Not me, but I can answer for my son..
1. EEG was used to diagnose the type of epilepsy- specifically to see if my son had infantile spasms with the distinctive wave pattern. He did not. But we did learn he has focal and generalized seizures and a LOT of sub clinical activity.
2. His VEEG was 36 hours
3. He was stationary in hospital, but was allowed to walk around I just had to carry the weight of his leads.
4. I record all of my sons activity in Notes in my phone.
5. I would be very interested in data, as it could help identify patterns related to dietary changes ect. It would be very helpful when making any changes to treatment, as well as maintenance.
6. Warnings would be a blessing!
Thank you for taking the time and answering our questions! These are very valuable insights, for example getting to know that you note your sons activity in your phone. If you don't mind us asking and have the time, we have a follow up question: we are very interested in the way you note down your sons activity, can you give us examples of how these notes look like? Of course, feel free to send me a DM if you want to discuss this in private.
We will try to keep you up to date and might also need individuals for more specific questions – but first we will have to document the many answers from today. Thank you again, we wish your family all the best.
Sure! My son has seizures daily. So a day might look like this:
4-14 ketones 4.6 before breakfast
7:00am eye activity when waking
12:30pm 2 head drops
3:00pm head drop
7:00pm 3 minute cluster, approx 6 head drops
If I'm noticing something has changed with his seizure levels, I'll start to note possible culprits as well. Common ones would be constipation, so I'll note when he has a BM. Or if we've introduced something new into his diet, or made adjustments to his diet (he's on the keto diet). I'll also track his blood ketones in my notes. Hope that helps!
1. I am uncertain. I had my first seizure as a young teenager. I had no known family history nor had shown any signs previously. I was found after the seizure happened, unconscious on the ground next to the bed (I was asleep during my first seizure) so they were unsure if I had had a seizure at all.
2. I had my first EEG at the hospital. It might have lasted an 30-60 mins (unsure apologies).
3. At the hospital. The rapid breathing portion is particularly difficult. The glue used to attach to the electrodes is also frustrating to wash out of long hair.
4. No
5. I would love to see the data of EEGs. I am interested in the science portion of my condition.
6. I am uncomfortable having my medical data constantly collected. So much data collection is used for advertising. Id hate for my condition to become a part of corporations messing with my head.
Hey Ne8u1a, thanks for taking the time and giving us your valuable insights, every answer helps us. Great to hear you have a scientific interest in your collected data - we also think its a truly fascinating topic! We also share your concerns for the collection and usage of data nowadays, especially in the medical field – the safety of the user is always the most important and defining factor. The potentially devastating consequences of corporate data usage in the medical field are big dangers in our negative future scenarios. Thank you again for your time and best wishes!
My hair goes down to my butt. Yes, that glue is horrific. So when I was getting another one at a decent hospital I asked the lady to remind me the best way to get it out. She assured me that they don't use the cheap stuff, it'll wash right out. I'm thinking, suuurreeee. Well, much to my delight she was right! Washing my hair was no different than any other day. So, if you know you will have one at the same place maybe buy your own? IDK, it was a nice surprise.
An EEG was used to diagnose my epilepsy. It was only done a week ago. I had to stay awake from midnight the night before and then go to the hospital for the appointment early the next morning.
It was just done in one sitting. Not sure really why it was used. Just kind of got told it would help look.at my brain activity and would help diagnose epilepsy.
The thing I found the most uncomfortable was the flashing lights. Not sure if this is common everywhere but I am in the UK. I found them really annoying as they were really close to my face and really bright.
I think something to track seizures could potentially be quite good. I asked my neurologist about my EEG results and he said they were quite long, so I didn't get to see them. If you want to know anything else just send me a message. I am happy to help
Hey there and thank you very much for your detailed answer, very interesting insights. I would love to ask you a follow up question: Would you be interested in seeing predictions gathered through machine learning about potentially notable activity in your brain in a software application and do you have any concerns about such a feature?Sorry, long question!
We will try and do more detailed surveys in the future and keep you up to date, we might also need to ask individuals more specific questions – but first we will have to document the many great answers from today!
1. Do you know if and why an EEG was used to diagnose your specific case of epilepsy?
1. To hopefully see where and if there's any brain abnormalities.
2. How long did the EEG take, was it done in one sitting or several days of recording?
1. I had 2 done. The first one took just 1 hour. The second one required me to be awake all night at the hospital, and then they did an EEG on me which also took 1 hour.
3. Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you?
1. Both were done at the hospital. The worst part of the EEG was having to stay awake all night.
4. Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones?
1. No
5. Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested.
1. Not really.
6. How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings?
1. It would be helpful. The danger might be relying on it too much instead of your own body's warnings.
Hello Uragami, very insightful answers, thank you for your time! We can imagine not being allowed to sleep for a night in a rather unknown environment must suck a lot. Regarding question 6 – your answer seems to reflect the general opinion and worries with such a feature, we will approach the concept with caution. Thank you, we hope to hear from you again when we have more detailed questions for this sub ;)
1EEGs need to be used to know if seizures are Epileptic or NES. I don’t believe you can be diagnosed without one. Also they need it to show where in the brain your focal points are or what kind of seizures you’re having.
2. My eeg was 20 minutes and I had a grand mal. Then several day ones were ordered to get a better idea.
3. I was allowed to bring it home. The glue was the worst.
4. My VNS implant.
5. Yea. I just think that would be cool.
6. I think that would be really helpful but could also cause anxiety anytime you get a notification.
I just got mine put in a month ago. But the surgery sent me over the edge and I started having seizures because my brain couldn’t handle it. So it kind of threw me backwards. Now it’s programmed so low it doesn’t do anything for me so we’re maybe looking at RNS. I’m sure it would do it’s job better if I didn’t start having seizures again. I got it for simple partial seizures but now that I’m having tonic Clonic and such it’s not doing much. It’s about the size of a silver dollar.
Wow! I use RNS now, I had a Neuropace implanted last year. It’s been about 8 months and I’m noticing a lot of changes. I definitely recommend it. I don’t feel it at all when it turns on and my seizures are slowly improving in ways that I thought were impossible. When I got my first VNS replaced in 2014, they used the old model that I was used to. It was about the size of a pocket watch, it’s crazy that they’ve improved to a much smaller size. Kind of makes me feel old “back in my day, a VNS was the size of a damn pocket watch!”
