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TeeJay

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Hello to all. I'm a 64 yr old female, in awesome health - until May 1 of 2013. After going thru a battery of heart tests in the hospital, someone suggested an EEG. Low and behold, I was having seizures. Imagine my shock. I'm now on my 3rd med, trying to find something that works. Most recent is Vimpat but after two months, light seizures are back. I just want to cry all the time. I don't know if I haven't given it enough time or if it just isn't working. My seizures may be different than most. I am aware when I have them, feel them coming on, very light headed, sick at stomach, very rapid heart beat and spiked blood pressure. A pre-cursor to them are buring sensations on my scalp. Started with Depakote and lost about half my hair. Then it was lamectal which gave me severe mouth sores and also light seizures. Now the Vimpat is letting me down. Is there any hope?

Not sure if I am doing this right but I am.....TeeJay
 
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Hi and welcome TeeJay,

Sorry you had to come into our world at your age. Yes, it is shocking news, isn't it? I've been dealing with E for over 30 years now and have tried nearly every med that was out there. So it does take time to find something that will work for you. For some, it is basically trial and error before we find one that works.

By light seizures, do you mean simple partial or complex partial? It does sound like simple partial, though.
Check this out to explain the difference:

http://www.epilepsy.com/epilepsy/seizure_simplepartial

http://www.epilepsy.com/epilepsy/seizure_complexpartial
 
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I'm sorry your having sz's, and it may take more than 1 med to control your seizures.
 
Welcome to the group TeeJay, but of course, sorry for the reason that has brought you here. It's a challenge, and it requires a lot of patience, unfortunately, to find the right 'cocktail' of meds. Personally, Vimpat wasn't a good one for me, but others have done well on it.

There is hope... stay the fight, friend.
 
Welcome to CWE tee jay, you've come to great place to meet people who understand what you're going through. Epilepsy can be so scary, hopefully you'll feel better soon. :)
 
you arent alone, but yeah, some of us wake up to that fist full of meds in the morning
 
thank you!

So great to hear from all who welcomed me into the fold! I'm already starting to see why this forum is going to be helpful. Quick question: does anyone have problems with their scalp feeling like its burning, or painful to touch? This is the latest thing for me and I wonder if its related to the seizures? Thanks again....
 
I'm probably not a good one to ask, since I've had 2 brain surgeries :roflmao: Last one was 9 months ago, and I do still have some random slight pain, itching, but otherwise, no, I never had any pain or burning. :)
 
hi teejay!!

warm welcome like everyone says... best place to join. cwe doesn't have almost 10,000 members for no reason, let me tell ya ;) the day i joined changed my life, as many will say. aka 'love you mel.' (2ndchances)

well my dear i'm with CQ and 2ndchances on this, as we've all had surgery, my head still feels frozen or itchy, but due to surg, as i never had that prior. but, there a few ways i relate to you completely!

-aware of the seizures, light headed, sick stomach? sounds very much like a type of simple partial seizure, very common, have had a few thousand of them. HATE them. one of my main reasons for deciding on surgery was to get rid of them, not the grand mals. close to 2,000 partials compared to 13 grand mals uhhh yeah, simple answer pardon the pun.

-the lamictal (me on generic, lamotrigine) didn't help a ton either, and THIS is the one that i lost hair. Woah!!! i have pounds among pounds of long hair down to my butt and all of a sudden i'm filling sinkfuls. uhhhhh, w/@#$&@!! ?? broke my heart.

-vimpat did cut my seizures down somewhat but the side effects were by far not worth it.

it's a real treat sweetie. real trial and error. BUT.... you're NEVER alone. ever.
a ton of us here night and day to both assist you and be there with you through the hardest of times. pls feel free to pm or ask away, we'll help, you can count on that.

:hugs: and welcome to the best epilepsy site EVER. ;) ;) ;)
 
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Hi Teejay,
Welcome to CWE, as everyone else has said this is a great place & I think it's the best E forum :woot:

qtowngirl said:
well my dear i'm with CQ and 2ndchances on this, as we've all had surgery, my head still feels frozen or itchy, but due to surg, as i never had that prior.
Click to expand...
Whoops I accidentally deleted my post but looks like Qtown saw it before I deleted it lol :paperbag:.

As Qtown & 2ndchances said the 3 of us have all had brain surgery as well as some other members here (some of us have had success with our surgeries & some haven't). I had my surgery nearly 3 years ago & apart from the odd occasion where it gets itchy where the scarring is & it feels a little numb on that side of my scalp I haven't had any pain or other issues.
 
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appreciate everyone's words of encouragement. I feel like a load has been lifted, as there is no one else I can really talk to. My friends are sympathetic but of course cannot relate. I imagine I will be on this site quite a lot. I'm really a computer dork so please don't take offense if something I post looks....weird. Kudos to those who have faced surgery (omg Brain Surgery!!!) with humor and dignity. Cannot imagine! Thanks so much!! My whining may even disappear with time. I thought once I got on meds my world would again turn rosy with sunshine and flowers everywhere. My bad.
 
Hey Teejay, no worries about "whining". Epilepsy is no fun, and it can help vent from time to time, especially here at CWE where members "get it". I hope you find the medication or treatment that works for you. It might be useful to keep a seizure/symptom diary -- it can potentially help you identify and avoid things that could be playing a role in triggering your seizures (like fatigue and stress). There's some great info about ways to be proactive here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova
 
Nakamova

Told you all I was a computer dork, this is my 3rd time to reply to your message, lol. They keep disappearing down some black hole. I went to the dr yesterday, he upped my meds a bit and scheduled another EEG (my second). I believe he thinks I'm crazy which may not be far from the truth. I live in a rural area, so there are not too many neurologists hanging out here. Guess I need to get to a city. Thanks for the link you sent, I will check it out now....

PS
I have tried to reply to all those who wrote to me. If you didn't get a reply, refer to above first line. Thanks to everyone! I'll figure out this site eventually....
 
Welcome TeeJay.

Doctors are weird. Some don't know how to dumb things down for us and they decide not talking about it is the best way to go. Others are so good at dumbing things down they are amazed at those who do their research.

I have been on different meds and the best working one FOR ME is Vimpat. We are all different. After a few months on Vimpat, some simple partial (or auras) started happening more often and a simple increase in dosage fixed ti for me. Sometimes this works and other times it may not. Many of us are on a mixture of medications.

It can take time to figure out how to control your seizures so you are certainly not alone. It is a stressful and tiring experience, but you'll get there.

There is always hope. Just read the signature down there. ;)
 
not just you about the scalp, i have marks from falls that falls that wont heal, and dry blood on my scalp i need to wash from a few days ago that is unpleasant.
 
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