Hard to Hear

[Crystal11]

This is going to be a little long everyone- just a lot to talk about.

I went to my neurologist today and we discussed my current medications/situations. Keppra XR 3000mg, Tegretol XR 400mg and Lamictal 200mg. Now I'm getting off of Tegretol XR at my request but increasing Lamictal to 400mg and Keppra XR staying the same.
I thought this visit would be the usual:
"How many seizures have you had since the last visit?" "How are things going?" "Anything concerns you want to talk about?"
After discussing drop attacks, migraines, complex partial seizures and E.R. trips we started talking about something I never would have guessed of talking about.
He asked me "Have you been having more cluster seizures around that time of the month?" I mentioned that I had three complex partial seizures this month and I was totally miserable (sure you all wanted to know) but for me, it was interesting to realize that there is probably a connection.

We talked probably for 15 minutes before he said: "Have you heard of medication resistant Epilepsy?" I said yes and never would have imagined him saying I have this. Keppra XR has helped my "little CPs" quite a bit- the ones that are 45sec only. The Tegretol XR stopped working my last year or college- but probably was still doing something, even it is was little.
Anyway- he then asked "Have you heard of video EEG?" I said yes, and I knew that if they are having troubles treating someone with multiple meds, that a video EEG might help in finding more information out about what type, how many, and where in the brain the seizures are coming from and scaring.
Then he asked "Are you willing to consider surgery for your seizures?" I said, uh.. no way. I'm sorry but I've had 9 surgeries in my life time and that's many times of being in the hospital, around scary situations, and dealing with the healing process. (Since the age of 4hr old, 2, 5, 9, and 15 years old.
I have thought of surgery for my epilepsy- since we also found out that mine are coming from the left side of my brain. Just never would have thought my neuro and I would talk about it and consider it.

Anyway- I am sort of in shock about the neuro considering surgery for me- when I never thought I was "medication resistant". I just thought that it would take a little longer to treat me or find the right set of meds.
My other neurologist said "Since your seizures were not properly treated since age 6, it will be difficult to treat, or gain good control for a while."
She didn't mean that I would be having seizures all day long, but it won't be as good of control as another person that just started having seizures and started treatment right away.

Anyway- I just never thought of surgery ever coming up in a neuro visit. It's like "You have Epilepsy, now you have medically refractive, medication resistant Epilepsy." In my opinion, I have just gotten from okay to worse.

My friend/roommate who also has Epilepsy- forced me to read out of my seizure journal to make sure I would tell, accurately, how many seizures/drop attacks I've had. Sometimes I forget and it seems like I'm going better than I really am.

What a day- I wanted to cry. I wanted to blame myself for messing up my medications every time I felt "I'm not having as many seizures for a while, lets reduce it some." I wanted to just say: "Screw it all! I give up!" But I sat calmly awaiting consultation and new RXs. I said to myself that its okay and just take in what you've heard and relax.


Everyone, any comments would be awesome-
Everyone, take care and be safe.

Crystal and her guide, Umbro.

 

[Endless]

Dear Crystal,

Big HUG............ Know there a lot of people that love you and care about you in here. It's all going to be okay.

I can only imagine how hard it was to hear that news. Rather life-altering.

I'm pretty new to my diagnosis of Epilepsy, so I may not have a lot of knowledge to impart about this one. I don't know what's considered a good level of seizure control. I imagine it's different for everybody, and it has a lot to do with what each person is able to tolerate in their lives and how many and what kind of seizures are considered safe and tolerable for them. But one thing I do know is that you don't have to make any decisions today. Or tomorrow. Or next week or next month or any time soon. Take your time, gather information, ask your head, your heart, your friends, family, your dog, then your instincts. Get a second opinion from another doctor if you need it. Sleep on it, sleep on it again, take a break and don't think about it if you can, then decide. And everybody is here to support you, including me.

Here's another big hug. <<<<<hug>>>>>>>>
And one for Umbro <<<<<<<hug>>>>>>>>>

 

[Nakamova]

Hey Crystal, you can't blame yourself for backing off on your meds when at those times when you're feeling good. I've done it. We all do it, or dream of it. We all want to feel like our unmedicated or less-medicated selves. I agree with Endlesssea -- surgery is a big step, with many risks, and no guarantees. It's important to get more than one opinion before deciding that meds have nothing left to offer you (especially given that it's likely that you would still be on meds post-surgery).