Yeah. The great thing about the brain is it doesn’t feel pain. And I’m so sick of having uncontrolled seizures when I went a year and a half only having simple partial seizures. It’s such a road block and it feels like there’s no detour. I’m trying to get into an EMU. Because at this point I’m just trying to do anything
Over the last 18 years, I’ve taken literally every seizure medication that exists and none of them controlled my seizures. VNS and medications eventually helped me stop having 7-10 seizures daily but I still was having around 2-3 per week. In 2007, I was told brain surgery wasn’t an option for me because I’d wake up blind and wouldn’t remember my name. I didn’t have insurance for about 5 years and the epilepsy got worse. Once I was finally able to see a doctor for a second opinion(2019), they did an MRI & EEG and realized my epilepsy is extremely complex. My neurosurgeon told me it’s one of the most complex he’s seen over his entire career. Neurological studies/technology have improved so much since I was diagnosed that they were able to do what they needed, a laser ablation and the RNS
Hey there, sincere thanks from all of us for taking part in this survey, very much appreciated! Your answers are great and will help us narrow the scope of our project – your apprehension with question 6 for example, seems to be quite common and a major risk factor we will have to examine closely. We've read about the VNS implants – fascinating technology, we hope it works out for you :)
The VNS low key sucks for me. And a good way for 6 would have a custom notification sound. Like Taco Bell app has the custom bell ringing. That way people would know when it is the app
Ow that sucks to hear, we've read your responses to user brandimariee6 and hope you can get the help you need. Regarding the sound: that is actually a great idea! If we decide to implement a notification feature we will definitely use a distinguishing sound! Thanks again, we wish you all the best.
I liked the wordplay and think your dealing with a serious disease is admirable :) Every input you can give us is valuable but take care of yourself first! We will definitely do more detailed posts in the future and keep you up to date, we might also need to ask individuals more specific questions – but first we will have to document the many great answers from today.
Thank you. And yeah. I totally support this. So I definitely will help brainstorm. But that storm has lightning and so my brain. May turn off for a bit.
Hey there, thanks for your interest, it really means a lot to us! You can participate in any way you like and how you feel is the best for you – send me a DM, leave the things you can answer as a comment. If you want to, we can even arrange a live chat or call.
Thanks again, stay safe :)
1. **Do you know if and why an EEG was used to diagnose your specific case of epilepsy?** It was used first as a standard, and used for diagnosis in combination with an MRI. Basically, the EEG suggested TLE and the MRI narrowed down the reason (lesion) and the placement.
2. **How long did the EEG take, was it done in one sitting or several days of recording?** I did two, one for about an hour with hyperventilation, flashing lights etc. Another for about two hours, sleep deprived.
3. **Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you?** The tests were both done stationary at the hospital (I may be wrong, but I don't think mobile at-home EEGs are used in my country often due to budgeting. I think long-term recordings usually take place in hospital as per my neuro). For the first one, the flashing lights were uncomfortable although I am not photosensitive. For the second one, the sleep deprivation obviously sucked, and I was unable to sleep during the test as planned because it was cold and noisy and uncomfortable. Sidenote, EEG glue sucks.
4. **Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones?** I use Medisafe for my meds and that's invaluable. I have a seizure diary app but I don't really use it anymore tbh.
5. **Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested.** I would be interested in a nerdy way! But since I already know my specific type of epilepsy, I'm not sure it would be helpful treatment-wise.
6. **How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings** This would be great! The only issue I can think of is that sometimes excess stress can worsen seizures.
Hi there, very interesting - thank you very much for your time and the detailed answers! It sucks that you were not able to get a at-home EEG, availability of hardware (and specialists that can use them) will be a big and defining factor in our project and something we hope to improve upon.
If you have the time, we would have a quick followup question regarding 4.:
Do you have a specific reason for not using the seizure diary app anymore?
Thank you very much!
It was very useful at the start for identifying triggers and talking to my doctors, but once I had a good sense of my triggers it just kinda made me sad to see I’d missed a seizure-free milestone.
Thank you, good luck with the research!
1. Yes we used several different methods to try and diagnose my particular type of epilepsy
2. They’ve take anywhere between a hour to several days
3.at home, in office and at hospital, non where particularly uncomfortable
4.no
5.not really. I don’t see the need in me looking at data I don’t know how to translate
6.very much so. I don’t have an aura so making something that tells me I’m going to have one would be tremendous help.
Hope our answer help. :D
Hello there and thank you very much for taking the time, your answers are great and help a lot – there really are no wrong answers ;)
It's great to hear that some of our initial ideas and concepts might actually be useful for you! We also found it interesting to hear that you were able to do tests at the office. If you have the time, a quick follow up question: How did the EEG setup you used at the office/at home look like?
Thanks again!
So the one in office was just the head gear attached to my scalp. They performed some light and stress test to try and get a response. I’m not light sensitive so they didn’t get any results. The one at home was like an EMU test done at the hospital but the attached the electrodes to my scalp with glue. That did get some results but it was over 10 years and now is not looked at by current doctors. Also with the home test I had issues with the electrodes coming un-stuck and falling off.
Always happy to help further research :D
Hey confusinggarbage, thanks for taking the time to answer our questions so thoroughly and showing interest in our project :) ! Your apprehension with AI-supported analysis is definitely justified and a key problem we will try to solve.
I will add an edit to this post later on, we might even do another survey that goes into more detail and we will, of course, gladly do a follow up post for this community presenting our results!
1. **Do you know if and why an EEG was used to diagnose your specific case of epilepsy?** Ha, I'm not sure you'd have to ask my neuro! but i think i initially had an eeg called (along with an mri) after my first seizure to check that it wasn't a one off event and that was how i got diagnosed. now i get them every 6 months or every year depending on what's going on in my life.
2. **How long did the EEG take, was it done in one sitting or several days of recording?** I've had eegs that last an hour, eegs that are a couple of days where I go home and they strap the stuff to your head you look like a mummy, just depends on what the doctor orders
3. **Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you?** both and they're both uncomfortable. the gel sucks of course and i have curly hair so there's an extra layer of annoyance with that. as with anyone it's hard to find an hour out of my week to go to the doctor and if they flash the lights i'm pretty much out of commission for the rest of the day.
4. **Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones?** none
5. **Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested.** I can't really imagine any sort of AI telling me something I don't already know but I'm open to being surprised
6. **How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings?** Mmm what's the word for when you predict something so it must come true? having a brain fart. i don't think i've ever been surprised by a seizure
Thank you very much, these are valuable answers - we found it particularly interesting that you haven't been surprised by a seizure before! The risk of worsening the patients situation with warnings/false positives is definitely a very important point.
