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Medical Forum / Diseases and Disorders / Epilepsy / December 2007idiot doctor, round 2...
Went back to the doctor a few weeks ago. Acually just a little more than a month ago. I had had to start taking the topamax again because I'd run out of my gabapentin and she did not want to get it refilled. Well, he said that he refuses to put the gabapentin at 1200 miligrams a day because "you're sixteen." Now, that does not make any difference. at the normal dosage of 900mg for me, I have had upwards of 17 seizures in a six-seven hour period. Now on top of that the seizures are becoming more and more long. my longest has been 15 hours, and no I have nothing to stop them and unfortunately cannot get medical treatment. I eventually ran out of the topamax and they simply said that I don't need it and that strictly speaking I don't need the gabapentin, since it was originally prescribed for my legs but does a decent job of controlling the seizures--when it's at the right dose, that is. I've tried to get it throug hthe doctor's head that this is what is in my best interest, and even showed him copies of the other doctor's records. And he refuses. He'll happily keep me in supply of vicodin and prevacid but gabapentin it's his way or the highway. On top of that my seizures have a new symptom. I go into this deeply unconscious state, I can still breathe but not really respond, for up to three-four days at a time. But of course I have t put up a front thanks to my family. Most of my brain goes out and the little bit that's left is concentrating on acting normally for their benefit. On top of that ever since I've started having these again I have not been able to concentrate on anything. feels like half of my brain is missing. So, here's my question. Any suggestions? Sigh.  SignatureJ. T. Laurie Watcher of the Seals, Flame of Tar Valon, The Amyrlin Seat Forgive them gracious Goddess, for they care not what they do. > Went back to the doctor a few weeks ago. Acually just a little more than a > month ago. I had had to start taking the topamax again because I'd run out [quoted text clipped - 29 lines] > The Amyrlin Seat > Forgive them gracious Goddess, for they care not what they do. Is he a Neurologist? and was the 'older' Dr. one? Some regular Doctors might be hesitant to prescribe an Anti Ep drug if they're not trained in that. I just wondered if that was their reason (i.e. they don't know enough to be prescribing it). Can you still contact the 'old Doctor', or did they move/ retire? Some of the meds. have a Maximum recommended dose, and that can be modified by our Age, Body weight, Metabolism rate, and (importantly) extent of seizures and where they appear to start up. It seems strange (I guess you know already) to let an Anti Ep. med run out, unless they don't think you're having seizures that can be treated with them. If they don't they should at least explain why you have the symptoms you describe above, and how they can be treated so they're not so disruptive to your concentration? and functioning. (Several of the anti ep meds can produce a 'recoil effect' (my term) from prompt withdrawal whether someone is having seizures or not. They don't usually just let them run out.) When I changed from Dilantin 'up' to Tegretol, and later added a second med. the phaseover was done over a period of 4+ weeks as one was slowly reduced and the 2nd increased to my target dose. The same was done when we reduced above Tegretol and added a 2nd pill with it. That took 6+ weeks before I went for checkup and blood work. G./ he just said that he won't do it. he's a family physician. I requested a competent neurologist. my grandmother jumped in and said not no but hell no. So I'm back to square f.cking 1 again. I know that most competent people on this planet will at least listen to what the other doctors have to say. and the other doc dumped me off his lap and basically said that that was his recommendation and if they wouldn't follow it, oh f.cking well. I've been getting the runaround from both the neurologist and the neurosurgeon about both the dosage and types of medication I should be on for the various pains and seizures so on and so forth both caused and not caused by my accident. the neursurgeon absofuckinglutely refuses to call me back even when I request it specifically. The neurologist I complained about back in december? I'm not the only one he does that to. A paraprofessional at my school said he only treats migraines. anrueo who does only migraines? if that's his specialty then he's an idiot. He claimed that topamax is hands-down a better antiep drug than gabapentin. for some people? maybe. for me? no. Both in combination work fine if one is at the wrong dosage. Topamax just in general makes me feel like shite. For the ast few months it seems like the right side of my brain is missing and my left eye won't readily open. And