Just joined CWE, I'm hoping to get some answers!

[PattyMelt]

Hi all, my name is Patrick, I'm 35, and had my first two seizures this past December 28th. I went ahead and copied my profile section about my seizure history. Please feel free to comment or PM me if you have any advise, or suggestions.

I still haven't been officially diagnosed with epilepsy, but after extensive research online, it seems like that could possibly be what I have. My Dr, also said that I may have Epilepsy. How are you actually diagnosed???

I had my first two seizures back to back 3 min apart (according to witness at the airport). I passed out completely, in fact I remember being annoyed when they were trying to wake me up because I thought I was sleeping. I had no clue how I got to the airport, what day it was, etc etc... I was taken to the hospital, and the Dr's ran tons of tests and couldn't find anything. I had my 3rd seizure two weeks later after walking 2 miles, I remember my heart rate being super high, and then I passed out again... lucky I was on the phone, and my friend came immediately, and called 911. I had my 4th seizure today at about 3am. I woke up suddenly after chomping down on my tongue, and my whole body was shaking. Today my hands have been pretty shaky, and my mind feels kinda spacey. I didn't go to the hospital, in fact I immediately passed out after biting my tongue. I wanted to join this forum to HOPEFULLY get some answers. The Dr's don't seem to know anything. I'm on two anti-depressants, and Subutex (medicine to come off opiates, I was on Vicodin over a year for pain and was prescribed subutex to help with the withdrawals. I don't abuse my medications, and they put me on hydroxyzine HCI, and honestly I think it's for seizures, but I'm not sure. My past drug use was recreational, but I used pretty much everything at least once except for LSD. I mostly only used ecstasy for about 5 years, and I know I took quite a bit. I wonder if that could be why I'm having the seizures. I just seems like it could be so many different factors. I also fell 10 ft backwards off a small cliff about 3 months before my first seizure... I also think maybe I hit my head... I know I blacked out for a couple mins.

I'm really hoping to learn more about Epilepsy. I didn't know so many people suffer from this disease. I'm still having a very difficult time accepting this, and it's SO SCARY not knowing when you're next seizure will be.

 

[PattyMelt]

Another question. Should I be calling 911 every time I have a seizure? I've blacked out with all 4 seizures I've had.

 

[Nakamova]

Hi PattyMelt, welcome!

This is a great site for getting info about seizure disorders. We aren't doctors, but we can offer loads of empathy and anecdotal advice to help you cope.

Here's some info to get you started: Epilepsy isn't so much a disease, as it is a chronic condition, like asthma or diabetes. The term "epilepsy" is actually a catch-all for a wide variety of seizure disorders. It's usually diagnosed by taking into account clinical info (what you've actually experienced in terms of symptoms/seizures) and info from tests like EEGs and MRIs. Not everyone with a seizure disorder has a positive EEG -- some kinds of seizures originate too deep in the brain to register. The symptoms you describe do sound like seizures, so it's important that you see a neurologist to figure out what's going on.

A neurologist can look at your past medical history and help decide whether it would be a good idea to try an anti-seizure med. (BTW, HCI isn't a seizure drug, it's an antihistamine usually prescribed for allergies or mild anxiety). It's important to be very careful when combining AEDs with anti-depressants or other meds.

Both the Ecstasy use and your head injury could be potential seizure triggers. Sometimes it's a combination of factors that can trigger a seizure, or a cumulative effect over time. Most cases of epilepsy don't have a definitive cause, though, and the focus tends to be on finding a treatment rather than the cause. It's especially important to get treatment if your seizures seem to be increasing in frequency or in severity. You don't necessarily need to call 911 after every seizure -- unless there's a chance a serious injury has occurred during the seizure -- but it is important to get your self under a neurologist's care, and to try and get an handle on what's going on.

Best,
Nakamova

 

[PattyMelt]

Hello Nakamova!

Thank you for your informative post! You really helped me understand more which always helps. I have a few more questions. Is it ok to take sleeping pills if I have a hard time sleeping? I just take a over the counter one, and not every night. I think my biggest fear is having one at night which happened last night, but luckily I woke up and stayed on my side, but I'm so scared being asleep I'll be in a bad position or will choke or something. I guess every seizure is different, and I know it's part of learning to deal with them. I know I can't stop my life because I'm afraid, but joining this site has really helped me cope better, and I will for sure go see a Neurologist soon.

Thanks again Nakamova!
Patrick

 

[Nakamova]

Hi Patrick --

If you've been taking the sleeping pills without any problem, then it's probably okay to continue. Are the pills melatonin? Some other CWE members take them to help with sleep as well. When you see your doctor or neurologist, make sure to tell them what pills you've been taking including any over-the-counter meds.

I know it can be scary having a seizure, especially when you still don't have a sense of what's going on and how your brain and body behave. I can tell you that it would be pretty unusual to choke while having a nighttime seizure -- but if you're feeling nervous it would probably help have a friend or family member stay with you until you get a handle on things. It can also be useful to have someone come with you to your doctor's appointments, to keep track of all the questions you might have, and the doctor's redponses.