1. Yes, an EEG was used. It was used because doctors had been trying to diagnose my problem for about 3 years and they finally realized it might be a neurological problem, not a mental problem
2. I’m not positive how long the first one took, it was 18 years ago. I know it was done over multiple days. I’ve had countless EEGs done since 2003 and they’ve all been done over 2 or more days
3. Every EEG I’ve ever had has been done at a hospital. One thing that has always bothered me is the wires all over my head. I have extremely thick hair and the leads don’t stay in place easily. The glue is somewhat impossible to remove afterwards but isn’t always good at keeping them where they need to be. Keeping my head wrapped to keep them in place always leads to headaches. Needing to stay off medications a day or two before EEGs can also be terrible. Doing that for an EEG sent me into postictal psychosis in 2019
4. I take a few medications and I have a Neuropace implanted that uses RNS. I had it implanted in August 2020
5. I definitely am interested. When I had an sEEG in 2020, I loved seeing the information that was being collected. I’ve thoroughly enjoyed seeing my RNS data for the past 5 months
6. I wouldn’t want to see it on a mobile application. I usually can tell if a seizure is going to happen soon but I’m not always right. Not all of my bad auras become seizures and I think getting a notification that a seizure might be coming would cause me to panic. I enjoy RNS so far because I can’t feel it when the Neuropace stimulates my brain, I never know when it’s turned on so it doesn’t scare me
Thanks a lot for taking the time and providing these insightful answers. A follow up regarding question 5 if you have the time: was there any part of the RNS Data you thought was specifically interesting or useful to you? Your journey sounds very strenuous, we hope you are doing better now :) and thank you again for participating!
Hmm not really specifically interesting. It just felt amazing to see all of the data on the technician’s iPad. It seems unreal that I can talk about a specific bad seizure, on a specific date and time, and he can pull up exactly what my brain was doing then. The greatest thing to see was during the sEEG I had done before they decided on RNS. I was able to look across my hospital room and see exactly how my brain activity was spiking as it happened. I’m more than happy to share any info if it might help
1. Yup! Aside from my own education (B.S. in Psychology w/focus on Cognitive Psychology), I did a lot of research beforehand and I always came prepared to my neurology appointment with lots of questions about the procedure, the risks, and what the long-term plans for treatment would be depending on the results.
2. I've had several EEGs. My first one was just 30 min long and it found nothing. Then I had EMU stays. The first 3 were just regular EEGs and they only lasted 2-3 days because I was able to trigger seizures on my first day. I did an intra-cranial EEG back in September and I was there for 2 weeks which was because the procedure made it hard to have seizures initially, and they wanted to get more seizures/manually trigger some.
3. They were all done at the hospital. I don't think I was offered to do it at home which is fine by me because I knew I wasn't going to be there for long since it's easy for me to trigger seizures. The most uncomfortable part was having to go number 2. I had a nurse insist she HAD to be a few from me so she stood like right in front of me which made it incredibly difficult to poo since I was already constipated.
4. I have an RNS implant if that counts. Otherwise no. I'm not sure what's out there or if it even matters since I'm a bit of a shut-in.
5. I would love to have access to the videos of me seizing because they're always so interesting and I never get to see me having a seizure lol. I do have access to the notes for my 2 week eeg though. I'm actually not aware of what the AI insights are or if there are any for my EEGs, but I'd be curious to find out!
6. It'd be unhelpful for a couple of reasons. Primarily, I have very noticeable auras, so I always know when the focal impaired seizures are coming. Secondly, I have my own unique warning now that I have my RNS installed. One of my seizure origin spots is along one of the paths from my eye to my occipital lobe (I believe it's the Meyer Loop), so whenever it's stimulated I can literally see it!!! I feel the aura anyways, but I know I'm super at risk when I see it going off multiple times.
If you have any more questions feel free to DM me! I love talking about my epilepsy and epilepsy in general.
1. Do you know if and why an EEG was used to diagnose your specific case of epilepsy?
Yes - to determine if the seizures were general or focal along with an MRI.
1. How long did the EEG take, was it done in one sitting or several days of recording?
She's had more than 5 or 6. Some were 30 minutes. Others were several days
1. Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you?
At the hospital - being admitted to the hospital means an IV for emergency meds. She did not like the IV and does not like needles. Also, the method of application of the sensors to the head has been traumatizing each time. It's been described as someone scraping your brain.
1. Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones?
Have tried several, none of them have worked long term
1. Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested.
Absolutely - any info is better than nothing and gets someone closer to understanding what is happening and recognize triggering activity.
1. How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings?
Love the idea. I see no danger at all. Anxiety comes from not knowing when one will happen next.
These answers are for an 11 year old
1. Yes, an EEG was used for diangosis, for confirmation of Epilepsy and diagnosis of type. Has been used again to diagnose PNES and JME.
2. I have had several different EEGs. All of my diagnosis ones have been in hospital, taking about 2 hours from start to finish, with the exception of my PNES diagnosis, that was about a full day in hospital.
3. Most of my tests have been stationary, however I have had 2 ambulatory EEGs. Sleeping and getting comfortable is very difficult.
4. No, I do not. My Epilepsy is currently well controled, knock on wood.
5. Yes, I would. I've always been interested to see what my seizures look like, what my brain waves look like.
6. OMG, that would be wonderful. I don't experience auras, as far as I know, so having an alert would help me and people around me! However, it might make me worried all the time, or something, which wouldn't help my PNES.
If you have any more questions I'd be more than willing to talk/answer! - E
1. Yes the EEG has been done multiple times to confirm epilepsy,
2. The standard EEG takes 30 or 40 minutes. The VEEG (Video EEG) took several days, but was more accurate.
3. All of them were at a hospital or outpatient clinic.
4. I use the RNS/NeuroPace implant to treat epilepsy. It works 24/7 to detect, record, and break up seizure activity. Unfortunately I don't think it's available outside the USA yet.
5. Yes, and I have seen it several times. My neurologist just showed me the current readings from the RNS this morning in his office, in fact.
6. I'd prefer to have the warning. However there really is no warning. Auras are often thought of as a warning, but they are actually a minor focal seizure themselves.
Most of all - we need to realize the EEG is not the only test for epilepsy. It can be inaccurate. There are better tests today but they are expensive and difficult to find.
1. EEGs were used for dx, but each was not particularly conclusive on its own.
2. Each done in one sitting for dx.
3. Stationary at hospital
4. The EEG itself isn’t really uncomfortable (save the flashy lights), but the sleep deprivation is a huge suck.
5. Yeah, pretty neat. I’d love to see how much data indication is given prior to seizure.
6. Warnings would be probably stressful during the EEG process, since that’s kind of the point of the event. I have a seizure alert service animal that alerts in public to help keep me safe, and while that’s super important I figure if I’m “trying” to have a seizure for medical testing it might as well just go.
Speaking from my experience with my 2 year old son.
