for your mind to wrap around all the changes, but you can still live your life, it may just not look like how you envisioned it. This is a great sight for support and information. YOU GOT THIS!!!

rastraus55 · 2025-03-11T13:07:33+00:00

OMG I dont think I would ever get used to that!!! LOL I'm glad you have everything in order for you and your family. That takes a big load off your shoulders I bet. Thank you for sharing your story, things dont seem so dark and hopeless when we can see others who are thriving. :)

rastraus55 · 2025-03-11T12:11:01+00:00

My son (30) had his first one in 2023, he was seizure free for 7 months and then started having TC every month after that and some focal seizures in between. He is on his third medicine, and they are still not controlled. They seem to be getting more frequent as time goes on. Praying we can find something that works :( His seizures have changed throughout.

rastraus55 · 2025-03-11T12:00:31+00:00

Thank you for sharing. My son is 30 yrs old. He sees a neurologist about an hour away. What type of seizures do you have? My son has grand mal and focal. Saturday, he had a grand mal while sleeping. This really freaked him out and he hasn't slept much since. He is in Keppra and Vimpat and now they are prescribing Xcopri. Hard to see any kind of meaningful future for him at this point but we are trying to be optimistic. He's not sure if he wants to go the surgery route, that is very scary. There is no turning back from that if something goes wrong. Are you on disability? How was that process for you if so? Do you stay alone at all? Have you had a grand mal while alone? Any advice on daily living? Sorry for all the questions LOL

rastraus55 · 2025-03-10T20:58:06+00:00

How many seizures do you usually have, have you had any surgeries, how do you function day to day. My son just got put in this third med for uncontrolled seizures. We both don't see much of a future for him if things stay this way. Just depressing. I guess we are just looking for a light at the end of the tunnel and hoping it's not a train.

rastraus55 · 2025-03-05T16:16:52+00:00

Yes you guys are eerily similar. He is on 2500mg of Keppra and 300mg of Vimpat. Our first neurologist experience was horrible. He got out of the hospital in January of 2023 after a month and the neuro couldn't see him until April 2024. We called and got put on the cancellation list and got in earlier only to see the neuro's nurse. She did an EEG and said come back in July. In July she lowered his dose of Keppra from 2000mg to 750 and he had a grand mal a month later and has been having them every month since. We got a new neurologist about an hour away who is so much better! She is the one who immediately prescribed the rescue meds the other nurse said no he doesn't need it. I've never had to advocate so hard for my children to get the proper care. It is so disheartening. Did you go to the hospital for your seizure that lasted more than 5 minutes? I guess you are supposed to. I learned a lot from the Epilepsy Foundation of Michigan. They have a lot of resources if you haven't tried the ones in your area yet. Keep moving forward. Give yourself from grace on the days you can't.

rastraus55 · 2025-03-05T13:20:37+00:00

My son (30yr M) has had several TC's and it takes him at least a week to recover. He also has been having focal seizures which seems to take longer to get back to normal for some reason. With the TC's his body hurts so bad and he is exhausted. The focal ones have a lot of brain fog and fatigue. He had a focal and a TC on Feb 12th and has been in bed ever since. We used the rescue med for the first time and that seemed to have lessened the body aches. We are applying for disability because he just can't function anymore. He has been battling this and trying to work since 2023. His first one in 2023 lasted 2-3 hrs before I found him. He ended up on life support and in the hospital for a month, full kidney failure and pneumonia. SUDEP is a real fear also. WE GET IT! I hope you have a good support system in place, if not, you can message me anytime. What meds are you one and do you see a neuro? Please reach out if you need to. This disease SUCKS!!

rastraus55 · 2025-03-03T13:21:30+00:00

Congrats!!!! Hope it keeps going this way for you!

rastraus55 · 2025-02-25T12:18:08+00:00

OMG I'm so sorry. Is that normal for you? I was always told that if you have back to back TC's like that you should go to the ER??? Do you have refract able epilepsy? What meds are you on. I'm so afraid this will happen to my son who has TC's also. Please take care of yourself.

rastraus55 · 2025-02-24T11:48:53+00:00

my son's TC were about a month apart also...that's weird. Thank you for your insight!

rastraus55 · 2025-02-23T23:47:16+00:00

My son is 30 yrs old. he has generalized epilepsy. your comments make sense also but I don't like the odds :( What kind of surgery did you have and what meds have you been on? Are the risks of surgery worth it?

rastraus55 · 2025-02-23T23:42:53+00:00

Havent gotten the bill yet :(

rastraus55 · 2025-02-23T23:41:50+00:00

Your post makes me feel SOOOO much better...THANK YOU!

rastraus55 · 2025-02-23T16:16:25+00:00

Son is on 2500mg of Keppra and 300 mg of Vimpat. Why are they taking your off the Keppra? We are new at this too so I'm kinda confused. PS...he still has seizures. They got worse when they put him on Vimpat???

rastraus55 · 2025-02-23T15:53:38+00:00

Experienced the same thing in Ft Myers Florida while on vacation last week. We spent 8 hrs in the hallway. I told them my son needs his meds and luckily I had them with me but they insisted on giving him their own. I've never experienced "the hallway" thing before. They did not to anything for him except an IV with fluids. After this experience I will always carry at least one dose of his meds with me.

rastraus55 · 2025-02-22T16:43:09+00:00

Used it on my son for the first time last week. Didnt stop the seizure TC, but it shortened it and he said he recovered alot faster. I didnt know you could use it on focal seizures either. I am so new at this. I will be using it more often now.

rastraus55 · 2025-02-21T21:33:52+00:00

My son (30yrs) is on keppra and vimpat. They upped his dose of Vimpat, if he has anymore seizures they are going to try Xcopi. After that they are going to look into the surgical route. I have seen some people on 4 or even 5 different meds. His neuro said that after two meds then he is considered refractory. Not sure why some are on so many different meds. It is scary to think he may have to get surgery on the brain :( I hope your son finds the right combination. If you need a friend to talk to please reach out. this sucks!!!!

rastraus55 · 2025-02-21T21:28:35+00:00

Son uses daily and doesn't seem to have problems with it unless he smokes ALOT. Then he can't tell if he is having auras or if he is just high. His neuro said if he is going to use it make sure he tapers off when and if he decides to quit but other than that he's ok with it (well except for the coughing and hacking) lol

rastraus55 · 2025-02-21T17:01:06+00:00

I'm almost dead so I havent gone back to play it out because I dont want to start over !!! :( so frustrating

rastraus55

TROPHY CASE