Brand new here, very scared

[Jennergize]

I'm not sure if I should be posting here, as I do not yet have a diagnosis of epilepsy. Excuse me if I am out of line...
I have had two episodes within the last three days where I lost consciousness, convulsed for about 30 seconds, and lost bladder control. I don't remember these things- there was someone with me both of these times. One other time, I fell, lost consciousness, did not lose bladder control, and woke confused on the floor having bumped my head pretty good. No one was with me, so I don't know if I convulsed or not.
I am 32, a single mother of two children, and do not have health insurance for me at this time. I am afraid to go to a clinic, because I fear having my license taken away- I have to drive for work.... I have to work to get some insurance...I need insurance to get this checked....it's a catch-22.

What I'd like to know from you, is- what is onset of epilepsy like? Can I just suddenly have this, at age 32? Do these convulsion incidents/loss of bladder/not remembering sound like what you deal with?
From what I have read about epilepsy, it sounds just like it...
What have you done about healthcare without insurance? What have you done about driving? Work? Kids?
This just seems impossible to me right now....

 

[Cint]

What I'd like to know from you, is- what is onset of epilepsy like? Can I just suddenly have this, at age 32? Do these convulsion incidents/loss of bladder/not remembering sound like what you deal with?
From what I have read about epilepsy, it sounds just like it...
What have you done about healthcare without insurance? What have you done about driving? Work? Kids?
This just seems impossible to me right now....

Hi and welcome Jennergize,

Unfortunately, this does sound like epilepsy and it can suddenly come upon anyone at any age. I had my first TC seizure at the age of 22. I fell, had convulsions, and was injured. I didn't remember most of it.

After many tests were done to rule out tumors and such I was put on medications, but I did have insurance, so I don't have an answer for you on that one. Will you be able to get insurance thru your job after 6 months? As far as driving, if you are losing consciousness, please don't drive until you get it under control. Is there anyone you could carpool with?
And for the kids, do your parents or family live nearby? Any friends willing to help?

I know it seems overwhelming at first, but hang in there. Once you get a diagnosis and get it under control, there is light at the end.

 

[Juju26]

Cint is right, please don't drive.

I ignored my first unconscious seizure in March of this year and drove to work two days later and had a seizure and crashed into a fence, I was so lucky that I was in a parking lot and not on the road.

I don't mean to scare you, but I have had 13 unconscious seizures since then, I'm only 7 months into having epilepsy.

There are dozens of different things that can cause seizures, so you have to go see a doctor probably at the emergency room to see if there are any external factors or another medical problem that is causing you to have seizures. Some hospitals have income based medicaid not connected to state run medicaid, try to apply for it.

Be safe and don't give up.

 

[qtowngirl]

welcome jen, and hugs that you decided to join.
the stated above is pretty bang on; between juju cint and i we run the gammit for a position with epilepsy, and it's fairly safe to say those were seizures, known best as a grand mal (newer term is tonic clonic). being unconscious, bladder loss, woke confused are part and parcel of a grand mal seizure. bladder loss not always and not for everyone, but it is common. there are over 40 types of seizures but losing 'complete' consciousness is exclusive to a g.m.
my first one was age 25, middle of the night, woke to cops and ambulance around my bed (boyfriend had called). please believe you're not alone, we understand completely how scary the unknowns are right now.

seizures happen for many reasons aside from epilepsy (dehydration, lack of food, stress, hormones etc.), so as cint and juju said, see a doctor as soon as you can get in. even if you have to go to emergency to have someone do something, that's worth it too. best of luck and keep us posted.

 

[valeriedl]

I had my first seizure when I was 26 and it was a tonic clonic. I was admitted into the hospital after it because the seizures wouldn't stop.

After taking medicine my seizures are only partials, they type that you don't shake during. However I do have a tonic clonic about once a year.

During almost all my seizures I loose consciousness and don't remember anything that went on during them. A good bit of times unless there is someone there to see me have one I don't know that I did. If I have a horrible headache then I assume I did have a headache because that normally happens after my seizures.

