Hi everyone!! My name's Glenn. I'm 33, and live in New Hampshire. This is a bit of an odd tale, so bear with me.
I started seeing various doctors for seizure-related symptoms about two years ago, after people started to tell me that they noticed me nodding off in meetings. At first, it was just "oh, you're just not getting enough sleep." This was entirely possible, since I had a reputation of being a bit of a workaholic, but when I mentioned it to my wife, she said I should see a doctor about it. So I went and talked to a neurologist, who signed me up for a sleep-deprivation EEG to be sure I wasn't having some sort of absence seizures or something. I was still skeptical, but I went. Many of you have had these tests, so you know the drill - no sleep the night before, wires on the head, flashy lights, then take a nap (although, during the first test, it was discovered that I was having trouble staying in REM sleep, which led to the discovery that I also have sleep apnea. While that's a different story, we were hopeful that it was causing the fade-outs. Unfortunately, that was not the case.) The first EEG didn't show anything out of the ordinary. Several months go by (that's typically how long it takes to get an appointment with this doctor.) The fadeouts were becoming more frequent, only now I was starting to become aware of them in the form of missing parts of conversations. I was also starting to get migraines that would last a day or two. Occasionally, I would have these odd blackouts - one second I am just fine, the next I'm on the floor with no idea how I got there, or how long I had been there. Once I was on my way from the shower, found myself on the floor, got up, and realized two and a half hours had gone by.
The neurologist had prescribed various medications for the migraine, none of which helped, and referred me to a specialist on the other side of the state. Took two months just to get in to see this guy, during which time I was not allowed to drive. Meanwhile, the fadeouts were now turning into real seizures. I remember being in college one night, standing in the hallway talking to some people, suddenly becoming aware that there were people around me repeating "are you okay? Are you okay?" and I'm now sitting on the floor and it's all foggy.
Meanwhile, my boss is starting to get on my case, because all my tests and doctor appointments are during working hours, which means I am either missing work, asking to work from home, or calling in at a moment's notice because I have either blacked out while getting ready for work, or I woke up with a migraine and can barely function, or I am on some new medication and one of the side effects is making me too sick to drive. He always starts out with "I am trying to work with you, but..." At one point he makes me bring in a copy of all my medical records, as if he doesn't believe me, so I did. Still wasn't good enough for him. He still made my life difficult, once even telling me "it's not my rule, it's HR." I went to HR, but they told me they weren't even aware that there was a problem.
So I go in to see the specialist, he orders yet another EEG, and an MRI, neither of which shows anything unusual. The migraines are starting to become more frequent (once a month,) and lasting for three or four days, become more and more painful to the point where I can't stand light or noise, and I can't eat or even deal with people during that time. Nothing anyone can prescribe comes close to touching it. The specialist's office tries Depakote, but after about two months on that, they tell me to stop taking it because I have another seizure, so it's apparent that it isn't working. The only other thing they offer is to stick me in a room for a week where they can observe me. I wasn't too thrilled with the idea of being put into a fishbowl for a week, and I was sure that if I agreed to that, I would definitely lose my job. The other thing is, my seizures weren't happening that often, so who was to say that they'd catch one on film?
All during this time, everyone is afraid to come out and use that dreaded "E" word. As soon as they put that down anywhere official, suddenly I can't drive, my employer would have to treat me differently, etc etc. Since they can't actually PROVE it, and cannot find a CAUSE, they can't actually use that word.
About this time, the company I am working for gets bought out by a competitor. They had been talking about it for months, there were layoffs all summer leading up to the buyout, and we knew there would be more. As I expected, my boss used this as an excuse to get rid of me, so I was out the door before the ink on the merger paperwork was even dry. That was November 2001. Since that time, all my symptoms have gotten progressively worse, and I am sure the stress of being out of work has not helped my situation.
About a month ago, my wife saw an article on CNN.com about how doctors have been using Topamax to treat migraines. I had nothing else to lose, so I called the doctor's office to ask about it (surprisingly, they had a cancellation the following morning, so I grabbed it.) While waiting for a call back from the nurse who would grab some info, I called my mother, who works for a pain management office in PA. While I was down there visiting last year, I was hit with a migraine. She got a professional sample of Imatrex from one of the doctors; it was about as effective as Pez, but I wanted to know what it was so I could be sure to tell my doctor that. She was about to call me about Topamax anyway, as they have been using it on their patients as well.
I went in, and he wrote me a prescription on the spot. Probably the same ramp-up period that everyone else is on - 25mg pills, doubling the dosage each week, then changing to 100mg pills, until I am on 400mg a day. This Wednesday, I start on the 100mg pills, and by next week, I'll be on the full dosage. I certainly hope these work, because the side effects have been killer.
