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Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance
I love listening to music and i have a few songs i listen to when it's a bad day. I'm looking for some newer ones if anyone has one.
Some songs that I like:
#1. Mary J. Blige- Just Fine
#2. Owl City- Fireflies
#3. DiL- Don't Let Go
#4. Joeboy- Alcohol 🍸
#5. Kes- Hello 👋
#6. Efya- Best In Me
#7. Halsey- Without Me
#8. Selebobo-… read more
Theyve been trying to get me to get epilepsy brain surgery for years the older I get the more I'm considering it as I'm seeing how it's affecting my life as an adult. I just want to hear other people who have already done it experiences so I know what I'm getting into. Did it completely cure you? Did your seizures get worse? Any mental changes in personality or mood? How painful was it? Etc.
@A MyEpilepsyTeam Member mine was so long ago I forgot about the puffy eyes. I had that as well. You have the same triggers as me
Will it set off with excessive motion.
I have heard of this but I am afraid to shell out the money only ro have it not work. I'm waiting for it to be out a little longer so I can hear how well it works. If it works well, I would be more… read more
I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.
If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more
@A MyEpilepsyTeam Member Everyone gets nervous. Usually what helps is if you talk to your epileptologist/surgeon. From the surgeon, I learned there was a better chance of dying from a car accident… read more
i want to know as much as possiable about it they r talking about doin this on my daughter
In general what jobs do people with uncontrolled epilepsy do?
I have a degree and worked as a Counselor till I had a massive heart attack.
They plan on moving me to an Assisted Living Facility. I am deeply concerned about keeping the Oral Syringes clean and dry. I do a wonderful job, and the Nurse who visits agrees.
Does anyone know how this is dealt with in these places?
Leslie
Sue
Because they think I need a nurse all the time I would not qualify. However, I ended up ordering 30 extra new ones. It was15, but they come in packages of 2. I also gave the Doctor the… read more
When someone asks me, "What does epilepsy feel like?" I describe it as "having an invisible stalker with a TASER" and/or "being controlled by a sadistic puppet master". I also tell people my brain has been "rewired by a drunken technician".
Cathryn that is exactly what happens to me. I can hear and know what people are saying just can’t speak back. Get like an intense hot flash and nauseated. About 2-4 every 15-20 days. No meds have… read more
My Daily Medicine List
1- Dilantin ((Brand Name) caps 400mg. Per day
2- Lamictal (Brand Name) 700mg. Per day
3- Verapamil 80 mg. Per day
4- Zone gran 400mg.per day
5- Dilantin (chewable) 50mg. Per day
6- Tranxene 7.5 mg per day
7- Singular 10 mg per day (Asthma pill)
8- 2 puffs Advair 2 times per day (Asthma)
9- Sleep with BIPAP at night (improves sleep)
10- As needed to stop seizures 2mg Lorazapam
(Which is only given when I have clusters
Or a longer than normal seizure,… read more
Wolf2677, I am 59 almost 60-10/10/17. For me its been alternating medications and dosages. So far we haven't discussed surgery. Prior to my marriage seizures were about six weeks apart. I got… read more