newly diagnosed, and overwhelmed....

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Rhea

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Hi everyone! I've been reading over these forums some, and am hoping that maybe I can learn something. I was diagnosed with left temporal lobe epilepsy last month. I knew something was wrong with me, but not what Been seeing doctor after doctor for 5 years, trying to get one to believe me. I have been diagnosed with everything from fibromyalgia to bi-polar to "all-in-your-head". Within 15 mins. of my first neurologist appt., he kinda knew what was going on. Tests confirmed it. I have taken trileptal for about 5 weeks and have an appt. with a new neuro. on Tues. (Stupid insurance). My question is: I don't feel any different than I did. Does that mean it (trileptal) not working? Actually, I'm going to do more research on these forums, from people who know what it is like to have seizures. I'm just overwhelmed right now- trying to understand this, and dealing with a lot of stress in my life (shich I do know that doesn't help the seizures) So, I'm sure I will be here a lot in the next few weeks. I'm glad to have found this place, my head was spinning with too much information, and not knowing which was helpful. Thanks
 
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Welcome Rhea

I hope you get a lot out of this place. The information available is amazing & the people really are supportive. Sit down, relax, have a coffee:cheers: & check out the nooks & crannies of this site. If I can make a suggestion, mark down on paper (or in MS Word) the main points that you want to remember. That should make the huge amount info easier to review afterwards without forgetting things (it's what I do when I'm overwhelmed with information)

To tell if a medication is working you see if it stops your seizures. If you don't feel any different you're lucky. It's often the side-effects that make you feel different & they're usually not very enjoyable.
 
Hi, hello and

how do you do? Welcome to CWE.

Eric's got a good point. If you don't feel any different, in some ways that is really a good thing, because you aren't suffering from any side effects.

On the other hand, if you still feel "out of the loop" or whatever description it is that you have given to the doctor, then you need to let them know that. Five weeks is a good start on titration...but then again, it depends on how much of a final dose that the neuro wants to put you on.

Good luck, and stick around. Mr B, our host, has built us an AWESOME home here.

Meetz
:rock:
 
thanks everyone. I guess I'm officially ready to accept this and get on with my life. Yeah, I already write everything down. doesn't seem to be much side effects but not any improvement either. So, I start learning now what I'm dealing with and how to live a full life with it.
 
Hi Rhea! Welcome to CWE. :) Also, remember that it might take a while to get your medication levels right. Your neuro will probably want more blood work to see if the meds are at a therapeutic level for you. If trilep doesn't work, they'll try putting you on something different or maybe add another med to what you're already taking. This is the medication dance. And for those of us on meds, something we learn to deal with. I recommend that you keep a journal. Write this stuff down:
1. food and drink (what, when, and how much....that way your doc what you are eating and drinking everyday.)
2. Sleep (how much each night)
3. stress (physicaly illnesses like flus and cold count as stress, and what you are doing to deal with it)
4. oddness (odd sounds/tastes/feelings/smells/sights that you may get, when, and how long they last, as well as migraines if you have them...)
5. seizures (how long it lasted, when, and what you were doing prior.)
6. your cycle ( if you're a a woman, hormone fluctuation can trigger seizures too)
7. Any herbs/otc meds/supplements you are taking (what, when you take it, and how much)

Here's why you're writing this stuff down. We all have things that make us more likely to have a seizure. These are called triggers. The most common ones are lack of sleep and stress. There are others though, and that's what your going to look for. After you've been keeping this journal for awhile, you're going to go back and see if you notice a pattern. If you do, then you've found a trigger, and hopefully you can find a way to avoid that trigger and help your meds be more effective. You'll probably want to make some lifestyle changes to help your meds be more effective. These are the ones I usually suggest.

1. Eat 6 small meals a day (By small, I mean it should fit on a dessert or salad plate. ANd if you have a carb, you should have a protein too. Diabetes and hypoglycemia can trigger seizures. So keeping your blood sugar even will help. Also, try shopping around the edges of the grocery store. It's healthier, not nearly as many chemicals that can trigger seizures. And severly limit fast food consumption.)

