I hate to obsess over weight, but I really don't want to climb back up to where I was before. Now before everyone starts in on a size 8 isn't fat, let me explain my past. I've always been small. When I was 20 and joined the Navy, I wore a size 3. Possibly should have gotten out of the Jr. department and into a 2-4, but anyway. By the time my first child rolled around, I was a size 8-10. I felt good there. After my first child, I got up to almost a 14, and started feeling a bit depressed. I worked my butt off (literally) lifting weights. I only lost 20 pounds, but went down to a size 6. I stayed around a 6-8 for quite a while. Right before the diagnosed me with a seizure disorder, I had gotten up to almost a 14 again. I guess I ate my frustration with my in-laws. They put me on Topamax, and the weight dropped off, and I almost got down to a size 4. My husband and I agreed that was too thin. But when I moved out of the in-laws house, I got up to a size 6. I was very comfortable there.
Originally, my doctor didn't really want me below an 8, because of starting at a 12. But he agreed that the 6 looked good. Now I'm fully into an 8 (a vintage 10 in jeans if there's no stretch). I don't mind the size, but I don't like the belly.
Fortunately, my doctor told me at the last visit that if I kept gaining weight, he'd change the meds. I've put on at least 10 pounds total. I know that's not too bad, but I don't want anymore. It doesn't seem to matter if I exercise or not, I stay right where I'm at.
I got a blender that crushes ice, so I'll be making more smoothies, maybe even vegetable ones. We'll have to see how it does on carrots. Drinking carrot juice is one other way I lost weight.
I've had no side effects from the Depakote besides weight gain and thinning hair. Sometimes if I take my evening pill to far after dinner, I get a little heartburn, but it's not bad. I can drink sodas again, even though we don't very often. If I go out, I can get a Coke again, YEA! I've missed a pill (once a day) 4 times in one week, and not had any problems. I'm going to mention it to the doctor and see if we can lower it. I don't know if 500mg is too low of a dose. I'll have to look that up.
I got to talk to my sister-in-law's husband, who just got diagnosed with epilepsy as well. He told me what he was on, but I never heard of it. His seizure was probably chemically related. But then I talked to my sister-in-law, and he's still having problems that he doesn't want her to mention to the doctor. She asked me if I ever said things that made no sense, or saw weird things. I said mine simple partial seizures usually involved hearing, mood changes, seeing, and being really confused. I forgot to tell her about the jais ma vu (however you spell that). That's the opposite of deja vu, where everything should look familiar, but you don't recognize it. I got that a lot before I was diagnosed...thought I was losing my mind. I'd have to read the road sign and just go on faith that it would take me home because it was the right road but nothing looked familiar. Once, when my husband was driving I thought a construction trailer jumped out in front of us...until I blinked. I even did the quick draw in a breath, like he was going to hit it.
So, I think my brother-in-law is in a bit of denial. He's afraid that a car accident he had when he was young may contribute, and this won't be an isolated event.
Monday, December 27, 2010
Sunday, November 28, 2010
Weight Journal
Well, it's my second month on Depakote. I've gained about 7 pounds so far. I tried to diet, using the Richard Simmons Deal a Meal. The first day I realized I don't eat 1200 calories a day all the time. So I tried harder the next day and made it, but the next day I went over. Not TECHNICALLY, but I didn't measure, so I got larger portions than the card called for, which is the same thing as going over. I don't know what the line is for gaining "too much weight," which my neurologist said he would put me on something else if I gained too much.
I don't want to change meds again, but I don't want to go out and buy all new clothes, either. We'll see.
Well, this is going to be a short post, it being Thanksgiving Weekend. I hope everyone had a good Turkey Day. I know there are a lot of things I'm thankful for.
I don't want to change meds again, but I don't want to go out and buy all new clothes, either. We'll see.
Well, this is going to be a short post, it being Thanksgiving Weekend. I hope everyone had a good Turkey Day. I know there are a lot of things I'm thankful for.
Monday, November 1, 2010
Does Diet effect meds?
I used to be a vegan. Not for political reasons. I'm actually a conservative. Now all the liberals are screaming, "How can that be?" I'm a conservative who recycles, makes my own compost, was at one time totally vegan with 75-85% of my diet raw. I fell off that diet (the Hallelujah Acres diet) when I got cancer. Not BECAUSE I got cancer, but because the church was bringing us food, and it was hard to tell them, only bring salads and maybe twice baked potatoes. How do you look a gift horse in the mouth like that? And then I ended up with Celiac disease, and it was really hard to feed me. And then my kids ended up with it. Actually, my oldest already had it, so it was don't send over any noodles, David can't eat them. We had to have a noodle dish ready in case they sent a casserole with cream of mushroom soup in it. You can't expect strangers to understand this diet. It's complicated, and they don't deal with it on a daily basis. We were thankful to not have to prepare a meal with me in a weakened condition. So we fell off the diet.
Eating vegan is more expensive IF you try to eat like you used to eat. If you get the vegan cheese, vegan this and that. Cutting everything out and just not substituting is hard, too, because then you go out and have salad. As a Christian, we also felt that it was "before the flood" thinking. We evolved on to later in the Bible. There was a book called Body by God, and I can't remember the author right this minute, and I'm sorry, I can't put my hands on my copy of his book. I'm thinking about starting his diet. I read about it, but never actually put it in practice. I'll have to find the book to refresh my memory, but it was based on much smaller portions of meat, and only a couple times a week. And it was all about WHEN you ate certain things. I remember you get up and eat fruit and carbs. Never combine carbs and meat. You don't need fruit or carbs at night. You don't really need meat in the morning meal. Lots of real juice. Juiced vegetables would be OK, too, I guess. Lots of veggies. Doesn't really matter if it was cooked or raw, but I believe he said as close to the natural state as possible, which would be fresh. But a vegetable casserole is better than meat. It was all in how you combined and when you ate it.
