I use slow-breathing and self-calming techniques. Once I have one, then I think to myself, "Calm down, slow down your heart rate, don't get over irritated and just stay calm". In other words… read more
I usually feel my seizures coming but I have not felt none of these coming I was standing up last night helping my husband and had one luckily he was right there or I would have fell. And if it wasn't for my dog I wouldn't have known to lay down for any of the others I don't know it's caused the uprise in my seizures or for me not to be able to feel these ones any advice on what's going on on what's going on or why so many? Is it normal to have spurts like this?
Do any of you use something that you smell or nasal spray that helps you disrupt an aura? My doctor prescribed Nayzalim nasal spray. After insurance, it's still very expensive. I didn't get it. I'm looking for other options.
Nyazilam works👍
The 2 ive used/seen are from the Uk. Very slow and pricey shipping(50-150 shipping) These pillow are thin and go flatter even faster, my son hates them. So im searching for breathable pillows available here in the USA. Once someone mentioned the purple pillow, but its heavy(10 lbs) and made of the foam core stuff. I looked at a buckwheat pillow claiming to be the most breathable. Another concern is adding a pillow cover can negate the breathability(cotton) I think silk fiber is better. Id love… read more
@A MyEpilepsyTeam Member Oh this is such a scary feeling which i understand completely. I think for the current time many people go without a pillow for safety and keep covers light/limited so they… read more
Dr.thinks my daughter has Lennox syndrome on top of costello syndrome.Can anybody tell me about Epidolex,or Nayzilam,he is starting treatment wih these.Any help would be greatly appreciated!!!
So, we are in the process if switching to a new neurologist for my daughter. We had our first visit this past week and he prescribed Nayzalom. My daughter Alicia has never needed a rescue med and I pray she never does
She is 28 and goes out in the community with two different aides, and also participates in Arc and other programs. I was told that noone is is allowed to legally give her the nayzalom in an emergency. I do not understand because obviously she would be unable to give… read more
Correct the Emt's that responded to my seizures in 21 laid on my back. Broke my L2 vertebrae.
Does anyone use a nasal spray as a rescue remedy ?I'm particularly interested in people who have partials as I would like to try it but someone would need to do it for me My awareness is poor then
Thank you so much Sweetnsimple. I do receive an infusion weekly It can be hard on the seizures because I get sick very easily. So I was just trying to say be real careful seizure wise when you get… read more
Have anyone taken this medicine or is on it.
What are side effects and how did you cope with it. Does the med work. Any information.
I'm on epilm at the moment but Zonisamide is slowly being added at the same time I'm slowly coming off eplim, so I'm having change over of med and wondered how it will effect me.
It have been making me very tired.
How is what I'm taking at the moment.
Morning... 600mg epilm & 50mg Zonisamide
Afternoon... 300mg epilm
Evening... 600mg epilm & 50mg Zonisamide
I like being on Zonisamide!
When you are asked to take medication in the Morning and Night when Label on the box, would you follow it to 12 Hours between taking it, or what would you think of Various time in the Morning and A Various time at Night? If you didn't have a set 12 Hour Period would you think people would have more Seizures, Because I use to work early at 6am up to Last February, but would take my Medication at 9pm for Night , so this would be over a 12 Hour Period.
I use lorazepam .5 mg when I feel an aura coming on and for me, it stops it completely. So far, I've been very lucky as I haven't had a seizure for over 10 years but I put it down to the availability… read more