teddwebb

Shit happens every day, but it can always be wiped away…

Archive for the category “Seizures”

09 Nov 2010

The Day That Never Was…

On Tuesday, October 26th, I woke up, and I didn’t feel too hot. It was gonna be a “BAD DAY.” I’d not had a “BAD DAY” in quite some time and I wasn’t sure what to expect, but whatever it was, I knew it wouldn’t be good. I thought I could just tough it out. I told Sheri that I was OK. I argued with her all morning for her to go to work. I couldn’t even see clearly and could barely see enough to get my morning pills out, but I was stubborn and Sheri’s seen me in some pretty God-Awful ‘states’ and still be OK. I’ve been through hell and high water and through the pits of hell and the low waters that lie in the darkest corners of hell, places no one should ever have to go, but I’m tough, I’m a fighter, I can take it, bring it on, sock it to me, I’m OK. I hold my head high, put on a smile, put on the best attitude I can, try to be helpful to others. Shit! I’ve been in worse condition than the people I was helping, but I have a lot of Intestinal Fortitude and shear will.

My vision and the shaking were the worst parts. I was shaking just like I had Parkinson’s. My hands literally were travelling 2 inches in distance! Take a tape measure and stick your finger on it and slide your finger back and forth for 2 inches and you’ll see how bad I was shaking. Well, my vision was doing something very similar. The closest thing that I can think of to approximate how it looked is to look straight ahead, then close your eyes and quickly, very quickly twist/turn your head towards your right shoulder/to the right and in a downward motion, like you want to touch your chin to your shoulder when you finish turning your head, and as soon as you get your chin touched down, quickly open your eyes. That’s the closest thing to what my vision looked like that I can approximate to describe to someone to “get the same effect” and it was only a center to right downward arcing motion, except it was happening a couple times a second, way faster than you can do with your neck so you can’t get the full effect without breaking your neck! LOL!!! My eyes had ideas of their own that morning on what they wanted to do and they wanted to do the twist and get their party on that morning! Yeah, PARTY! Woo Hoo Baby!! We’re having a twitchy eyeball party! 🙂

I’d gone to see Dr. Clarke on Friday, October 22, 2010 and she’d put me on two new medications. One of these medications, we subsequently found out a couple days later, had an “in some rare instances” resulted in seizures in some people who already had seizure disorders. Well, as it turns out, Tedd is immune to every “normal” disease on the planet; Tedd is immune to and does not experience any of the “normal” side effects; Tedd is also immune to any of the secondary side effects. However, Tedd is ALWAYS susceptible to the RARE “in some rare instances” side effects in just about all medications! So unless the prescribing Doctor has read all of the detailed “Physician Prescribing Information” and “Pharmacology Information” on the medication, and has it memorized, along with the 18 other medications that I, just one of the hundreds of patients they have, and this just being one medication of hundreds that they prescribe, they are not going to notice this fact and will go ahead and prescribe it to someone who has a seizure disorder without even realizing it. The other medication was a long-shot and actually was a bit risky because it “screws up” a lot of normal people, but we are running out of options and medications to try, so we started me at the lowest dose available.

Well, everything was going pretty much status-quo – Tedd’s having some weird, strange, bizarre medical issue, he says he’s OK, he’s tough as nails, more stubborn than a mule, and has funky medical stuff all the time. And that’s what I thought too. I’m at the point now where Emergency Rooms are just about worthless to me. At the main ER that I usually get taken to, all the ER Doctors and Nurses know me when I come in because they’ve seen me so many times. Last time I was in there, one of the Doctors was holding my hand and said, “honey, we all love you around here, but you gotta stop coming to visit us!” LOL!!! I’m a very easy to get along with patient and I have them all rolling laughing, but I wouldn’t exactly say that I “enjoy” laying on a gurney in the ER for 4-8 hours every 6 weeks! Anyway, I’m allergic to all the MS Emergency Use medications that they could give me (that’s how I lost 30% of my vision – not the best way to discover that you’re allergic to corticosteroids), am already taking EVERY medication that they could possible give me, AND I’m already at the Maximum safe dosages for those medications. So really, when I go to the ER, I get fluids, CT scans that show what we already all know is there to begin with, warm blankets, some TLC, an EEG, an EKG/ECG, and they come and check on me and we tell jokes and try to make as much humor out of the situation as possible because the alternative is something I refuse to look at, and after X number of hours when I’m “stable,” they clear me to go home. So, tell me, why do I need to spend $100 for an Ambulance, $200 for the ER, $### for tests, when I could just recline on my comfy couch or lay in bed, drink the purified water that I like without getting poked one-more-time, and take the medications that I ALREADY HAVE AT HOME? So, the ONLY time now that I say, “it’s ER time,” is when normal people would be dead already. I have survived shit that kills normal people. Intestinal Fortitude. I always loved that saying, ever since boot camp; that has stuck with me and has helped me to “suck it up” and to “drive on hardcore, drive on.” My nickname when I was in the Army was, “Ranger Webb” because I was so freaking hardcore.

