Well, I'm all hooked up to the 24 hr. EEG, love the look! I didn't see the doc at the last appt., saw his Nurse Practitioner, who I liked just as much as the doc and more importantly, she seems to be quite knowledgeable (as she should be). She ordered blood tests to check my level of lamictal and also Vit. D.
The blood work came back normal, but it was funny, she recommended I take 240 IU of D3, and I'm already taking 3600 IU of D3 (along with my fosomax and calcium supplements - 1600 per day). Thanks for the info that fosomax may be related to seizures. I'm also on Wellbutrin, as I think I said earlier, which is the only anti-depressant that's ever worked for me, and the doc and my psych both said it can lower the seizure thresh-hold. Not good for me. If I had to go off it, I'm very afraid the depression will kick in again, and that's not a pretty picture. My psych says if I have to stop the Wellbutrin, there's a "brand new" med. I've gone through the "brand new" med thing a few times before. I don't like it. Every one has given me such bad side effects I have to stop taking it, plus none of them worked anyway. Brand new meds don't seem to me to have enough time used by the general population to be sure they're all right, unlike some of the older meds, but I know sometimes new meds have to be used; just makes me feel like a guinea pig!
So far I've had feelings that almost feel like an aura. The first several seizures I had, I didn't know anything about auras, but now I'm trying to figure out if I have any warning signs. I seem to get weak, trembly, headachy and dizzy, not a "regular" dizzy, I can't explain it, more like a dizziness inside my head, like my brain is sloshing around. That's happened the last couple of times.
I've continued keeping a journal for the doc, what happens, what I eat, how I'm sleeping, what my meds are and when I take them, anything out of the ordinary that me or Don notice. And of course (I know you know this) with the 24 hour EEG I have to keep track every hour or so on the event log, or log if something happens before or after an hour.
Of course, I can't drive until this is figured out (says the doc) which makes perfect sense, or do anything that could be dangerous if I have an "episode" (weird, guess a bit of denial, but I still don't want to call them seizures, so they're always "events", "episodes" or "fits". I guess I'll get used to it.) I guess part of that is that it makes me feel weak, and on top of the bipolar disorder, fibro and constant neck pain, is just one more thing that I feel keeps me from a normal life.
Sorry, your eyes are probably dry after reading this, it seems I always write novels. I appreciate all your info and patience. Hope you're doing well. Do I remember you saying that you were getting the 24 hour EEG too? If my memory is correct, please fill me in on how that turned out, ok?
Otherwise, keep smilin' and we'll keep walking down the path.
Thanks, as always, for your helpful info, Candi. I swear, you must monitor here 24 hours a day! I'm sure your attention is extremely helpful, especially for noobs like me who have no idea what's going on.
Re vit. D: I'm on about 3500 IU a day, some by a vit. D supplement, some in my regular vit/mineral (women over 50) I take every day. My psychiatrist and my gynie suggested this - the psych because (just like you said, and especially at this time of year, which is my worst) it's been found to be helpful to many people with depression problems. Gynie said it would help absorption of calcium, which I knew. I'm on a calcium D (more vit. D) every day too, along with the Fosamax.
I'm so sorry that your little Great Niece has this disorder. It must be extremely hard to watch such a little baby suffer with something like this. Shame on that nurse for not recognizing what the baby was going through. Aren't they supposed to suction the baby to rid her of excess amniotic fluid routinely? I'm not down on nurses, I've been helped by so many dedicated nurses in my life, many of them seem more knowledgeable than docs, many certainly have a better bedside manner, and I do respect them for their calling. I guess, just like every other profession, there are some who need more education or experience or passion for their careers. Glad the liquid pheno is helping.
Portable is still a couple weeks away, and I'll update you. Thanks for the advice about bringing a head-covering, I never thought about that! Appreciate the gel-removal advice, too!