I defiantly would not drive. When you have a seizure and lose consciousness then you don't know what you are doing behind the wheel. You're lucky with the accident that you had you didn't hurt yourself or someone else. Please try to find a way to get to work without driving - public transportation, carpooling or if there is another way.

Try to find a way to see a dr, even if it's going to mean getting your license taken away. Possibly getting on medicine could help get your seizures under control.

 

[Jennergize]

Thank you all for the responses.... It's nice to know that there are people who understand this whole thing....
I have found a few sliding-scale clinics that I will try to get into tomorrow. I am pretty anxious about starting to explore all this- I haven't told my family or friends what's been going on, except a few close friends, and seeking medical attention just makes this all so real.
I recognize it's necessary though... and after reading your responses, I will have someone drive me.

 

[Nakamova]

Good luck Jennergize, I hope the clinics can provide speedy diagnosis and treatment. It's pretty scary when the seizures come out of the blue. Hang in there, and keep asking questions. Good information can help you get a handle on what's going on and what to expect. If you can, write down everything you can think of leading up to the initial episodes, even if you don't think it's relevant: Any unusual stresses, health issues, odd sensations, allergies, fatigue etc. in the hours/days/months leading up to the seizures. You might be able to get some clues about what happened and why (although most of never figure out a definite primary cause).

My seizures arrived out of the blue at a particularly inconvenient time -- 35 and in the midst of ending a ten-year relationship. I seized at the exact moment as I was signing the lease on a new apartment. So... I was moving, trying to get over a break-up, and dealing with a scary neurological diagnosis while newly-single and unable to drive. That's when you find out who your friends are... Don't be afraid to ask for help.

Best,
Nakamova

 

[Ruth]

Hi Jennergize,

Welcome to CWE. It was started by Bernard out of love for his wife Stacy. That love has permeate throughout the whole forum.

We are all willing to help you. My seizures started when I was 6 years old, 1949. They were absence seizures. I still have them at the age of 70. I had my first tonic-clonic when I was 20 years old. I could write a book, but I will not bore you and everyone else. When I was 16 years old, it was legal to drive in the state I live in. I thought about it a lot. It was a major decision. I thought about what would happen if I had a seizure while driving. After a lot of thought, I decided that I could kill myself or someone else. I have never driven a car.

I move by bus stops, every time we move. My husband takes me a lot of places, as well.

I also have a Medic-Alert bracelet. They come in low cost to high cost. There are sports bands that are inexpensive. When you are in a hospital, the doctors can look up your Medic-Alert bracelet or necklace and call them up. They can find out who your doctors are, what medicines you are on, etc. You can look them up Online.

Again, welcome to our forum.

 

[mejohn1]

Happy Tuesday Jennergize! I'll second everything everyone has said so far, especially the driving part. I've had what are called "Partial" seizures for roughly 27 years, had never blacked out, never lost by bladder, just my head and eyes jerking to the left for a few seconds. They've always had an "aura" prior to them happening, which for me is a feeling of being weirded out and deja vu. Did you noticed any odd feelings prior to your seizures? The one grand mal I've had, which was in May of this year, had no aura with it and I experienced the same effects as you:bladder, black out, cracked my nose on something, and chomped on my tongue pretty bad. This made me stop driving because I've played chicken with society for 27 years and always had the aura to warn me of danger. Didn't have that with the grand mal and if I had been behind the wheel it would've been really bad. I understand your fear, I'm a single dad of a 5th grader in private school and it took me a while to get over asking for help as I thought of it as a bother to people. But if I drive through a house, then my kid has no one left (my wife passed 5 years ago). Do take care, and look into the resources this site has to offer, it's helped me a ton to deal.

 

[N Sperlo]

Hey, Jennergize. I have been peeking in here while I'm at work, but hadn't had time to go through everything. Sometimes my work takes up most my time, sometimes it leaves some. I really don't have anything to add. These folks here are smart and caring. I just jumped in the other week and will continue to visit the forum.

I just wish you luck, and am glad you have decided to take a brake from the driver's seat. I was diagnosed at 16 and had to step away. Being fresh to the road and a gearhead, that was not cool. Then again at 24. Get it under control and life will go on.

Best of luck.

