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Medical Forum / Diseases and Disorders / Epilepsy / October 2006possible seizure?
I've had these fits for about two and a half years. It starts that I get really sleepy and a slight headache, and unable to concentrate. I also sometimes smell blood, perfume or just something disgusting. I then after a few minutes begin to hyperventilate, convulse, cry and grind my teeth. Unfortunately I am conscious for most of this. My family refuses to have anything done, because my doctor said there is nothing wrong and won't put me on medication. the hospital gave me a blood test, ct scan and threw me out saying it could be a focal seizure but they weren't gonna take the trouble to find out for certain. After the first four fits I started getting progressively weaker and weaker, burning pain in my bones when standing, and finally laid in bed all day, so weak nad tired I couldn't care one way or the other. I finally was able to move, after being told nothing was wrong with me at least five different times and told to ignore it, will it away like "normal people do" My hands and feet tend to get really cold as well, I'm just wondering if these might be seizures or what are they? Sometimes if I brathe really fast and deep, like I sometimes do, my feet and ankles aren't there, its almost like I'm paralized, but I'm not. its really weird, and those muscles won't want to move. my facial nerves get kind fo itchy, almost, and I sometimes have difficulty walking. I usually can time these between a minutes and three hours, sometimes having three or four in one stretch. Any advice or suggestions welcome. Thak you all in advance Cordially,  SignatureJ. T. Laurie Watcher of the Seals, Flame of Tar Valon, The Amyrlin Seat > I've had these fits for about two and a half years. It starts that I get > really sleepy and a slight headache, and unable to concentrate. I also [quoted text clipped - 3 lines] > anything done, because my doctor said there is nothing wrong and won't put > me on medication. *** I posted a note earlier today that lists about 4-5 websites wrt. seizure types, and other related things. I don't think the Ep. Foundation of America has Focal Seizures as part of the 5 main types (at least in N.America). If you're conscious during all or most of the event, the only one where that's the case? is listed under Simple Partial Seizures. Many of the rest, as a szr. progresses we tend to be out of touch and only know what we do during the szr. from witnesses after it's over. A computeriized tomography scan (CT Scan) is fairly detailed down to fractions of a millimetre looking for blood clots, blockages or other internal problems that could cause the symptoms. Unless the szrs. were happening often enough to show up on e.g. an EEG where they measure electric waves while a szr. is happening, they might not have felt that type would show anything. (Many of us had tests in reverse, the EEG then depending what turns up from there, an MRI (magnetic resonance image) or a CT scan to pinpoint if there is damage causing electric signals picked up on the EEG.) > the hospital gave me a blood test, ct scan and threw me out saying it could > be a focal seizure but they weren't gonna take the trouble to find out for [quoted text clipped - 6 lines] > My hands and feet tend to get really cold as well, I'm just wondering if > these might be seizures or what are they? ** I haven't seen that listed here as a symptom of the main szr. types (since 1997), by anyone else. See top comment wrt. usually we can't tell someone what happened during stronger types of seizures some of us had. The detail listed, except for being tired after a larger seizure, don't include symptoms that many of us have had during a stronger seizure onset, unless someone else here can relate to those. (We are only getting about 5-8 posts a week at the moment here, and since it's an international site, you might get some other replies over next 2-3 days as other timezones pick up the message threads. ) / > Sometimes if I brathe really fast and deep, like I sometimes do, my feet and > ankles aren't there, its almost like I'm paralized, but I'm not. its really > weird, and those muscles won't want to move. my facial nerves get kind fo > itchy, almost, and I sometimes have difficulty walking. I usually can time > these between a minutes and three hours, sometimes having three or four in > one stretch. *** See top comment. Only 1? of the szr. types are we aware of what we're doing or have any concept of time. The stronger szr. types, we don't have the awareness to be able to time what's happening or often tell someone after what we did during them. That might be why they thought what was happening wasn't related to a seizure. G. / > Any advice or suggestions welcome. > Thak you all in advance [quoted text clipped - 4 lines] > Flame of Tar Valon, > The Amyrlin Seat thanks for your reply. I only have the concept of time when those happen is because someone tells me. I'm conscious but sometimes don't remember, they say I look out of it, feverish, almost. >> I've had these fits for about two and a half years. It starts that I get >> really sleepy and a slight headache, and unable to concentrate. I also [quoted text clipped - 72 lines] >> Flame of Tar Valon, >> The Amyrlin Seat > thanks for your reply. I only have the concept of time when those happen is > because someone tells me. I'm conscious but sometimes don't remember, they > say I look out of it, feverish, almost. What you probably want to look at are what used to be called Absence Seizures, that I think are now grouped under Simple Partial Seizures on some sites. I posted a list of websites ~10? days ago, or try http://efa.org --the U.S. main site. Usually the stronger seizure types (Grand Mal, Complex Partial) can end with loss of consciousness or the person collapses. But a Simple Partial can be a passing sensation or Aura, that can lead to loss of time, or tuning out for a period. If not controlled, and if they're frequent, they can still lead to risk of injury. Has a Doctor looked at these, or tried to prescribe anything to try control them? (I see below that they haven't. Did they suggest what is causing the symptoms you described? ). The Aura you described where I put ***s is one someone can get if the SP seizures are starting in the *Left Temporal Lobe of the brain. Right side (mine) is odour or taste of Lemon, or sourness. Those are described (I think) within that EFA site under symptoms of the various szr. types. Did the Dr. give any reasons for not doing further tests to find what would cause the symptoms you described? And if they thought it was a Focal seizure (I'm not familiar with), did they not have anything to treat it with? He has the CT results, which are either inconclusive? or they don't know how to interpret them? How hard is it to have the test results given to a second Doctor (preferably a Neurologist) ? G.// > "G." <> wrote in message > >> I've had these fits for about two and a half years. It starts that I get > >> really sleepy and a slight headache, and unable to concentrate. I also > >> sometimes smell blood, perfume or just something disgusting. I then after a ****************************************************************************** > >> few minutes begin to hyperventilate, convulse, cry and grind my teeth. > >> Unfortunately I am conscious for most of this. My family refuses to have [quoted text clipped - 58 lines] > >> Flame of Tar Valon, > >> The Amyrlin Seat the doctor was at the hospital when I went in becaue they thought it was a true seizure but I was conscious. he just simply said he didn't know. they just don't care and my family is in agreement with the doctor that its all faked and psychological. >> thanks for your reply. I only have the concept of time when those happen >> is [quoted text clipped - 102 lines] >> >> Flame of Tar Valon, >> >> The Amyrlin Seat > I've had these fits for about two and a half years. It could be important and possibly very enlightening to know what might have happened in your life around two and a half to three years ago. Did you have a serious illness with a high fever? Were you in an automobile accident? or any other type of accident involving injury? Anything else? > It starts that I get > really sleepy and a slight headache, and unable to concentrate. Periods of drowsiness like that are prime time for some seizures to begin. > I also > sometimes smell blood, perfume or just something disgusting. I then after a > few minutes begin to hyperventilate, convulse, cry and grind my teeth. Symptoms vary enormously from individual to individuAL. > Unfortunately I am conscious for most of this. What you mean by "conscious" is rather key here. I'll take the liberty of borrowing and inserting from one of your other posts here. > I only have the concept of time when those happen is > because someone tells me. I'm conscious but sometimes don't remember, they > say I look out of it, feverish, almost. Do you say "conscious" because other people tell you that you looked "conscious" as opposed to "unconscious", but that you yourself do not feel awake and aware at the time? > My family refuses to have > anything done, because my doctor said there is nothing wrong and won't put > me on medication. They will naturally listen to the doctor, but it is a mistake in this case. Your family doctor is probably an internist and appears to lack sufficient cross-training in neurological issues. Given that, he should be referring you to a specialist in the field - a neurologist. If he doesn't, then the staff at the hospital should be doing that. > the hospital gave me a blood test, ct scan and