Is there any chance you could try something non-invasive like neurofeedback? There's been a lot of promising research on that front (based on the recent postings here at CWE).

I hope you feel better with the newest med combo, and that you an Umbro get a good night's sleep.

 

[Crystal11]

Thanks to both of you for writting me back.
I have been living with Epilepsy since age 6- but started actual treatment at age 13.
We didn't really know what was going on from age 6-13 and sort of am happy that I wasn't on meds my whole life- it seems that it would effect me more than it does now.

Anyway- I see two new neurologist every time I go. Since its the specialty clinic at a University Hospital. They speak to the head neurologist before coming back to discuss everything with me.
I've seen 7 neurologist since I started going. Each one performed the psycho-neuro exam with a basic physical and asking questions. Asks me to describe my seizures as well as ask my roommate Rachel about what goes on during a seizure. I can't remember what goes on- just the aura and after effects of my seizures.
I do know that my eyes go to the right and get "stuck" although I have Nystagmus (involutary movements of the eyes)- it doesn't even stop during a seizure just slows down. My head and part of my body goes to the right. Those don't happen as often as my longer CPs or shorter CPs..

I am hoping that the increasing of Lamictal and decrease of Tegretol will help me a lot. I pray about it every night.
I have been having mental probs lately- as in thinking of the process to do something or to think things through- memory troubles too.
I almost forgot my glasses ($600 specialty glasses) because I could not see them- but I usually remember things like that.
Also I had a prescription bottle on my lap that I showed the neuro- meds the E.R. gave me for severe Migraine.
I then forgot it was there- and could not see it, stood up and dropped it on the floor. I was embarassed about having these troubles while visiting with the doctors.
Its prob. not a big deal but for me its odd. My roommate come home and I forgot and had to ask her how to turn off the two-way radio that we use as she walks home from work.
Just in case she has a seizure while walking. Which has happened before- it scares me.

Anyway- I will stop writting now and I really really appreciate the hugs. I started crying a little bit from reading everyones' kind words.
I know that things could be worse but every once in a while- things get to me.
I ask.. "Why?" "Why can't it just go away?"

Hugs you two-
With love, Crystal

 

[Rae1889]

I ask.. "Why?" "Why can't it just go away?"

I have been asking myself the same question lately. But I have yet to come up with a reason that satisfies me.

But tha tmust be terrible news to hear. I couldnt imagine being told that. But I do know that I would not handle it as well as you are. You are one tough cookie. and the glass of milk is too small to shove you in and break you down. So chin up buttercup. and know that if you need an ear, a shoulder or smile, I am only a PM away.

I know I have needed it time and time again.

 

[Crystal11]

Even though it was rough hearing this from my neuro- I have been through so much medical stuff since being born three months early, that it takes a lot to scare me. But this time was a little different knowing that they were considering surgery for me- to fix my brain somehow to stop my seizures from being so frequent or poorly controlled on meds.
I am hoping for the best and staying possitive and giving my meds many tries to help me.
Out of blindness, hearing loss/deafness and Epilepsy- Epilepsy is the most difficult to manage. You never know if you will have a seizure today or tomorrow or a minute from now. I know I'm going to be blind and deaf for my whole life. Thank God to those people who have created assistive devices that allow me to live independently but those conditions will always be there..

Thank you guys, a lot.
Crystal

 

[Rae1889]

Yes,
and you are really strong. and that was probably a big blow to your ego too. It would be to mine at least.

Have you ever considered surgery? why or why not? is there something that scares you? What about asking about VNS istead of removing the parts>?

 

[Crystal11]

Rae- what scares me is the fact that it comes down to the option of brain surgery. I know that people out there have had multiple surgeries for their Epilepsy- but to me, my seizures have been around my whole life. I am used to having smaller CPs and 1-2 longer ones in a month.
I don't consider mine to be so severe as to require surgery. I am willing to give meds a try even if it means dealing with small CPs that are only 45sec long.
I am interested in the VNS but they didn't mention that to me as an option. They are focusing on the fact that medication isn't working how they would like, or me either.

I go to my neurologist in three months and I will be discussing more about everything then. For right now, I just am thinking about a lot and thank you guys for chatting with me about it.