I'm also going to start juicing carrots again. That was a big thing that kept me regular (sorry for the graphic). I've noticed that Depakote makes me a little "Big C." Maybe that's why you gain weight...it just doesn't come out! I used to run the carrots through a Champion juicer and get only juice. But I don't like to clean the thing. I want a Vitamix, but the one I bought with my mother in law, she kept when we moved out. Didn't even pay me for my half. It's like she got it in the divorce. It was a really bad move-out. Right now, I'll have to settle for a regular to make my smoothies.
We did just refinance our house, and I'm going to put the amount we don't have to pay on a mortgage this month for a Vitamix. My health is more important than a new computer when this one works. I think my sister-in-law is working on her, because she doesn't even use it, just didn't want me to have it. She grinds nuts with it, that's all.
But I don't drink just carrots anymore. Today I put in 1 small tomato, 1 stalk of celery, 1 tomatillo (happened to have a couple left), 1/2 a bell pepper, 1/2 banana, a small hand full of spinach and a carrot. And then a glass of filtered water. I also put a squirt of lemon juice, a sprinkle of basil and a dash of salt. It's not bad. It's a little chunkier than a Vitamix, which would get it really smooth, but it's drinkable. Sometimes I put ice cubes, already crushed by the refrigerator, and then hit liquefy. That makes it cooler.
Maybe this will keep the weight off. I'll keep this blog posted. Remember, exercise keeps your mood up.
Lori Ann Smith
Eating vegan is more expensive IF you try to eat like you used to eat. If you get the vegan cheese, vegan this and that. Cutting everything out and just not substituting is hard, too, because then you go out and have salad. As a Christian, we also felt that it was "before the flood" thinking. We evolved on to later in the Bible. There was a book called Body by God, and I can't remember the author right this minute, and I'm sorry, I can't put my hands on my copy of his book. I'm thinking about starting his diet. I read about it, but never actually put it in practice. I'll have to find the book to refresh my memory, but it was based on much smaller portions of meat, and only a couple times a week. And it was all about WHEN you ate certain things. I remember you get up and eat fruit and carbs. Never combine carbs and meat. You don't need fruit or carbs at night. You don't really need meat in the morning meal. Lots of real juice. Juiced vegetables would be OK, too, I guess. Lots of veggies. Doesn't really matter if it was cooked or raw, but I believe he said as close to the natural state as possible, which would be fresh. But a vegetable casserole is better than meat. It was all in how you combined and when you ate it.
I'm also going to start juicing carrots again. That was a big thing that kept me regular (sorry for the graphic). I've noticed that Depakote makes me a little "Big C." Maybe that's why you gain weight...it just doesn't come out! I used to run the carrots through a Champion juicer and get only juice. But I don't like to clean the thing. I want a Vitamix, but the one I bought with my mother in law, she kept when we moved out. Didn't even pay me for my half. It's like she got it in the divorce. It was a really bad move-out. Right now, I'll have to settle for a regular to make my smoothies.
We did just refinance our house, and I'm going to put the amount we don't have to pay on a mortgage this month for a Vitamix. My health is more important than a new computer when this one works. I think my sister-in-law is working on her, because she doesn't even use it, just didn't want me to have it. She grinds nuts with it, that's all.
But I don't drink just carrots anymore. Today I put in 1 small tomato, 1 stalk of celery, 1 tomatillo (happened to have a couple left), 1/2 a bell pepper, 1/2 banana, a small hand full of spinach and a carrot. And then a glass of filtered water. I also put a squirt of lemon juice, a sprinkle of basil and a dash of salt. It's not bad. It's a little chunkier than a Vitamix, which would get it really smooth, but it's drinkable. Sometimes I put ice cubes, already crushed by the refrigerator, and then hit liquefy. That makes it cooler.
Maybe this will keep the weight off. I'll keep this blog posted. Remember, exercise keeps your mood up.
Lori Ann Smith
Thursday, October 21, 2010
Depakote side effects
Well, I'm not too happy with Depakote. I have to be up and at em at 5:30 AM, and that's not possible with Depakote. I'm wobbly on my feet, and my wrists are weak which makes it difficult (all 3 side effects) to get my child to school on time. My morning consists of getting up at 5:30 in order to make my husband coffee, and then getting my son up at 5:50. I don't think sleeping in until 5:50 would make that big of a difference. My hands feel like they're gong to slip off the steering wheel when I make a turn. I have to come home and take a nap, which makes it difficult to parent my OTHER child. He's a 20 year old Down syndrome adult. Admittedly, he doesn't need a lot of parenting, but he needs a little. I find it difficult to type when my wrists jerk around.
I'm going to try to take my 3rd dose at 3:00 pm, instead of supper time and see if that eliminates the nightly migraine. My neurologist has prescribed Maxalt for when I do get a migraine. In the mean time, because we refinanced and were able to add $126 a month to our budget, we're going to absorb it into the groceries. We're going to eat better, more vegetables. I'm going grocery shopping today. I used to be on a vegan diet. I'm not going vegan again, it' just too difficult in today's society, but I am going to cut back on the meat. We're going to only have a meat mean 3 times a weak, cut back on dairy, add more rice dishes, etc. I'll keep this blog informed.