2. Get 7 hours of sleep every night. No if's, and's , or but's.

3. Find healthy ways to deal with the stress in your life. (Yoga, exercise, art, meditation, cooking, baking, writing, these all work....find something that you enjoy that helps you to handle stress.)

4. Cut out the caffeine. (This includes coffee, tea, mate, sodas, and energy drinks. Caffeine is a stimulant and works against your meds.)

5. Do not take otc meds for colds. (Especially antihistamines for stuffed sinuses. Antihistamines are a stimulant too.)

These may seem like hard changes to make at first, but they can really help. Also, give your doc a copy when you see them. It will help them to see what your life is like, and they may notice a pattern that you don't.

Hope this helped. :)
 
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thanks very much skillefer. I will try all of these, and see what I come up with. I guess one of the hardest parts is trying to get my family to understand that I'm not "normal". I forget things, say wrong words, etc. I guess they have to adjust too, and it will take time. I didn't know that diet had any thing to do with it. Seems like all I do is eat. I also have hyperthyroidism, which is not getting fixed until the seizures are straightened out. So, the diet will probably be the hardest part. Thanks for all the advise, I'm open to suggestions from anyone that has been there, done that. I'm flying blind and have questions and stuff that seem too trivial for the doctor, I would use up half his day with them. (Got my coffee, reading glasses, comfortable chair) Ready to learn. So, I'm taking the day for ME and resting. Been on overdrive last 3 days and it caught up with me. Might not even fix dinner if I don't want to. Gotta take care of me first now, or I can't take care of everyone else. :clap::clap:
 
Did you tell your doc about the hyperthyroidism?? That can have an effect on your seizures. If I remember correctly, hyperthyroidism ( I hypo thyroid) is basically your system on overdrive. That can not only trigger seizures by itself, but can cause your meds to metabolise MUCH faster then the average persons....you may need a higher dose. Remind your doc, and ask him to run a blood serum level, as well as a thyroid test.
 
yes, they know. They did the test, but said "let's get the seizures regulated first, then deal with the thyroid." Is this not a good practice? So much I don't know.... sometimes it makes my head spin.:dontknow:
 
Welcome Rhea

I have the same symptoms/problems you have, although i don't have hyper-thyroidism. I do metabolize quickly though which is why low dosage of Keppra didnt work for me (i believe). My family and friends are still somewhat in denial too--and everyday i have to remind myself "gently" that E is what the thing is that's going on...it's not psychological or hormonal in basis although hormones and stress fit as triggers! I recently told my sis and mom that it's time to accept the E award....a lil' humor with acceptance goes a long way in all of our books. Message me any time if you want to talk!
 
I know this place has helped in tremenously in accepting my E. I really didn't know where to turn to for more information and turned to internet. I went on several sites, but this was the only one that everyone was so accepting and open to talking. Most of my knowledge has come from people here.
 
Your thyroid effects metabolism...so people who are hyper tend to be thin, while those who like me are hypo can gain 5 pounds smelling chocolate cake...:) I'd ask your neuro if you could get your blood serum levels checked, to make sure that you arent' metabolising the meds too fast. If you are, then it means the meds arent' being effective.... It sounds like you might have a doc that's forgotten that all the different parts of the body have to work together to have optimal health. What happens with one things can effect another.
 
Oh and by the way

5 weeks probably isnt long enough to have significant changes yet with your seizure control medication. When i started out on Keppra, i had it in my head that i wasnt severe enough to need more than a small dose (my docs put that in my head) so i never felt like i was simple/partial free. Through this forum, i have learned that most people need at least 1500 mg and upwards to 3000 mg (good working dose) whereas i was on 500. I now know why things didnt improve for me. I got up this morning and thought about telling you this 1st thing b4 i forgot!
 
Hi No Shame

I am on Keppra. My neurologist told me to take Vitamin B complex with it.

Thank you for telling us. I take 2000 mg a day. I forget a lot too.
 
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