For one thing, I can't drink soda anymore. It tastes TERRIBLE. This was one side effect they did NOT warn me about. I bought a bottle of orange soda and returned it because it tasted awful, then bought a bottle of Coke and it too was bad. Turns out it was ME, or rather the Topamax. Oh well, I'll drink water, Cool tea and Snapple instead (it says you're supposed to drink lots of water anyway... good ol' kidney stones!)
For the first few days after changing the dosage, I feel really tired. It goes away, though. I also have much less of an appetite, which again I can deal with, as I can afford to lose about 20 pounds. What I really could do without is the nausea and the general disorientation I feel on the weeks when I double the morning dosage. I had to go to a friend's wedding this past Saturday - I musta looked like I was drunk! Fortunately, everyone I know is familiar with my situation, so it was no big deal, but I wasn't able to drive and I really felt awful. :/ I also have a tingling sensation in my fingers and feet, usually after I have been doing something like mowing the lawn or vacuuming. (Sounds like a neat excuse to get out of doing housework, neh?)
I haven't been on the stuff long enough to know if it's effective, but I really hope this stuff works. I'm running out of drugs!
Anyways... sorry for rambling on... thanks for letting me join in the sandbox!
First of all welcome to the board. I am quite new and have found it really helpful. It does seem that you have been through alot. I have complex partial and partial seizures, I don't jerk very often but I usuall just collapse and wake up after about 10 mins. I also have lots of Auras, I hear voices when I have a seizure and get funny smells often. I was only diagnosed 5 yrs ago and I am still reeling fom the shock of it all. I can understand what you are going through with regards to you work situation. I have jusst been retired on the grounds of ill health and my bosses were not very understanding during the whole process. I am sad to leave my job , but I also feel a huge amount of relief at not having to face the will I or won't have a fit today situation. Now it doesn't matter if I do cos I am at home, but obviously I will need to work again. If you want to talk to me about anything then you know what to do.
I will keep you in my prayers
Thanks for the welcome. It's nice to find a place full of people in a similar situation.
The first few times I suffered through migraines, I didn't pick up on what the doctor called an "aura," but it's happened enough times now that I can recognize it. I am able to give my wife warning in advance now. Last time it happened was the weekend before my wife found the article about Topamax; I think I told her to find someplace to hide, because I am impossible to live with. Everything annoys me - sunlight, sounds (especially the dog barking, the phone ringing, or our bird's high pitched squawking.) I cannot, however, tell when a seizure is going to happen - no smells, voices, sounds, or any other form of warning. It just happens, and it sometimes takes a while for me to realize that it has happened until several minutes afterwards. From what I've been told by people who have seen it, my seizures are anything from just eye blinking and arm twitches to falling on the ground and convulsing. Fortunately, I've never embarrassed myself by losing control of my bladder (or worse!)
I can't help but think that, had I not been laid off, I probably would have been forced to leave anyway. I'm working from home now - the tech market being what it is, I decided to just go ahead and start my own business. This lets me work from home and at my own hours.
Welcome! Sorry to hear about everything you've been through. Just wanted to share my Topamax experience with you and encourage you to be patient with it while you get through the titration period and your body gets used to the medication. I have been on topamax for over 2 yrs now for seizures and it has been a God-send for me. Although, I do have to say they did recommend that I didn't drive while beginning the medication, I'm surprised that your neurologist is allowing you to (legally he can be held responsible if something happens and he is aware you were having blackouts and hasn't recommended that you don't drive). Anyhoooo....the tingling you feel is a common side effect. I found that mine lessened when I really kept up with drinking that water that they recommend (you know....to ward off the evil kidney stones). Also, they say that if you eat foods that are high in potassium, like banannas, that is supposed to help with that too. You will find that Topamax does curb your appetite and your taste for certain foods does change. I lost about 50 pounds in 15 months on the drug. Of course my weight then stabilized due to my pregnancy. I definately had the weight to lose though. You might find also that you have loose bowels or diarrhea too......that is normal and gets better as your body gets used to the medication too.
I was diagonosed with E. 3 years ago. I was on Topamax and for seizure control it worked great for 18 months... I had no problems and I was only on 50 mgs. Then all of a sudden I started having MAJOR memory problems. People would be talking to me and it was like everyone all of a sudden spoke a different language because I couldn't understand squat....I also got the tingles in my hand and feet at times it was so bad that it felt like they had fallen asleep and i was walking on that "pins and needle" feeling
I just got out of the "fishbowl" you talked of. It wasn't as bad as you think. But then again I was lucky and had my seizure the first night there My EEG's and MRI's were all normal, the only time he found anything wrong was actually during the seizure. They found out mine start from the Frontal Lobe ..... now just gotta see what can be done.... I was also on Depakote .. all it did was make me gain weight and loss my hair ...... I am now on Keppra taking 3000 mg a day it hasn't worked yet but since he just upped it hopefully it will work soon...