Lori Ann Smith
I'm going to try to take my 3rd dose at 3:00 pm, instead of supper time and see if that eliminates the nightly migraine. My neurologist has prescribed Maxalt for when I do get a migraine. In the mean time, because we refinanced and were able to add $126 a month to our budget, we're going to absorb it into the groceries. We're going to eat better, more vegetables. I'm going grocery shopping today. I used to be on a vegan diet. I'm not going vegan again, it' just too difficult in today's society, but I am going to cut back on the meat. We're going to only have a meat mean 3 times a weak, cut back on dairy, add more rice dishes, etc. I'll keep this blog informed.
Lori Ann Smith
Wednesday, October 20, 2010
Complex Migraines
I'm learning more and more about complex migranes. I'm learning there isn't a lot of difference between migraines, seizures and strokes. I want to know how a neurologist knows whether one is having a seizure or a complex migraine. I've been told that if it lasts longer than a few seconds (up to 30 seconds), it must be a complex migraine, because it would be life threatening. So? What if it were? Is my life at risk, should I get to the hospital? Am I qualified to know the difference? If I've always had migraines in the past, and suddenly I have a seizure that lasts an hour, I'd be dead because I assumed it was a migraine again. The symptoms are the same.
Here were my symptoms: I had a fight with my mother-in-law, but by proxy. She yelled at our realtor and refused to lower the price of the house we're trying to sell. Says if she waits a couple years, she can get out of it what she put in it. My realtor tried to tell her, if she does that, the house she could get now for $75,000 will cost her $100,000. It's a push-pull. So, my husband was going to go and confront his mother and give her an ultimatum. I knew he would cave, but he was supposed to tell her either lower the price $5,000 or take over our payments and get our name off the house and do what ever you want with it. So, I get flashy lights, then I lost about half my hearing. For about 10 seconds my left arm went tingly. Several times I had my wrists spasm. My legs also went weak. And I got extremely sleepy. I am wiped out today. This was on top of having the almost same thing happen the day before yesterday. I only had the partial deafness then and pain in my head.
The first day lasted at least 5 hours, at which time I fell asleep. The second one lasted about that long, and I had to go to bed early, still going to bed with the symptoms. I took a Maxalt, for the migrain, left over from 2006. I'm calling my neurologist today to find out what he wants to do. I can't survive having thse 5 hour complex migraines every day.
Lori Ann Smith
Here were my symptoms: I had a fight with my mother-in-law, but by proxy. She yelled at our realtor and refused to lower the price of the house we're trying to sell. Says if she waits a couple years, she can get out of it what she put in it. My realtor tried to tell her, if she does that, the house she could get now for $75,000 will cost her $100,000. It's a push-pull. So, my husband was going to go and confront his mother and give her an ultimatum. I knew he would cave, but he was supposed to tell her either lower the price $5,000 or take over our payments and get our name off the house and do what ever you want with it. So, I get flashy lights, then I lost about half my hearing. For about 10 seconds my left arm went tingly. Several times I had my wrists spasm. My legs also went weak. And I got extremely sleepy. I am wiped out today. This was on top of having the almost same thing happen the day before yesterday. I only had the partial deafness then and pain in my head.
The first day lasted at least 5 hours, at which time I fell asleep. The second one lasted about that long, and I had to go to bed early, still going to bed with the symptoms. I took a Maxalt, for the migrain, left over from 2006. I'm calling my neurologist today to find out what he wants to do. I can't survive having thse 5 hour complex migraines every day.
Lori Ann Smith
Friday, October 15, 2010
Side Effect Update
Well, I started Depakote Wednesday night, had 3 doses on Thursday, and here it is Friday. I've lost 2 pounds. I have to wonder, though, is it because I've only dropped the 50 mg of Topamax at night, as I'm weaning off of it? So I'm basically on 2 anti-seizure meds at the same time. I'm also wondering if I was not having complex migraines, but parietal lobe seizures. That's the problem with just a little medical background....self diagnosis. I got a book from the library and it said that parietal lobe seizures are really hard to diagnose. My neurologist did say that seizures, migraines and TIA's are all very closely related and the brain is complicated. Sometimes the symptoms overlap. It's pretty much a guessing game. You get numbness and tingling with parietal lobe seizures. I have NEVER had those symptoms with migraines and I've always had pain and flashing lights with my migraines. Why would they change now?
When the started the diagnosis process, my neurosurgeon said he thought I was having complex migraines and was only going to do the 48 hour EEG to rule out seizures. Low and behold, they confirmed seizures. But, at least this way I get to drive. My question, that I have come across the answer to in my books yet, is do they evolve into worse seizures? Will they, if left not treated properly, evolve into absence seizures? Or will they become grand mal seizures? Oops, I mean tonic/clonic seizures. Sorry, I'm old, I forget there is a politically correct way to speak of epilepsy now. I should be calling it a seizure disorder.
I'm not insulted by the term epilepsy. My mother in law got so upset with me. "You don't have epilepsy, you have a seizure disorder." It took me so long to tell her it was the same thing. There became a stigma associated with epilepsy, so they renamed it. They claim it's because epilepsy is so multi-faceted, but I think it's because employers only see the grand mal type seizures. I know I don't have to tell them, but I feel I'm lying if I don't. There is the small chance I'll lose my driver's license if suddenly my seizures become uncontrollable and come back. An employer has the right to know that.
Like I said earlier, I'm holding down two mortgages. I reactivated my job search through Texas Job Search. I'm not having much luck. I've had about 4 hits. They've all been a long drive away. I have to consider my epilepsy. The first one would have been ideal for me, but it was a 38 minute drive...one way. One required memorization of names and dates. Yea, right. Had to let that one go, besides being a 45 minute drive, one way.