Here's something I never thought about until now, and for that reason haven't told the doc yet, though I will next time I see him. Years ago, when my bipolar disorder was very out of control and no meds seemed to work, I received several treatments of ECT. Hubby said that after each session, I'd wake up in the recovery area and ask the exact same question, "where am I? Why am I in the hospital, was there an accident? What's happening to me?. I know it left me with short-term memory deficits for quite a while, and sometimes I wonder if my little memory slips now are the result of age or a leftover from the ECT. Have you ever heard of ECT affecting seizure activity many years afterward?
I'm so sorry I'm using you like an encyclopedia, but you have a very comforting way of helping, and I feel that you really "know your stuff" (and sorry you had to learn about it first--hand). This must take a lot of your time, and I appreciate every minute of it.\
Well, it's time for a break from the computer, which always sets my neck off after a while, and that's when the cervicogenic headaches start.
I'll talk to you soon, Candi
PS: Love all your smilies! I love to use them myself, so we have more than seizures in common! View Thread
Candi, sorry for the late reply. My EEG results were normal (which everyone tells me is quite common). Still on 200 mg lamictal in a.m., 200 mg in evening. I've had (I think) a couple of seizures or seizure-like "episodes" while sleeping - once I ended up on the floor without any memory of falling or hitting the floor, and I had the idea I'd been on the floor for at least a few minutes. Also had one quick one where I went rigid/shaking while I was going upstairs and caught my foot on the last step and fell up onto the kitchen floor, and another one where the physical symptoms shaking/rigidity lasted for about an hour, but I was totally lucid and was able to talk to my husband.
Just in to see the neuro the other day. I saw his Nurse Practitioner (I like her very much) and she said from my descriptions I might be having focal seizures. I may have to go off Wellbutrin which scares me, because that's the only anti-depressant which works for me, and I've had trials on pretty much every other one.
Before making that decision, though, or upping the lamictal, I'm going to do a 24 hour EEG test (I'm sure all of you know what that is since I'm the newbie here). So I'll get that all rigged up in a couple of weeks, still keep my log, and also have blood work to check my lamictal level, and the NP also said some of the meds I'm taking can pull calcium from my bones (I'm already at the borderline of osteoporosis and take Fosomax) so she's concerned about my vit. D level. I really don't know if that has anything to do with seizures, but I think they're just checking everything they notice, whether it has anything to do with my main concern or not - they seem very competent about me as a patient, instead of me as a file #, which I appreciate so much.
So that's the state of things right now. Our Christmas was great, my son and his wife had their 2nd wedding on Dec. 30 (he's in the Navy and they had their 1st wedding at the courthouse, so they wanted a "real" wedding for family and friends. It was beautiful).
It's a bit late, but I hope you had a great Holiday season and that you're doing well and getting through winter (I can't wait for warmer weather!).
fototivity, this will be my first time trying to answer someone's question - usually I'm the one who's looking for answers.
First off, we know everyone's different, has different symptoms for the same illness, the symptoms may present in different ways, and there are tons of treatments.
I've had many, many anxiety attacks over the last 15-20 years (keep in mind we're talking about my symptoms only). My heart races, my palms get sweaty first, then the rest of me, I sometimes tremble, I hyperventilate so that I feel like I'm not getting any air in my lungs (breathing into a paper bag does help). I get lightheaded, a feeling of doom comes over me, I feel like I'm going to pass out...I think you get the picture.
I'm in the process of seeing a neurologist to determine if I have seizures and what kind they may be. One thing my neuro asked me is if I'd ever wet myself when I was having an "episode" (as we call them at home). I haven't (yet) but he said that could be an important diagnostic fact - given that all people are different.
I agree with Candi, especially since these symptoms seem to be pretty severe and may be very bothersome. I think seeing a neuroor an Epileptologist would be a good place to start. Even if you saw your primary physician (if you think he's a good doctor) he/she might be able to direct you to the appropriate specialist.
I hope you find some answers so your life isn't constantly disrupted like it has been.
Candi, thanks for asklng. Going to make this kinda short, it's late and has been a very long day. The initial meeting with the neuro went well. Don and I like him, he wasn't in a rush like a lot of docs are, he took a detailed history and several times asked if we had any questions, he was a good listener - all the things that make me trust a doc - of course this was the first visit. He said it definitely sounded like some sort of seizure disorder, that I shouldn't drive, etc., upped my bipolar mood stabilizer which happens to be Lamictal.