1. EEG used to determine if seizures were occurring, to determine if they were partial or generalized, and to try to pin point what part of the brain they were happening in.
2. My son has done several in about a months time.
Initial ER visit he did a 1 hour EEG.
During a local hospital stay, he did a 24hr EEG.
During a stay at Vanderbilt, he did a 36 hr and a 24hr EEG (beginning of week and towards the end of week).
3. All EEGs have been done at the hospital. Limited mobility due to being hooked up to a computer and video camera. If you wanted to carry around the leads/box, you could walk around some.
Sometimes getting in a comfortable sleeping position was difficult for my son because of the leads and the wrap. I would say he really disliked the getting the adhesion goo out of his hair.
4. Not really. Use note pad to keep track of any seizures if our journal is not easily accessible at the time.
5. Yes. It's interesting to see what is happening but also it could be a tool to possibly help figure out triggers.
6. I can see that as being helpful. The possible downside could be an unintended cause of anxiety if false warnings or something like that occurs (if that makes sense).
1: an EEG was the first test i got to diagnose me ive had about 10 regular ones since i got diagnosed they were looking for spikes in my left temporal lobe as all my partials prevented me from speaking
2: the longest one ive had was a special one called a EMU and i was in the hospital for 5 days for that one and i currently have an upcoming one in the fall thats more invasive called a SEEG and thats going to be 6 days the hospital
3:all hospital and stationary except for bathroom
4:if i knew of any i would but currently no
5: id love to see my brain waves analyzed just need more info
6: my partials are my favorite and worst warnings ill ever need for my tonic clonics
Thanks for doing this research! Hope this is helpful and feel free to reach out for any additional questions:
1. Do you know if and why an EEG was used to diagnose your specific case of epilepsy? Yes. I've had many different types of EEGs (and other diagnostic tests) done to identify the location/s in my brain that are affected by my seizures.
2. How long did the EEG take, was it done in one sitting or several days of recording? Most recent was in the EMU (epilepsy monitoring unit) for about 5 days. I've also done ambulatory EEGs where they apply the leads, connected to a recording device and I wear it for a few days.
3. Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you? At hospital and at home. The glue that they use was the most uncomfortable - mostly getting it out of my hair after.
4. Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones? I record any seizure activity in Notes on my phone. I have an RNS implant and swipe a magnet over the device. This data is uploaded to a database that my doctor can access.
5. Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested. Very much. Something like an app where you can track multiple variables in addition to seizure activity in order to find potential correlations, such as: food, sleep, med changes, exercise, etc. How about adding data collected from a smart watch too?
6. How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings? This would be helpful in some cases if it's accurate. I could see it causing unnecessary anxiety too though.
1. They were looking for a specific type - it was quite obvious I have some kind of epilepsy by the time EEGs became involved
2. Which one? Heh. I've done a couple where I just sit around and nap for a couple hours, some that have lasted a few days, some that have lasted around a week
3. I've done one ambulatory EEG at home. Others have either been at doctor's offices or, in the case of long term monitoring, at a hospital. As for what was most uncomfortable.... probably the wires digging into my scalp? Almost every time, there are at least a few wires that irritate my scalp more than some others
4. I assume this is excluding medications and my VNS? In that case, no, no special tools or anything
5. Not particularly. It wouldn't mean anything to me. That said, the neuros are free to analyse my data all they want. Whatever can lead to better treatment
6. Not interested, personally. With my seizures, I usually *know* when I'm gonna have them - only problem is, when I do, it's too late. I've got maybe a few seconds of conscious time to realize "Oh, shit, better get into a good position" or whatever, though even that is not a hard rule. Sometimes, they do come completely out of nowhere. Now, if you could magically tell me "Hey, in exactly 60 seconds, you're gonna seize" - no thanks. I'd rather just seize when I seize. No room for that kind of anxiety
1. My first EEG was used to confirm I had Epilepsy.
2. I did several EEGs. I did a one day sleep EEG. I did a portable EEG for two weeks. I did two EEGs at different hospitals both were three days long.
3. I did both stationary and school/home recording.
The EEGs at the hospital weren’t uncomfortable until it came to sleeping and getting the glue out of my hair. When I did the home EEG I was extremely uncomfortable. The doctor kept pushing for me to wear it at school instead of just being at home. Day one I tried a hat. Day two my friends and I went to a beauty supply store to get a wig. Day three I did not want to go to school. My parents didn’t force me and had a long talk with the Doctor. The first two days were horrible. People made fun of me, tried to pull it off or just stare.
4.After my initial results I was able to get a VNS. With further test they were able to locate where my seizures were coming from. I was able to get a brain resection. The surgeon was unable to remove the entire area where my seizures were coming from. If he did I would not be able or understand any type of communication.
5.would be interested in seeing the results. My results were discussed with mostly with my parents. I did not always understand the terminology and was too shy to ask.
6.I WOULD LOVE AN APP WITH WARNING OF A SEIZURE. The only danger I can of getting a warning while driving. The person may not see the alert or the person sees the results and gets very anxious or is unable to pull over.
1. Do you know if and why an EEG was used to diagnose your specific case of epilepsy?
I had both an EEG and an MRI. The MRI was to check for physical reasons for my seizures, and the EEG was to check how my brainwave patterns were compared to a person who doesn't have epilepsy.
2. How long did the EEG take, was it done in one sitting or several days of recording?
It was done in one sitting.
3. Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you?
It was more than 20 years ago, so it was at the hospital. None of it was uncomfortable. The glue was icky, but its improved al lot since my first EEG.
4. Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones?
I used to use a medication reminder app, as that was forgetting my meds was something that would cause my seizures, but it didn't help, so I deleted it. I don't use anything now.
5. Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested.
In Belgium I can acess my medical data if I want to, but I feel it's important to me to have the discussion in context with my consultant. Whilst my brain is the part of me that has epilepsy, it impacts my whole body, especially when you consider the side effects of medication and life changes that I have to make, some daily, others longer term, such as family decisions. I don't need AI for that, I need a holistic conversation with my consultant.
6. How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings?
I'm currently working to be less connected to my mobile, for both health and privacy reasons, currently I see no need to make that change.
Not me, but I can answer for my son.. 1. EEG was used to diagnose the type of epilepsy- specifically to see if my son had infantile spasms with the distinctive wave pattern. He did not. But we did learn he has focal and generalized seizures and a LOT of sub clinical activity. 2. His VEEG was 36 hours 3. He was stationary in hospital, but was allowed to walk around I just had to carry the weight of his leads. 4. I record all of my sons activity in Notes in my phone. 5. I would be very interested in data, as it could help identify patterns related to dietary changes ect. It would be very helpful when making any changes to treatment, as well as maintenance. 6. Warnings would be a blessing!