yes I've tried to get that point across. Do they listen? f.ck no. I had a seizure just the other day in choir. I had to lie to the teacher and say I was just extremely cold. I've had for the last week people left right and centre telling me I look absolutely sick. They don't notice because they don't want to. Yes i do have cps on them and will be out of here soon. >> Went back to the doctor a few weeks ago. Acually just a little more than >> a [quoted text clipped - 61 lines] > reduced above Tegretol and added a 2nd pill with it. That took 6+ > weeks before I went for checkup and blood work. G./ > > Went back to the doctor a few weeks ago. Acually just a little more than a > > month ago. I had had to start taking the topamax again because I'd run out [quoted text clipped - 47 lines] > term) from prompt withdrawal whether someone is having seizures or > not. They don't usually just let them run out.) G./ Re your Oct 21 reply --> How hard is it, where you are, to get a New Neuro (i.e. do you need a referral from your Family Dr. or can you get one via a Local Ep. Foundation Chapter? (You don't usually have to be a member of the local chapter-- listings are in phone book or by area within http://efa.org ). If you found one there (a Neuro), they could give you forms to transfer your Records and Med. History on to them that the olde Dr. is required to forward. With respect to them not wanting to 'get involved', so far as *I know they're the last Dr. who treated you and they *are involved. If you have a Recoil seizure or an accident and are injured, and it can be shown to be from prompt withdrawal (by the Dr.) of your medications, the AMA or ??? get involved with respect to the Medical Licence the dr. has on his wall. He'd have to find some wallpaper to cover the empty spot. ?? G./ a friend of mine pulled a stunt and had me sent to the hospital via ambulance. bastards did absofuckinglutely no tests whatsoever and declaired that there are no seizures and what I had was a cry for attention. No tests, no labs. Nothing. a ninety-second physical duringmost of which they had to force me to move I was so limp and out of it. and they recommended a psych eval. they can take that eval and shove it. >> > Went back to the doctor a few weeks ago. Acually just a little more >> > than a [quoted text clipped - 77 lines] > Licence the dr. has on his wall. He'd have to find some wallpaper to > cover the empty spot. ?? G./ > a friend of mine pulled a stunt and had me sent to the hospital via > ambulance. bastards did absofuckinglutely no tests whatsoever and declaired [quoted text clipped - 85 lines] > > - Show quoted text - Hi my name is Jackie and I'm new to the group. It sounds like you have been having a really rough time. When did your seizures start? Did you have any head trauma or did they start for unknown reasons? I don't know your history but I saw you mentioned a neurosurgeon so I'm guessing there was some kind of brain injury if so what areas were affected? Do you have grand mal seizures? I know they have all kinds of new terms like partial complex and generalized but I never learned them. At one point it sounded like you were standing on the outside and saying what you think would have been a normal response. This is what my seizures were like when I was younger. Only my best friend could tell if I was having one because some times I would flush and get a different look in my eyes. I know I asked a bunch of questions but sometimes you can't give any advice without a little history. I look forward to hearing from you. Hang in there. Jackie >> a friend of mine pulled a stunt and had me sent to the hospital via >> ambulance. bastards did absofuckinglutely no tests whatsoever and declaired >> that there are no seizures and what I had was a cry for attention. No tests, >> no labs. Nothing. a ninety-second physical duringmost of which they had to >> force me to move I was so limp and out of it. and they recommended a psych >> eval. they can take that eval and shove it."G." <gar...@rogers.com> wrote in message Usually, when a patient has a seizure or a series of same, they do not have recollection of what went on during the episode. Often they have memory loss from even before the seizure, and for a time after. The fact that you claim to recall what went on is interesting in light of the above. Best, Bob >>> a friend of mine pulled a stunt and had me sent to the hospital via >>> ambulance. bastards did absofuckinglutely no tests whatsoever and [quoted text clipped - 6 lines] >>> psych >>> eval. they can take that eval and shove it. > Usually, when a patient has a seizure or a series of same, they do not > have recollection of what went on during the episode. Often they have > memory loss from even before the seizure, and for a time after. > > The fact that you claim to recall what went on is interesting in light > of the above. I have not been sure what to say about the above (you are a doctor, and what you wrote agreed with what I had read elsewhere), but I have now twice been diagnosed with having had complex partial seizures (both times they had occurred in the presence of the diagnosing doctors/neuroligists [I have them often, sometimes a few times a day]). I made it clear that in all cases I am aware of my surroundings during events, (though not "normally"), and that I remember things that took place during the events. Looking into it further (and asking my main neurologist about this), apparently what happens to me can be described as "altered consciousness" rather than loss of consciousness or memories during seizures, and the seizure type does not necessarily require that the classic description for it fit exactly. I have been seeking an answer for several years about this and other neurological issues I have, but it has been hard to find agreement on almost anything, leaving me in an uncomfortable "Limbo"... --DR >they had occurred in the presence of the diagnosing doctors/neuroligists [I >have them often, sometimes a few times a day]) If the episodes are occurring every day or thereabouts, then why don't you ask your neurologist to set up an ambulatory EEG (where electrodes and a recording device and connected to you and allowed to monitor you for 24-48 hours continuously)? That way, any seizure activity will be picked up. Best, Bob (It might be nice to avoid referring to doctors as "idiots") Robert A. Fink, M. D. Neurological Surgery 2500 Milvia Street Suite 222 Berkeley, CA 94704-2636 USA 510-849-2555 ********************************** NOTE: The material above is not "medical advice". Medical advice can only be given after an in-person contact between doctor and patient. ********************************** [...] >>they had occurred in the presence of the diagnosing doctors/neurologists >>[I have them often, sometimes a few times a day]) [...] > If the episodes are occurring every day or thereabouts, then why don't > you ask your neurologist to set up an ambulatory EEG (where electrodes [quoted text clipped - 3 lines] > > Bob I have had one (for four continuous days) by one of the diagnosing doctors who made the complex partial finding, but he did that more from observation than the EEG results, which were (as I understand it), somewhat abnormal but not classically epileptic in nature (but I have heard of epilepsy not showing on EEGs, often for many years), which is why *I* still question the diagnosis even with the second similar finding (after an episode that had some additional autonomic events observed [flushing, rashes, overheating, profuse sweating]). And, I know what you will write next [;-], but also in the mix are findings of some irregularities in my MRIs (not universally agreed on, though...) and previous to this were years of untreated sleep apnea, with a blood O2 sat. level reaching 62% and 58 arousals per hour (I've been treating it with CPAP gear for the last four years, and heart damage and problems have diminished, but have not entirely gone away). I don't entirely dismiss "conversion disorder" (also known by a plethora of other more or less friendly terms, since its definition and applications keep changing, and which a neurologist friend calls, "the last refuge of the diagnostically bankrupt" - and which apparently in the end is rarely a valid long term diagnosis, let alone a useful short term one), but I don't fit most of its assumed attributes. I guess the question comes down to whether or not EEG indications *must* be positive for epilepsy to be diagnosed. I have heard it both ways, though a positive EEG for it certainly does indicate epilepsy (but does the reverse really eliminate it...?). Another question is whether there are other seizure types that would account for the events. "Partial syncope" was mentioned at the ER, but dismissed before CPE was diagnosed in consultation with a neurologist I had formerly seen (and what about varying blood sugar levels, though I don't show abnormal levels in usual blood tests?). I had thought for a while that cataplexy could account for at least some of what I experience, but the local sleep clinic has not picked up on that, and I don't show the indications for classical narcolepsy of which cataplexy is a part (but cataplexy otherwise fits well...). Ah, well... > (It might be nice to avoid referring to doctors as "idiots") I strongly agree (uh, most of the time...;-), but that reference was from the OP, not me... From all of this, I have again learned that doctors are human, with differing approaches, knowledge levels, and abilities - but I always try to give them respect. Thanks for responding. --DR [I will try again, with shorter lines that may be more easily read...] [...] >>they had occurred in the presence of the diagnosing >>doctors/neurologists [I have them often, sometimes a >>few times a day]) [...] > If the episodes are occurring every day or