Take care everyone,
Crystal

 

[Emilyjh5]

Hello Crystal,I am new to this website. I understand your shock about being a candidate for surgery. I had a first surgery in 2000, when I had the electrodes placed on my brain, but I did not have any resection. Then when I saw several different neurologists and in 2004, another neurologist told me brain surgery was an option again. I had the surgery again, and it helped my seizures some. I also understand what you mean by the seizures related to your hormones. Mine were really in sync with my cycle. I never did try the VNS because I was never given it as an option between my surgeries. But I was on a special diet for my seizures that helped to some degree. I just wanted to write and say I hope that you are able to find a doctor that can let you know what the possible options are for your seizures.

 

[Crystal11]

Emily- I have a current doctor and usually I see two at one time. They then consult the main neuro (my doctor), of the hospital.

We discuss many things during the visit as well as any of my concerns. I have a 20min appointment time but I could stay longer if needed. I did on this visit since we were talking about possible surgery and testing.
It just hard to take in- such a major thing to think about- brain surgery to help my Epilepsy. I would love to not have Epilepsy anymore- but I've had it since I was 6. I find it hard to deal with not having seizures for one month straight. I feel on edge that one is just around the corner- or one will happen anywhere and cause a scene (nothing major but people know something is up), and I want it to go away but it would hard to adjust. If that makes any sense.
I am blind and I don't know what I would do if I could see like everyone else. I don't know any different and it would be like learning how to do everything as a sighted person, in a new way.
I have some usuable vision but it doesn't always work (CVI) and I'm totally blind at night even with street lighting.
I love my guide dog- he adjusts to my vision all the time. He is my guardian as I say. I was petting him big time so that I would not cry or get upset by what was going on..

-Crystal

 

[Emilyjh5]

Crystal,

I just reread what I wrote and I hope you did not think I was suggesting you have surgery, I just meant how I had experience with surgery and how it was for me. I know my parents have always been with me for the seizures and surgeries, but they let me know it was my decision to make.

I read where you said you only remember the aura and after the seizure. That is how I am now after my second brain surgery. I am alert through most of the seizures according to other people. I had one a few days ago at work and I guess after I felt the aura, I told the people that were around me that I was feeling that I was going to have one and went and sat in a seat. Then they said I spoke to them and was completely alert thru the seizure. After it was over then went with me back to the office and I must have made a note on a piece of paper for where I was when it occurred, and how I did with it. I read where I write on paper, but it rare for me to actually remember what I wrote about without reading it. I just feel a lapse in time.

It is great how the doctors can consult with each other! I have a neurologist and nurse practitioner closer to home that I now see. They also allow me to stay as long as I need to for an office visit and she tells me to call her every two weeks and let her know how things are going and what I should do if I am having worse problems with my seizures. My other neurologist is in Pennsylvania and she still stays in contact and will answer any e-maills or calls. They are great, especially compared to some of the previous neurologists I have had.

It is great you have a service dog to assist you. I received a service dog a couple of years ago for my seizures. It was surprising all of the different commands she was trained to do. I will admit, I never would have believed all of the different things the service dogs can actually do. I take her with me about every place I go. She has alerted the people at work that I was having one and even taken them to where I was while having it. I see the picture of you and your dog on here, is he golden retriever? Mine is half black lab half golden retriever.

I think you are a great person and you are able to keep on going no matter what the challenge may be!
Emily

 

[dfwtexas]

Crystal,
Just a note to send you a hug. You are my biggest hero on this forum! You have faced so much but you always come thru being so strong. I know this is all upsetting to you....but you will get thru it, no matter what. You are loved by all here and we are here to support you! Keep us posted.
jenn

 

[Crystal11]

Thank you Emily and JGB-
I appreciate it. I think it is wonderful to be able to come on CWE and get advice and personal stories from those who know, who have experienced things I have not.

My guide dog was trained for seizure work while I was in training with him for one month at Guiding Eyes for the Blind in NY.
He is a pure yellow lab, male named Umbro or "Umi". He has lots of commands as well and as a guide dog, he has the most stressful job of all service dogs. Guiding me is something he loves to do and when he notices my balance being off, he will stand infront of me. My sis and friend notice his behavior and know that I'm starting to have a seizure. I sit in the grass if I have to- I worry about walking around and Sis and my friend will hold my arm so I don't go anywhere if it comes to it.
Sometimes I keep walking at a normal pace and no one really knows unless they talk with me with no responce.
The other day, we were at a cross walk about to cross- Umbro did not go although it was time and I commanded "Umbro, forward. Straight."
My little boy is my guardian and ever since getting him, I have felt more confident in my traveling and being independent.

