New to Epilepsy but not new to meds

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Patricia

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Hi,

I am in process of being formally diagnosed with Epilepsy. I have spent 8 days in EMU, Epilepsy Monitoring Unit, last November but did not have any events while there. I am waiting to get the results in March.

I have Trigeminal Neuralgia and have been on Carbamazepine for almost 5 years for that. I also take Baclofen and Nortriptyline for the same condition. I had neurosurgery in September of 2013 to try and eliminate symptoms of TN but the surgery left me with several incidental complications such as vestibular issues and a blood clot in my brain.

My seizures are typically where I stare and feel frozen. I can hear what is going on a usually respond but feel somewhat 'dull' afterwards. This past December I had a seizure during sleep where I wet the bed.

I am concerned about what they will find/say. Is anyone else's history similar?
 
Welcome To CWE Patricia!!!!!!

I believe you should be able to get answers and advice from the members of CWE that will help you in your journey with E. You may have another problem that needs medications similar to the types a person w/E needs to take, but E is a condition that has many things that happen that are much different!
The best way to describe E is to compare E to a lightening strike. I'm sure you are aware of what can happen when lightening strikes a house. Everything gets burned out unless it is being protected by a surge protector. This is similar to what happens in the brain during a seizure. There are sudden overloads of neurons that start taking paths that they shouldn't be taking and this can cause a seizure. Many times there is scar tissue that enables these neurons to take these improper paths and the sudden jolt from these neurons causes muscles to do things they wouldn't normally do.
Any questions you may have will be answered to best of their ability by the members of CWE! :clap:

acshuman
 
Patricia, welcome. I do hope you find great information and support here... many very nice and good people to connect with. Sorry your surgery didn't go top of the line for you... I share your feelings there, I have had 3 surgeries, fixing some of my problems while key problems chose not to run away, them stinkers.

I do hope things go great here for you.
 
Thank you for the warm welcome to this community. I look forward to learn with and from you all.Peace.
 
Thanks so much for the warm welcome to the community. I look forward to learning from and with you all. Peace.
 
Hi Patricia,
Welcome to CWE! I've had 2 brain surgeries for my seizures to help reduce my seizures. When you had the stare for a short time that may have been an absence seizure and when you had the accident in bed it may have been a myoclonic seizure which is a seizure that happens when a person goes to bed or after they have gotten up for a little while. I had the same problem as you did in bed but them my Dr. put me on the drug vimpat and that stopped all of the myoclonic seizures. I have found taking vitamin B12 once a day has been a big help to me. If you Dr. never told you don't eat grapefruit or drink grapefruit juice while taking carbamenzine because the grapefruit enzymes can mess the drug up. Wishing you only the best of luck and May God Bless You!

Sue
 
Thank you for the welcome. I agree that laughter is essential to deal with life. That and good friends/family.
 
Thanks

Thanks for the welcome and the reminder that laughter is the most essential, if not best, medicine.
 
Sue,

My doctors and pharmacists reminded me early on the med journey that grape fruit would affect the medication so I faithfully avoid it. I LOVE grapefruit and will occasionally sneak a bite or sip from my husband's plate.

I have a few concerns with the seizures since I am already on anti-seizure meds. Obviously they are not strong enough of the right kind to deal with the TN and E. One concern is that the neuro will say nothing is wrong and there is nothing they can do. The other is that something is very wrong and there are more meds in my future.

Thank you for the welcome and sharing. It is very much appreciated.

Peace, Patty
 
What You Can Expect In the Future!

Patty,
I have lived w/E for over 50 years and have seen many(not all) of the problems a person w/E can have.
One of these problems is medical professionals who claim to be an 'expert', but couldn't answer a simple question about E. I have taught many of my doctors more than their medical schools ever did. If a doctor tells you there is 'nothing they can do for you' you immediately get a second opinion. More than likely that doctor didn't know what to do and their way of covering that up is to tell you that 'nothing can be done' which is NOT the truth in a vast majority of cases. You simply have to find the best doctor for YOU and YOUR case! This can take time, but it is also something that you will learn about having E. That is, that you normally don't 'hit a home-run on the first swing'. You need to make the effort to 'play the entire game' and find who or what you need. Asking questions of other people is the best way to do this!
Just remember, CWE and it's members will always be here to answer any questions you may have! :clap:
 
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Hi welcome.i live in uk and much samething here as acehuman says.
you had awful trot.i know people on here do have TN and e hopefully you get plenty help and personal stories bc that helps not being on your own.i was on tegratol once I could not get on with it.
 
Hello seagull, thanks for the welcome. I live in Manitoba, Canada and as I said I am new to E, this community and city life. I am finding out that I am not as community savvy as I had hoped; could you tell me how I can post things. Like finding others near me or others with the same condition I have? I need very specific directions as I am a bit dull from conditions and meds. Thanks so much. I wish you a pleasant day, or should I say evening.
 
H o w!

Patricia,

You need to click on 'Forum Help' in the bar just below the highlighted' Reply to Thread' above. You will find answers to many questions you may have about doing things on the CWE site.
I am not totally sure about the restrictions on posting that are in place for new members.
Check out each of the different areas of CWE and how to use them by using the different parts of this bar.

acshuman


:hugs:
 
Hi Patricia, welcome to CWE! Feel free to ask for help navigating the forum in this thread and/or use the helpful link acshuman provided. You can also send a private message to me or any of the other moderators.

Good luck with the diagnosis and getting better seizure control. There are many anti-seizure meds out there so perhaps another one will work better for you. Nortriptyline (and other tricyclics) can lower seizure threshold (i.e. make you more susceptible to seizures) so you may want to review the med with your neuro. There have also been also a few documented cases of baclofen-induced epilepsy -- it's rare, so probably not a factor in your case.

Best,
Nakamova
 
Such great information on meds, thank you so very much. I am well versed in support groups and meds and procedures on TN but with E I am a newbie. I really appreciate the support.
 
Ace an explained it go by that.I worse person to ask on how t do things on forums I can barely turn computer onI not forum savvy myself this mainly only one i use apart from my local town one.for me it hit and miss.
I make terrible assumption people know what I thinking bad grammar a lot of lazy ways can piss people but after a time people get use to style or you hope they do.I partial sighted so make some awfu mistakes and only when read it back and think god did I write that.It don't help when you type it perfectly but iPad changes everything between speech and post.So don't worry pressing wrong box is not going blow House up I mean I don't even know what memes mean
 
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