What to ask at first neuro appointment?

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Hi there,
I sm wondering if anyone has any advice on what to ask at my first neurologist appointment, which is on Sept 9th. I had three focal seizures in 12 hours two weeks ago, but I've been having weird deja vu all summer long (I just thought the pandemic was making me lose my grip on reality!). My seizures started with the weird deja vu (like I was reliving a dream, or about to realize something about a dream or an actual memory...very hard to describe but I couldn't figure out if it was real or a dream), then my left arm went numb, then I was so dizzy and nauseated that I vomited. Like being pulled into the ocean or something. Each one only lasted about a minute. My MRI came back normal. I've also been waking up biting my tongue since last December. I'm worried I'm going to bite my tongue off so I have been wearing nightguards. The ER doc put me on 500mg of Keppra twice a day and I haven't had a seizure since. I assume I'll have an EEG next? Just feeling scared and overwhelmed and would be so grateful to hear other experiences. And if anyone has any advice on what to ask at my first neurologist appt, I'd be so grateful. Also how long did it take you to get diagnosed? I'm 40 so they did my MRI super fast....
Thanks in advance,
Snug
 

Porkette

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Hi Snug,
Welcome to CWE! You may want to ask the neuro what tests should be done like an e.e.g. CT scan, PET Scan, Spect Scan and maybe a video e.e.g
where they will have you on camera so they can see the seizures happen. Another thing you may want to ask is if you are having "seasonal seizures"
They are seizures that happen more at certain times of the yr. for a person. I have more in the fall and winter compared to the spring and summer
do to the lack of seritonin that time of yr.
Ask your Dr. if the seizures are hormone related or possibly do to low pressure in the weather. I would also ask the Dr. to do a DNA test by doing
that they will be able to find the best seizure med for you with the least side effects.
Sometimes tests will come back normal and that's because the damage is to deep in the brain for the test to show anything. This happened to me
before I had brain surgery to reduce my seizures. My Dr. thought I only had a problem on the right temporal lobe but when they cut into me they found damage on the frontal lobe (forehead) and on the left temporal lobe that not a single test showed.
You mentioned you have been waking up biting your tongue this could mean you are possibly having seizures in your sleep which are called
myoclonic seizures. I had those but didn't realize it until my Dr. did a sleep study on me along with an e.e.g.
Ask your Dr. if cell phone use could be triggering seizures. I found out if I'm around a lot of people using their cell phone at the same time
it will put me into a seizure do to the frequency of the cell phone. You may also want to ask if you are photosensitive which means looking at
certain colors or flashing lights can trigger seizures.
Dizziness is often part of a seizure but find out if it's being caused by low blood pressure or not enough sugar in your body. Stay away
from anything with nutra sweet in it because that causes more electrical activity in the brain which in turn can trigger seizures for some people.
Get a calendar and start keeping track of the seizures and write down what time the seizure happened along with the type of seizure you had
by doing this the Dr. may be able to see a pattern in your seizures as to what time of the day/night the seizure happens or what days of the
month. Also take note if there's a low pressure in the weather or you are under a lot of stress and you are tired these can trigger seizures
for many people. I wish you the best of luck and May God Bless You!

Sue
 
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Thank you so much for this! I feel so desperate to talk to other people right now. No one I know has any experience with seizures etc.
 

Porkette

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Hi Snug,

I forgot to tell you that you may want to ask the neuro the cause of your seizures. Often they are genetic, or can come from drug or alcohol abuse,
along with a bad blow to the head or a bad scare. Also difficulty at birth like lack of oxygen can sometimes cause seizures.
Another thing you may want to know is you may want to see an Epileptologist which is a Dr. who specializes in epilepy. You can find these
Drs. at really big hospitals or University Hospitals so if you aren't pleased with the neuro ask your family Dr. to refer you to see an Epileptologist.
Wishing you the Best of Luck and May God Bless You,

Sue
 

valeriedl

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Make sure you tell him everything that's been going on in as much detail as you can. Write it down so you can make sure you don't forget anything. This might help in asking him things that you would and could need to ask. I have woke up with my tongue chewed up a few times and I know I've had seizures in my sleep.

Discuss having another MRI since the one you had was done quickly. The thinks that Porkette have said are very good too.
 
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Thank you both. I feel very emotional and am so grateful for the replies. May I ask why you suggest another MRI?
 

CQ:)

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Hi SnugSamson
Welcome to the forum.
I can imagine it must be scary and you must have so many question after just being diagnosed.

I have had epilepsy since I was 9 months old but had a 21 year gap and my seizures returned when I was 24.
When my seizures returned the drs at the hospital didn’t muck around, I spent the night in hospital and was referred to a neurologist the next day.

It is probably better to have someone with you who has witnessed your seizures if you can or answer any questions you’re not sure off. I used to take my mum as she was the one who knew my epilepsy the best but I’ve since had surgery and see a different neurologist. I do teleconference with my current neurologist as he’s in the city where I had my surgery.

As the others have suggested it is best to keep some type of diary to keep track of your seizures with information like when you had the seizure, how long it went for if you know, triggers that you can think of. Even those feelings you described where it was like a dream, I have them during my partial seizures. Before my seizures I used to get dream like vision which were my auras, I could never explain it but knew it was a seizure when it happened. Now it sometimes happens while I’m in a complex partial. It’s not always the same dream but Similar.

They may want to do a MRI to make sure there is nothing that is causing your seizures. When I had mris they always showed scarring on my left front temporal lobe which was removed in 2011 but my seizures returned in 2013.
Your neurologist may want to go through your medical history to see if there is a history of epilepsy in your family.

Good luck with your appointment, hope it gos well.
 

Nakamova

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Hey Snugsamson, welcome!

In addition to the suggestions above, I recommend asking your neuro about what symptoms to look for or make note of. The deja vu and tongue-biting could be signs that you have been having seizures for a while, and it’s important to know whether or not the Keppra is doing a good job. If it isn't fully-controlling your seizures, then your neuro may want to re-evaluate your meds or dosage.

Also ask about potential side effects, and what do do if you think the Keppra is the culprit (it”s known for making some people cranky).

And ask your neuro how to get in touch if you have any additional questions -- if he/she responds to email that's a plus!
 
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Thank you, everyone! The neuro thinks it’s Mesial temporal sclerosis and has ordered a high res MRI and an EEG. Upping my Keppra to 750 twice a day because I had another seizure on Tuesday. Here we go….. not sure what I’m in for. Feeling kind of numb. Time to get a medical bracelet? Apparently I can drive again if I don’t have a seizure for three months… not sure I’d want to risk it, frankly.
 

Nakamova

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Good luck with the tests, I’m glad your neuro is being proactive. I hope the higher Keppra dose brings the seizures under control.
Keep us posted, and keep asking questions anytime.
 
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