So, I sit down and eat my breakfast and I’m messing around on my laptop and listening to my favorite morning show and I remember the time is like 08:40 AM. The next thing I remember is “waking up” and it’s like 11:30 AM and I have no memory whatsoever of any kind of anything, no dreams, and I am one dreaming mo-fo (I dream all the damn time), but no dreams, nothing, no memory at all. The next thing I remember is Sheri is leaning over me, taking my laptop off of my lap and it’s 06:40 PM!!! I have NO MEMORY of that entire day. I was groggy and confused and dizzy and freaking out a little bit. I’ve heard of medication side effects, but this was ENTIRELY uncalled for! I lost an entire day. A full day no longer existed for me. It’s like that day never happened at all, very freaky.

Well, all day long, Sheri had not received a single update, “Status Report” email (my ‘mandatory’ check-in emails), or any random emails, nor had she seen any activity on any of my Facebook pages. That’s a Red Flag. I have NINE Facebook Accounts, all Solely devoted to Farmville, of course, because I AM a Farmville Junkie. And if I’m not farming, then I’m usually updating my Blog with some news, a medical status report, or some poem that’s been troubling my mind and I need to get it out, release it.

The problem is that Sheri hasn’t even been at her job for 3 months yet. One of the Main reasons they let Sheri go from her last firm was that she had taken 3 weeks of time off, all for me (doctor’s appointments, ER trips, picking me up at work when I had a bad seizure at my desk, etc.), and specifically stated that her work product was exemplary and got Letters of Recommendation from all the Senor Partners – it was her having to take time off for my broke-dick-gimp-ass-self – my fault. Well, she sat at her desk all day, wretched with anxiety over what to do. Does she risk taking yet another day off? She’s already had to take 3 days off for me and she’s been there less than 3 months. I said I was OK. I’m a fairly honest and good judge of my condition, but I did start new medications the night before, so that’s an unknown. What should she do? If she leaves, she probably will get outright fired from this job instead of laid off. My disability runs out in 5 months and we’re looking at another year to a year and a half of fighting the Federal Government over my SSDI. California has the highest unemployment rate in the entire country, 12% and there are Paralegals that have been out of work for over a year. Sheri got a job so fast because she’s well-known and comes Highly-Recommended from just about anyone you talk to in the OC, but if there are no jobs, there are no jobs. And there is not much you can do about that.

Now that I’m a little bit less “in a state of seize,” I’ve gone back and looked at some of Sheri’s posts. God, I feel so awful for her. You can just feel the anguish in her through her posts. Thank God that Sheri has so many Good Friends to rally to her side and provide her with comforting words of support during all of this because she has no family to talk to and support her. Sheri’s Friends are her Family. I have adopted them as my Family too and they come over on Thanksgiving and Christmas for our Celebration Dinners for all of us who don’t have anywhere to go on the holidays. It’s good to be loved by someone, to have someone care about you. Her friends provided her with great support during that long, agonizing day. There would have been nothing that she could have done if she had been home. I was OK, just unconscious. If I had gone to the ER, they would have woken me up, gave me fluids, told me to take the medication that I already have, gave me a large bill and sent me home. Um, OK. And then Sheri would get fired and we would be homeless. Nope, there was nothing Sheri could have done but sit and watch me snore! LOL!!!