I had the EEG today, and because of other health problems it was a hard test just laying there for that long. A couple times when the lights were flashed I felt very weird, twitchy and like "my brain was leaving my body". Don't know what that means, guess I'll hear from the neuro.
So that's where we are now, I'm sure you've experienced it and heard about it a million times. I'm anxious to see what the results are, though they may not show anything, like you've said before. Might have had what the neuro calls a "quiet" seizure while sleeping a few nights ago, and had a short one, not severe, 3 days ago, so we're keeping track.
If I don't talk to you beforehand, I hope you have very Happy Holidays and thanks for all your help. View Thread
Something just came back to me! A few years ago I fell up (yes,up, not down the stairs) and had a mild concussion and stitches for the gash, I've also fallen down the stairs and hit my head pretty hard (and broke my wrist). So I do have a history of head injuries, I guess.
Will tell neuro all of this at my appointment tomorrow (Thursday).
susannahstuckey, I've been told by a trusted family doctor, a doctor in the hospital, and many hours of research of my own that sometimes EEGs and other seizure tests may have to be repeated to get an accurate results. My doctor told me that I shouldn't self-diagnose myself because of the anxiety it could cause. I know it's expensive, but sometimes people have to have several tests to come up with a dx. The auras are not normal, and you've had one gran mal siezure. My doctor said to me "I wouldn't drive until you are diagnosed". My doc also told me that if the brain isn't mis-firing it could be hard to dx. I'm not a doctor, and I'm just new to this, so maybe take it with a grain of salt, Keep us up on your progress, and I hope you get the help you need,
Thanks again, Candi! I was wondering about that total body pain, and just thought it was weird that the agent's wife (who has been dx'd with some form of epilepsy - you know some men, they don't get the details - had that same feeling as I did, Don (I hate to keep calling him "my husband) said that when I'm "zoned out" but just sitting, not falling off chairs, I shake all over, but when he touches me I feel like I'm clenching all my muscles at the same time (if that makes sense).
That's what happened in the "chair falling" thing when Don insisted I go to the ER (of which I have only "fuzzy" memories, if that makes sense). He said I was shaking severely, all over my body, but I felt solid as a rock. I sort of remember when the police and EMTs got there, they were asking me if I needed help to get on the stretcher, and in my mind, I was thinking NO (the stubborn part of me) but my body was saying yes, because I wasn't able to move any part of it. Don said I was still shaking at that time and even when I was lucid enough to tell the EMTs I DIDN'T need to go to the ER (go figure) they told me that any injury that involves a loss of conscience means an automatic ER visit which I can understand now.
Oh well, I see the neuro Thursday and I'm sure there'll be a wait before any tests, so "it is what it is". Don's being extra careful of me, almost treating me like an invalid, and rushes to me at the slightest of sounds, "Bobbie, are you ok?". It's very nice when he does it, and I don't want him to feel bad, but after a while...it gets overwhelming.
I'll talk to you all when I see the neuro Thursdayk probably before, and I hope you've all had a wonderful weekend and the coming week is nice for you, too,
Thanks again, Candi. I know none of us are docs, we're all in this journey together, but having others to "walk" with makes the journey easier for me. You've answered so many questions I've asked and given me so much information on my questions, I can't tell you how appreciative I am.
Now I have a whole list of questions/information for my neuro visit next week that I wouldn't have had if you and Angie hadn't helped me out.
Thanks so much for your help and for just being here and welcoming me. I'll let you know the results of my visit next week. View Thread
Wish there was an "edit" function on the replies, I hate to make a new reply.
I forgot to mention that all the times I got the severe body pains, I also have a headache that can last for 3-4 days. They're not just annoying headaches, they're bad enough that NSAIDs and my fibro meds don't help, and sometimes I just have to lay down and hope I doze off (they interfere with my sleep, too - which doesn't need any more inteference!).
Thanks, ladies. It's a comfort to know you're there.