I've had no other side effects at this time with Depakote. I have noticed being a bit tired. But I've always taken a nap around noon, so is it more? I am more able to face my paper monster today, so maybe the depression is lifting a bit? I filed my paper drawer (which held 4 months of paperwork) but I haven't gotten to the receipts. I also mopped the kitchen floor. I plan to mop the bathroom, but we'll see. I need to get back on Fly Lady. We'll see about that, too.
Lori Ann Smith
When the started the diagnosis process, my neurosurgeon said he thought I was having complex migraines and was only going to do the 48 hour EEG to rule out seizures. Low and behold, they confirmed seizures. But, at least this way I get to drive. My question, that I have come across the answer to in my books yet, is do they evolve into worse seizures? Will they, if left not treated properly, evolve into absence seizures? Or will they become grand mal seizures? Oops, I mean tonic/clonic seizures. Sorry, I'm old, I forget there is a politically correct way to speak of epilepsy now. I should be calling it a seizure disorder.
I'm not insulted by the term epilepsy. My mother in law got so upset with me. "You don't have epilepsy, you have a seizure disorder." It took me so long to tell her it was the same thing. There became a stigma associated with epilepsy, so they renamed it. They claim it's because epilepsy is so multi-faceted, but I think it's because employers only see the grand mal type seizures. I know I don't have to tell them, but I feel I'm lying if I don't. There is the small chance I'll lose my driver's license if suddenly my seizures become uncontrollable and come back. An employer has the right to know that.
Like I said earlier, I'm holding down two mortgages. I reactivated my job search through Texas Job Search. I'm not having much luck. I've had about 4 hits. They've all been a long drive away. I have to consider my epilepsy. The first one would have been ideal for me, but it was a 38 minute drive...one way. One required memorization of names and dates. Yea, right. Had to let that one go, besides being a 45 minute drive, one way.
I've had no other side effects at this time with Depakote. I have noticed being a bit tired. But I've always taken a nap around noon, so is it more? I am more able to face my paper monster today, so maybe the depression is lifting a bit? I filed my paper drawer (which held 4 months of paperwork) but I haven't gotten to the receipts. I also mopped the kitchen floor. I plan to mop the bathroom, but we'll see. I need to get back on Fly Lady. We'll see about that, too.
Lori Ann Smith
Thursday, October 14, 2010
Dreams
I wonder, if you're having trouble, do you not dream? I've had 3 doses of the Depacote now (actually the generic substitute) and I had a dream when I went to lie down for a nap. I realized I haven't had a dream in a long time.
I was driving (and in the dream it was actually my car-a PT Cruiser), but I wasn't in the driver's seat. I was in the back seat on the passenger's side. But I could steer and brake. My car came up to a traffic light that was green, but there was a lady crossing the street against the light. As she got in my lane, she realized she was crossing against the light and stopped. Dead still in my lane. And just stood there. I had to slam on my brakes or hit her. The people on the curb started shouting to her that she was in the middle of street and that she was in the wrong. She said "The light is red, I'm not supposed cross now." She had no concept of her wrong-doing, that she was supposed to stop BEFORE she started crossing. She didn't realize that she should have hurried across in order to correct her mistake. She just stood there looking at that red light. I sat there looking at my green light unable to move because she was blocking my path. Then another woman came and stood with her to support her decision and tell her she was right. Suddenly my car lurched forward, even though my foot was on the brake. The second woman got angry that I would try to force the issue and pushed my car backwards to make me wait my turn. I was mad, because it WAS my turn, not hers. And that's when I woke up.
I'm not real good at interpreting dreams, but here's what I get out of it. I must feel as if I'm not in control of my life, thus the sitting in the back seat of the car. The car usually represents one's life. Not only was I not in the driver's seat, I wasn't even on the same side as the driver. I couldn't see very well through the windshield, so apparently I can't see what lies ahead of me, or my future. I don't know who the woman was who was crossing the street, but I assume it was my mother-in-law. That's the only woman in my life who I feel is blocking my path in anyway. She (as I analyze her intentions) feels she has done no wrong. She always tells me that she did nothing to me when we lived in the house with her. She may now feel like she did something wrong, but has stopped where she is, refusing to go on, or go back, which stalls me where I am, too. Now, as to who supported her, I have no idea. It can't be God, because God is never represented by a woman. Can it be Satan? Probably not. I don't think she's evil, just misguided. Who was driving my car that pushed the two of them out of the way? I wish I could have stayed asleep a little longer to get my answers. My son wanted to wake me up and let me know that my "favorite" wrestler was on Wrestlemania....of course he had it wrong, because Randy Savage was on, and I like The Rock.
Lori Ann Smith
I was driving (and in the dream it was actually my car-a PT Cruiser), but I wasn't in the driver's seat. I was in the back seat on the passenger's side. But I could steer and brake. My car came up to a traffic light that was green, but there was a lady crossing the street against the light. As she got in my lane, she realized she was crossing against the light and stopped. Dead still in my lane. And just stood there. I had to slam on my brakes or hit her. The people on the curb started shouting to her that she was in the middle of street and that she was in the wrong. She said "The light is red, I'm not supposed cross now." She had no concept of her wrong-doing, that she was supposed to stop BEFORE she started crossing. She didn't realize that she should have hurried across in order to correct her mistake. She just stood there looking at that red light. I sat there looking at my green light unable to move because she was blocking my path. Then another woman came and stood with her to support her decision and tell her she was right. Suddenly my car lurched forward, even though my foot was on the brake. The second woman got angry that I would try to force the issue and pushed my car backwards to make me wait my turn. I was mad, because it WAS my turn, not hers. And that's when I woke up.
