just kinda diagnosed...maybe

[sansnir]

I've been exploring online all day, and it seems like forums like these are the only place to find any real answers. I know it's different for everyone, but there seems to be so much Drs can't explain!

Yesterday I was visiting a friend at the hospital and had what they say was a seizure. I was just sitting there, and I started experiencing a weird smell. I've been having strange, flashback type episodes with this particular smell (but I couldn't tell you what it actually smells like) for about 10 months, anywhere from twice a day to only twice a month. Usually, I just sort of power through it. The smell makes me nauseated, and I always feel as though there are dream/ memory snippets that I could piece together to figure this thing out if I could only remember them... Anyway, this time I didn't "power through:" I woke up being rolled to the ER. It seemed to me as though I had passed out, or been dreaming for maybe 15 minutes. I dreamt I was waking up at home and people were all over my bedroom going through my things. The friend I was visiting was present in my dream, so I'm guessing that what I was hearing affected the course of the dream. Now I've heard that I was twitching, screaming, and swearing during that time.

They did an MRI and bloodwork: everything is supposedly normal. I left with a script for Tegretol and instuctions to go see a neurologist in a couple weeks. My understanding is that the neurologist needs to confirm through bloodwork that I'm taking this medication, so that I can drive again? Shouldn't I be talking to a neurologist BEFORE I start taking random meds to control something that has only happened once?

For now, I'm realizing that I'm missing chunks of memory from yesterday post-seizure, and I feel like I was kicked by a horse! Every muscle aches... Is any of this normal? Is there any normal, or is it different for everyone every time? Any insights for a newbie?

 

[Meetz1064]

Mmmmmmmmmmm

That sounds like a good ole tonic clonic that you had yesterday. From the description that you give....the pain after, the missing chunks of memory. Those smells you mention---those are partial seizures, better known as AURAS.

It's not unusual for the bloodwork and testing to show up as normal. That happens quite often. Be sure that you have an EEG that is AT LEAST 24 hours long at some point in order to help with your diagnosis. If you can get one that is 48 to 72 hours or longer, that would be even better.

I don't know what state you're in, but it may be that your state requires immediate medical intervention (medication) until it can be determined what caused your seizure---and then the doctor can give you the OK to drive again. That, unfortunately, is one of the problems that we face with E.

Make sure that you start an E journal to try to find a pattern, and possible a trigger for the seizures that are going on.

Btw, welcome to CWE. You'll find lots of support here, plenty of information and friends, too. Mr B has built us an AWESOME home here.

Take care,

Meetz
:rock:

 

[dfwtexas]

Welcome, I got diagnosed last year and found this is be a great place. Even after I got diagnosed, there is a lot you can't learn in a brief neuro appointment.
Seizures vary from person to person, I don't get the weird smell, but there are a lot of people on here that do.
I would agree that is would seem they might want to wait, but if you can't see a neuro for a couple of weeks, sounds like they are concerned about you not being on meds until then.
You should take this time to start a journal. We all have different triggers, things that cause us to seize. Lack of sleep, stress are two common ones. But food, lights (I have problems with certain kinds of lights,ie strobe lights, flouresants). If you can think back on your day prior to the seizure that might be a start.
I know when I have a seizure, I will lose 20-30 minutes and not have a memory of that time frame. Neuro told me my seize only last for a short time, less than a minute, but I in post-italic state for the remaining time.
Jenn

 

[sansnir]

Thank you so much for hearing me and taking a moment to respond! I am so overwhelmed (and sore!)

 

[Nakamova]

Hi Sansnir --

After my first seizures, my back felt like it was one massive bruise. It wasn't, but the muscles were incredibly tender. I went to a physical therapist friend of mine who made sure that there wasn't any serious damage, did an ultrasound, and gave me some very gentle stretching exercises to do as I recovered.

The doctors prescribe the anti-seizure medicine just to be on the safe side -- you may or not may not need it over the long run. If it turns out you don't need it they will give instructions about how to taper off. (BTW, I was given way too much meds after my first seizures -- I felt so terrible, and was so confused in the aftermath, that I thought it was the epilepsy that made me feel that way, then I later realized that the overmedication was to blame. Make sure you know what the potential side effects are so you can interpret anything unusual you may feel).

I hope you can see a neurologist quickly to get a better sense of what happened. An EEG will probably be done, to see if anything definitive shows up in terms of your brainwaves. In the meantime, can you think of anything that might have triggered this particular seizure? There are various factors (lack of sleep, food allergies, diet/metabolism issues, dehydration, etc.) that can precipitate a seizure.