I am thinking about what we talked about in the office and their suggestions. I think I would like to have the video EEG but I don't think he will think it necessary if I am not going for surgery.
if later on, I think I would like more evals or testing for possible surgery- I will let him know. I feel confident with all of the neuros I see. Although I would like to see the same one- I will probably end up seeing them all again- since they all work in the same office.

Anyway- thanks for you guys' hugs and thoughtful comments.
I appreciate it.
Umbro yips a hello since he isn't able to bark or allowed at that hehe.

Take care,
Crystal and her guide Umbro

 

[Chatter-box]

What a story, Crystal! What a time you've had. That certainly has presented you with a big decision to make and the chance to gather all the information you need to make it. Crystal, I recently had a hard decision to make (well, not as big as yours) but one that had strong implications for me and my family. I obsessed about it for months and it nearly drove me crazy. But I finally decided to take some positive action and take back the power to make it without letting the stress of the situation hurt me so much. I decided to make a list of the reasons to do it and the reasons to keep things like they are. I put both positive reasons and negative ones for each choice like that not doing it would make me feel in control and an equal in the medical decisions not just the passive patient and then that doing it would cut off driving and devistate my family and my sense of being able to provide for them. I made that list as complete as I could and put in things like how doing it would make me feel like someone without the guts to be honest and that not doing it gave me the chance to feel like I was giving up my pride to protect my family. Like that. Maybe you can make a list like that. Collect your information about both choices and you may be able to move beyond the shock and see what's important to you that each choice can bring and then choose to have the surgery or not have it and know that your decision is the one you made for yourself without the stress and shock you're faced with now. Crystal, it worked for me and I hope a list or something like it will help you, too. You've got a lot of friends here. Count me on that list of friends.

 

[Crystal11]

Chatter-Box, I am sort of confused as to what your troubles that you had to make a decision on were. I hope I didn't misread anything hehe.
Anyway- it is a great idea to write a list down. For me I just feel, simply, that my Epilepsy isn't severe enough to require surgery. I mentioned before that i've had Complex partial seizures since age 6, even thought I feel they were Absences.. but neuro says otherwise.
My mother actually thought at age 13 that my seizures weren't severe enough to require meds.. boy she was wrong and because I didn't know what Tegretol was used for (mainly CPs) I could not tell her otherwise, any info or anything.
So I got off of it and now that I was in college when my CPs acted up worse- I took things into my hands and took care of myself with the help of my neuro.
She said that most college students notice more seizure troubles mainly due to poor diet (cafe food isn't always good every day hehe), poor sleeping (class schedule was diff. each day) and stress level is very high- especially in the B.A. program.
After getting tests EEG/AEEG/Evals, she re-diagnosed me with CPs, which isn't new to me. But she treated me well and I miss her- now that I've moved to Austin.
My new neuro just told me to consider surgery and its all too much for me right now. But people on CWE sure understand and have helped me alot.
I am a member of an Epilepsy Support Group that we conduct each month- I will mention what's been going on there too- just to talk with others in the same situation possibly as me.

The list topic I may bring up in that meeting since most people in there are new to Epilepsy.
I feel strongly about keeping a seizure diary as well as a migraine log too. My neuro told me that it was good of me to do this- since I tend to "make everything sound better than it is."
My friend had to admit what was going on for me- she called me a liar in the office LOL. I read out of my book and gave correct info and its has helped me realize that things aren't as good as they could be..
But no seizures since March 13th! Yay! I'm hoping the increase of Lamictal and the decrease of Tegretol will do my some good..
Just counting down 11 more days until I can get off of it! YAY!
I've complained about Tegretol for the last 4 years- which is as long as I am on it LOL. I was on it while I was 13-15 then stopped.

Anyway- now that I've written a long responce, sorry-
I will do the list and see what I come up with. I think I will look or research more about Epilepsy surgery..

Thanks,
Crystal