Feeling depressed after latest seizure on Friday

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I hate this so much. I think life will be going fine and then I have a seizure out of nowhere and it flips everything upside down. First the doctor thought lack of sleep was causing the seizures last year so I got a cpap machine. It helped, but just recently I got a very bad ear infection that almost completely closed one ear canal. I was getting crazy headaches, which caused me to sleep less and then I went into urgent care and had the seizure while waiting. I woke up in the hospital. I was lucky that I was there while it happened, but now I don't know if I'll be able to drive again because of this. I feel like a burden on my family for needing to give me rides and helping me. We're going to try to get a referral to an epilepsy center because this has been going for over 20 years and I've tried multiple medications but didn't know about the centers until yesterday. I just want to be more normal.
 

Nakamova

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Hi techguy, welcome to CWE!

One of the most annoying things about epilepsy is when we identify and lessen a secondary trigger (like sleep apnea), and then another trigger comes along to knock us on our butts.

I’m so sorry about the potential loss of your license, but I know that you know it's not a good idea to drive until your seizures are fully-controlled. Has your family told you that you are a burden? If not, then don't go looking for trouble. :) Accept their love and support, and ask them if there are ways you can give it back to them.

I hope the docs at the epilepsy center can get you on the right track.

Cheers!
Nakamova
 

Porkette

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Hi techguy,
Welcome to the forum CWE!
I've had epilepsy for 50 yrs. and I had 2 surgeries to help reduce my seizures both absence and complex partial and just like
you my Dr. couldn't figure out what was causing my seizures until I had a Wada test and that showed it was from trauma that my
mom went through when she was still carrying me, which in turn caused scar tissue on the right temporal lobe.

I don't know where you live but I have been to a wonderful Epilepsy Center in upstate NY at Strong Memorial Hospital in
Rochester, NY. They also have a really good one at the Cleveland Clinic in Ohio.

My Epileptologist did a DNA test on me and found out I was drug resistant after trying over 10 seizure meds then he told
me to start using the cbd oil (med. marijuana) and I was amazed at how that reduced my seizures to the lowest in my life.
I use the mouth spray in a mint flavor and squirt it in my mouth twice a day.

I've never been able to drive in my life and had to depend on my husband or family to take me back and forth but
then I found out about Gadabout which is a group that will come a pick up people who have disabilites or who are older
and don't drive anymore and they will take me to work or where ever I need to go and I just have to donate to them.
I like to pay them each time the take me places and pick me up especially at the price of gas today.

I want you to know you are a normal person take a look at all the famous people all over the world who have or had
epilepsy and you will be amazed. It surprised me to find out Elton John has had epilepsy for a few yrs. but he doesn't let
it stop him with all his concerts.

Just like you I have problems with my 1 ear being plugged up and I saw an ear specialist and he told me to put
hydrogen peroxide in my ear and let is bubble up and you will hear some crackling noise also once that stops
flush your ear out with and ear syringe and you will be amazed on how that helps.

Wishing you the best of luck and May God Bless You,

Sue
 

kSQ

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Hi Techguy,
I was using a full face CPAP when I had my first seizure last November. It was a Tonic-Clonic. During the seizure I had difficulty breathing and passed out. My wife got it off me, called 911. I went to the ER, etc. I now have an irrational(?) fear of using my CPAP. I tried the nasal mask type but in my opinion they are uncomfortable and I couldn't sleep with it on.. So I wake up at night a lot like I used to before I started using a CPAP (It is about 3:00 am right now here on the West Coast). Also, I snore. Sometimes I wake myself up due to my snoring. Sometimes I wake up my wife and/or our dog in her kennel. My wife, bless her heart, doesn't say too much, but I know I keep her awake sometimes. Sometimes she will wake me and ask me to roll over, then she tries to fall asleep before I get back to sleep. We bought a split bed where each side adjusts. It helps a little. We've discussed using separate bedrooms (our kids are grown and out of the house, mostly), but we both feel better sleeping in the same bedroom.

As for depression: between seizures, fear of seizures, and the general state of the world, it's hard not to get depressed. I call it my depression loop. I try to get regular exercise (use a cane while working out at the local gym or taking short walks) work in the yard, go occasionally to lunch (no alcohol) or to a movie--the lifting of Covid restrictions has helped. I try not to watch the world news too much. Along with Keppra, I use CBD/CBN tinctures and topicals, lidocaine, menthol, etc. (my seizures always start in my feet and calves--tingling then cramps, then seizing that runs up one or both legs into my upper body and arms). They seem to help. I've had a dozen or so seizures, none for the past three months. I'm driving again. In truth, I feel like a wimp when I read contributions from some of the other folks in the forum---dealing with having regular seizures since childhood, never driving, etc.

Based on the contributions by other folks in this forum and my own limited experience, it seems to be all about trying to get the right treatment/drugs, support from others, and doing stuff that "helps". I have trouble asking for help and it seems perhaps you may as well. It's a long road.

