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Medical Forum / Diseases and Disorders / Epilepsy / February 2004Stopping the meds
This year I will have gone ten years without any major seizure (ie. TC or CPS). Deja vu and weird feelings don't count as everyone has those from time to time. As I've been so long without problems I'd like to give up the meds (Tegretol and Frisium) in order to have a bit more energy and less brain fog. Has anyone here come off these meds completely and had any problems? A problem would mean me losing a legal driving licence. some people may say "don't rock the boat" but adding the brain fog to the memory problems makes it more of a sinking ship, which I am happily prepared to rock if I can get off these horrid meds and be free at last.  SignatureMalcolm Free at last is a great way to put it...!! I wish you all the success .. -I am on tegritol 800mgs and have been for 14yrs....I attempted to go off a few years ago and loved the rush of going from 800 to 600 to 500 to 400 to 300 and then 200 and then off... I was never so clear in my head in my life and the feeling was unbelieveable!!!!!! I had forgotten how great that was to be out of the "fog"... but I had trouble and after being completely drug free I had a grand mal and had to go back on and I had worked with my doc all the way on this he wanted me back on 200mgs to see if that would level me out...I felt scared and increased and finally went back to full 800mgs.... It was a great try for me and one that I wish would have finished with a more positive note.... -My suggestion to you would be go slowwwwww I think my reduction took a matter of about 3mths total and I think I rushed it to 2 mths ,....and wish I would have stretched it over 6 mths as for the first while the addrenaline is flowing so much I could have done anything.. as for driving ...as long as you are doing this under doc supervision..then your status won't change even if you do have a seizure....as long as you go back on meds... Not sure what Province or State you are in so check with officials first... Well best of luck...and enjoy thinking clearly!!!!!!!!!!!!!!!!!!!.. Cheers and still in the fog.... Jim! > This year I will have gone ten years without any major seizure (ie. TC > or CPS). Deja vu and weird feelings don't count as everyone has those [quoted text clipped - 10 lines] > -- > Malcolm > as for driving ...as long as you are doing this under doc supervision..then >your status won't change even if you do have a seizure....as long as you go >back on meds... AFAIK in the UK you have to be clear of szs for a year - I would lose my licence if I have a sz because I've changed dosage. The DVLA will not even bend the rules if the pharmacist gave me the wrong meds by mistake - I'd still have to wait a year before legally driving again. Unless someone in UK knows different? SignatureMalcolm I was on tegretol retard 1200mg a day and frisum 10mg a day and lamotrigine 150mg a day. I was advised to reduce my tegretol retard by 200 mg each month. I made it 200 every three months as i have been seizure free for 13 years. I am now on 800 tegretol retard and the rest as normal. I wish you luck. Isabelle P.S the consultant who advised me is one of the best in the UK and is based in Londons National Hospital for Neurology and Neurological Deseases. I think that that is its full name. > This year I will have gone ten years without any major seizure (ie. TC > or CPS). Deja vu and weird feelings don't count as everyone has those [quoted text clipped - 10 lines] > -- > Malcolm >I was on tegretol retard 1200mg a day and frisum 10mg a day and lamotrigine >150mg a day. I was advised to reduce my tegretol retard by 200 mg each [quoted text clipped - 7 lines] >in Londons National Hospital for Neurology and Neurological Deseases. I >think that that is its full name. Thanks. I too am (was?) under the wing of the National Hospital for Neurology and Neurosurgery but the consultant was always too busy climbing the ladder to the top to deal with me. Now he is at the top I haven't even had a blood check for about 5 years and I think they have forgotten about me. My GP has merely administered the meds and I've cut down from 1600/40 to 800/40 (Teg/clobazam) on my own. But I've frequently read that if you've been without sz for as long as ten years then you can slowly remove the anti-convulsants. SignatureMalcolm Howdy! I dunno... Ever think that the reason you haven't had any seizures is: BECAUSE YOU ARE TAKING YOUR MEDICATIONS?? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > This year I will have gone ten years without any major seizure (ie. TC > or CPS). Deja vu and weird feelings don't count as everyone has those [quoted text clipped - 8 lines] > the memory problems makes it more of a sinking ship, which I am happily > prepared to rock if I can get off these horrid meds and be free at last. Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >Howdy! > [quoted text clipped - 3 lines] > >BECAUSE YOU ARE TAKING YOUR MEDICATIONS?? Hi, Ever think that the reason I want to stop is: QUALITY OF LIFE?? SignatureMalcolm > >Howdy! > >I dunno... [quoted text clipped - 6 lines] > -- > Malcolm Make a note here (to myself), I think I'm agreeing with Howdy. (That's 1 out of 1 this year.) Your Original post on this thread (this morning), said you still had 'the odd Deja Vu' and can deal with that.... A Deja Vu (you probably know from multi posts here and other discussions) is an Aura of a Right Temporal Lobe based CP szr. focus. OR you're Psychic... But if it were the Latter, we wouldn't be discussing stopping meds. stuff. Did you ask your Doctor about their thoughts of trying reducing some of both of your pills? Even IF you decide to go ahead, they'd be able to lay out which pill and the rate to reduce the doses. When I replaced my Night dose of Tegretol (discussed elsewhere last week?) the replacement of the 2 tablets (4x 1/2) was done over an *8 week period with Blood work at weeks 4, 8 and 12, and a Second new med. was put in its place. So it wasn't so much Stopping those pills as adjusting the doses and adding a Newer pill that had been approved that had less? potential side effects. I think I was on a lower dose than you might be (mine was 400mg AM and 400mg PM), but that only matters wrt. the type of seizure level, body weight, and other stuff the Dr. would assess. Elsewhere too I mentioned the Last C.P. seizure I had was 1998 (June). I have *never considered stopping what (for me) is working. For *me, that just doesn't make sense. Waking up in 'Emerg.' strapped into a stretcher 4-5 times before I was 'controlled' was enough for me. But if YOUR seizures are different or Not C.P. types that might not apply to you. And I don't know how insurance etc. things work 'over there' vs. North America. In some areas if I were to Self Stop my pills without the Doctor being involved, the Doctor is 'off the hook' if I were to have a more Severe Seizure onset, or an Accident caused by my seizures (injuring myself or others). Even some of my personal liability insurance I have through my (former) Employer becomes (I think) void. G.R./ > Make a note here (to myself), I think I'm agreeing with Howdy. (That's 1 >out of 1 this year.) [quoted text clipped - 4 lines] >Psychic... But if it were the Latter, we wouldn't be discussing stopping >meds. stuff. A Deja Vu may well be the aura of a seizure (and therefore technically indicate that a seizure has occurred, however small), but they are also experienced by the general population who are not diagnosed with epilepsy. They do not lose their driving licence every time they have a Deja Vu, so I see no reason why epileptics should not also be permitted to have the occasional Deja Vu without being punished (and it *is* a punishment, because courts use suspension of licences for drink-driving offences and dangerous driving resulting in death). Also I have left TLE, so if Deja Vu are right-hemi based, they are a separate entity from my epilepsy. > Did you ask your Doctor about their thoughts of trying reducing some of >both of your pills? I do not talk to my doctor. Or at least, not to my neuro as they have forgotten that I exist and being now controlled I have probably been removed from their register to make way for more severe active cases. >Even IF you decide to go ahead, they'd be able to lay >out which pill and the rate to reduce the doses. When I replaced my Night >dose of Tegretol (discussed elsewhere last week?) the replacement of the 2 >tablets (4x 1/2) was done over an *8 week period with Blood work at weeks >4, 8 and 12, and a Second new med. was put in its place. No blood work done for many years. It just doesn't happen in the UK as the health services have only minimal resources which have to be allocated in order of priority. I reduced my Teg from 1600 to 800 gradually by myself with no problem, so if I go from 800 to 0 I shall do so even more slowly, especially in the final stages. The level of meds is obviously higher than the minimum required for control, as some days I discover I have forgotten (surprise surprise!) to take the morning dose and therefore go 24 hrs without AEDs rather than just 12. So there is obviously *some* leeway for reduction. What I don't know about is the clobazam. As a benzo, it's highly addictive, and the only removal of any addiction I have experienced before was giving up smoking 12 years ago. I don't know what the withdrawal symptoms will be and wondered if anyone else had come off / reduced this med so I could know what to expect? > But if YOUR seizures are different or Not C.P. types that might not apply >to you. And I don't know how insurance etc. things work 'over there' vs. [quoted text clipped - 3 lines] >or others). Even some of my personal liability insurance I have through my >(former) Employer becomes (I think) void. I have no personal insurance, so there is nothing to be affected in that area. If my driving insurance has a non-compliance clause, then obviously that will be an issue into which I shall have to look and consider. Regards, SignatureMalcolm Howdy M! I hate to sound like a broken record but: An aura IS A SEIZURE! It is a SIMPLE PARTIAL SEIZURE. Some of us (myself included) have simple partial seizures "auras" in and of themselves. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com <snip> > A Deja Vu may well be the aura of a seizure (and therefore technically > indicate that a seizure has occurred, however small), but they are also [quoted text clipped - 7 lines] > Also I have left TLE, so if Deja Vu are right-hemi based, they are a > separate entity from my epilepsy. <snip> > Regards, "Dave ©¿©¬" wrote: > Howdy M! Howdy Dave! > I hate to sound like a broken record but: and I do also, but > An aura IS A SEIZURE! It's caused by seizure activity. As far as the doctors are concerned, it's all just "seizure activity". So much for fine distinctions. :-( > It is a SIMPLE PARTIAL SEIZURE. I don't think an aura is a SPS! I have both aura's and SPS's and there's a difference! The SPS's are much more pronounced and build up to a climax and are usually preceeded by an aura. But an aura can come and go without developing into a SPS. > Some of us (myself included) have simple partial seizures "auras" in and of > themselves. I have both also. > "Noli illigitemi carborundum decendus" Make darn sure of that!<g> Bob > > Howdy M! > Howdy Dave! [quoted text clipped - 18 lines] > Make darn sure of that!<g> > Bob Depending what you want to take as 'a source' Ep. Foundation of America and some other sites list a SPS With the Aura definition, whether or not the more complicated seizure types are preceded by or include auras too. (I think it's also clustered that way under the Idaho First Aid Chart wrt. seizure symptoms listed.) G./ > > "Dave ©¿©¬" wrote: > > > Howdy M! [quoted text clipped - 26 lines] > Depending what you want to take as 'a source' Ep. Foundation of America and > some other sites list a SPS With the Aura definition, Those sites don't necessarily have my respect and to treat the term "aura" that way robs us of a term to describe certain feelings. > whether or not the > more complicated seizure types are preceded by or include auras too. I think I tried to draw out from the people who had auras before grand mals and it sounded like what I thought was an aura, not a SPS. > (I > think it's also clustered that way under the Idaho First Aid Chart wrt. > seizure symptoms listed.) That site will never have my respect as long as that "Labeling is Disabling" article remains there. It's strictly inflammatory and counter-productive. > G./ Bob > > > > Howdy M! > > > Howdy Dave! > > > > I hate to sound like a broken record but ..... and I do also, but > > > > An aura IS A SEIZURE! > > > It's caused by seizure activity. As far as the doctors are concerned, it's all > > > just "seizure activity". So much for fine distinctions. :-( > > > > > > > It is a SIMPLE PARTIAL SEIZURE. > > > > > > I don't think an aura is a SPS! I have both aura's and SPS's and there's a > > > difference! The SPS's are much more pronounced and build up to a climax and > > > are usually preceeded by an aura. But an aura can come and go without > > > developing into a SPS. > > > > > > > Some of us (myself included) have simple partial seizures "auras" in and of themselves. > > > I have both also. > > > [quoted text clipped - 7 lines] > Those sites don't necessarily have my respect and to treat the term "aura" that > way robs us of a term to describe certain feelings. ** I guess I wasn't doing a Google on 'Must have Your respect AND explains commonly accepted terms that others or newbies could use to get oriented when they're doing Net searches' ... While a Simple Partial seizure does NOT result in loss of Consciousness, the Other types of seizures often do. Similarly (and for that reason) an Aura that can vary from a dizzy feeling or swirling sensation but Not progress to one of the stronger seizures seem to overlap what a Simple Partial type szr. is usually described as And what an Aura is described as (at least w.i. the C.P. and G.M. type seizures). So it's often easier to group the feeling, taste, odour, Deja vu or Jamais Vu sensations or swirling feeling, and call that an Aura (since it also overlapped what was used? in the 1600s to describe the feeling that doesn't have an Outward Flag but is sure Felt Inside by those of us who have them. The Deja Vu and Jamais Vu are very powerful feelings and I can see (having had the first one) why people who had those Centuries ago would become afraid that they were 'losing control to someone or something' outside of themselves, if those came on without anything to relate them to. /G. > > whether or not the > > more complicated seizure types are preceded by or include auras too. > > I think I tried to draw out from the people who had auras before grand mals and > it sounded like what I thought was an aura, not a SPS. ** I missed the G.M. reference then. Those of use with