Best,
Nakamova

 

[RobinN]

Welcome Sansnir -
If I had it to do all over again, I would have waited on the meds the neuro gave my daughter. We have seen far better results from changing nutritional choices. There is a lot to digest (no pun intended) on the subject, but worth every minute IMO.

Doctors just don't have the time or the knowledge to start with alternatives first. Your quality of life will be far better if you do. But that is just my opinion.

 

[sansnir]

I decided not to start the meds just yet. I teach high school, and I will have over 150 new kids next Monday.... I cannot be spacey or tired or whatever else Tagretol has in store for me. Of course, wetting myself, etc. wasn't really in my plans for the first days of school either.

I am still really sore from Saturday's episode, but no more weird smell or anything since then. I do feel like I'm walking around on egg shells waiting for another whatever that was to lay me out again.... I'm almost 35---how does this just suddenly appear?

I was able to get in to see a neurologist this Wednesday. I know she may not have all the answers, but it's not hard to have more answers than me right now.

 

[Meetz1064]

E can

just show up whenever it feels like it..........even in the 70s and 80s, so don't feel bad.

As for why you suddenly tripped off? Who knows. Hormones? Are you pregnant? Are you going through some type of hormonal change? Have you had a lot less sleep than normal? Eaten something that you've never eaten before? Food, stress, hormones, visual patterns, lack of sleep.........all of these things can be triggers for ANYONE to suddenly trip off into a seizure at any point into their life....but they have to have a lower seizure threshold, too, and that is what the difference is between an E patient, and someone that isn't. E patients have a lower seizure threshold, and seizure more easily........

Start keeping an E journal. It will help you determine, in the long run, what your triggers are........

 

[dfwtexas]

my seizures started at age 47. My docs suspect either one of many infections or my IV meds did it to me...but no way to prove it. they said 90% cannot be proved what started the seizures

 

[sansnir]

It's not too hard for me to retrace the last week to try to figure out what might have set off this Big One, but I've been having the weird deja vu smell thing for almost a year: do those count as auras or mini-seizures? If so, it will be much harder for me to say, "oh yeah, I'm sure I had Chinese food an hour before," you know? I was trying to figure those out, but more as a misplaced memory than looking for a trigger. I wasn't able to come up with anything.

Because I was fortunate to get an appt with the neurologist so quickly, can anyone recommend questions I should definitely ask, or points I really should make?

Thank you all so much for your support in this. I thought I had things pretty together until the day before yesterday.... now I know there is so much I don't know!

 

[dfwtexas]

I recommend you write down a list of questions for this visit and further visits. I only see my neuro once every 6 months unless I have a seizure, so I keep a list in my purse to add to it during that time. The neuro will probably want to run tests. Mine did EEG and MRI. But I have learned on here that all seizures do not necessary show up on EEGs. If she runs tests, she may not want to answer specific questions until she sees the results. She will probably do a general test, checking your eyes, your reflexes, co-ordination, etc. My neuro does that on every visit. I was in total denial when I went to my first appointment, I think all I did was explain there was no way I was having seizures!
You may want to discuss medication options and alternative treatment. Good luck, let us know how it goes

 

[knothing]

Sansnir welcome to this site. I have never heard of state regulation regarding having to take meds for a seizure, at least in my state. But as far as driving is concerned take the time to check the state law. If you have a seizure when driving and the state law states that you should not be driving at that time and you hurt someone you could end up in a lot of legal trouble. That is in the US , if you are from outside the US I am sure your country would have some laws regarding this.

 

[Rhea]

sansnir- welcome and get comfortable! Your episodes sound a lot like I was going through for 5 years. Finally, was discovered I have E. It can show up at anytime. anyplace. I was 44 when I was diagnosed, probably about 40 or 41 when they started. (As far as I know) This is an excellent place to learn about the everyday things we face with E. It's also great for explaining everything you want to know. :hello:

 

[Meetz1064]

In answer

to your question about the deja vu episodes----yes, those are seizures (auras), too.

Please keep in mind that an EEG is a "snapshot in time" of what is going on in your brain during that specific time that you are hooked up. So, if you are only hooked up for 20 minutes to an hour, and nothing shows up, don't be surprised. Then again, I have had E since I was born, and my EEGs were totally clean for over 40 years---until about 3 years ago.

jgb is right about keeping that list of questions. And remember, if you're not happy with the answers you're getting, you CAN get a second or third opinion...

In the meantime, here's what I tell people to put into a journal. I know it's a detailed list, BUT.....it does help to find a pattern. Some people write it in a notebook, others use a calendar......whatever floats your boat........

*********************************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses to the Above List


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

Some people to choose to track when they move their bowels, too, as they find that that is also a trigger.....(sorry if TMI)

Good luck, and take care!

Meetz
:rock: