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Yes, I'm a fighter (at least I think I am). When I first got my fibro symptoms many years ago, I absolutely knew something was wrong, and I had to see several doctors before one of them dx'd me. I even saw a pain specialist for a while who then added a psychologist (partly to see if patients were "drug seekers"). In the course of one of our sessions, the psychologist called me a "sloth". Ok, they went right out the window, and when I think of that I still kick myself in the head for not making a big deal of it either with the psych or the doc (along with the hush-hush family, I was also taught to be very polite and "civilized" in public, especially with "authorities" like docs, so I blew that chance). I'm going to get this thing figured out, whether it takes me 100 docs over 100 years! It's just too upsetting to be in the dark, especially if there is any kind of treatment that can manage whatever's going on with me, just like my bipolar disorder and fibro are being managed. Not cured, just managed so I have a better quality of life, which what I'm sure you're all looking for.
Another question. I've woken up in the past with full-body pain that lasts 1 or 2 days. It seems more severe than my fibro, and the fibro doesn't usually affect my whole body at the same time. I had the same all-over muscle pain after the apparent seizure that sent me to the ER. When hubby spoke with the insurance agent, the agent said his wife had the same thing after a seizure, because of the muscle strain from the rigidity of her muscles during a seizure. I'm not comparing myself to that woman (I don't even know her or her dx), just wondering if that sounded familiar to anyone? Since my ER visit I've woken up (I don't mean the pain or anything else wakes me up in the middle of the night, just when I wake up in the morning) with that same pain, like I've been training for a difficult sport using every muscle in my body. I'm wondering if that may be a sign that I'm having seizures in the night (I'll mention this at my neuro appointment) or if no one's heard of this and it might be my fibro just acting up because of weather changes, sleeping funny, etc.
Anyway, thanks so much for all your help and clarification of the lingo, what's important to tell my doc, and many other things. I appreciate having you both to help me through this, even if it turns out to be something else.
BobbieView Thread

Your situation must have been scary, to have a seizure come out of nowhere and have no idea what could be causing it.
When I was in the hospital getting all my cardiac tests, the doc did tell me they could call a neuro in and have him/her test me, but it was highly probable that the results would be normal. She said that's why it's preferable to see the neuro as an outpatient in their office. I'm hoping the neuro who I've been referred to both knows what they're doing, and also had a good "bedside" manner, though asking for both of those might be a bit much, as I've found out with other doctors.
Well, I haven't had any more episodes/seizures since writing my first post here (at least, that I know of), but hubby and I are keeping track of everything that might be of the slightest interest to the doc. I do take several meds/vitamins, so of course will bring in a complete list,
I know it's not easy to dx this group of disorders, so I'm not really looking for a miracle on the first visit, just a sign that the neuro knows what he's doing and will listen and persist in trying to find an answer.
BobbieView Thread

I will mention the car accident and prior EEG to my neuro, even though I won't be able to give him many details, it'll still be important for him to know. My family sounds like yours. I'm sure it was my mom who pushed for the tests. My dad was one of those men (especially with women) who said "It's all in your head" (no pun intended). He thought most health problems, especially ones that had to do with the brain (including depression, etc.) were "made up" by doctors to make more money. Unfortunately he ended up being a victim of his own opinions, as he died of complications due to Alzheimer's disease. And my family was also hush-hush - there were things you could only talk about with family, things you definitely didn't talk about with "outsiders", and things that no one ever discussed. Maybe it was because it was a different generation. Fortunately some health conditions are more accepted now and some stigmas are (hopefully) disappearing.
I think hubby is a dear, too - he's even going to take notes for me so we won't forget things due to medical talk or a too quick appointment. Glad you like the sig. I got it from one of my FaceBook friends and it made sense to me
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Definitely get her name off all emergency contact documents. I know doctors aren't supposed to share information because of the privacy laws, but we had a situation with my dad where the doctor's staff was giving his health information to people who had no right to it. My sis and I (who were his legal guardians at the time, medical and legal proxy) visited the doc, told her what had happened, and had her "flag" his file to be sure sis and I were the only ones who could be given information, and I think we had to have a "code word" or something to prove it was one of us. I think you could sign legal documents (not sure if you have to go to court) naming you, and only you, as his medical and legal proxy, and legal guardian if needed. Again, I'm not a legal professional so I'm afraid you'll have to do some research on this. I'd throw out an idea (it may or may not be logical or do-able) that a consult with a lawyer who specializes in cases like yours might clarify your rights and your husband's rights,
I'm so sorry for your situation. You must be so worried about your husband. It's a very scary thing, especially when your MIL is such a controlling, abusive #$&*@, but for your husband's sake and your peace of mind, please follow the advice given by the above posters, ASAP.
I hate to ask, but if you can and want to, could you keep us updated? I'm wishing you success on this difficult journey, but remember that anything you do will be better for your husband (and you) than your horrible MIL has done/will do. I'm not a medical professional either, but she sounds like she could possibly be mentally ill (or just a narcissistic, controlling, nasty you-know-what. My dad was like that).
I'll be thinking about you.
BobbieView Thread

