Newly Diagnosed, Newly Coping

[BrandiBrat]

Hi, my name's Brandi and I had head trauma last summer which resulted in post traumatic epilepsy. I have since learned how very delicate life is and how much I took my health for granted in the past.

I have not responded to medication yet, but I know which ones I did NOT like taking. I lost most of my hair and couldn't hardly lift my head off the pillow when I was on the Dilantin and Keppra. I am now on Topamax and I am still having from 10-15 Complex Partials a day but the generalized seizures are controlled on the Topamax.

I am still navigating through all of the information regarding seizures and epilepsy and I've learned a ton so far. Some days I feel ok, and some days I feel like I'm losing my mind. Ok, most days I feel like I'm losing my mind... I'm learning my triggers and how to control them (some are not controllable as I'm a single mom and the only financial provider) but I'm trying to prioritize my health.

How long before the seizures are under control by the medications? I'm on my 3rd one now and still nothing. My daughter depends on me to take care of her (even though she is a teen) and I also need my license back. Is it typical to change meds many times before finding the right one?

Thanks for the place to come to visit and read! I have no one to talk to about how I'm feeling about my experiences, so I appreciate it.

 

[arnie]

Welcome! this is the place to come for support and understanding and, I hope, guidance and insight. It can take a while to find the right medication or combination of meds to get control. I had my first witnessed sz. about 30 years ago, and Dilantin did a really good job of stopping the big seizures, but only a so-so job of controlling the partials. I was on that med for about 15 years, then switched to Lamictal, and a couple of months ago added Trileptal. I have never had real control of the partial seizures (both complex and simple) and I have probably 250-350 per year, but they haven't really affected my life or career or family or activities, so I live with them. Keppra seems to be a big drug of choice now, but I was on it for a couple of weeks and could not stand the way I felt, mainly mentally, so I stopped that. Zonegran was as bad or worse so I went back to the Lamictal. Adding Trileptal seems to be lessening the partials, which is a good thing.
In any case, carry on! Spend time here, ask questions, and be reassured that most people with epilepsy can lead (almost) completely normal lives.
Best of luck with it all. Learn as much as you can about the meds and don't be afraid to tell your doctor if you are not happy with something or want to change something.

 

[BrandiBrat]

Thank you, Arnie! I am still trying to get used to all of the changes in my head. Between the complex partials and the smell of poo all the time and the sounds that aren't there....it's all very confusing. All of my senses are messed up.

I see my neurologist on the 30th and I'm glad. Maybe he can just add something to the Topamax. It worked for a few weeks, but then the seizures came back again.

Thanks again!

 

[arnie]

It is confusing. There are some normal sensations (especially smell, in my case) that are amplified, and some sensations that aren't there at all except in your mind. There can also be memory flashbacks and confusion as to what day it is, etc. All sorts of fun stuff, but you will get through it, never fear!

 

[CQ:)]

Hi Brandibrat,

Welcome to CWE. I believe everyone who has epilepsy is different in the way that our seizures may be similar but are different in some way & we all have different side effects to medications. What medications works for some people may not work for others, some people are able to find the right medication & doseage to help control their seizures but other people are unable to get their seizures fully under control with meds so have to try other methods to help control seizures eg - surgery, neurofeedback, VNS (Vagal Nerve Stimulation) implant).

I have temporal lobe epilepsy. I was 1st diagnosed with epilepsy as a baby & had tonic clonics from 9 months old until I was 3. I went 21 years seizure free until 2002 when I was 24 I started taking seizures again. I only had a couple of tonic clonics & most of my seizures were auras (simple partial seizures) & complex partial seizures.
When I had MRIs it showed up that I had scarring on my left front temporal lobe which the specialists believe is most likely from the tonic clonics i had as a baby.
Between 2002 - 2009 I tried 5 different medications Tegretol, Lamictal, Topamax, Keppra & Neurontin & since 2004 I have been on at less 2 anti epilepsy meds at a time but none of the meds completely controlled my partial seizures. In the end my neurologist suggested that I think about having brain surgery & referred me to an epitiologist. After I met the epitiologist I went through a series of tests to see if I was able to have the surgery & at the end of 2010 I was accepted to have surgery. I had my brain surgery on March 10th 2011 & am now almost 2 years seizure free.
I am still on 2 medications Tegretol & Keppra but am currently being slowly weaned of the Tegretol.

I hope you are able to find the right medication that helps control your seizures.

 

[kirsty1327]

Hi,I was on tegretol but the side effects were awful,went onto keppra which stopped my seizures for months but made me a real cow.my neuro then put me on topomax and once I settled into it I felt really good but then I was bombarded with simple partials every day and I lost a ridiculous amount of weight so I'm now slowly coming off topomax and am on epilim.I was only diagnosed 3 years ago and I'm my 4th drug as I seem to have my complex partials under control but not simples!!!!! It really is trial and error to find what's best I think.good luck!!!!

 

[jyearta]

Hi I want to welcome you.

You have already gotten some great advise.

I have seen around 7 to 8 Neur. and have been on 11 meds.
It has always taken a combo to have any affect on my seizures.
I'm on Dilantin and Clonazepam.

I hope you will find this forum to be of help like it has been for me. I wish I had found it sooner.

 

[Nakamova]

Hi Brandi, welcome to CWE!

How long before the seizures are under control by the medications? I'm on my 3rd one now and still nothing. My daughter depends on me to take care of her (even though she is a teen) and I also need my license back. Is it typical to change meds many times before finding the right one?

Unfortunately, there's no "typical" route to treatment for folks with epilepsy, since it comes in so many shapes and forms, with multiple causes and outcomes. There are more meds out there to try (see http://www.webmd.com/drugs/conditio...diseasename=Complex-Partial+Epilepsy&source=0), and you should talk to your neurologist about the possibility of switching meds or adding another one to the mix. CQ mentioned some other treatment approaches above, and it can help to be proactive about avoiding triggers, as you know. Some people have found that dietary approaches can help as well. More info about triggers and alternative treatments can be found here http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ and here http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova

 

[BrandiBrat]

Wow, thank you all for the feedback and it is great to see that I am not alone. Not great, but you know what I mean haha

I'm trying so hard to get used to all the crazy changes. Prior to the accident, nothing went "unexplained" with my body. I was what you would call a well-oiled machine lol. I took care of my body and ran 30+ marathons, trained horses, ate well, and was very active. Now, I smell poop and body odor that's not there, hear noises that aren't there, 10-15 cp's a day, and my emotions are simply out of control. I used to be so vibrant and happy with life, outgoing and cheerful. Since the diagnosis, I've withdrawn and I'm still trying to define what this means for me.

My family doesn't know what to do with this. They don't talk to me about it and they won't allow me to discuss it with them. I think they're scared and confused as well. But unlike me, they want to hide and pretend it doesn't exist...I can't do that. I have no one (besides you now! ) to kick ideas around with and internalizing this is killing me. I cry nearly everyday, as I want my life back. I want to experience joy again. I suppose I have to go through the process and move on to accept it, I just don't know how yet.

What I really want to do is go for a long horseback ride because that's what I always did before, when I was upset. But, last June I got on a gelding that my friend had just gotten into her ranch and he threw me head first into a steel wall at a full running buck....without a helmet. I had no idea at the time that it would change my life forever. My horses are good, though But aren't getting ridden because I'm afraid to get back on.

Well, thank you for listening to me go on and again, for giving me a place to whine...I promise I won't always be a crybaby. :/

 

[arnie]

You will get your life back, and as you get more comfortable with it so will your family and friends. A lot of people are really scared and uncomfortable about epilepsy. For what it's worth, I've always been able to do pretty much whatever I want, in spite of the partial szs. I have. I can legally drive, I ride bicycles and motorcycles, rock climb, work full time, play the piano, etc. Pretty much no limitations. There is almost always a subtle reminder of the epilepsy, but that's OK. You get used to it. In some ways it can make your life more interesting, though that probably sounds odd to you right now. . .
One day at a time!

 

[jyearta]

You WILL adjust and accept this NEW life. It will not be easy at times and other times a day will go by and you will not even thing of E.

 

[BrandiBrat]

Thank you, thank you, thank you! The more I read here, the better I feel already. I even laughed at something I read (gosh, has it really been THAT long since I've laughed?) about "You know you have Epilepsy when...." Because I've done some of those things! haha I think one should be added to the list! ..... If you forget how to spell the word "the". lol

One day at a time... yes. *deep breath*

 

[jenn2482]

hi

hi , I have had epilepsy since I was 11 , now 41 . It does for some people take a long time to find the right med. I have been on everyone possible . I now take 5 different meds for my seizures . I still have them . I have partial complex , but I am sure I have a lot of different ones but there is no name for them . I wish u luck .jenn

 

[BrandiBrat]

Hi Jenn, I have different kinds as well. I had a tonic clonic at the grocery store, which was my first one. That was frightening. I woke up and a lady was holding my head while someone turned me onto my side. I also used to have ones where my arm and torso would jerk but the Topamax made those go away. I now have strange ones where my face vibrates (it's the weirdest thing lol) The first time I vibrated I thought we were having an earthquake only I was the only one quaking. The strange thing about those is that my mind is only slightly altered. I also have seizures in my sleep. I wake up gasping for air and the next day I will have a really bad headache and my ears will ring loudly.

In the words of Jerry Garcia.... what a long, strange trip its been. ha

 

[qtowngirl]

Welcome Brandi!
Let me first say HOLY S--T for what happened to your head, I can't imagine how painful and scary that must have been. (((HUGS)))

As CQ says, how meds work/don't work is different for everyone. And always keep on top of your neuro if they're not working or making you feel funny, uncomfortable, etc.
I've been on four (currently a combo of carbamazepine, lamotrigine, and vimpat), over the last nine years, but nothing's working. The more stressful life would become the worse the grand mals got. Lots of testing.
One with E is considered 'intractable' or 'refractory' after trials of three meds don't work (means it's likely no meds will work), and in a lot of cases other options start to be explored. I'm with CQ - will be having surgery this summer.

And PLEASE don't worry about crying every day, very common when you're still getting used to it all, E is not a quick process. CWE is also a great place for that - come here and vent, cry, scream, laugh, share... anything you need. Great to have you

 

[BrandiBrat]

Omword, I thank you for that! And yeah, my head hurt for awhile after that one lol. After the horse threw me he trampled over me too, breaking several bones. And ranch owner was too afraid of a lawsuit to call 911 so she just stood there and refused to help while I lay unconscious. An hour later, I got myself up and drove myself to the hospital where I was admitted. Nice of her, huh? So, she got what she expected. lol

 

[jyearta]

Bless your heart.....you really went through it.

She didn't try to help you.... what is it with some people.

 

[BrandiBrat]

Didn't even offer me a hand. I have vague visions of her backing up, right before I lost consiousness. When I woke up I told her I couldn't breath and to call 911 and she refused. We were the only 2 people there so as soon as I could move I made my way to my truck and I got myself to the hospital. I had 2 broken ribs, a fractured hip, chipped vertebrae, and a brain bleed. 4 months later after all of the bones and bruises healed up and life seemed back to normal I started to have seizures. I didn't know what they were at first, I thought I was having a stroke or something. I would lose my vision and ability to speak for a few minutes so I went to the ER after about the 5th time it happened. I had a seizure on the EEG, which made it easy to pinpoint what was going on.

But yeah, she's not a nice person... she told me the horse was a real sweetheart...very well broke and had tons of natural horsemanship training. She later revealed that someone had given her the horse because he had a bucking problem. After my accident, she sold him to a family who later demanded a refund because he had injured several family members due to bucking them off. To some folks, lives are meaningless.

 

[jyearta]

I am glad you wasn't KILLED. I hope this lady does not have ANY animals.

 

[BrandiBrat]

She has about 30 horses, but I'm not her friend anymore. I learned my lesson!