I'm not real good at interpreting dreams, but here's what I get out of it. I must feel as if I'm not in control of my life, thus the sitting in the back seat of the car. The car usually represents one's life. Not only was I not in the driver's seat, I wasn't even on the same side as the driver. I couldn't see very well through the windshield, so apparently I can't see what lies ahead of me, or my future. I don't know who the woman was who was crossing the street, but I assume it was my mother-in-law. That's the only woman in my life who I feel is blocking my path in anyway. She (as I analyze her intentions) feels she has done no wrong. She always tells me that she did nothing to me when we lived in the house with her. She may now feel like she did something wrong, but has stopped where she is, refusing to go on, or go back, which stalls me where I am, too. Now, as to who supported her, I have no idea. It can't be God, because God is never represented by a woman. Can it be Satan? Probably not. I don't think she's evil, just misguided. Who was driving my car that pushed the two of them out of the way? I wish I could have stayed asleep a little longer to get my answers. My son wanted to wake me up and let me know that my "favorite" wrestler was on Wrestlemania....of course he had it wrong, because Randy Savage was on, and I like The Rock.
Lori Ann Smith
My Weekend
(This post originated on another blog I have, but since it's epilepsy related, I wanted to include it here.)
I had an interesting weekend. I spent it in the emergency room and the hospital. I've been pretty open about my medical history (probably more so than I should be). I have epilepsy - oh, excuse me, the politically correct term these days is "seizure disorder." I had an "incident" that didn't match up with a seizure on Friday. I had run an errand, and when I got home, my face went numb, my left arm went tingly and my legs went weak/heavy. That's not the symptoms for a seizure. I have a bit of medical background (mostly through my mother being a nurse, some because my son has been in the hospital so much), so I looked up TIA's on line. That stands for Transient Ischimic Attack. Now I was a bit wrong it exactly what it was. I thought it was a mini-stroke, I was a bit wrong. It is more like the body's warning system that a stroke COULD occur. My symptoms matched. While I was checking the differences between the two (stroke vs seizure), my son called from school. He was having another migraine, and wanted to know if he could take another non-aspirin pain reliever. I said yes and hung up. I was considering calling the school back to talk to the nurse and tell her that he had an appointment scheduled with the pediatric neurologist, when she called me back. She wanted me to email her a permission slip because this was the second time this had happened and they didn't have anything formal saying they could do this. I asked for her to give me her email address and had trouble spelling a simple word in the address. I realized I was confused, another big indicator.
At this point, I called my husband at work. NOW, at this point, I have to defend my husband. I was confused, and used medical talk to a mechanic. I told him I was either having a TIA or a seizure and needed to go to the ER. He had no idea what a TIA was, knew I had had seizures before and don't have grand mal but simple partial, and I didn't sound impaired. He told me to call his mother because he was swamped. I called his mother and she didn't answer her cell or house phone, so I called him back. He still argued with me so I hung up on him. By this time, my arm had quit tingling, but my face was still numb. My MIL called back. She had been in a doctor's appointment. She didn't hesitate, without even knowing what it was for, but I did tell her. Of course, she didn't know what a TIA was either, until I told her mini-stroke, once I was in the van.
After the CT, they said all the symptoms couldn't rule out a TIA, but they were inconsistent. So they checked me in for the night and scheduled an MRI. They said what was inconsistent was that both legs went weak/heavy. Usually a TIA is one side of the body. So after the MRI on Saturday (not until 3:00 PM), they ruled it a complex migraine.
I had found myself hoping it was a TIA because I didn't want to lose my driver's license due to a seizure. I had never even thought of a complex migraine. I didn't know you could have such symptoms with a migraine. They told me to get an appointment with my neurologist. Funny thing is, that morning, right before the errand I ran, I had made an appointment with my neurologist. They have me on Topamax. It causes severe short term memory loss. I used to hold the entire Russian fleet statistics in my head; I used to have the movie collection of my son (close to 100) plus his cd's, DVD's and cassette tapes so that when he wanted a new one I could say, "No, you already own that one." Now, I can't remember when to pay the mortgage, or IF I payed the mortgage. I can't remember to balance the checkbook at the end of the month when the statement comes in. I can't remember to get something out for dinner. I can't remember the surgery dates of my son. Things are falling out my ears. I know it's the Topamax, because I can remember other things if I sit down and try. I lose names, but they eventually come to me. I feel like an Alzheimer's patient sometimes. Given enough time, I can come up with it. But sometimes I don't have that time. For someone who considered herself fairly intelligent, it's somewhat a slap in the face.
I try to think maybe it's a God thing. God uses even our weaknesses to show how powerful He is. Not that I've done anything great, but what I've done for Him, He's done. I never would have been able to have done it on my own, in my own strength. My memory abilities only prove that.
Hopefully, changing medications will alleviate some of the problems. I would even put up with migraines again to have my memory back. I can now sympathize with Alzheimer's patients, though. Early stage get combatant because they know they should know....and they morn who they used to be.
I had an interesting weekend. I spent it in the emergency room and the hospital. I've been pretty open about my medical history (probably more so than I should be). I have epilepsy - oh, excuse me, the politically correct term these days is "seizure disorder." I had an "incident" that didn't match up with a seizure on Friday. I had run an errand, and when I got home, my face went numb, my left arm went tingly and my legs went weak/heavy. That's not the symptoms for a seizure. I have a bit of medical background (mostly through my mother being a nurse, some because my son has been in the hospital so much), so I looked up TIA's on line. That stands for Transient Ischimic Attack. Now I was a bit wrong it exactly what it was. I thought it was a mini-stroke, I was a bit wrong. It is more like the body's warning system that a stroke COULD occur. My symptoms matched. While I was checking the differences between the two (stroke vs seizure), my son called from school. He was having another migraine, and wanted to know if he could take another non-aspirin pain reliever. I said yes and hung up. I was considering calling the school back to talk to the nurse and tell her that he had an appointment scheduled with the pediatric neurologist, when she called me back. She wanted me to email her a permission slip because this was the second time this had happened and they didn't have anything formal saying they could do this. I asked for her to give me her email address and had trouble spelling a simple word in the address. I realized I was confused, another big indicator.