When I was young and in the Army, I used to drink an ENTIRE bottle of vodka, a 750ml bottle of vodka BEFORE we would all go out to clubs and go partying. And while we were at the clubs, I would still buy drinks, just fewer drinks, but I would be drinking Everclear Kamikaze’s all night long (and that’s back when Everclear was 95% alcohol (190 proof)! I got alcohol poisoning 3 times and lived, albeit with blistered mouth, lips, nose, and agonizing pain for days, and wishing that I had died…but not learning my lesson until the 3rd time…3rd Time’s the Charm? Anyway, I NEVER blacked out or passed out, never. I eventually got tired and went to sleep, never blacked out or passed out, but I always woke up remembering everything, knowing everything that had happened. So this experience really shook me up and freaked me out, and it’s been three days now and I’m still shook up over it.

The Day That Never Was Haunts Me.

 

>ð|~@-@~|ð<

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23 Oct 2010

More About Seizures

Secondarily Generalized Seizures


Seizures of this kind start as a partial seizure—that is, they start in one limited area of the brain. The forms they take vary as much as other partial seizures. But then (sometimes so quickly that the partial seizure is hardly noticed) the seizure spreads throughout the brain, becoming “generalized.” Here’s how a couple of people with epilepsy described their secondarily generalized seizures:

The seizures start with a tingling in my right thumb. In seconds, my thumb starts jerking. Soon, my whole right hand is jerking. I have learned that by rubbing and scratching my forearm I can sometimes stop the seizure. Other times the jerking spreads up my arm. When it reaches my shoulder, I pass out and people tell me that my whole body starts to jerk.

I only get these about once every 4 to 6 weeks. Oddly enough and as strange as it sounds, I can actually “fight off” a full Grand Mal that this type of seizure ALWAYS, ALWAYS, ALWAYS turns into by remaining calm, completely relaxing and letting go of all tension I have on every muscle in my body, and practicing controlled breathing techniques. Then I concentrate on just those muscles and gently flexing and stimulating those muscle groups, very slightly and gently, and messaging and stimulating those muscle groups to get my brain to start firing neurons to break up the seizure pattern before it runs haywire. It actually works quite well. Before I stopped being afraid of the seizure, it always followed its natural progression: twitching foot, twitching leg, twitching side, twitching body -> tonic-clonic, or twitching finger, twitching hand, twitching arm, twitching body -> tonic-clonic. However, once I began to understand that the seizure wasn’t going to kill me and it was nothing to panic over, I began to try these techniques to try to control the seizure and lesson its control over me and it works…85% of the time, that is! The odd thing is that it almost always begins in my right foot or my left hand. When I first got MS, it actually was my left had that started twitching and then my left arm.

Myoclonic Seizures

What are they like? Here’s a typical story: “In the morning, I get these ‘jumps.’ My arms fly up for a second, and I often spill my coffee or drop what I’m holding. Now and then my mouth may shut for a split second. Sometimes I get a few jumps in a row. Once I’ve been up for a few hours, the jumps stop.”

How long do they last? They’re very brief jerks. Usually they don’t last more than a second or two. There can be just one, but sometimes many will occur within a short time.

Tell me more Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you’re just falling asleep. These things are normal.

In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics:

These are very similar to Simple Partial Motor Seizures except that these cause the muscles to contract quickly, causes large muscle groups to contract in tandem, causes entire limbs to jerk, and generally are limited to the first few hours after waking up in the morning. Myoclonic Seizures involve larger groups of muscles than Simple Partial Motor Seizures do and will do things like cause my ENTIRE arm to suddenly “jump up” or cause my leg to decide that it wants to take an extra step for no reason, whether I’m walking or just sitting still. Simple Partial Motor Seizures just cause a little twitching here and there. Plus, I only get Myoclonic Seizures in the morning after I wake up and they are usually gone by 11:30 or Noon. Myoclonic Seizures are all visible to other people and make me twitch like I have cerebral palsy or something, whereas Simple Partial Motor Seizures are tiny twitches that most people wouldn’t notice or can’t see because the twitching is a group of muscles inside my body.