threw me out saying it could > be a focal seizure but they weren't gonna take the trouble to find out for > certain. No EEG? If you are accurately paraphrasing them, then that is totally irresponsible on their part. A "focal" seizure is another word for a "partial" seizure, the type that I and a number of others here have. Their attitude can come back to bite them and opens the door to future legal liability for failing to treat you. > After the first four fits I started getting progressively weaker and weaker, > burning pain in my bones when standing, and finally laid in bed all day, so [quoted text clipped - 9 lines] > these between a minutes and three hours, sometimes having three or four in > one stretch. I am not a doctor, but a patient who has spent a lot of time studying my own illness. I've also read a lot of other people tell their story. All of your symptoms can possibly be related in some way. Please answer the questions above to shed some more light on those aspects. > Any advice or suggestions welcome. There may be a state or federal agency that you can appeal to if you don't get the medical help you need, but let's start with these questions. . >> I've had these fits for about two and a half years. > > It could be important and possibly very enlightening to know what might > have happened in your life around two and a half to three years ago. Did > you have a serious illness with a high fever? Were you in an automobile > accident? or any other type of accident involving injury? Anything else? I've had weird periods of unexplained fevers but nothing high. I was about that next week to undergo or, more accurately, take some academic tests that were about to drive me up a wall. I was also very tired and depressed that night. >> It starts that I get really sleepy and a slight headache, and unable to >> concentrate. [quoted text clipped - 8 lines] > >> Unfortunately I am conscious for most of this. I mean that I can sort of see, my vision turns white like looking at things through a haze, I can feel but my nerves are hypersensitive. Even a gentle brush on my forehead and its almost painful> > What you mean by "conscious" is rather key here. I'll take the liberty of > borrowing and inserting from one of your other posts here. [quoted text clipped - 5 lines] > "conscious" as opposed to "unconscious", but that you yourself do not feel > awake and aware at the time? Barely awake, see above> >> My family refuses to have anything done, because my doctor said there is >> nothing wrong and won't put me on medication. [quoted text clipped - 4 lines] > referring you to a specialist in the field - a neurologist. If he doesn't, > then the staff at the hospital should be doing that. Hospital did right after the first ones started but family refused, said nothing was wrong. Doc is full, not an intern, been misdiagnosing me for eight years now, said chest pain was allergies and so on.> >> the hospital gave me a blood test, ct scan and threw me out saying it >> could be a focal seizure but they weren't gonna take the trouble to find [quoted text clipped - 5 lines] > attitude can come back to bite them and opens the door to future legal > liability for failing to treat you. I know. I told them they needed to run more tests but it wasn't worth spending my breath. they said I wasn't in charge, turned to my next of kin and said I was fine. I had another on the way out the door and the nurse just smiled at me in the wheelchair and said I was fine.> >> After the first four fits I started getting progressively weaker and >> weaker, burning pain in my bones when standing, and finally laid in bed [quoted text clipped - 20 lines] > There may be a state or federal agency that you can appeal to if you don't > get the medical help you need, but let's start with these questions. State officials do zilch. something with my insurance can't change doctors but my grandmother can the second we move. Bitch! > . >>> I've had these fits for about two and a half years. >> It could be important and possibly very enlightening to know what might >> have happened in your life around two and a half to three years ago. Did >> you have a serious illness with a high fever? Were you in an automobile >> accident? or any other type of accident involving injury? Anything else? The main reason for asking is that some people can point to a head injury, or a case of meningitis, or other medical event as being the origin of their neurological problems. That knowledge can lend some assurance to a diagnosis. In others, the cause is unknown and will remain so. The timing seems to be about right for yours to have possibly been brought on by puberty. Here is an article on that topic on a reputable website: http://www.epilepsy.com/info/family_teens_puberty.html > I've had weird periods of unexplained fevers but nothing high. I was