C.P. (Complex Partial) used to get auras as a warning of a stronger Seizure on the Way. As I got to control in 1999, the last szrs. or symptoms I had were the Auras (S.P. seizures, some dizzy to point of collapse, some not). As I had more of those I was aware of and could remember, I had Less of the Drop down C.P. szrs. where I'd lose awareness and wander into traffic or somewhere that was unsafe before losing Consciousness... /G. > > G (My old note)-> (I think it's also clustered that way under the Idaho First Aid Chart wrt. > > seizure symptoms listed.) > > That site will never have my respect as long as that "Labeling is Disabling" > article remains there. It's strictly inflammatory and counter-productive. *** G. That phrase was used frequently over last 5 years, on several Charities around North America to change people's images of what constitutes 'a disability'. Several of the Mental Health and Non-mental health conditions here used to be 'Cornered' by a *Title, or a **Label, of whether a person was 'Retarded' or 'an Epileptic', and the Label then became the End of the discussion or learning on a subject. Once a person was 'shoeboxed' by a Title and a Name for his 'Problem', he could be set aside without further regard to Charter of Rights (in Canada) or People with Disabilities Laws (elsewhere). The Earlier exchange we had with someone who got First Aid on a Subway during a seizure wouldn't have happened in 1970. If someone had a szr. others would tend to Move Away so we don't get Sued if we try help and fail, OR might 'catch it too'. By getting others to Not put Labels on a condition which might not be accurate, it's intended to open doorways to finding out more about a condition and how best to help or at least not HINDER. I doubt they'll lie awake nights, worrying that One person out of 100,000 doesn't like the term. And different Countries use different Vocabulary to describe what turns out to be similar or identical condtions. We can be more careful to not 'have a fit' over it..... at least. :-< > > G./ > > Bob Howdy Bob, M, Who(m)ever!!! My biggest hang up/forte (depending on your point of view) is LINGUISTICS & SEMANTICS (you may have come to that conclusion for yourself!) That is because my whole writing process is: Do not write so that you can be understood but Write so that you can NOT be MISunderstood. We have one word: AURA That one word has two meanings, one medical (a seizure forewarning another seizure) and another merely perceptual. The medical meaning has been interchanged with the perceptual one and the two concepts in the two different disciplines (for want of a better word) have become fuzzy-synonyms. Not only that but the medical term has been generalized and fuzzy when discussing seizure types that faulty logic has been used to arrive at the new, erroneous definition. Oi! One word getting fuzzy two different ways at the same time! YOU decide... Is this a glitch in my psyche? OR Is my militant professionalism getting in the way of casual conversation? (sigh...) I don't know anymore... SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com "Dave ©¿©¬" wrote: > Howdy Bob, M, Who(m)ever!!! > > My biggest hang up/forte (depending on your point of view) is LINGUISTICS & > SEMANTICS (you may have come to that conclusion for yourself!) and here I was thinking it was corny Latin expressions.<g> > That is because my whole writing process is: > Do not write so that you can be understood but > Write so that you can NOT be MISunderstood. You strive for the impossible. > We have one word: AURA > > That one word has two meanings, one medical (a seizure forewarning another > seizure) and another merely perceptual. I don't think you'll find it to have any medical meaning. My doctor has been unable to give me a definition and a distinction and merely says that "it's all seizure activity". > The medical meaning has been interchanged with the perceptual one and the > two concepts in the two different disciplines (for want of a better word) > have become fuzzy-synonyms. When I first heard the word Aura used, I thought it was a wonderful way of describing the "feelings" I had. Here is one dictionary definition that is like what I had in mind: noun: a distinctive but intangible quality surrounding a person or thing (Example: "The place had an aura of romance") But my Auras could lead into something more and I thought that was my Simple Partial Seizure. The people who have Grand Mals have described an Aura like I do except that their's lead into a Grand Mal instead of a SPS.. > Not only that but the medical term has been generalized and fuzzy when > discussing seizure types that faulty logic has been used to arrive at the > new, erroneous definition. I tried, I really did, to get my doctor to give me a "medical" definition and after describing both what I thought were Auras and what I thought were SPS's, he just said that "it's all seizure activity".