 

[Bindi]

I can't really help you more than the advice that you'd already been giving here but I just wanted to tell you that I had the onset of epilepsy at age 36. No one knew why, I was very fit, not stressed, no accidents prior. Just...poof. So if anything, I just wanted to say that you are not alone. I remember searching for answers like you in the beginning. Hard to believe it when it starts.
I hope you get the help you need.

 

[Jennergize]

Wow- thank you all. It helps so much to be able to come here and read these responses... to not feel so alone.

I have been able to get rides to and from work the last few days, so have stayed out of the driver's seat as suggested. I'm feeling the sting of that...a loss of independence, but after having another episode yesterday morning, it has become clear that the risk for me right now is high.
I'm still not able to get the kind of medical attention I need, due to lack of insurance. NY state has some funky things going on in preparation for the new Obamacare, so even if I buy into NY state insurance now, it will kick in in November, but will end in December...hopefully the new national insurance marketplace will be affordable for this level of care.
I have found a free walk-in clinic to attend tonight, just to rule out emergency causes for the episodes, and also have an appointment with a sliding-scale-fee clinic next week, who can hopefully perform more in-depth testing. I am hoping that they will be able to help me figure out if this is maybe related to a thyroid condition I have had all my life... anyone have seizures related to thyroid dysfunction?

I still cannot believe how quickly life can change. I admit, seizures are not something I ever was exposed to- even in friends or family.... I had no idea how difficult this is.... I feel like you are all so brave and seem to be living so well with this.... I hope I can get whatever this is under control and find some level of peace. For now, I don't even trust that I can get through the day....it's scary not knowing why this is happening, and if/when it will happen again. I just hope I don't have something happen in front of my kids, or at work, or in front of a lot of people... How do you all handle that? Have any of you had seizures in public? Do people call 911? I really wouldn't want to be taken to a hospital right now without insurance.....
Do you ever feel like you should just stay in.....

 

[N Sperlo]

The fears you have, Jennergize, are things we all know very well. Friends and family need to know what to do. Its very scary sometimes. One nigh I couldn't fall asleep after my wife mentioned my arms tensed up. It could have been completely unrelated. I was shaking uncontrollably out of fear.

Prepare for the worst and expect the best. The rest is in your hands, and we're here to talk.

 

[cadsgj]

Jennergize, welcome. These folks here at CWE can give you some good advice. If you have questions ask away and if you don't feel comfortable posting openly, find a person you feel good reading about on their profile page, go to Contact Info and send them a private message. I do wish you the best in finding the right direction to just where you need to be... I do hope all goes well for you in beating this catch-22.

 

[Nakamova]

It's very scary and overwhelming at first, but it can get easier when you have a better sense of what's going on. My seizures are under control now, but in the past I've had them in front of friends or strangers, at work and at home. I've gotten used to them. I hope you don't have any more seizures, but if you do, you'll get the hang of what to do, who to tell, how to prepare, etc.. People who know I have epilepsy know that they shouldn't call 911 unless the seizure lasts longer than 5 minutes, or if there's some worry that I may have seriously hurt myself. Strangers will tend to call 911 as a default (since they won't be able to tell whether the seizure is new, or related to infection or poison.) If you come out of the seizure before the EMTs have gone anywhere you may be able to convince them that you don't need to go to the hospital, particularly if they know you are being seen by a neurologist.

I hope the clinics can help get you treatment and reassurance.

 

[Ruth]

I have been able to get rides to and from work the last few days, so have stayed out of the driver's seat as suggested. I'm feeling the sting of that...a loss of independence, but after having another episode yesterday morning, it has become clear that the risk for me right now is high.

I am hoping that they will be able to help me figure out if this is maybe related to a thyroid condition I have had all my life... anyone have seizures related to thyroid dysfunction?

I still cannot believe how quickly life can change. I admit, seizures are not something I ever was exposed to- even in friends or family.... I had no idea how difficult this is.... I feel like you are all so brave and seem to be living so well with this.... I hope I can get whatever this is under control and find some level of peace. For now, I don't even trust that I can get through the day....it's scary not knowing why this is happening, and if/when it will happen again. I just hope I don't have something happen in front of my kids, or at work, or in front of a lot of people... How do you all handle that? Have any of you had seizures in public? Do people call 911? I really wouldn't want to be taken to a hospital right now without insurance.....
Do you ever feel like you should just stay in.....