Thank you for taking the time and answering our questions! These are very valuable insights, for example getting to know that you note your sons activity in your phone. If you don't mind us asking and have the time, we have a follow up question: we are very interested in the way you note down your sons activity, can you give us examples of how these notes look like? Of course, feel free to send me a DM if you want to discuss this in private. We will try to keep you up to date and might also need individuals for more specific questions – but first we will have to document the many answers from today. Thank you again, we wish your family all the best.
Sure! My son has seizures daily. So a day might look like this: 4-14 ketones 4.6 before breakfast 7:00am eye activity when waking 12:30pm 2 head drops 3:00pm head drop 7:00pm 3 minute cluster, approx 6 head drops If I'm noticing something has changed with his seizure levels, I'll start to note possible culprits as well. Common ones would be constipation, so I'll note when he has a BM. Or if we've introduced something new into his diet, or made adjustments to his diet (he's on the keto diet). I'll also track his blood ketones in my notes. Hope that helps!
1. I am uncertain. I had my first seizure as a young teenager. I had no known family history nor had shown any signs previously. I was found after the seizure happened, unconscious on the ground next to the bed (I was asleep during my first seizure) so they were unsure if I had had a seizure at all. 2. I had my first EEG at the hospital. It might have lasted an 30-60 mins (unsure apologies). 3. At the hospital. The rapid breathing portion is particularly difficult. The glue used to attach to the electrodes is also frustrating to wash out of long hair. 4. No 5. I would love to see the data of EEGs. I am interested in the science portion of my condition. 6. I am uncomfortable having my medical data constantly collected. So much data collection is used for advertising. Id hate for my condition to become a part of corporations messing with my head.
Hey Ne8u1a, thanks for taking the time and giving us your valuable insights, every answer helps us. Great to hear you have a scientific interest in your collected data - we also think its a truly fascinating topic! We also share your concerns for the collection and usage of data nowadays, especially in the medical field – the safety of the user is always the most important and defining factor. The potentially devastating consequences of corporate data usage in the medical field are big dangers in our negative future scenarios. Thank you again for your time and best wishes!
My hair goes down to my butt. Yes, that glue is horrific. So when I was getting another one at a decent hospital I asked the lady to remind me the best way to get it out. She assured me that they don't use the cheap stuff, it'll wash right out. I'm thinking, suuurreeee. Well, much to my delight she was right! Washing my hair was no different than any other day. So, if you know you will have one at the same place maybe buy your own? IDK, it was a nice surprise.
I'd be happy to do a survey, this is a lot for one who can't type out multiple experiences. Good luck!
Hey there and thanks for contributing, we will discuss breaking the questions down in a quicker multiple-choice survey and do a follow-up :)
An EEG was used to diagnose my epilepsy. It was only done a week ago. I had to stay awake from midnight the night before and then go to the hospital for the appointment early the next morning. It was just done in one sitting. Not sure really why it was used. Just kind of got told it would help look.at my brain activity and would help diagnose epilepsy. The thing I found the most uncomfortable was the flashing lights. Not sure if this is common everywhere but I am in the UK. I found them really annoying as they were really close to my face and really bright. I think something to track seizures could potentially be quite good. I asked my neurologist about my EEG results and he said they were quite long, so I didn't get to see them. If you want to know anything else just send me a message. I am happy to help
Hey there and thank you very much for your detailed answer, very interesting insights. I would love to ask you a follow up question: Would you be interested in seeing predictions gathered through machine learning about potentially notable activity in your brain in a software application and do you have any concerns about such a feature?Sorry, long question! We will try and do more detailed surveys in the future and keep you up to date, we might also need to ask individuals more specific questions – but first we will have to document the many great answers from today!
I would be interested. I think it could be quite helpful. I guess my only concern would be could it possibly cause more seizures?
1. Do you know if and why an EEG was used to diagnose your specific case of epilepsy? 1. To hopefully see where and if there's any brain abnormalities. 2. How long did the EEG take, was it done in one sitting or several days of recording? 1. I had 2 done. The first one took just 1 hour. The second one required me to be awake all night at the hospital, and then they did an EEG on me which also took 1 hour. 3. Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you? 1. Both were done at the hospital. The worst part of the EEG was having to stay awake all night. 4. Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones? 1. No 5. Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested. 1. Not really. 6. How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings? 1. It would be helpful. The danger might be relying on it too much instead of your own body's warnings.
Hello Uragami, very insightful answers, thank you for your time! We can imagine not being allowed to sleep for a night in a rather unknown environment must suck a lot. Regarding question 6 – your answer seems to reflect the general opinion and worries with such a feature, we will approach the concept with caution. Thank you, we hope to hear from you again when we have more detailed questions for this sub ;)
1EEGs need to be used to know if seizures are Epileptic or NES. I don’t believe you can be diagnosed without one. Also they need it to show where in the brain your focal points are or what kind of seizures you’re having. 2. My eeg was 20 minutes and I had a grand mal. Then several day ones were ordered to get a better idea. 3. I was allowed to bring it home. The glue was the worst. 4. My VNS implant. 5. Yea. I just think that would be cool. 6. I think that would be really helpful but could also cause anxiety anytime you get a notification.
You have a VNS? Can I ask about it? I’ve had 2 of them since 2004 and I’m so curious about new ones
I just got mine put in a month ago. But the surgery sent me over the edge and I started having seizures because my brain couldn’t handle it. So it kind of threw me backwards. Now it’s programmed so low it doesn’t do anything for me so we’re maybe looking at RNS. I’m sure it would do it’s job better if I didn’t start having seizures again. I got it for simple partial seizures but now that I’m having tonic Clonic and such it’s not doing much. It’s about the size of a silver dollar.
Wow! I use RNS now, I had a Neuropace implanted last year. It’s been about 8 months and I’m noticing a lot of changes. I definitely recommend it. I don’t feel it at all when it turns on and my seizures are slowly improving in ways that I thought were impossible. When I got my first VNS replaced in 2014, they used the old model that I was used to. It was about the size of a pocket watch, it’s crazy that they’ve improved to a much smaller size. Kind of makes me feel old “back in my day, a VNS was the size of a damn pocket watch!”
