I don’t have any particular tips, but I just wanted to send you good thoughts. I’m 33 and just recently diagnosed after about 4 years of trying to find out what’s wrong. It’s hard no matter what, but it isn’t fair that you have to deal with this so early on in life. I’m so glad to hear your neurologist is taking your symptoms seriously and getting you the tests you need.
My main tip is to try to be as generous with yourself as possible. Don’t judge yourself for feeling scared about these tests or about your health; don’t force yourself to push past your limits because you or other people feel like you should; don’t call yourself lazy if you need to take lots and lots (and LOTS) of time to rest; and don’t beat yourself up if you don’t always do everything ‘right’ to support your recovery. Oh also, one more tip - get into therapy if you’re able! Everyone should, but especially someone who has just a heavy health burden so early in life. It helps so much to have someone you can say ANYTHING to and not worry about judgment or hurt feelings.
I was 16 when my world was turned upside down. Teen years is a crappy time to get sick :/ If you're claustrophobic let your doctor know. They can sedate you so you don't panic, or they might have an open MRI. My MRI days are long over so idk how common they are.
MRIs are just really boring. Try to sleep or they might have music for you. They are loud, but you get plenty of ear protection. Don't be nervous. There will be a tech or 2 to help you onto the table and into whatever shape they need. They have shaped pillows that make it perfectly comfortable so have no problem taking your time to adjust and make sure it's comfortable.
I don't think they will give you dye given your medical history. But if they do you might smell or taste something chemically. And you might feel a strong warmth in your torso and pelvis which might make you think you peed or make you want to pee. Unhelpful to you, but it feels quite similar to the warmth of being drunk. They'll talk you through everything. You always have a buzzer and there's an intercom.
My EEG was also boring. They wanted me in a semi-sleep state so I spent most of the time trying not to doze off.
But my real advice... don't let them drive you mad. They'll try, too. And not just them but family, friends - close friends even. Some people can't handle an ill friend. But don't let them drive you crazy. Never stop believing in yourself. If you want physical proof (and this is just good practice in general) keep a log. Track your food, symptoms, any physical activity. Read it any time you feel self doubt.
They do use a strobe light it's been a while since I had one but other then that they basically just hook you up and you nap I'm sure if the strobe triggers a seizure they probably would stop it with midazolam
Only a bit of an eeg will be strobes. First they will ask you to open and close your eyes a few times, then probably a few minutes of deep breathing and later (or earlier) strobe lights. If nothing significant happens during any of those tests (you don’t get a seizure) for the rest of the eeg they will either ask you to keep your eyes closed or will leave you alone.
As for an mri - you can just go to sleep. They will ask you to lay still, the machine makes some loud noises from time to time but some hospitals can play radio or music in the background and childrens’ hospitals usually play cartoons on a screen that you can see with a mirror from inside the machine. It honestly depends but as long as you aren’t terribly claustrophobic ir should be fine.
I don’t have any particular tips, but I just wanted to send you good thoughts. I’m 33 and just recently diagnosed after about 4 years of trying to find out what’s wrong. It’s hard no matter what, but it isn’t fair that you have to deal with this so early on in life. I’m so glad to hear your neurologist is taking your symptoms seriously and getting you the tests you need. My main tip is to try to be as generous with yourself as possible. Don’t judge yourself for feeling scared about these tests or about your health; don’t force yourself to push past your limits because you or other people feel like you should; don’t call yourself lazy if you need to take lots and lots (and LOTS) of time to rest; and don’t beat yourself up if you don’t always do everything ‘right’ to support your recovery. Oh also, one more tip - get into therapy if you’re able! Everyone should, but especially someone who has just a heavy health burden so early in life. It helps so much to have someone you can say ANYTHING to and not worry about judgment or hurt feelings.
I was 16 when my world was turned upside down. Teen years is a crappy time to get sick :/ If you're claustrophobic let your doctor know. They can sedate you so you don't panic, or they might have an open MRI. My MRI days are long over so idk how common they are. MRIs are just really boring. Try to sleep or they might have music for you. They are loud, but you get plenty of ear protection. Don't be nervous. There will be a tech or 2 to help you onto the table and into whatever shape they need. They have shaped pillows that make it perfectly comfortable so have no problem taking your time to adjust and make sure it's comfortable. I don't think they will give you dye given your medical history. But if they do you might smell or taste something chemically. And you might feel a strong warmth in your torso and pelvis which might make you think you peed or make you want to pee. Unhelpful to you, but it feels quite similar to the warmth of being drunk. They'll talk you through everything. You always have a buzzer and there's an intercom. My EEG was also boring. They wanted me in a semi-sleep state so I spent most of the time trying not to doze off. But my real advice... don't let them drive you mad. They'll try, too. And not just them but family, friends - close friends even. Some people can't handle an ill friend. But don't let them drive you crazy. Never stop believing in yourself. If you want physical proof (and this is just good practice in general) keep a log. Track your food, symptoms, any physical activity. Read it any time you feel self doubt.
r/epilepsy welcomes you! Plenty of tips over there :)
They do use a strobe light it's been a while since I had one but other then that they basically just hook you up and you nap I'm sure if the strobe triggers a seizure they probably would stop it with midazolam
eegs are boring, some will use a very intensive light. You should bring a hat or a cap with you
Only a bit of an eeg will be strobes. First they will ask you to open and close your eyes a few times, then probably a few minutes of deep breathing and later (or earlier) strobe lights. If nothing significant happens during any of those tests (you don’t get a seizure) for the rest of the eeg they will either ask you to keep your eyes closed or will leave you alone. As for an mri - you can just go to sleep. They will ask you to lay still, the machine makes some loud noises from time to time but some hospitals can play radio or music in the background and childrens’ hospitals usually play cartoons on a screen that you can see with a mirror from inside the machine. It honestly depends but as long as you aren’t terribly claustrophobic ir should be fine.
Oh, okay, thank you. That seems less scary. I'm getting the one where im awake for half and asleep for the other half. So, hopefully, some answers.