Tonic-clonic Seizures (Grand Mal)

What are they like? Here’s a typical story from a parent’s view: “These seizures frighten me. They only last a minute or two but it seems like an eternity. I can often tell Heather’s going to have one because she acts cranky and out of sorts. It begins with an unnatural shriek. Then she falls, and every muscle seems to be activated. Her teeth clench. She’s pale, and later she turns slightly bluish. Shortly after she falls, her arms and upper body start to jerk, while her legs remain more or less stiff. This is the longest part of the seizure. Finally it stops and she falls into a deep sleep.”

How long do they last? Generally, 1 to 3 minutes. A tonic-clonic seizure that lasts longer than 5 minutes probably calls for medical help. A seizure that lasts more than 30 minutes, or three seizures without a normal period in between, indicates a dangerous condition called convulsive status epilepticus. This requires emergency treatment.

Tell me more This type is what most people think of when they hear the word “seizure.” An older term for them is “grand mal.” As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face. After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.

I haven’t had a full-blown one of these in several months, Thank God! These are the Seizures I fear most, as I expect most people who get seizures fear most as well. My first Tonic-clonic Seizure began with a Secondary Generalized Seizure in my Right Foot while I was in the kitchen one morning at the office at Word & Brown. I thought it was just a nervous jerk or some stupid MS thing that would stop in a minute so I was ignoring it and making my coffee. Then my leg started to jerk. I went on making my coffee. Someone else came in and saw my leg jerking around. I laughed and said, “isn’t that freakin hilarious? My leg’s all twitching and flopping around like a fish! Ha! Ha! Ha!” Then it moved up into my hip and began to tighten and become extremely painful and I asked for a chair to sit in. I said I’d be fine, that I just needed to sit for a few minutes and that it would pass. But then it worked its way up my side to my stomach and started causing my guts and stomach to start twitching and the pain in my leg was becoming excruciating and by this time my leg was bouncing around violently. I gave in and said, you better go get Norm. I need Norm. GO FUCKING GET NORM NOW. HELP! Norm came in. He saw me in that chair. I felt unbearable pain by this time and told him to call 911 or he told me he was calling 911. I don’t know what he said to me, but it was calming and that was the last thing I remember. Norm said my head shot back and I got stiff as a board and started spewing foam like the Exorcist and then started flopping like a fish. I don’t remember any of that. The only thing I remember is waking up on a gurney in the ER at St Joe’s all confused, not knowing where I was, who I was, and what was going on! That was my inauguration into the Realm of Seizures. It’s embarrassing, but I was folding panties when I had my last one a couple months ago. LOL!!! (Hey! I do ALL the freakin laundry so piss off you wankers!)

>ð|~@-@~|ð<

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18 Oct 2010

About Seizures…

Simple Partial Seizure, Category Motor seizures, or simply a Simple Partial Motor Seizure


These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or automatic hand movements. The person may or may not be aware of these movements.

I have these constantly. They are so irritating and scary at the same time. They are scary because they are the precursor to a Grand Mal! Whenever I have a Grand Mal Seizure, it ALWAYS, ALWAYS starts out with a Simple Partial Motor Seizure. It’s irritating because some days I twitch and jerk around so bad all day long and my eyes twitch too so I can’t see well or read for shit and performing the most basic tasks, like wiping my ass becomes a freaking chore instead of a simple quick “thing you just do.” And try cooking and measuring out spices when you are randomly twitching and jerking every few seconds or at random intervals every minute or two! Mmmmmm nothing like SUPER GARLIC Spaghetti – Twitchy Tedd Style :o)

Complex Partial Seizures


Here’s a typical story: “Harold’s spells begin with a warning; he says he’s going to have a seizure and usually sits down. If I ask him how he feels, he just says ‘I feel it.’ Then he makes a funny face, a mixture of surprise and distress. During the seizure he may look at me when I call his name but he never answers. He just stares and makes odd mouth movements, as if he’s tasting something. Sometimes he’ll grab the arm of the chair and squeeze it. He may also pull at his shirt as though he’s picking lint off of it. After a few minutes, when he’s coming out of it, he asks a lot of questions. He never remembers his ‘warning’ or these questions. The seizures make him tired; if he has two in the same day, he often goes to sleep after the second one.”