thereabouts, then why don't > you ask your neurologist to set up an ambulatory EEG (where electrodes [quoted text clipped - 3 lines] > > Bob I have had one (for four continuous days) by one of the diagnosing doctors who made the complex partial finding, but he did that more from observation than the EEG results, which were (as I understand it), somewhat abnormal but not classically epileptic in nature (but I have heard of epilepsy not showing on EEGs, often for many years), which is why *I* still question the diagnosis even with the second similar finding (after an episode that had some additional autonomic events observed [flushing, rashes, overheating, profuse sweating]). And, I know what you will write next [;-], but also in the mix are findings of some irregularities in my MRIs (not universally agreed on, though...) and previous to this were years of untreated sleep apnea, with a blood O2 sat. level reaching 62% and 58 arousals per hour (I've been treating it with CPAP gear for the last four years, and heart damage and problems have diminished, but have not entirely gone away). I don't entirely dismiss "conversion disorder" (also known by a plethora of other more or less friendly terms, since its definition and applications keep changing, and which a neurologist friend calls, "the last refuge of the diagnostically bankrupt" - and which apparently in the end is rarely a valid long term diagnosis, let alone a useful short term one), but I don't fit most of its assumed attributes. I guess the question comes down to whether or not EEG indications *must* be positive for epilepsy to be diagnosed. I have heard it both ways, though a positive EEG for it certainly does indicate epilepsy (but does the reverse really eliminate it...?). Another question is whether there are other seizure types that would account for the events. "Partial syncope" was mentioned at the ER, but dismissed before CPE was diagnosed in consultation with a neurologist I had formerly seen (and what about varying blood sugar levels, though I don't show abnormal levels in usual blood tests?). I had thought for a while that cataplexy could account for at least some of what I experience, but the local sleep clinic has not picked up on that, and I don't show the indications for classical narcolepsy of which cataplexy is a part (but cataplexy otherwise fits well...). Ah, well... > (It might be nice to avoid referring to doctors as "idiots") I strongly agree (uh, most of the time...;-), but that reference was from the OP, not me... From all of this, I have again learned that doctors are human, with differing approaches, knowledge levels, and abilities - but I always try to give them respect. Thanks for responding. --DR > [I will try again, with shorter lines that may be more easily read...] > [quoted text clipped - 61 lines] > > --DR Hi, if you can find an epilepsy center that offers a variety of approaches...diet/nutrition, surgery, neurotherapy, bio-feedback, and others. Our daughter had seizures not controlled by medicine so we had to look elsewhere. Surgery may not have been an option for us because a "focus" could not be found unless they performed a more intrusive option which we did not want to do at the time. We found some success with diet/nutrition by finding some of her seizure food triggers and just generally improving her nutrition. However, dramatic success came with neurotherapy from Dr Walker at the Neurotherapy Center of Dallas. Our daughter had complex partial seizures and we are going on about 11 months without us observing one. She still has an abnormal EEG but it seems to have improved from when we first started treatment. Another option to think about is EFT. I've seen an experiment where brain waves performed more favorably by using Emotional Freedom Technique (EFT). Not sure if this would help your seizures (has been reported that it has on some) but would be very helpful for dealing with your situation emotionally. Check out emofree.com for free information. I have found through my life experiences that a pill is not always the answer to our problems...at times it may, but there are other options out there. Another area to look at in conjunction with neurotherapy and EFT is music therapy. There is a "Mozart" effect which appears to have a calming effect on the brain waves. Dr Swingle, a phychologist from Canada has developed some tapes that have an effect on brain waves. Or, just listen to Mozart and see if that has any effect on you. Its the pieces that have a rythmic repeating pattern. Don't know off the top of my head which ones, but just google the Mozart effect. In our 8 years of dealing with this issue, we have found that all options should be looked at in accordance with your Dr. Its funny, our previous pediatric neurologist supported us in getting neurotherapy. However, he moved and the new one felt it was psuedoscience. This psuedoscience has stopped our daughter from having seizures every other week or so to nothing...now you see where my passion comes from. Keep an open mind and I wish you well in finding treatment to help you. Regards, Coach Barry >However, >dramatic success came with neurotherapy from Dr Walker at the >Neurotherapy Center of Dallas. What is "neurotherapy"? Best, Bob Robert A. Fink, M. D. Neurological Surgery 2500 Milvia Street Suite 222 Berkeley, CA 94704-2636 USA 510-849-2555 ********************************** NOTE: The material above is not "medical advice". Medical advice can only be given after an in-person contact between doctor and patient. ********************************** On Dec 13, 4:40 pm, "Robert A. Fink, M. D." <lyn...