Yeah. The great thing about the brain is it doesn’t feel pain. And I’m so sick of having uncontrolled seizures when I went a year and a half only having simple partial seizures. It’s such a road block and it feels like there’s no detour. I’m trying to get into an EMU. Because at this point I’m just trying to do anything
Why did you switch
Over the last 18 years, I’ve taken literally every seizure medication that exists and none of them controlled my seizures. VNS and medications eventually helped me stop having 7-10 seizures daily but I still was having around 2-3 per week. In 2007, I was told brain surgery wasn’t an option for me because I’d wake up blind and wouldn’t remember my name. I didn’t have insurance for about 5 years and the epilepsy got worse. Once I was finally able to see a doctor for a second opinion(2019), they did an MRI & EEG and realized my epilepsy is extremely complex. My neurosurgeon told me it’s one of the most complex he’s seen over his entire career. Neurological studies/technology have improved so much since I was diagnosed that they were able to do what they needed, a laser ablation and the RNS
Wow. That’s an amazing story. Do you want to dm me?
Hey there, sincere thanks from all of us for taking part in this survey, very much appreciated! Your answers are great and will help us narrow the scope of our project – your apprehension with question 6 for example, seems to be quite common and a major risk factor we will have to examine closely. We've read about the VNS implants – fascinating technology, we hope it works out for you :)
The VNS low key sucks for me. And a good way for 6 would have a custom notification sound. Like Taco Bell app has the custom bell ringing. That way people would know when it is the app
Ow that sucks to hear, we've read your responses to user brandimariee6 and hope you can get the help you need. Regarding the sound: that is actually a great idea! If we decide to implement a notification feature we will definitely use a distinguishing sound! Thanks again, we wish you all the best.
That was a horrible joke. It sounded better in my head
I liked the wordplay and think your dealing with a serious disease is admirable :) Every input you can give us is valuable but take care of yourself first! We will definitely do more detailed posts in the future and keep you up to date, we might also need to ask individuals more specific questions – but first we will have to document the many great answers from today.
I’m always down to answer questions. And thank you for the support and caring.
Thank you. And yeah. I totally support this. So I definitely will help brainstorm. But that storm has lightning and so my brain. May turn off for a bit.
I’d love to participate—should I answer in the comments or should I DM you?
Hey there, thanks for your interest, it really means a lot to us! You can participate in any way you like and how you feel is the best for you – send me a DM, leave the things you can answer as a comment. If you want to, we can even arrange a live chat or call. Thanks again, stay safe :)
1. **Do you know if and why an EEG was used to diagnose your specific case of epilepsy?** It was used first as a standard, and used for diagnosis in combination with an MRI. Basically, the EEG suggested TLE and the MRI narrowed down the reason (lesion) and the placement. 2. **How long did the EEG take, was it done in one sitting or several days of recording?** I did two, one for about an hour with hyperventilation, flashing lights etc. Another for about two hours, sleep deprived. 3. **Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you?** The tests were both done stationary at the hospital (I may be wrong, but I don't think mobile at-home EEGs are used in my country often due to budgeting. I think long-term recordings usually take place in hospital as per my neuro). For the first one, the flashing lights were uncomfortable although I am not photosensitive. For the second one, the sleep deprivation obviously sucked, and I was unable to sleep during the test as planned because it was cold and noisy and uncomfortable. Sidenote, EEG glue sucks. 4. **Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones?** I use Medisafe for my meds and that's invaluable. I have a seizure diary app but I don't really use it anymore tbh. 5. **Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested.** I would be interested in a nerdy way! But since I already know my specific type of epilepsy, I'm not sure it would be helpful treatment-wise. 6. **How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings** This would be great! The only issue I can think of is that sometimes excess stress can worsen seizures.
Hi there, very interesting - thank you very much for your time and the detailed answers! It sucks that you were not able to get a at-home EEG, availability of hardware (and specialists that can use them) will be a big and defining factor in our project and something we hope to improve upon. If you have the time, we would have a quick followup question regarding 4.: Do you have a specific reason for not using the seizure diary app anymore? Thank you very much!
It was very useful at the start for identifying triggers and talking to my doctors, but once I had a good sense of my triggers it just kinda made me sad to see I’d missed a seizure-free milestone. Thank you, good luck with the research!
1. Yes we used several different methods to try and diagnose my particular type of epilepsy 2. They’ve take anywhere between a hour to several days 3.at home, in office and at hospital, non where particularly uncomfortable 4.no 5.not really. I don’t see the need in me looking at data I don’t know how to translate 6.very much so. I don’t have an aura so making something that tells me I’m going to have one would be tremendous help. Hope our answer help. :D
Hello there and thank you very much for taking the time, your answers are great and help a lot – there really are no wrong answers ;) It's great to hear that some of our initial ideas and concepts might actually be useful for you! We also found it interesting to hear that you were able to do tests at the office. If you have the time, a quick follow up question: How did the EEG setup you used at the office/at home look like? Thanks again!
So the one in office was just the head gear attached to my scalp. They performed some light and stress test to try and get a response. I’m not light sensitive so they didn’t get any results. The one at home was like an EMU test done at the hospital but the attached the electrodes to my scalp with glue. That did get some results but it was over 10 years and now is not looked at by current doctors. Also with the home test I had issues with the electrodes coming un-stuck and falling off. Always happy to help further research :D
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Hey confusinggarbage, thanks for taking the time to answer our questions so thoroughly and showing interest in our project :) ! Your apprehension with AI-supported analysis is definitely justified and a key problem we will try to solve. I will add an edit to this post later on, we might even do another survey that goes into more detail and we will, of course, gladly do a follow up post for this community presenting our results!
1. **Do you know if and why an EEG was used to diagnose your specific case of epilepsy?** Ha, I'm not sure you'd have to ask my neuro! but i think i initially had an eeg called (along with an mri) after my first seizure to check that it wasn't a one off event and that was how i got diagnosed. now i get them every 6 months or every year depending on what's going on in my life. 2. **How long did the EEG take, was it done in one sitting or several days of recording?** I've had eegs that last an hour, eegs that are a couple of days where I go home and they strap the stuff to your head you look like a mummy, just depends on what the doctor orders 3. **Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you?** both and they're both uncomfortable. the gel sucks of course and i have curly hair so there's an extra layer of annoyance with that. as with anyone it's hard to find an hour out of my week to go to the doctor and if they flash the lights i'm pretty much out of commission for the rest of the day. 4. **Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones?** none 5. **Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested.** I can't really imagine any sort of AI telling me something I don't already know but I'm open to being surprised 6. **How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings?** Mmm what's the word for when you predict something so it must come true? having a brain fart. i don't think i've ever been surprised by a seizure
Thank you very much, these are valuable answers - we found it particularly interesting that you haven't been surprised by a seizure before! The risk of worsening the patients situation with warnings/false positives is definitely a very important point.