I feel like I can help you here. At least I hope so!!

Actually not driving has made me feel more independent. I could take buses or walk places all by myself. I never felt like I should "put myself in the closet." Never feel like that. If you have a seizure in public, people are more understanding about epilepsy. I have had a lot in public and usually wake up in the hospital. Someone must have called 911.

I had my children in my 20's, I all ready had epilepsy. I explained to them what I had, what it looked like when I had a seizure. I educated them. I told them what to do when I had a seizure. Children are more understanding than most people think. They will be scared if they do not know what is happening during a seizure.

I have had more thyroid tests than I can remember. They always show that my thyroid is normal. You should have a thyroid test when you can afford it just to rule it out. Rule out Diabetes, as well, it can cause seizures. I am on the glycemic Index Diet. You can look it up on the internet. My diabetes diet has lowered my amount of seizures. Also, when you feel tense, drink a cup of Chamomile tea. It will calm you down.

I do not feel "brave", I just accept it. I have always thought positive and accept it as a challenge. Life has changed in several different ways suddenly for me. It does for everyone.

You need a :hugs: to calm down now.

 

[Jennergize]

Quick update:

Got to the clinic tonight. Got my thyroid meds refilled, and levels for that.

Also was given Dilantin until I can get proper testing-- CT scan, EEG etc.
I had a neuro work up, which shows asymmetrical reflexes...(very weak on one side) I'm not sure what that means except that I will obviously need further testing, which can't happen until I can get some insurance, but I will make sure I figure that out.

The Dr. there believes that the seizures are possibly aggravated by my thyroid issues, but not caused by it. Of course, that's a guess at this point, at best... I am getting the sense it will be a long road to getting real answers.

I'm remaining positive, and have been reading here a lot which is sooo helpful. How cool is it that this forum exists?! I would be so lost right now....
Thank you all so much.

Jen

 

[Ruth]

Hi Jen,

Thank you for the update!!

The brain decides where the nerves will work and where they will not. I am weak on my right side. Sometimes it goes over to my left side. Sometimes, I have had Status seizures. That is the whole body. Tonic-Clonic seizures usually involve the whole body.

But most of us have a weak side.

I am glad that you are getting testing and results. That is great!!

 

[Cint]

The Dr. there believes that the seizures are possibly aggravated by my thyroid issues, but not caused by it. Of course, that's a guess at this point, at best... I am getting the sense it will be a long road to getting real answers.

Jenn,

I also have a hypothyroid problem in addition to my E. Plus Diabetes. Some AEDs can make the thyroid problems worse, so make sure your dr. knows about the medication's side effects. Also, have they checked your glucose level? Hypoglycemia (low blood sugar) could possibly bring on seizures for some, too.

And as all have said, stress is a #1 culprit for seizures. I have had quite a few CP's in public and my two children have grown up seeing their mom having TCs (the new name for grand mal seizures). I have had those a few times in public, and yes, 911 has been called. I was taken to the ER, only to be observed and charged an astronomical fee! I have gone "status" a few times- having a TC seizure that lasts longer than 5 minutes. My daughter thought her mommy was going to die. And of course, that was a time when 911 was called and I stayed in the hospital for two days. But that only happens when there is a change in meds or some sort of illness, etc. Plus I am one of those in that small percentage with refractory E.

There IS hope for you.

 

[MAB]

I'm new here too and so scared. I'm only having partial seizures but am scared they might progress to something worse. I'm also afraid of the meds used to treat seizures. I took Keppra and had a terrible allergic reaction. I took gabipentin in the past for nerve pain and it made me so out of control/raging that I nearly lost my job. Now the doctor wants me to try Lamictal. I need to be healthy and well because my husband and I are helping to raise our autistic grandson. His mom, my daughter in law, took Topamax for less than 2 weeks for severe migraine headaches and even though she has been off of it for over a year her cognitive function has not returned so she has a hard time taking care of our grandson.