Well I just really menat to stop in and say Welcome to the board... there is so much info on these to help ...... I hope the Topamax works for you!
they did recommend that I didn't drive while beginning the medication
Maybe since I work from home, the doctor didn't consider it as much of a worry. The sheet that came with the pills does warn against operating heavy machinery (there are days when this keyboard could be considered part of that category!) but I wasn't placed on any restrictions. I hadn't heard about eating more bananas, but I try to eat them anyway because I am prone to leg cramps (especially now that the weather's getting cold.) I'll keep that in mind. Now that you mention it, I have had the runs more often, but I figured that was just the nausea I've been feeling lately. I'm feeling a lot better over the past two days though.
all of a sudden I started having MAJOR memory problems
This concerns me... even before I started experimenting with various seizure meds, I would have difficulty forming coherent thoughts. The various medication didn't help at all, but since taking Topamax, it has become worse. I will be talking to someone, and suddenly have to stop dead in mid sentence because I can't pull the correct word out of my head. Usually it's not a simple word, but it's a common word that I am very familiar with, and it's embarrassing when someone has to fill in the blank for me. The other day, I finally just started going "bede-bede-bede" like ***** Pig, just to break the tension... I really hope this passes. I am usually much more fluent with the English language.
My boyfriend has TLE. He hasn't had any gran mal seizures since he was 3, and went 8 years with no seizure activity of any kind until he moved across country and in with me. See what I do to men? Heh Heh...all kidding aside, it is a very scary thing for me.
Patrick has partial seizures, he is always coherent and can talk to me while he is having them. Very rarely is it visable to anyone more than a couple of twiches. His vision is affected by auras and "Alice in Wonderland Syndrome" and he is plauged by migraine-type headaches that never go away.
He is now on Depakote via our regular physician to tide him over until he is seen by a neuro in late November. I am always appalled by our health care system, and the apparent non-chalant attitude of doctors that are willing to let someone sit for months at a time and convulse until they find a slot for them in their schedule. Depakote seems to be helping him a bit with the headaches, and his "progression" of sezure activity has been haulted, which gives him more confidence in his daily life.
He is a full time student, going to shcool for medical transcription (which he can do from home, like you are working from home...an ace in the hole fall back *wink*) and then on to become a Rad Tech where he can do some good in a system that seems so full of people who could give a rip. Arrrgh!!
Anyway, many things that you have said "ring bells" for me. The Topamax thing, I read about it to, since Patrick has such awful headaches...but he seems to be being helped by the Depakote, although he said he feels like he can be on a bit higher dosage. The worst thing he finds are the head pain and the fact that sometimes as he puts it , his "brain becomes exhausted". He is a very creative thinker, we met on a writer's web page, but he feels lots of his fluid thoughts and his ideas are compromised by his mental lethargy. It frustrates him and he feels it is the worst thing. He feels like, although he is doing excellent in school, that he could do BETTER and be SHARPER, but is dulled by his epilepsy...he doesn't necessarily think it is the Depakote that is doing it, but the Epilepsy itself.
I come to this board all the time, because I want to learn as much as I can, so I can prepare myself for what lay ahead, being committed to someone that has E, and also so that I can be best prepared help and support him through anything that may come along. I am an HR Admin (you one of the bad guys), and I am "up" on most facets of employment law, so I like to see if I can help people on the board with employment related matters that can come up in dealing with E.
Welcome (from another newbie)...I am very interested to hear the outcome of your Topamax experience, as well as anything else that may come up. How does your wife deal with your E? Do you find anything in particular that she does to help you that you consider invaluable? Doin' research here. Speaking from someone who is in that role, sometimes, it is very frustrating because it is difficult to understand when you are outside trying hard to look in.
Good to have you here...look forward to hearing more from you!
"Life is what happens
while you're making
"Life is what happens
while you're making
Oh....I guess I forgot to mention the problems with "word find difficulty". I also have that. Of course I am also the "queen of compensation" *giggle*.....I use overheads now when I do public speaking/educational presentations, so it hasn't caused me any great grief there. It seems that I am more irritated by it than other people notice it, if that makes any sense. I do get frustrated when I have to write life plans for folks at work or medical histories and I get bogged up trying to find the word I want and can't think of it...it can get very frustrating. It has slowed down my work process I believe, but not so much that I cannot function. I need more peace and quiet to concentrate on my work these days though.
What's up, Doc? (chuckle) Sorry, I couldn't resist!!
Hey guys...saw your comments on memory problems. I also have a terrible time also with remembering things I should know: words, dates, deadlines, etc. It's embarrassing, I agree, but thankfully my partner at work knows I have a "problem" and is patient with me. I have to use Power Point or I am worthless during presentations! Glad I only work part-time!!!
Heck, why do I need to wait for a doctor to diagnose me! I have learned enough here to diagnose myself!
[This message has been edited by YogaMom (edited 10-23-2002).]