 

[Chel]

Welcome, Patrick

Just a couple of quick tips, as I'm post-ictal and not thinking too clearly today:

- click on the Search link near the top right right of this 'page' and look for posts on triggers.
- read up on triggers and see if any of the triggers that affect any of us, are in your life. I've read your intro, and there are obviously a few that you've acknowledged already, but there could also be food triggers (by food, I mean anything that goes in your body, drinks etc), lights (photosensitivity), sound.
- see if there is anything on that list you can remove before you see a neurologist.
- read the lists of symptoms of simple partial and complex partial seizure activities.

The reason I'm suggesting this, is because this made the difference for me in getting a diagnosis. I was bashing my head against a brick wall with my doctors (general and neuro), until I removed my primary trigger (a tea) and stopped my main seizure activity by myself. I'd been having near-constant sp seizures for over 6 months (longer, if you want to count my migraine activity as seizures), plus some complex partials.

I armed myself with info I'd learned from the good folk here, the changes between the days when I drank this tea and when I stopped, used the terms I learned here, and got my EEG. I seized during my EEG, giving a clear diagnosis of tle.

So, what I'm saying in my waffling way, is look around and make the most of the resources here before you see your neuro - it made all the difference to how mine responded to me, and ultimately my diagnosis.

Chel

 

[Bernard]

Hi Patrick, welcome to the forum. :hello:

... How are you actually diagnosed??? ...

That's a good question. The answer isn't so simple unfortunately. There are lots of people who get a diagnosis and later find it wasn't quite correct. The brain/body isn't a static state machine either, so it's possible for the system to change - for better, worse or just different - over time (and in response to different treatments).

Doctors rely on observable data to make a diagnosis. This often includes such things as EEG tests (veeg, etc.) which are not 100% reliable.

One thing is for sure though. If you are experiencing multiple (or ongoing) seizures, you have an issue which you need to address. Whether you get a formal diagnosis or not, I'm sure you will find something of value from the community here.

... I'm on two anti-depressants, ...

http://www.coping-with-epilepsy.com/forums/f33/antidepressants-seizure-threshold-3896/#post35790

... I mostly only used ecstasy for about 5 years, and I know I took quite a bit. I wonder if that could be why I'm having the seizures. ...

http://www.coping-with-epilepsy.com/forums/f23/ecstasy-causes-seizures-e-x-candy-rave-drugs-5334/

... I'm really hoping to learn more about Epilepsy. ...

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

... I'm still having a very difficult time accepting this, and it's SO SCARY not knowing when you're next seizure will be.

Welcome to the party, pal! /John McClane

Another question. Should I be calling 911 every time I have a seizure? I've blacked out with all 4 seizures I've had.

We only call 911 if my wife goes status epilepticus.

 

[PattyMelt]

Thank you Chel! You also really helped me. The more I research the more I understand, and I think I've had way more seizures than I realized. I'm not sure, but when I go to sleep sometimes I will wake up all the sudden feeling like my whole body was hit by electricity or something. I know my whole body does one big movement, but no shaking, just one big one. Is this something to do with seizures you think? It happened 3 times last night.

 

[PattyMelt]

Thanks Bernard! I'm going to read those posts now. It's so nice to be on this forum. I live in Texas for school, and the majority of my friends and all my family are back in California, so it's hard being here alone. I feel much better having this forum and don't feel so alone now. Thank you to everyone for all your support!

 

[Bernard]

There are a few members here that are also in Austin and few of them do meet at a support group:

http://www.coping-with-epilepsy.com/forums/f37/epilepsy-support-group-austin-8195/

 

[Chel]

sometimes I will wake up all the sudden feeling like my whole body was hit by electricity or something.

That sounds like some of my nocturnal seizures, Patrick, so I would say 'yes'. I wake up throwing my arms out in front of me, or bringing my arms down from above me, sometimes gasping as if waking from death.

None of this helps you get a good nights rest, which is important, as sleep deprivation is an E trigger. It's a vicious circle, and I do mean vicious.

Great links posted by our venerable leader Bernard - I knew someone with their brains screwed in would take care of that *smile*

Keep reading, keep learning.

Cheers
Chel

 

[PattyMelt]

Thank you Chel, another question answered! I think they're probably minor seizures, but yes I haven't had a full nights sleep in two weeks now. Those happen almost every night, so I'm FOR sure going to the Dr's tomorrow.

Again, I can't thank everyone for all their support. No one seems to really know what to say, and so it's nice to go somewhere where people understand you.

~Patrick

 

[Endless]

Hi, Patrick,

Welcome to the forum!

What you are experiencing can be so scary. I'm glad you are seeing the doctor. just hang in there and things will get better.

It could be epilepsy, it could be something else. Diagnosis can be pretty tricky. If they didn't find anything at the hospital (no positive EEG), the docs are going to want to run every test imaginable to rule out other causes of your episodes, like heart (synoscope), stroke, infections (like meningitis), CSF pressure, sleep disorders, etc. From your history a factor might also be the use of drugs and drug withrawal.

