Introductions : New here

[iloveshelties]

Hello all!
I am a 53 yr. old mom of 3. I have been recently diagnosed with Epilepsy as of June 2011 after having 3 Grand Mal seizures. I also have a history of other neurological problems called Chiari Malformation and had a surgical correction for that in 1999 and another problem called Pseudotumor Cerebri and had a shunt placed in my brain in the year 2000. That shunt became infected and caused me to get menningitis, and the docs believe that eventhough it's been 10 years since that infection, menningitis is a contributor to Epilepsy (eventhough my E.E.G. shows signs that I've been "wired" for seizures since birth, but never had them!). I also have a strong history of migraine headaches since I have been 9 yrs. old.

With this history, my Dr. thought Topamax would be the best medicine for me. I wish I felt the same way!...lol. I have been having a TOUGH time to say the least! From the very beginning, it's been making me SO horribly dizzy, sleepy, confused, and just feeling like I'm drunk! I started out at 25mg twice a day and titrated VERY slowly up to where I am now to 75 mg. twice a day. I need to get to 100mg twice a day and stay on that dose. Because of the shunt infection I had a long time ago, I never had the shunt put back in for my Pseudotumor Cerebri, so I live with horrible high spinal fluid pressure headachaches...which the Topamax SHOULD help, but doesn't touch. I tried it years ago and it never helped either...I went to a pain management clinic years ago and they put me on Oxycontin and I've been on that for pain
management for 11 years now, and my pain has been pretty well managed.

Unfortionately, now that I have started the Topamax, I feel like my pain management has been all messed up too. I feel like I am constantly walking around in a horrible fog, I lose words in the middle of talking, can' t think straight, and can't type without backspacing constantly! In short....I feel like I an utterly STUPID! I call the medicine DOPE-A-MAX...Does anyone else have this problem from this medicine? Or is this jsut because I'm combining it with the Oxycontin? I have been on Oxycontin for 11 yrs....it's not like I can just stop it just like THAT...I woudl have terrible, terrible withdrawl...it is a narcotic...you just can't stop a medicine abrubtly like that, and even to wean off of it after that long a time would stree my body out SO badly I can't even imagine what that would be like.

I'm a little down as to why now in this time in my life I had to get Epilepsy...I lost my license, I feel like I'm inconveincing everyone, my husband and teenage daughter are scared to death to leave me alone since they saw me have that seizure...my daughter calls/texts me every hour when she's not with me and it's been 8 weeks sins SHE witnessed that last seizure. I know it will get better as time passes on...I HOPE! But for now, it's tough. In Maryland, where I live, you have to be seizure free for 3 months before you can get your license back from the DMV. But honestly, with the Topamax...I don't feel I could safely drive anyway. Does anyone else on Topamax have this problem?

Does this get better? My neurologist tells me it WILL get better...it just take time...everyone is different. he assures me I'm just one of those that is takinga little longer and the fact that I'm on other meds, and have other neuro problems may be slowing it down too, but he assures me I WILL get used to the medicine EVENTUALLY!! It's been 7 weeks now. Eventually seems a LONG way off.

Well, I look forward to getting support from everyone here, I 'm glad to be at a place where where I can at least get some answers and be among people who have been through what I am going through.

 

[BigWill]

Welcome to the board! Sounds like you have had a tough ride! Epilepsy will throw one hell of a loop in your life. Losing your license definitely sucks too. Im sure your family will accept it over time. It took my family a good 6 months or so to get used to me having E and now they have accepted it (I was diagnosed in August of last year). They still worry about me and check up on me, but not every hour or two like they used to.

I started out on Keppra and it worked for a while but the seizures came back, so my doctor put me on the dopamax in December. I had the same problems you are having with it. I always felt confused/dizzy and It gave me terrible memory problems. It also gave me a rash on my arm after about four months on it, so I switched to Lamictal about 3 months ago and also added Klonopin after I had another seizure in June. Im still on the Keppra as well. I hope everything works out for you and If you cant deal with the side effects of the dopamax, tell your doctor you want to switch! There are lots of medications out there and everyones body reacts differently to them. Some people get no side effects, others get them all! Best of luck!

 

[epileric]

Welcome iloveshelties

I"m about your age but have had seizures all my life. It is hard having seizures but a lot of what you described is what I & a lot of other people here have/are going through. You're definitely in good company at this site.

I've found all the AED's I've tried have had some side-effects but might vary to what degree. The one thing I've found is that I can be very emotional. I've always been like that but only realized that it might be my medications when I was around my mid-twenties.

Do you keep track of when you have your seizures? I've started marking when I sleep, when I take my meds, when/what I eat etc. I'm hoping to find a pattern and see if I can find if any food, stress or behaviour is triggering my seizures but no luck yet.

For now make yourself at home and check out the site. I"m sure more people will drop by to say "hi" & "welcome".