At this point, I called my husband at work. NOW, at this point, I have to defend my husband. I was confused, and used medical talk to a mechanic. I told him I was either having a TIA or a seizure and needed to go to the ER. He had no idea what a TIA was, knew I had had seizures before and don't have grand mal but simple partial, and I didn't sound impaired. He told me to call his mother because he was swamped. I called his mother and she didn't answer her cell or house phone, so I called him back. He still argued with me so I hung up on him. By this time, my arm had quit tingling, but my face was still numb. My MIL called back. She had been in a doctor's appointment. She didn't hesitate, without even knowing what it was for, but I did tell her. Of course, she didn't know what a TIA was either, until I told her mini-stroke, once I was in the van.
After the CT, they said all the symptoms couldn't rule out a TIA, but they were inconsistent. So they checked me in for the night and scheduled an MRI. They said what was inconsistent was that both legs went weak/heavy. Usually a TIA is one side of the body. So after the MRI on Saturday (not until 3:00 PM), they ruled it a complex migraine.
I had found myself hoping it was a TIA because I didn't want to lose my driver's license due to a seizure. I had never even thought of a complex migraine. I didn't know you could have such symptoms with a migraine. They told me to get an appointment with my neurologist. Funny thing is, that morning, right before the errand I ran, I had made an appointment with my neurologist. They have me on Topamax. It causes severe short term memory loss. I used to hold the entire Russian fleet statistics in my head; I used to have the movie collection of my son (close to 100) plus his cd's, DVD's and cassette tapes so that when he wanted a new one I could say, "No, you already own that one." Now, I can't remember when to pay the mortgage, or IF I payed the mortgage. I can't remember to balance the checkbook at the end of the month when the statement comes in. I can't remember to get something out for dinner. I can't remember the surgery dates of my son. Things are falling out my ears. I know it's the Topamax, because I can remember other things if I sit down and try. I lose names, but they eventually come to me. I feel like an Alzheimer's patient sometimes. Given enough time, I can come up with it. But sometimes I don't have that time. For someone who considered herself fairly intelligent, it's somewhat a slap in the face.
I try to think maybe it's a God thing. God uses even our weaknesses to show how powerful He is. Not that I've done anything great, but what I've done for Him, He's done. I never would have been able to have done it on my own, in my own strength. My memory abilities only prove that.
Hopefully, changing medications will alleviate some of the problems. I would even put up with migraines again to have my memory back. I can now sympathize with Alzheimer's patients, though. Early stage get combatant because they know they should know....and they morn who they used to be.
Who am I?
Does epilepsy define me? Sometimes. It shapes me, but I don't know that it defines me. I was diagnosed late in life, in my early 40's. I got to discover who I was, and then have it ripped from me. It has caused a bit of depression, resentment, anger, things that had to be dealt with. It's abeen a long road over the past 3 years (or maybe more...time has lost meaning). I have experienced a roller coaster of emotions. This blog will be my attempt to put that journey into words. There will be an explanation of who I was before all this happened to me, who I am now, how I'm coping with the changes, and how I try to keep "Me" ... well, Me. I'm really new to this journey, being only 3 years old. I have no one in my family with epilepsy. I have a mix of supporters and deniers.
Let's start with the history. I'm now 46 years old. I'm a Navy veteran, mother of 2 lovely children. One is now 20 and has Down syndrome and autism. The other is extremely ADHD and gifted. I'm a breast cancer survivor, getting ready to go over 6 years in January. Both my chilren and I are Celiac Disease, meaning we can't eat wheat, oats, barley or rye. I'm married to a 20 year Navy veteran. We met when I was active duty. Twenty-two years ago I held all the statistics for the Russian submarine fleet in my head, plus a few other countries and what they tell us about our submarines. I didn't have a top secret clearance, only a secret no-foreign nationals, so what they tell us, and what is actually the case, may not be the same. Now, because of the meds I'm on, I can't remember where I put my purse, when I paid the mortgage or IF I paid the mortgage. The hard part for my family is that they have always depended on me to remember everything. My husband is constantly coming to me with questions, where is X? When is Y? And now I'm having to say, "I have no idea." He blames me because I didn't write it down. I never had to before. I used to remember every single movie (and we're talking about almost 100) that my son owned so when he wanted to buy one I could say, "no you already have that one."
I have been on Topamax since I was diagnosed about 3 years ago. I have finally gotten tired of the memory deficits. I'm tired of being in the middle of a conversation and suddenly forget a word...searching....and just have to give up and say epilepsy sucks, I can't remember.
I have recently become politically active because I love my country. It's not about party, so anyone who is a Democrat, don't shoot me. I was raised a Democrat. I know Democrats who are extremely patriotic. That's why I have not been upset with any other election in history before. It just meant my dad's party won. How could I be upset? But now the Democratic party has been hi-jacked and it has opened my eyes to see that so has the Republican party. America is infected with Progressives in both parties. But epilepsy undermines my efforts. I can't argue my points live. I have to write them so that I can research, spell check, have time to check my facts and not depend on my memory. I look like an idiot when I speak because I lose words. I'm not bragging, but speaking a fact here: In high school, I tested in the top 3%. In the Navy, if I had been a man, they said they would have put me in the nuclear field. I was active duty in the 80's, when women didn't do a lot of things. I was an Ocean Systems Technician, Analyst. The rate doesn't exist anymore. It's been absorbed by the OS...not sure what that stands for, but it was around when I was in. Mine was OTA. There were OTM's, who maintained the equipment, which is what I wanted to do, but once again, it was test scores. There actually weren't a lot of female OTM's, now that I think about it. At least there was a civilian equivelant with OTM's, because it was electronics, so I suppose the Navy was a bit sexist. The OTM's probably went to sea, and then women didn't go to sea.
