I don't want to be here

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flitting

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.... but it seems like perhaps I need to be.... can't read too much right now.... need to stop with the tears as they upset hubby.

I am so frustrated with whatever the heck is going on with my body. I have been having problems for more than 2 years. It started with episodes of what seemed more like fainting than seizures - usually related to coughing.

Sometimes I don't actually fall - but not always. I almost always lose all bladder control.

I used to have no sense that it was about to happen; just wake up on the floor, often in a pool of blood with no idea how I got there. I don't injure myself as much now - we redid all the flooring in the house, so I no longer get carpet burns, although I am still very hard on my glasses and my poor ol' face.

My doctor did - after about a year of me complaining - send me for a few tests. Two showed abnormalities - one related to liver function, and the other was the Holter monitor, which showed irregularities in my heartbeat - but since those were not at the time of my fainting episode, he decided they were not significant.

He decided none of it was anything to worry about - said it was "cough syncope" and I should just not do it while on stairs or while driving.

I tried to listen, honest - but in November, I was driving to school one day and woke up just in time to see the tree. I broke one arm, sprained the other, lost my drivers' license - tons of fun stuff.

Finally the doc decided to care; he dithered a bit between sending me to an internist or a neurologist - but eventually chose the internist; my appointment is scheduled for April.

I have continued to FDGB (fall down go boom), of course.... very irregular; I can go weeks without a problem, then have as many as 8 - 10 episodes in a day.

They have also undergone significant changes lately. Over the last 2 weeks or so, I seem to be no longer just OUT. During some of them, I am semi-aware - can see my arms flailing around but can't make them STOP or anything.

Had one in class today. Mortifying. I am the teacher - was sitting on a desk at the front of the class when it happened - was still there - semi-aware, although I couldn't hear anything over the rushing of blood in my head. Took longer than usual to get back to functional and figure out what I was supposed to be saying/doing after; was totally cofused and out of it. The only positive bit was that somehow I did not lose bladder control and embarass myself even more, but it seems like it is only a matter of time.

I am a full time student and teach - have only been able to continue because my husband is amazing; he drives me everywhere and hangs around outside my classes in case I need him.

But starting in April, he goes back to work full time, and won't be able to do that. He will still drive me wherever - but will be on my own until he can come back for me.

Honestly, when it happened today in class it seemed like the last straw. I was tempted to just quit. Quit teaching, quit school... just quit going out of the house entirely.

I'm trying to get past that.... but honestly, I don't know how much longer I can DO this.

Anyway.... this is way too long; I'm sorry...I'll shut up now.
 
You're very welcome here

even if you'd rather be somewhere else. I do know that feeling of just wanting to give up though. It really does sound like you should see a neurologist instead of an intern. There's tons of info here but check out http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/ Hopefully it will explain a few things that have been happening to you.

Meanwhile try to get comfortable, the people here are really great & very supportive. We even have a padded room where you can scream, yell or even jump up & down if want.

There's at least 1 person here who teaches & has seizures. I'm sure they'll say "hi" when she sees your post. Meanwhile I hope this place helps make things easier for you.

Welcome:hello:
 
Well, I'm

not an actual teacher, I'm a sub, as are a couple of others here. But there really is a couple of others here that are teachers.

Welcome to CWE. You really need to twist your doc's arm and go to the neuro instead. Or see if you can get into one on your own. But you REALLY need to get in and see one.......ASAP.....
 
I talked to the receptionists at the hospital that did my ECG, EKG and so on ... they spoke very highly of the internist I've been sent to .... said that she is very thorough and known for not giving up until she figures things out.... and that she will likely be able to get me in with a neuro if that is indicated a lot faster than my own doc. (they rolled their eyes at my doc's name - apparently I'm not the only one who finds him totally useless)
 
I did mention that the episodes seem to have changed significantly when I saw him last week but he really wasn't much interested
 
Lolol

Then that is a very good thing. And if she is as good as these people think she is, maybe she will be able to get you in just as fast, too. We can hope......
 
I sure hope so

even if its not something that can be FIXED ....would be a relief just to know what is going ON at this point
 
Well, I am a teacher and am 4 years from retirement so I've taught a long time. I have complex and simple partial seizures that seem to be completely controlled by medication at this point in time. I was only diagnosed last fall so haven't had to live with it as long as some others although I have had "episodes" for 15-20 years that weren't identified as seizures. I have a friend though who also has epilepsy and is a music teacher -- she's taught longer than I have and has had seizures since college. She told me that once she had one right before the start of a music concert. Whatever you do, don't give up now. You are so close to finding out what is really going on so please hang in there. Once you get some answers, there's a good chance it can be treated effectively. You will receive a lot of support on this forum so please keep us posted!
 
I guess the hardest part-aside from the embarassment- is knowing how to handle it with students. I would prefer not to go there. But when you FDGB right in front of them... Today's class had obviously heard about yesterday
 
Hi Flitting

You are in the right place. You are in the best place for support and caring friends. Once you have been here for awhile, you will fit right in. Stay around. You will get your answers here.
 
I would probably just tell them that you have a medical problem that you and the Dr. are working to figure out and that it might happen again. Give them information about what to do if/when it does happen again. Then, when you do get an answer, let them know what the scoop is. I have found that kids do pretty well if we trust them with the truth. This is also an opportunity for you to educate your students on epilepsy (if that is what it turns out to be). You'll get through this and we'll all be here to encourage you!
 
No need to quit teaching. :) I have epilepsy, and I'm a full time teacher. I've been teaching for more then 10 years with this condition, and yes, I've had seizures in class. And, yes, I've lost bladder control too. So I kinda know where you might be coming from. Honestly, if I were you, I'd go see a neurologist. If it takes a car wreck to get your doc. to do something, it's time to get a new doctor too.

As for how to deal with the FDGB with kids...I do it at the start of every semester. It depends on how old the kids are. Mine have been in middle school and high school. For them, I explain what a seizure is, what it looks like, and what to do if they see me have one. Then I explain that it can be scary and that if they feel more comfortable, they can go outside the classroom and wait. Also, I explain to them that I am not dying, and that I'll be back the next day. As I said, how to word it all depends on the kids you teach. But I think you'll find that the kids are a lot less scared or freaked out if you give them a heads up on your condition.
 
My daughter is in HS and has seizures. The other students are getting a lesson in seizure disorders. Some of them would rather be elsewhere.

I think your internist sounds great. When you say she doesn't give up.... I like that kind of doctor. Unfortunately most neurologists just seem to want to medicate and see you in six months. This did not work for my daughter. We have gone the alternative route and now it is showing that low blood sugar has caused many of her episodes. Doubt we would have realized this had she continued to be medicated.

We are working with a combination of alternatives. Nutritional changes, vitamin and mineral supplements to support brain and body health, bio-identical progesterone, and neurofeedback

According to her calendar journal, her seizures are reducing over time. I credit a cleaner, toxin free diet
 
by entering CWE you've chosen not to give-up. Chin up, now join us. We all have felt the same pain prior to joining CWE. Our common denominator is Mr. E aka spy. Yet we found wings and learn to fly, thanks to CWE. Chin up, now join us in flight.
 
Hi Robin

My neurologist has cut back on my medicines. It has caused me to have more seizures. I see him Thursday.
 
Hosea said:
by entering CWE you've chosen not to give-up. Chin up, now join us. We all have felt the same pain prior to joining CWE. Our common denominator is Mr. E aka spy. Yet we found wings and learn to fly, thanks to CWE. Chin up, now join us in flight.
Click to expand...
Written by Hosea:
 
oh, I should have clarified.... not kids.... well, not officially ...I teach college courses... so I only see each group 3 hours a week and had HOPED not to have to deal with it....

was really irked that I did have to .... partly because my medical issues are none of their business ...well, except when I manage to FDGB in class, I guess.

I haven't even met the new doc yet... but have heard only positive stuff...I'm hoping that she can help me to find a new family doctor as well, although I don't know that she will be able/willing... probably not "right" ethically, given that Dr. P made the referral to her.

but I seriously need a new one ... when I have a UTI or whatever, I have a LOT more FDGB episodes... like 10+ a day .... I was not impressed at being told that I would have to wait a full week for an appointment last time.

I am in Canada... in an area that has significant shortages of GPs... a lot of them are not taking new patients.

My husband's doctor is willing to take me, but he is gruff to the point of mean, and usually a 1+ week wait to get in there too ... really limited office hours. And he's basically already indicated, the one time I did see him, that he's not interested in doing anything about anything until I quit smoking and lose weight.

Which I know I need to do, and am trying...but ...
 
My GP, neuro, and OB/GYN told me the same thing regarding smoking...and I'm finally doing it. While you wait to see a neuro, there are some things that you can do to help the situation, ok? My major suggestion is to keep a journal and write down the following:

1. Food and drink (what you take in, when, and how much....this lets the doc, the internist or neuro check to see if you're eating often enough and how often. It can help rule out diabetes and hypoglycemia, both of which can trigger seizures.)

2. Sleep (how many hours each night and whether it's interrupted)

3. stress (what's stressing you and how do you deal with it....being ill with colds/flus/infections counts as stress)

4. OTC meds or supplements (write down EVERYTHING you're taking. It may be that you're allergic to something or that the OTC/supplements are interacting)

5. Time of month (when, and how many days your cycle is. This rules out hormones.)

6. caffeine (how many cups a day and when....caffeine includes tea (black, green, white, etc...), coffee, mate, chocolate, sodas, energy drinks...)

7. cigarettes (they're a stimulant, and if your FDGB are seizures, then they may be causing some of your spells...)

8. odd feelings (odd tastes/smells/sights/sounds/feelings, migraines, etc....when, how long they last, what they are like)

Ok...now that you've got all this info down...and I recommend that you start this today so that you can give a photocopy to the internist...it'll help them out too... Here are some things that you may want to do to see if they cut the number of FDGB's you have....

1. Food and drink (make sure you get 6 small meals a day...and by small, I mean it fits on a dessert plate. Also, a protein for each carb you eat. This is to make sure that you're blood sugar is stable. Added benefit, weightloss. :) Also, you might want to try eating healthier by just shopping around the edges of the grocery store. Some people are allergic to certain chemicals that are regularly added to food on the shelves. )

2. Sleep (get 7 hours uninterrupted every night...no ifs, ands, or buts)

3. Stress- find healthy ways to deal with it. walking, yoga, meditation, exercise, art, writing, gardening..whatever relaxes you (and TV does NOT count)

4. Quit taking OTC meds...especially cold medicines

5. Quit drinking anything with caffeine (I know...this one is hard. I was a 9 cup a day drinker of coffee...but if caffeine is helping to trigger the FDGB's you definitely need to cut back.)

6. Cut back on the smokes. ( I just quit recently. What I did was wean myself to a certain point, and then quit cold turkey.)

7. Quit any alcohol. (alcohol can trigger seizures for some people.)

8. If you notice more FDGB's after watching TV or movies or using the computer, then stop doing those things as much as possible.

Hope this helps!
 
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Hi flitting,

It looks like skillefer has covered everything. Except for one thing. You said that you have UTI's. Being a diabetic type 2, I do as well. The cure for that is put some cranberries in your breakfast. Not cranberry juice, that has too much sugar. Since I have put cranberries in my breakfast, I have not had a UTI.
 
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