@comcast.net> wrote: > On Wed, 12 Dec 2007 07:58:31 -0800 (PST), Coach Barry > [quoted text clipped - 21 lines] > doctor and patient. > ********************************** Bob, I included some information below. Neurofeedback has been around since the 70's and was done as a NASA experiment with cats. I have some other documents that were on my other hard drive that I couldn't find right now...but this should get you going. Thanks for giving your expert medical advice...I know it is really appreciated. Barry Here is a link from the Dr we see who is a neurologist: http://www.neurotherapydallas.com/ And here is another site to a psychologist that uses neurotherapy: http://www.swingleandassociates.com/home Here is a post I found from another epilepsy site about a husband whose wife did neurofeedback with excellent results. Neurofeedback is a specific form of biofeedback. It involves an apparatus to measure some biometric data and provide the subject with some feedback on the data. In classic biofeedback, heartrate/pulse or breathing are usually measured. In neurofeedback, EEG impulses are measured. The EEG impulses are monitored by a computer which analyzes the brain wave patterns within a couple of defined spectrums commonly called alpha, beta, theta, delta and gamma. A neurofeedback system matches the subject's brain wave patterns against a known pattern that is considered normalized (a composite or average profile of brain wave patterns from numerous "healthy" individuals). The system then offers the subject feedback (audible tones, graphics on a computer screen, etc.) on how close his/her brain waves are to the normalized pattern. Using this feedback, the subject can learn to change their brainwave patterns towards the normalized pattern by learning how to manipulate the feedback signal (ie. learning how to make the tone sound pleasant or make the graphics on the screen do what he/she wants). Thus, neurofeedback is ultimately a system that allows a subject to train their brain to work with a normalized brain wave pattern. When this happens, the subject is generally calmer, has better focus and greater clarity of thought. More importantly for people with epilepsy - it means less seizure activity] * FAQ (Frequently Asked Questions) About Neurofeedback Training: Quote : Is there any government funding for neurofeedback research or training? The short answer is, "yes, but nowhere near the scale of medical research." It is growing, however. Public announcements about funding studies on neurofeedback from the US Veterans Administration and the National Aeronautics and Space Administration (NASA) have been made. Neurofeedback research is being conducted at US, UK, Canadian, German, Israeli, Czech, Austrian, and other public universities, government hospitals and treatment facilities, etc., and there a growing number of these studies being published. A few of the US states have funded programs utilizing neurofeedback training and research and from time to time, reports or research papers about these are published, too. * Comprehensive Neurofeedback Bibliography (.PDF) - The International Society for Neuronal Regulation maintains a page that contains references to published studies for neurofeedback. * Neurofeedback Research: Quote : Substantial validation research has also been completed on neurofeedback for epilepsy or seizure disorder. Several controlled studies have been completed, including three condition reversal studies. Several other open trials or case series have also been reported. A recent meta-analysis (combining results of numerous separate studies) indicated that 82% of patients demonstrated greater than 30% reduction in seizures, with an average greater than 50% reduction. This outcome is all the more significant in that most of the participants included in these studies did not improve with standard medical care; for many, neurofeedback was the only alternative to surgery. Recent clinical experience has shown significantly improved outcomes using neurofeedback which is individually targeted at abnormalities in the d egree of co-activation of different brain sites, as guided by coherence findings in the QEEG.
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