My epi (seizure specialist) was pretty sure my seizures were epilepsy. Turns out they may be caused, at least in part, by high Cerebral Spinal Fluid pressure in my brain. It's taken a year and a half of intense investigation to find this. I'm still on anti-seizure meds in case there is more than one thing going on and I have epilepsy as well. I guess the moral of this story is that diagnosis is a long and winding path.

Question: the witnesses to one of your seizures said they thought you were asleep. Were you just peacefully sitting or laying there, eyes closed, not moving? Were there any other witnesses to your seizures? How long do they usually last? How does your body feel afterwards? Are you in the same place you were before the seizures, or somewhere else?

The electrical shock thing - I get that, sometimes during the day and sometimes at night, but in my case it is nerve pain, and in some cases it's an after-effect of head injuries. I take neurontin for it.

Should you call 911 every time? If you aren't injured, there's probably no reason to, IF it is an epileptic seizure. If it's not epileptic and it's caused by mini-strokes or another cardio-vascular reason, then the answer is YES, you should go to the hospital, as fast as possible.

Do see both a very good primary care doctor and a neurologist as soon as you can. The PCP can chase down the possible non-epilepsy reasons, and the neurologist can evaluate you for epilepsy. Sometimes you have to push these docs a little, and sometimes switch docs, until you get the answers you need.

Good luck. Hang in there.

 

[PattyMelt]

Question: the witnesses to one of your seizures said they thought you were asleep.

I'll give a little more detail hehe. I was at the airport, and had just gone through security. My last memory was looking at my ticket to see what gate to go too, and then as I was walking I looked up and saw the sign showing me where to go. Next thing I knew, was I was laying down, with eyes shut, but had no clue what was going on. I guess I thought I was asleep or napping, when I started to hear people talking, and I opened my eyes I saw a ton of people all around me. I don't remember much, but they told me I had two 5 or 6 min seizures, I had one seizure, and then was laying there, and they said 3 min later I had another 5 min seizure.

Were you just peacefully sitting or laying there, eyes closed, not moving?

I guess there were several witness being two days after Christmas at the airport lol, but they said that my body was shaking and arms and legs moving around... don't quite remember their exact words, but something like that. I don't remember if my eyes were moving, or anything like that.

How does your body feel afterwards? Are you in the same place you were before the seizures, or somewhere else?

The bad seizures that I blacked out on I felt very weird. I had slight temporary memory loss. Like, they asked how I got to the airport. I had no clue. I didn't know what city I was in, but I knew my name and SSN#, but things that had happened recently I had no memory. It was like a blank slate. The week or so after I felt sluggish, and empty minded. Since I stopped taking Keppra 1000mg a day 3 days ago, I've been experiencing smaller seizures, almost like someone shocking me. It wakes me up every time, and my body almost completely jumps in the air. Very weird. Last night I bit the side of my tongue in the same exact spot as I did on my first seizure. (which I actually bit my tongue and lip to where they were bleeding.)

Honestly this is much harder than I thought it would be. I'm on two anti depressants, Lexapro, and welbutrin. (Dr. took me off welbutrin and put me on Keppra, but I couldn't afford it...over 200 bucks a month. So I'm back on Welbutrin) But a lot of friends have stopped talking to me, I'm not sure if it's the meds, my best friend said I haven't changed, or people don't understand seizures. It makes this process very hard and lonely

Thanks for responding Endless! :woot:

~Patrick

 

[RobinN]

The bad seizures that I blacked out on I felt very weird. I had slight temporary memory loss. Like, they asked how I got to the airport. I had no clue. I didn't know what city I was in, but I knew my name and SSN#, but things that had happened recently I had no memory. It was like a blank slate.

This is what happened to my daughter when she had her seizures.

After making nutritional changes, supplementing with vitamins and minerals for brain and body health, my daughter has made huge strides in seizure control. I view the term Epilepsy as nothing other than a label meaning more than two seizures of unknown cause. Seizures are a symptom. Doctors tend to treat symptoms and not the cause. My daughters seizures were a wake up call to look at our nutritional choices closely.

She had a tough time with friends, for about four years when she was having the most difficulty. Since she has been progressively getting better (it has been a slow but steady improvement, with an occasional back slide) she is finding people that are supportive. Those that weren't, she decided weren't worth having as friends.

Rebecca remains seizure free and med free.

 

[PattyMelt]

Thanks Robin! I've been wondering if nutrition plays a part in Seizure control. The thought actually occurred last night as I spread 2 tbls of butter on my toast... yum! I LOVE butter, and ice cream, and all things yummy, but I do have self control and do use moderation. I never eat fast food, and I cook at home every day. I take multi vitamins, eat veggies, and fish... so I dunno. Seems like it's a needle in a hay stack.

 

[Endless]

Patrick,

Your seizure meds are important! Depression meds are not a substitute. There is help available to pay for them.

Take a look at this thread:

http://www.coping-with-epilepsy.com/forums/f23/when-you-cant-afford-medication-1452/