about > that next week to undergo or, more accurately, take some academic tests that > were about to drive me up a wall. I was also very tired and depressed that > night. Stress and lack of sleep are two main seizure triggers. >>> It starts that I get really sleepy and a slight headache, and unable to >>> concentrate. [quoted text clipped - 18 lines] >> awake and aware at the time? > Barely awake, see above> The discussion above, while not conclusive, gives enough information to suggest the possibility of a neurological (epilepsy) origin for these problems. Whether it's that or hormonal or has some other cause will require time spent in a diagnosis. We're still speculating at this point. >>> My family refuses to have anything done, because my doctor said there is >>> nothing wrong and won't put me on medication. Let's see if I have this right. You hyperventilate, convulse, cry, grind your teeth, and smell blood. You've told the doctor that and he says that there is nothing wrong? What does he say? >> They will naturally listen to the doctor, but it is a mistake in this >> case. Your family doctor is probably an internist and appears to lack [quoted text clipped - 3 lines] > Hospital did right after the first ones started but family refused, said > nothing was wrong. Is there some problem with the cost and is that what's holding them back? Is your medical insurance with an HMO plan? You said the hospital ran a CT-scan. I had one awhile back and it cost $1100 just for the scan alone and that doesn't include the radiologist's fee to read and interpret the scan, much less the fee for my doctor who ordered the scan. It doesn't make sense that the hospital would expend that type of resources and now be unwilling to do anything at all. > Doc is full, not an intern, been misdiagnosing me for > eight years now, said chest pain was allergies and so on.> That terminology does get a bit confusing. A high percentage of family doctors have their specialty in "internal medicine" and are known as "internists", which is different than a doctor in training which, as you note, is an "intern". >>> the hospital gave me a blood test, ct scan and threw me out saying it >>> could be a focal seizure but they weren't gonna take the trouble to find [quoted text clipped - 8 lines] > and said I was fine. I had another on the way out the door and the nurse > just smiled at me in the wheelchair and said I was fine.> What is their diagnosis for the symptoms you have? >>> After the first four fits I started getting progressively weaker and >>> weaker, burning pain in my bones when standing, and finally laid in bed [quoted text clipped - 20 lines] > State officials do zilch. something with my insurance can't change doctors > but my grandmother can the second we move. Bitch! None of this is making any sense and there must be some other problem that we don't know about. I certainly wouldn't treat a daughter that way and I don't personally know any families that would. Doesn't your grandmother believe that you are having these seizures? You need someone to help you there locally. In alt.support.epilepsy, we can advise you as to whether your symptoms might be epilepsy, but only a trained medical professional can make a full and accurate determination by seeing you there in person. If a CT-scan has already ruled out a tumor or other malformation, then an overnight stay in the hospital with EEG and video cameras could be the next step. Can you get any help from another adult such as, perhaps, that counselor at the school? or the parents of a friend or someone else you know? Your friends who have seen you have a seizure could be witnesses to verify that you actually do have these seizures. . >>>> I've had these fits for about two and a half years. >>> It could be important and possibly very enlightening to know what might [quoted text clipped - 52 lines] > your teeth, and smell blood. You've told the doctor that and he says that > there is nothing wrong? What does he say? She says its absolutely nothing and she is not going to give me medicine because it will, will being the operative word with absolutely no proof behind it, cause me to commit suicide. >>> They will naturally listen to the doctor, but it is a mistake in this >>> case. Your family doctor is probably an internist and appears to lack [quoted text clipped - 6 lines] > Is there some problem with the cost and is that what's holding them back? > Is your medical insurance with an HMO plan? I think its HMO, but I'm not entirely sure. Its partly cost if doc doesn't refer me and partly stupidity and memories of my mom who was a good actress.