They usually last between 30 seconds and 2 minutes. Afterward, the person may be tired or confused for about 15 minutes and may not be fully normal for hours.


These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person’s eyes are open and they may make movements that seem to have a purpose, in reality “nobody’s home.” If the symptoms are subtle, other people may think the person is just daydreaming.


Some of these seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure. Also called an aura, this warning seizure often includes an odd feeling in the stomach

I call these “Stomach Episodes” or “Stomach Zones” and when they start out, they are very, VERY uncomfortable and painful. The onset, the “warning” can last anywhere from a couple minutes to half an hour. When the seizure strikes, I turn into a “mind zombie,” a “drooling idiot” for a few minutes. When I return to normal, I’m always real, real tired and confused and I can hardly walk or perform basic functions for half an hour to a couple hours afterwards. I’m usually wiped out tired for the rest of that day and I’m not normal the following day or two and am tired for a couple days afterwards also. The worst part about these seizures is that they seem to be the most severe, or strongest/largest seizures because they are also almost always, without question, accompanied by a TIA (Transient Ischemic Attack or “mini-stroke”). Fortunately, I’ve only had TIA’s, which your brain can heal from unlike a stroke which your brain usually can’t fully heal from. So, I’ll have a droopy eye and a droopy mouth for a couple weeks while my brain is healing that blood vessel and the affected brain cells and nerves and slowly my eye and mouth return to normal…well mostly. I’ve had so many of them that I have a partial, permanent, oh so slight droopiness on my right side. Sheri may be able to see it, but I’d be surprised if she can. I can feel it in my muscles and the surrounding muscles. I just can’t relax my face and have those muscles automatically “pull” the corner of my eye and the corner of my mouth where they are supposed to be, so now they fucking droop god damn it. I’m 30-something (ask Sheri, she knows how old I am) and I’ve had so many “strokes” that I have a droopy fucking face! OK, enough whining…


>ð|~@-@~|ð<

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29 Sep 2010

Fun with Seizures

Right now, I can feel a large “chunk” of the left hemisphere of my brain. It feels like hot steel knives, followed by cold steel knives are slicing away at that chunk of my brain. The waves come every few seconds and I don’t know if it will be a hot knife or a cold knife. At the same time, I feel as if that entire portion of my brain is being imploded itself. I can feel the distinct lines where the knife slices are cutting through my brain, and at the same time, that entire fist-sized chunk of my brain is being imploded, painfully imploded, at the same time. Lots of fun…good times!

I can feel the seizure coming on. It begins with little, mini-seizures, like warm, numbing water being poured out from my head and quickly flowing down through and throughout my entire body, acting like Novocain, numbing the body, and mind. These waves become stronger and stronger and with each one, I lose more and more a grasp on coherent thought as my cognitive abilities are “washed away” with each mind-numbing, cleansing wave. Then I start twitching. Usually a group of muscles in an arm or leg, or both arms, or both legs, or sometimes, just every muscle in my body just starts twitching. And the jerking begins, just random, rapid, painful contractions of various muscle groups.

These used to freak me out. They used to freak Sheri out even worse! I try to remain calm now and not panic. That doesn’t actually stop the seizure from coming on, but it does lessen the severity of the seizure because of the fact that I am not panicking, not flooding my system with adrenaline and other “flight or fight” hormones, while my body is already in distress from the seizure.

Not all my seizures are massive seizures and I don’t have full-blown grand mal seizures but a few times a year. However, I do have petite mal and partial seizures all the time and they are very tiring. Afterwards, I usually am very disoriented, have difficulty walking, or thinking clearly, or speaking, and for hours and often for a day or two afterwards, my muscles are very, very sore. Sometimes, if the seizure is mild, I bounce back rather quickly. On the other hand, if the seizure is also accompanied by a TIA, and I end up paralyzed (usually my left leg) for 15-30 minutes afterwards with a droopy face and sagging eye, it can take several days to a week or two for me to fully recover.

Well, it’s starting to escalate to that point where I just have to close my eyes and sit and wait it out now, and just enjoy all this fun time with seizures!

>ð|~@-@~|ð<

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