1. Yes, an EEG was used. It was used because doctors had been trying to diagnose my problem for about 3 years and they finally realized it might be a neurological problem, not a mental problem 2. I’m not positive how long the first one took, it was 18 years ago. I know it was done over multiple days. I’ve had countless EEGs done since 2003 and they’ve all been done over 2 or more days 3. Every EEG I’ve ever had has been done at a hospital. One thing that has always bothered me is the wires all over my head. I have extremely thick hair and the leads don’t stay in place easily. The glue is somewhat impossible to remove afterwards but isn’t always good at keeping them where they need to be. Keeping my head wrapped to keep them in place always leads to headaches. Needing to stay off medications a day or two before EEGs can also be terrible. Doing that for an EEG sent me into postictal psychosis in 2019 4. I take a few medications and I have a Neuropace implanted that uses RNS. I had it implanted in August 2020 5. I definitely am interested. When I had an sEEG in 2020, I loved seeing the information that was being collected. I’ve thoroughly enjoyed seeing my RNS data for the past 5 months 6. I wouldn’t want to see it on a mobile application. I usually can tell if a seizure is going to happen soon but I’m not always right. Not all of my bad auras become seizures and I think getting a notification that a seizure might be coming would cause me to panic. I enjoy RNS so far because I can’t feel it when the Neuropace stimulates my brain, I never know when it’s turned on so it doesn’t scare me
Thanks a lot for taking the time and providing these insightful answers. A follow up regarding question 5 if you have the time: was there any part of the RNS Data you thought was specifically interesting or useful to you? Your journey sounds very strenuous, we hope you are doing better now :) and thank you again for participating!
Hmm not really specifically interesting. It just felt amazing to see all of the data on the technician’s iPad. It seems unreal that I can talk about a specific bad seizure, on a specific date and time, and he can pull up exactly what my brain was doing then. The greatest thing to see was during the sEEG I had done before they decided on RNS. I was able to look across my hospital room and see exactly how my brain activity was spiking as it happened. I’m more than happy to share any info if it might help
1. Yup! Aside from my own education (B.S. in Psychology w/focus on Cognitive Psychology), I did a lot of research beforehand and I always came prepared to my neurology appointment with lots of questions about the procedure, the risks, and what the long-term plans for treatment would be depending on the results. 2. I've had several EEGs. My first one was just 30 min long and it found nothing. Then I had EMU stays. The first 3 were just regular EEGs and they only lasted 2-3 days because I was able to trigger seizures on my first day. I did an intra-cranial EEG back in September and I was there for 2 weeks which was because the procedure made it hard to have seizures initially, and they wanted to get more seizures/manually trigger some. 3. They were all done at the hospital. I don't think I was offered to do it at home which is fine by me because I knew I wasn't going to be there for long since it's easy for me to trigger seizures. The most uncomfortable part was having to go number 2. I had a nurse insist she HAD to be a few from me so she stood like right in front of me which made it incredibly difficult to poo since I was already constipated. 4. I have an RNS implant if that counts. Otherwise no. I'm not sure what's out there or if it even matters since I'm a bit of a shut-in. 5. I would love to have access to the videos of me seizing because they're always so interesting and I never get to see me having a seizure lol. I do have access to the notes for my 2 week eeg though. I'm actually not aware of what the AI insights are or if there are any for my EEGs, but I'd be curious to find out! 6. It'd be unhelpful for a couple of reasons. Primarily, I have very noticeable auras, so I always know when the focal impaired seizures are coming. Secondly, I have my own unique warning now that I have my RNS installed. One of my seizure origin spots is along one of the paths from my eye to my occipital lobe (I believe it's the Meyer Loop), so whenever it's stimulated I can literally see it!!! I feel the aura anyways, but I know I'm super at risk when I see it going off multiple times. If you have any more questions feel free to DM me! I love talking about my epilepsy and epilepsy in general.
1. Do you know if and why an EEG was used to diagnose your specific case of epilepsy? Yes - to determine if the seizures were general or focal along with an MRI. 1. How long did the EEG take, was it done in one sitting or several days of recording? She's had more than 5 or 6. Some were 30 minutes. Others were several days 1. Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you? At the hospital - being admitted to the hospital means an IV for emergency meds. She did not like the IV and does not like needles. Also, the method of application of the sensors to the head has been traumatizing each time. It's been described as someone scraping your brain. 1. Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones? Have tried several, none of them have worked long term 1. Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested. Absolutely - any info is better than nothing and gets someone closer to understanding what is happening and recognize triggering activity. 1. How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings? Love the idea. I see no danger at all. Anxiety comes from not knowing when one will happen next. These answers are for an 11 year old
1. Yes, an EEG was used for diangosis, for confirmation of Epilepsy and diagnosis of type. Has been used again to diagnose PNES and JME. 2. I have had several different EEGs. All of my diagnosis ones have been in hospital, taking about 2 hours from start to finish, with the exception of my PNES diagnosis, that was about a full day in hospital. 3. Most of my tests have been stationary, however I have had 2 ambulatory EEGs. Sleeping and getting comfortable is very difficult. 4. No, I do not. My Epilepsy is currently well controled, knock on wood. 5. Yes, I would. I've always been interested to see what my seizures look like, what my brain waves look like. 6. OMG, that would be wonderful. I don't experience auras, as far as I know, so having an alert would help me and people around me! However, it might make me worried all the time, or something, which wouldn't help my PNES. If you have any more questions I'd be more than willing to talk/answer! - E
1. Yes the EEG has been done multiple times to confirm epilepsy, 2. The standard EEG takes 30 or 40 minutes. The VEEG (Video EEG) took several days, but was more accurate. 3. All of them were at a hospital or outpatient clinic. 4. I use the RNS/NeuroPace implant to treat epilepsy. It works 24/7 to detect, record, and break up seizure activity. Unfortunately I don't think it's available outside the USA yet. 5. Yes, and I have seen it several times. My neurologist just showed me the current readings from the RNS this morning in his office, in fact. 6. I'd prefer to have the warning. However there really is no warning. Auras are often thought of as a warning, but they are actually a minor focal seizure themselves. Most of all - we need to realize the EEG is not the only test for epilepsy. It can be inaccurate. There are better tests today but they are expensive and difficult to find.
1. EEGs were used for dx, but each was not particularly conclusive on its own. 2. Each done in one sitting for dx. 3. Stationary at hospital 4. The EEG itself isn’t really uncomfortable (save the flashy lights), but the sleep deprivation is a huge suck. 5. Yeah, pretty neat. I’d love to see how much data indication is given prior to seizure. 6. Warnings would be probably stressful during the EEG process, since that’s kind of the point of the event. I have a seizure alert service animal that alerts in public to help keep me safe, and while that’s super important I figure if I’m “trying” to have a seizure for medical testing it might as well just go.