> > You said the hospital ran a CT-scan. I had one awhile back and it cost > $1100 just for the scan alone and that doesn't include the radiologist's > fee to read and interpret the scan, much less the fee for my doctor who > ordered the scan. It doesn't make sense that the hospital would expend > that type of resources and now be unwilling to do anything at all. They did the ct scan because they thought I might be "bleeding into the brain" but nothing was found. I can't remember how much the bill was but it was astronomical, especially since the medics got dragged into it.> >> Doc is full, not an intern, been misdiagnosing me for eight years now, >> said chest pain was allergies and so on.> [quoted text clipped - 3 lines] > "internists", which is different than a doctor in training which, as you > note, is an "intern". Sorry about that...> >>>> the hospital gave me a blood test, ct scan and threw me out saying it >>>> could be a focal seizure but they weren't gonna take the trouble to [quoted text clipped - 10 lines] > > What is their diagnosis for the symptoms you have? Inconclusive but they don't know. They said that then sent me out the door> >>>> After the first four fits I started getting progressively weaker and >>>> weaker, burning pain in my bones when standing, and finally laid in bed [quoted text clipped - 38 lines] > friends who have seen you have a seizure could be witnesses to verify that > you actually do have these seizures. Its a pain in the rearend to have them verify because most of them are a few forks short of a fondu set. I have legally nowhere else to go because I'm here on court order from the damned divorce thinggy. The counselor is speaking to a psychologist and will see me this friday. It would be nice but Guadalupe Valley, or death valley as we call it here, is not known for its extensiveness in treatment and diagnosis. They are just a bandage and kick you out kind of hospital. > . >>>>> I've had these fits for about two and a half years. >>>> It could be important and possibly very enlightening to know what might [quoted text clipped - 49 lines] >> there is nothing wrong? What does he say? > She says its absolutely nothing Convulsing is "absolutely nothing"? Smelling blood is "absolutely nothing"? etc She says that? I'm having trouble with that. Could you please elaborate? > and she is not going to give me medicine > because it will, will being the operative word with absolutely no proof > behind it, cause me to commit suicide. I don't see how she can prescribe anything until she has diagnosed what condition she's treating. Good medicine doesn't work that way. She needs to refer you to a specialist so that the right tests are run. If the medicine being discussed is something like Paxil, then no, she shouldn't give it to you. If your condition turns out to be epilepsy, then it would be treated with drugs like Tegretol or one of the others which are used to treat epilepsy. >>>> They will naturally listen to the doctor, but it is a mistake in this >>>> case. Your family doctor is probably an internist and appears to lack [quoted text clipped - 8 lines] > refer me and partly stupidity and memories of my mom who was a good > actress.> Yes, that's right. Your primary care physician needs to make a referral to a specialist. Your problem appears to be in convincing her to do that. >> You said the hospital ran a CT-scan. I had one awhile back and it cost >> $1100 just for the scan alone and that doesn't include the radiologist's [quoted text clipped - 25 lines] >> What is their diagnosis for the symptoms you have? > Inconclusive but they don't know. They said that then sent me out the door> They shouldn't be left off the hook so easily. They need to keep on testing until they find the cause. >>>>> After the first four fits I started getting progressively weaker and >>>>> weaker, burning pain in my bones when standing, and finally laid in bed [quoted text clipped - 39 lines] > Its a pain in the rearend to have them verify because most of them are a few > forks short of a fondu set. Better than nothing. I have legally nowhere else to go because I'm > here on court order from the damned divorce thinggy. Perhaps there is some way for you to contact the court and request help with your medical situation? and perhaps I should know better than to ask, but haven't you tried to sit down with your grandmother and have a heart to heart talk about your condition and ask her to *please* help you? > The counselor is > speaking to a psychologist and will see me this friday. Here's hoping that what you've learned from the newsgroup will contribute to a productive discussion then. Good luck with the meeting! > It would be nice but Guadalupe Valley, or death valley as we call it here, > is not known for its extensiveness in treatment and diagnosis. They are just > a bandage and kick you out kind of hospital. But the metropolitan area should have the needed talent in terms of neurologists/epileptologists and other hospital facilities if that one doesn't. .
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