Topamax makes me feel like the bottom 3%. But, that said, I married a mechanic. I don't think test scores or level of intelligence say anything about a person's quality of life. My Down Syndrome son has taught me so much. I don't judge a person on their level of intelligence. I have been judged on mine, as if somehow because I use big words I think I'm better than someone else. I think that's only with people who have low self esteem. People who are sure of themselves don't have a problem with me, they see that I don't judge. I'm naive, and don't realize that some people are intimidated. I don't think first. It's like some parents of Down's kids get insulted when you put the diagnosis first...I hate politically correct. It takes a lot more key strokes to type "a child with Down syndrome." If he's my kid, and I'm not insulted, get over it. If I'm used to using big words, and I married a mechanic, and have a Down syndrome kid, obviously I don't judge on intelligence.
Actually, I married my mechanic twice. I divorced him when my oldest was 3, was divorced for 4.5 years, when we remarried. So there. It's a great testimony that I might give at a later time.
The joy of Topamax...makes you ramble. So, yesterday the neurologist decided since I'm uncomfortable with the side effects, he'll change the meds....to Depacote. Yea. Just read the side effects of that med. My husband is going to love the drop in sex drive it's supposed to cause. I'll keep this blog posted on how that goes....
How this all started? Supposedly a head injury contributed when I was 12. I fell off my bike and got a mild concussion. I was also shaken by my baby sitter when I was 5. I remember it. She shook me until my teeth just about rattled in my head. I got my first migraine right after that. Mom probably didn't know it was a migraine. I remember it hurt so bad that I cried and laid down on the couch all day. I never told her that Mary shook me. I didn't know it was wrong. I had called Mary's daughter "Sugar" and she ran and told her mother I called her a stinker. Mary didn't like my mother and constantly bad-mouthed her to me. I didn't realize all the mental abuse Mary gave me until I moved in with my mother-in-law in my 40's. We bought a house together (my family of 4 owning half the house and my mother-in-law and father-in-law owning the other half). I had always known that Mary's son had sexually abused me, but not that Mary had psychologically abused me.
Then one day, my 300 lb mother-in-law called me fat in front of company at the dinner table (when I was a size 12) and threw me into post traumatic stress syndrome. The stress started me having simple partial seizures. We thought I was having heart problems. I knew I was in PTSD, because I had been in it before, with flash backs learning of other abuse that I'm not going into here. I started remembering all sorts of things about Mary, as my MIL started doing things. It took about 5 months to figure out they were seizures. They tried to say they were complex migraines, and did a 48 hour EEG to rule out seizures. The lady came and hooked up the cap, when my MIL wasn't there. She turned on the lap top to test the leads. I saw the connection and the lines were all nice and smooth waves. I was relaxed from her basically playing with my hair to hook them up. I love that. Then I told her that my MIL would be home at any time, and started talking about her. I watched my brain waves turn spikey. Her eyes got real big as she watched my screen. She looked over at me and said, just talking about your MIL did this? I want you to log in whenever she walks in the room, or whenever you talk about her. I only read about one other person who a PERSON set off seizures. They said I was having constant seizures. I said probably because I'm around HER constantly.
We fought constantly about moving out. She said we couldn't leave her in that house because she couldn't afford to live there alone. Tough. She wouldn't be nice to me or pull her weight with the housework and was trying to rework the deal on the bills. She was jealous that we made more money and didn't want us to have more stuff than her. As soon as my son turned 18 and was elligible for SSI, we moved out. We're not paying 2 mortgages because we can't sell the other house. She sabotaged our efforts to sell for a year, until I put my foot down and started using MY realtor. It's hard to battle when stress causes seizures, and she knows it.
I'm beginning to think that all my problems may be complex seizures instead of memory problems, the more I read about them. So maybe this new med route will change that. It could just be the added stress. It's the fact that my MIL is being "nice" now. That's how she controls. If she can't have her way by being mean and nasty, she'll be nice and catch you off guard. Controlling people get to me. Sooner or later, I'll learn to deal with controllers. Prayer hasn't worked, but I guess God doesn't honor those "take your vengence out on her" type prayers...
Lori Ann Smith
Let's start with the history. I'm now 46 years old. I'm a Navy veteran, mother of 2 lovely children. One is now 20 and has Down syndrome and autism. The other is extremely ADHD and gifted. I'm a breast cancer survivor, getting ready to go over 6 years in January. Both my chilren and I are Celiac Disease, meaning we can't eat wheat, oats, barley or rye. I'm married to a 20 year Navy veteran. We met when I was active duty. Twenty-two years ago I held all the statistics for the Russian submarine fleet in my head, plus a few other countries and what they tell us about our submarines. I didn't have a top secret clearance, only a secret no-foreign nationals, so what they tell us, and what is actually the case, may not be the same. Now, because of the meds I'm on, I can't remember where I put my purse, when I paid the mortgage or IF I paid the mortgage. The hard part for my family is that they have always depended on me to remember everything. My husband is constantly coming to me with questions, where is X? When is Y? And now I'm having to say, "I have no idea." He blames me because I didn't write it down. I never had to before. I used to remember every single movie (and we're talking about almost 100) that my son owned so when he wanted to buy one I could say, "no you already have that one."