 

[iloveshelties]

Thank you so much, Big Will & Epileric.
I can already tell I feel you two have made me feel warm and welcomed. I DO know that my seizures are most definetly brought on by STRESS! I had some MAJOR family problems ( which I will NOT go into right now) that happened right before that first AND second seizure. My Dr. says he believes that is my major trigger. My teenage kids know this and are trying not to upset me. The 2 kids that do not live at home are the ones that caus eme the most stress so now that they have moved out, it's probably best for me all around. My 19 yr. old daughter that lives with me is an absolute angel and is the love of my life and would never do anything to stress me out.

BigWill,I did ask my Dr. if I could switch meds and he was very reluctant to do so. He said he still feels this is the drug for me because of my Pseudotumor Cerebri and Migraines. He thinks the side effects of all the other anti seizure drugs will be so similar, but without the benefits to my other illness, so I'll try it HIS way. As long as the seizures are under control, THAT's the important thing to me. I KNOW it's the important thing to my hisband and daughter too! Poor kid...she's still freaked out from that experience.
The MAJOR seozure I had was while I was awake in my living room one evening while watching T.V.
My two OTHER seizures happened in my sleep in the wee hours of the morning after my hubby was up out of bed already. Now, when he's off to work, and I'm still asleep in bed, my daughter comes in my room and climbs in bed and makes sure I don't have another seizure by myself when he's not home. She's just so afraid to leave me alone. She waits outside my bathroom while I shower because she is afraid I'll have a seizure while I'm in there too. I don' twant to tell her NOT to be like this because I don't want to hurt her feelings...she is such a caring kid...I totally appreciate that she is like this...I DO! I just worry worry about her being so worried!...lol...does that sound silly? I know I am lucky to have a caring husband and daughter.
Even my DOG has been different since my seizures! he follows me EVERYWHERE!!! He never used to go upstairs with me when I would get dressed but now he does. He NEVER lets me out of his sight for even one second since he saw me have a seizure. Amazing, huh?

 

[Nakamova]

Hi iloveshelties, welcome to CWE!

Topomax is very well-known for causing the "brain fog" you describe, and you're not alone in referring to it as "Dopomax". It can be tough to find a med that strikes a balance between seizure control and side effects, but if the Topomax side effects are becoming intolerable, then definitely ask your doc about switching. There's at least one CWE member who has also been diagnosed with Pseudotumor Cerebri (IIH), and has found some control with Lamictal (which tends to have fewer cognitive side effects than Topomax).

While you and your family are still getting used to your seizure diagnosis, you may feel as if they are being over-protective, and they may feel they aren't being protective enough -- pretty normal reactions on both sides. Don't be afraid to discuss this matter-of-factly with them, and be patient -- sometimes it just takes time to get everybody on the same page.

Best,
Nakamova

 

[iloveshelties]

Dear Naka,
I promised my neuro I would give it a fair chance on the full dose as he requested...considering I am on other meds that may be making me feel foggy headed too...so I will try it for a while.

Part of me is afraid he is RIGHT...what if I do SWITCH to another anti-seizure drug, and I take all the time to titrate down off of Topamax, and titrate up on another medicine, and THAT medicine does the very SAME thing Topamax DID? Then I'm no better off than I am right NOW??? ( I know...I worry a LOT, don't I ?)

AND,...here's another worry...while I'm changing meds...will I have to worry about my seizures getting out of control? Right now,the seizures are pretty under control ( had one in my sleep last week...first one sinceJune)....don't want to mess with THAT! Foggy headdness, confusion, and dizziness is MUCH better than full blown foaming at the mouth and convulsions according to my husband and teenage daughter!!! ( Yes...THEY said they'd rather have me sleepy and confused all the time from meds than the way they saw me when they watched me have my seizure!)

All I know is this is SO much to take in in a couple of months....and when your head is not clear, it's difficult to intelligently sort it all out and think it all through. That's the thing...I'm the one people usually come to for help! I'm the problem solver! I'm the one that's the NURSE for God's sake! Now, I can't even come up with my own answers!!! One minute I'm sitting down to relax to watch T.V. after dinner in my living room after and the next minute, I'm waking up to a living room full of paramedics asking me my name, my birthday, and who the president is...none of which I knew the answer to!!!...and they are telling me I had a seizure and taking me to the emergency room!!!WOW...all I know is life has changed from that moment on!
If I could JUST get used to this fog I'm feeling, I think I could handle everything else that's been thrown at me....lol...oh, boy...I just had a thought...today's a dosage INCREASE day!....hahahahaha.....oh, well...good news is, it's the LAST ONE! I will now be at 200mg a day!!!!! yipee!!! Now it's just a matter of TIME till my body gets used to this stuff. Oh....if I don't laugh at myself, I'll lose my mind...you know what I mean?!

 

[huskymom]

welcome iloveshelties!! Can you guess what I love?? :roflmao:

 

[iloveshelties]

Thank you for the WELCOME...and a BEAUTIFUL dog it IS!