I also remember that at some time in my younger life (possibly in high school, maybe a bit later) I was taken to a neurologist (can't even remember the symptoms) and given at least one test that I can remember - electrodes all over my head, a very bright light shining in my eyes, then the light was made to flash at different intervals, then I think I was told to try to become drowsy - that's all I remember. Would that be an EEG, maybe an old-fashioned one?
As I said, I don't know if this has anything to do with my current situation, it all happened so long ago, and the only people with the information, my parents, are deceased and I have no idea what doc did the tests (he'd probably be retired after all this time).
Just asking for your thoughts, because I've read that in some cases head trauma is a possible cause of some seizure disorders, but it seems weird to me that so many years have passed between that event and now (unless I was having mild symptoms I don't remember and weren't very obvious?), and I can't figure out why my parents would have had me see a doc for tests on my brain.
Just thinking out loud. Thanks again, Candi <3
BobbieView Thread

I had no idea some of my other health conditions were co-morbid with Epilepsy. That's good to know and something I'll definitely make sure to tell the neuro. The baby monitor is also great advice, as sometimes hubby and I sleep in different rooms (the bedroom is much too hot for me since menopause, he snores terribly, etc.) so especially at those times (and when we're in the same room) a baby monitor could be very valuable.
I understand that triggers are not the "cause" of epilepsy. Having had fibro for many years, I know there are triggers for that too, and they can possibly bring on a flare, but are not the underlying cause. Thanks for that info though - it's good to remember.
You mentioned the journals (I talked to hubby last night and we're both going to keep one), which I think might be one of the most important pieces of information for the neuro.
Also, thanks for the info on the tests. I found out that I did not have an EEG at the hospital. I wasn't understanding very much of what tests they said they were going to give me, and hubby's not familiar with a lot of medical terms, so he couldn't remember exactly. You know how it is, they look at the computer and say "Ok, we're going to send you for an ABC, DEF, GHI, PET blah-blah....etc." very quickly and if you don't know to ask for the information to be repeated slowly, sometimes that's all the info you get. But he's sure they didn't mention EEG, it must have been a cardiac test because that was what all the tests were centered around. I got release papers of course, and they list some of the information but not all so I'm going to request a copy of my records from the hospital just for my own information and to have on hand to bring to my appointment. The doctor is in the same medical group as my other docs and they all have access to the computerized records from my visits with all of them and also the hospital records, but I'd still like the hospital record for myself, in case I have to go to a doc out of my group who doesn't have the information.
I'll let hubby know about not needing ER services for a short seizure. I think he called this last time because I fell off the kitchen chair (somehow bringing the chair on top of me) and my glasses made minor injuries to my face. He also got scared because of the rigidity and the trembling, and said he thought I'd stopped breathing because I didn't respond when he yelled right in my ear. I think, not having seen something like that, that he was in full-on panic mode, which I can understand. Maybe an unnecessary ER visit, but at least it got the ball rolling, because apparently in the past I refused to let him help me follow up with medical treatment.
I'm glad you emphasized that there are many seizure disorders and that individuals present differently. My dad had Alzheimer's, and the saying went, "If you've seen one person with Alzheimer's, you've only seen ONE person with Alz.". This sounds the same, very individualized, as I understand the meds to manage it are. I'll make sure to check interactions both with my doc and pharmacists, and do research myself (I've noticed some docs and pharmacists may gloss over info they don't think is "important".).
I can't tell you how much I appreciate all your information and advice, Candi. I feel as if you're my anchor in this, and though I'm sorry that anyone has to have a seizure disorder, it really helps to know I'm not alone and others will share their experience and knowledge with me.
I'm sure I'll be hanging around here a lot, if not posting, I'll be lurking, reading a lot.
Big HUGS to you too, and thank you so much
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I did get a referral to a neuro, took his first open appointment which is 12/13. I think I had an EEG done in the hospital (I don't remember parts of the first afternoon/night).
My husband tells me that he thought I was aware of him telling me about these "episodes" that I don't remember. He asked me if I wanted to go to the ER and (stubborn person that I am) he says I always told him I was ok, no ER. Obviously I don't remember that, but it sounds like something I would say.
He's going to come to the neuro appointment with me, to fill in the gaps, and I've asked him to do what you advised, to write down all he remembers about those times.
He was talking to our insurance agent and mentioned my hospitalization and the agent said it sounded like his wife's symptoms, which have been dx'd as epilepsy. The agent also mentioned that after a seizure, his wife's whole body ached (I guess due to the rigidity of the muscles?). Mine did too, but I didn't put the two together because I also have fibromyalgia and 2 failed cervical vertebrae surgeries. The agent told my husband his wife is more likely to have a siezure when she's stressed or fatigued.
I know I can't be dx'd on this board, but I've read so many of the posts and I feel you (and others) give very good information. Does any of that sound like it could possibly be accurate? I know even the docs aren't sure sometimes, I'm just so confused and frustrated by this, I guess I'm trying to gather as much info as possible.
Also - I'm bipolar/depressive/anxiety disorder and I take a fairly high dose of lamictal, among other meds. Lamictal is an anti-seizure med, isn't it? I know everyone isn't helped by a single med, just curious.
Thanks for your help, Candi.
BobbieView Thread

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