I have been on Topamax since I was diagnosed about 3 years ago. I have finally gotten tired of the memory deficits. I'm tired of being in the middle of a conversation and suddenly forget a word...searching....and just have to give up and say epilepsy sucks, I can't remember.
I have recently become politically active because I love my country. It's not about party, so anyone who is a Democrat, don't shoot me. I was raised a Democrat. I know Democrats who are extremely patriotic. That's why I have not been upset with any other election in history before. It just meant my dad's party won. How could I be upset? But now the Democratic party has been hi-jacked and it has opened my eyes to see that so has the Republican party. America is infected with Progressives in both parties. But epilepsy undermines my efforts. I can't argue my points live. I have to write them so that I can research, spell check, have time to check my facts and not depend on my memory. I look like an idiot when I speak because I lose words. I'm not bragging, but speaking a fact here: In high school, I tested in the top 3%. In the Navy, if I had been a man, they said they would have put me in the nuclear field. I was active duty in the 80's, when women didn't do a lot of things. I was an Ocean Systems Technician, Analyst. The rate doesn't exist anymore. It's been absorbed by the OS...not sure what that stands for, but it was around when I was in. Mine was OTA. There were OTM's, who maintained the equipment, which is what I wanted to do, but once again, it was test scores. There actually weren't a lot of female OTM's, now that I think about it. At least there was a civilian equivelant with OTM's, because it was electronics, so I suppose the Navy was a bit sexist. The OTM's probably went to sea, and then women didn't go to sea.
Topamax makes me feel like the bottom 3%. But, that said, I married a mechanic. I don't think test scores or level of intelligence say anything about a person's quality of life. My Down Syndrome son has taught me so much. I don't judge a person on their level of intelligence. I have been judged on mine, as if somehow because I use big words I think I'm better than someone else. I think that's only with people who have low self esteem. People who are sure of themselves don't have a problem with me, they see that I don't judge. I'm naive, and don't realize that some people are intimidated. I don't think first. It's like some parents of Down's kids get insulted when you put the diagnosis first...I hate politically correct. It takes a lot more key strokes to type "a child with Down syndrome." If he's my kid, and I'm not insulted, get over it. If I'm used to using big words, and I married a mechanic, and have a Down syndrome kid, obviously I don't judge on intelligence.
Actually, I married my mechanic twice. I divorced him when my oldest was 3, was divorced for 4.5 years, when we remarried. So there. It's a great testimony that I might give at a later time.
The joy of Topamax...makes you ramble. So, yesterday the neurologist decided since I'm uncomfortable with the side effects, he'll change the meds....to Depacote. Yea. Just read the side effects of that med. My husband is going to love the drop in sex drive it's supposed to cause. I'll keep this blog posted on how that goes...
How this all started? Supposedly a head injury contributed when I was 12. I fell off my bike and got a mild concussion. I was also shaken by my baby sitter when I was 5. I remember it. She shook me until my teeth just about rattled in my head. I got my first migraine right after that. Mom probably didn't know it was a migraine. I remember it hurt so bad that I cried and laid down on the couch all day. I never told her that Mary shook me. I didn't know it was wrong. I had called Mary's daughter "Sugar" and she ran and told her mother I called her a stinker. Mary didn't like my mother and constantly bad-mouthed her to me. I didn't realize all the mental abuse Mary gave me until I moved in with my mother-in-law in my 40's. We bought a house together (my family of 4 owning half the house and my mother-in-law and father-in-law owning the other half). I had always known that Mary's son had sexually abused me, but not that Mary had psychologically abused me.
Then one day, my 300 lb mother-in-law called me fat in front of company at the dinner table (when I was a size 12) and threw me into post traumatic stress syndrome. The stress started me having simple partial seizures. We thought I was having heart problems. I knew I was in PTSD, because I had been in it before, with flash backs learning of other abuse that I'm not going into here. I started remembering all sorts of things about Mary, as my MIL started doing things. It took about 5 months to figure out they were seizures. They tried to say they were complex migraines, and did a 48 hour EEG to rule out seizures. The lady came and hooked up the cap, when my MIL wasn't there. She turned on the lap top to test the leads. I saw the connection and the lines were all nice and smooth waves. I was relaxed from her basically playing with my hair to hook them up. I love that. Then I told her that my MIL would be home at any time, and started talking about her. I watched my brain waves turn spikey. Her eyes got real big as she watched my screen. She looked over at me and said, just talking about your MIL did this? I want you to log in whenever she walks in the room, or whenever you talk about her. I only read about one other person who a PERSON set off seizures. They said I was having constant seizures. I said probably because I'm around HER constantly.
We fought constantly about moving out. She said we couldn't leave her in that house because she couldn't afford to live there alone. Tough. She wouldn't be nice to me or pull her weight with the housework and was trying to rework the deal on the bills. She was jealous that we made more money and didn't want us to have more stuff than her. As soon as my son turned 18 and was elligible for SSI, we moved out. We're not paying 2 mortgages because we can't sell the other house. She sabotaged our efforts to sell for a year, until I put my foot down and started using MY realtor. It's hard to battle when stress causes seizures, and she knows it.
I'm beginning to think that all my problems may be complex seizures instead of memory problems, the more I read about them. So maybe this new med route will change that. It could just be the added stress. It's the fact that my MIL is being "nice" now. That's how she controls. If she can't have her way by being mean and nasty, she'll be nice and catch you off guard. Controlling people get to me. Sooner or later, I'll learn to deal with controllers. Prayer hasn't worked, but I guess God doesn't honor those "take your vengence out on her" type prayers...
Lori Ann Smith
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