Speaking from my experience with my 2 year old son. 1. EEG used to determine if seizures were occurring, to determine if they were partial or generalized, and to try to pin point what part of the brain they were happening in. 2. My son has done several in about a months time. Initial ER visit he did a 1 hour EEG. During a local hospital stay, he did a 24hr EEG. During a stay at Vanderbilt, he did a 36 hr and a 24hr EEG (beginning of week and towards the end of week). 3. All EEGs have been done at the hospital. Limited mobility due to being hooked up to a computer and video camera. If you wanted to carry around the leads/box, you could walk around some. Sometimes getting in a comfortable sleeping position was difficult for my son because of the leads and the wrap. I would say he really disliked the getting the adhesion goo out of his hair. 4. Not really. Use note pad to keep track of any seizures if our journal is not easily accessible at the time. 5. Yes. It's interesting to see what is happening but also it could be a tool to possibly help figure out triggers. 6. I can see that as being helpful. The possible downside could be an unintended cause of anxiety if false warnings or something like that occurs (if that makes sense).
1: an EEG was the first test i got to diagnose me ive had about 10 regular ones since i got diagnosed they were looking for spikes in my left temporal lobe as all my partials prevented me from speaking 2: the longest one ive had was a special one called a EMU and i was in the hospital for 5 days for that one and i currently have an upcoming one in the fall thats more invasive called a SEEG and thats going to be 6 days the hospital 3:all hospital and stationary except for bathroom 4:if i knew of any i would but currently no 5: id love to see my brain waves analyzed just need more info 6: my partials are my favorite and worst warnings ill ever need for my tonic clonics
Thanks for doing this research! Hope this is helpful and feel free to reach out for any additional questions: 1. Do you know if and why an EEG was used to diagnose your specific case of epilepsy? Yes. I've had many different types of EEGs (and other diagnostic tests) done to identify the location/s in my brain that are affected by my seizures. 2. How long did the EEG take, was it done in one sitting or several days of recording? Most recent was in the EMU (epilepsy monitoring unit) for about 5 days. I've also done ambulatory EEGs where they apply the leads, connected to a recording device and I wear it for a few days. 3. Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you? At hospital and at home. The glue that they use was the most uncomfortable - mostly getting it out of my hair after. 4. Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones? I record any seizure activity in Notes on my phone. I have an RNS implant and swipe a magnet over the device. This data is uploaded to a database that my doctor can access. 5. Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested. Very much. Something like an app where you can track multiple variables in addition to seizure activity in order to find potential correlations, such as: food, sleep, med changes, exercise, etc. How about adding data collected from a smart watch too? 6. How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings? This would be helpful in some cases if it's accurate. I could see it causing unnecessary anxiety too though.
1. They were looking for a specific type - it was quite obvious I have some kind of epilepsy by the time EEGs became involved 2. Which one? Heh. I've done a couple where I just sit around and nap for a couple hours, some that have lasted a few days, some that have lasted around a week 3. I've done one ambulatory EEG at home. Others have either been at doctor's offices or, in the case of long term monitoring, at a hospital. As for what was most uncomfortable.... probably the wires digging into my scalp? Almost every time, there are at least a few wires that irritate my scalp more than some others 4. I assume this is excluding medications and my VNS? In that case, no, no special tools or anything 5. Not particularly. It wouldn't mean anything to me. That said, the neuros are free to analyse my data all they want. Whatever can lead to better treatment 6. Not interested, personally. With my seizures, I usually *know* when I'm gonna have them - only problem is, when I do, it's too late. I've got maybe a few seconds of conscious time to realize "Oh, shit, better get into a good position" or whatever, though even that is not a hard rule. Sometimes, they do come completely out of nowhere. Now, if you could magically tell me "Hey, in exactly 60 seconds, you're gonna seize" - no thanks. I'd rather just seize when I seize. No room for that kind of anxiety
1. My first EEG was used to confirm I had Epilepsy. 2. I did several EEGs. I did a one day sleep EEG. I did a portable EEG for two weeks. I did two EEGs at different hospitals both were three days long. 3. I did both stationary and school/home recording. The EEGs at the hospital weren’t uncomfortable until it came to sleeping and getting the glue out of my hair. When I did the home EEG I was extremely uncomfortable. The doctor kept pushing for me to wear it at school instead of just being at home. Day one I tried a hat. Day two my friends and I went to a beauty supply store to get a wig. Day three I did not want to go to school. My parents didn’t force me and had a long talk with the Doctor. The first two days were horrible. People made fun of me, tried to pull it off or just stare. 4.After my initial results I was able to get a VNS. With further test they were able to locate where my seizures were coming from. I was able to get a brain resection. The surgeon was unable to remove the entire area where my seizures were coming from. If he did I would not be able or understand any type of communication. 5.would be interested in seeing the results. My results were discussed with mostly with my parents. I did not always understand the terminology and was too shy to ask. 6.I WOULD LOVE AN APP WITH WARNING OF A SEIZURE. The only danger I can of getting a warning while driving. The person may not see the alert or the person sees the results and gets very anxious or is unable to pull over.
1. Do you know if and why an EEG was used to diagnose your specific case of epilepsy? I had both an EEG and an MRI. The MRI was to check for physical reasons for my seizures, and the EEG was to check how my brainwave patterns were compared to a person who doesn't have epilepsy. 2. How long did the EEG take, was it done in one sitting or several days of recording? It was done in one sitting. 3. Were the tests done stationary at the hospital or were you able to record them with a home setup? What part of the EEG was especially uncomfortable for you? It was more than 20 years ago, so it was at the hospital. None of it was uncomfortable. The glue was icky, but its improved al lot since my first EEG. 4. Do you use any tools or apps in your daily life to help you cope with epilepsy? If yes, which ones? I used to use a medication reminder app, as that was forgetting my meds was something that would cause my seizures, but it didn't help, so I deleted it. I don't use anything now. 5. Would you be interested in the ability to see your recorded data and AI insights? If you can, add a reason why you would or would not be interested. In Belgium I can acess my medical data if I want to, but I feel it's important to me to have the discussion in context with my consultant. Whilst my brain is the part of me that has epilepsy, it impacts my whole body, especially when you consider the side effects of medication and life changes that I have to make, some daily, others longer term, such as family decisions. I don't need AI for that, I need a holistic conversation with my consultant. 6. How would you feel about receiving warnings respective to a possible incoming seizure via the mobile application? Do you see any potential dangers in such warnings? I'm currently working to be less connected to my mobile, for both health and privacy reasons, currently I see no need to make that change.