KSQ
 

Heavy Kevy

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It’s like being checked out of life for a while. Unfortunately nothing gets done and there’s more stuff to do. On top of that you’re limited in ability to help. I can’t imagine the stress and anxiety I have caused my wife and family.
I try being as useful as I can and show appreciation and compassion for all the help.
 

XxBlaqkxX

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Hey there techguy,

I honestly feel you. Life stinks when you have epilepsy. (I'm totally biased here so don't let it get you down).

A diagnosis is also not a cake walk, either.

I'm sorry to hear your illnesses les you down the road to epilepsy. I am glad that you were in a safer place to have a seizure...that can always end up so badly if not.

I've never been able to drive and the idea scares me to death. I got my diagnosis when I was about 9-10 years old.

I've always felt like a burden, and not to mention embarrassed. When I say, "I can't drive," or, "I don't have a license," some people automatically jump to thinking I got some DUI or something and got my license suspended so that's why I say "embarrassing." When most of my friends were learning to drive in high school and trying to pressure me into taking Driver's Ed with them, they didn't get it, I said, "I cannot legally drive because of my medical issues," and they just kept on and on. I would scream at my siblings when they yelled at my parents to take them out to drive because they aren't taking them out "enough" to practice before their permit expires. It wasn't usually pretty...and would almost always end with, "AT LEAST YOU CAN LEARN TO DRIVE!"

As an adult, sometimes I couldn't pursue college because I couldn't get a ride to classes, or I'd have to get a ride from a less than desirable driver just to finish the semester I already started because my original ride couldn't take me...

I was seizure free without medication for 15 months. I had been learning how to drive and was about to go take my driving test and then had a series of horrible seizures due to catching an illness, which probably was the trigger of it all. Back on medications it was, and I'm still kind of fighting to get stable again. Although, I haven't landed in the hospital for one for 10 months. If I hit one year seizure free, I could give driving another try, but I'm terrified. I don't want to ever put anyone in danger. It would be nice to have a license in case of an emergency such as no one is able to give me a ride anywhere yet I absolutely have to get somewhere type of situation. I wouldn't want to drive so often that it became a habit that I could do in my sleep because it just takes one off day. I would probably have to put the key in a lock box with a combination or something. I'm terrified of driving, but walking or biking in this heat wouldn't be any safer for me, either, and our public transport isn't that great.

I feel like a burden...almost constantly. I'm low on energy, I can't drive, finding a job is incredibly difficult and I really want to be able to get a job to help with expenses right now, some activities I don't participate in because I worry about my safety...I'm so limited in what I can do, I barely have friends, and it's tiring. I don't even know what I would do if I didn't have my family to give me rides anymore...it is a great fear of mine.

Sometimes I wish I could go back to being a kid, before I had this diagnosis. The care free, didn't need medication, where I could wake up and go to bed without a care in the world...

I hope things get better for you and you have a bit more control over your seizures soon. There can and will be better days. Hang in there!
 

suebear

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Life without a driver's license is a very big deal. Have been living this way since the age of 1, I'm 54 now. If things change only time will tell. Had a bad reaction to the Diphtheria shot back in the day and that's all it took. Sent my temperature through the roof then placed a mark on my brain due to the high temperature. Part of that scar was unable to be removed until 1995 so life isn't all peaches but I'm here doing my very best at the moment taking things one day at a time with my daily blessings. Will I ever be able to drive, no clue, do I think about it sure, am I concerned about it, no and I'll tell you why. Life is far too valuable right now to be concerned about driving on the roads. Yes, I have a husband that takes care of me and I know he does get frustrated at times taking me to doctor's visits which I sense at times so I do my very best to keep focused and pay very close attention to his needs so when there is a better time for visits to take place that timing is planned. I decided many months ago it was best for me to work from home since driving could not happen and I live in a rural area. I also have found specific stores I can order from and have food delivered which is very helpful. I don't always like doing that but if it is something that needs to be done it can take place and the delivery can arrive within a reasonable amount of time. As I said, just mentioned to take things one day at a time living with epilepsy and not be so concerned with driving as it's not on my high list of priorities, living life is on the top of my list. That's my opinion. I wish you well.
 
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Sorry for the delay in my response. I didn't know I got any repsponses to my post. Just had the appt yesterday and I've been depressed. So the epilepsy specialist told me that for about 60% of people that the first drug works, then the next 20% a second drug is added and that helps, but for the last group sometimes you just need to keep trying different things until something works. I'm on that last part. I just kind of broke down in the doctors room after she left and told me that. My life is turned upside down. I feel like I'm alone and no one knows what I'm thinking or how I'm feeling. I know I'm not, but I don't personally know anyone in my life that has epilepsy.
 

Sabbo

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I know how you feel about driving. I've had simple partials since childhood--complex partials started about 24 years ago. I can feel the simple partials come on, & they usually last less than 5 minutes. I was learning to drive in high school, & the day I had my last behind the wheel practice I had a simple partial right before class. I decided right then & there that I didn't want to threaten anybody, and just wouldn't drive. Now that I have complex partials, too, I'm glad I don't drive--those occur w/o any aura, and I've injured myself severely during many of them.
 
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