<sigh> > Oi! One word getting fuzzy two different ways at the same time! > [quoted text clipped - 5 lines] > > (sigh...) I don't know anymore... I'm not sure I understood a word that you said. :-) Bob Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >Howdy Bob, M, Who(m)ever!!! > [quoted text clipped - 13 lines] >two concepts in the two different disciplines (for want of a better word) >have become fuzzy-synonyms. I think you've put your finger right on it there Dave. A Deja Vu can be part of an aura, but it can also be a non-epileptic feeling of just having been somewhere before or done something previously, which happens to everyone in the general population. Go out and ask people in the street what is meant by Deja Vu, and they will give you the latter definition. Ask them what an aura is and they'll probably tell you it's a something describing people with a strong personality, or circle of light surrounding an alien. There is the same problem with the word depression, which has a number of meanings, only one of which is medical. The meanings are not interchangeable. Neither is the medical term 'aura' and the common usages of the word 'aura'. If someone in the general population has a Deja Vu, it does not mean that they have experienced a seizure starting. If it did, then all the population would be classified as epileptic as *everyone* over the age of ten has had at least two of these odd feelings over their lifetime. All driving licences would be revoked and instead of developing smart bombs we'd have to have smart buses (no-one left to drive them). I see no reason why, after ten years free of CPSz, my occasional Deja Vu should be classified any differently to the occasional Deja Vu experienced by the general population, or why it should be used to limit any of the things I wish to do. There is enough bigotry experienced by being epileptic without having one rule for 'them' and another rule for us. Abrasively yours, (just defending my rights), SignatureMalcolm > <snipping> > [quoted text clipped - 7 lines] > interchangeable. Neither is the medical term 'aura' and the common > usages of the word 'aura'. Please quote or point me to a place where I can find an *authoritative* definition for "the medical term 'aura'". Betcha can't do it. :-) Bob >Please quote or point me to a place where I can find an *authoritative* >definition for "the medical term 'aura'". > >Betcha can't do it. :-) > >Bob http://health_info.nmh.org/Library/HealthGuide/IllnessConditions/topic.a sp?hwid=tm6354 Well that didn't take long. North-western Memorial Hospital neurosurgeon authoritative enough for you? Next? SignatureMalcolm > >Please quote or point me to a place where I can find an *authoritative* > >definition for "the medical term 'aura'". [quoted text clipped - 13 lines] > -- > Malcolm Thank you! <http://health_info.nmh.org/Library/HealthGuide/IllnessConditions/topic.asp?hwid= tm6354> is quite interesting although I didn't see that being promoted as a "medical" definition. IAC, he didn't describe my own Auras. But most interesting of all (Dave please take note), he didn't call it a Simple Partial Seizure!<vbg> Bob >M wrote: > [quoted text clipped - 27 lines] > >Bob Bob, just what *does* make a "medical" definition, especially in an area as difficult as neurology? Everyone is different, and although there may be someone with Complex Partial TLE, on the same medication with onset at the same age of 19, their auras and seizures are likely to be very different to mine. This is the human mind we are dealing with, and auras are a *subjective* experience. Because they involve emotions not encountered IRL (if I may bend that meaning a bit) it is not possible to describe an aura or the experience of a seizure. There are no words available for the feelings encountered. The best I can do is on: http://www.mtdomain.demon.co.uk/CWS/Poems/mt51a.htm http://www.mtdomain.demon.co.uk/CWS/Poems/mt51f.htm Also, please note, IIUC no-one is saying an aura is a Simple Partial Seizure. It is claimed that an aura is *part* of a seizure, in the same way that the first snowflake to slip is part of an avalanche. Such auras may or may not progress to a more severe recognisable seizure, or may fizzle out. SignatureMalcolm > >M wrote: > > [quoted text clipped - 27 lines] > > Bob, just what *does* make a "medical" definition, It means that any given term has the same meaning to all medical professionals and is used in a consistent & unambiguous manner. How else is miscommunication to be avoided? > especially in an area > as difficult as neurology? That situation presents an even greater demand for unambiguous terminology. > Everyone is different, and although there may > be someone with Complex Partial TLE, on the same medication with onset > at the same age of 19, their auras and seizures are likely to be very > different to mine. Then there should be different terms to describe those differences. > This is the human mind we are dealing with, and auras are a *subjective* > experience. and very real & very unpleasant. > Because they involve emotions Mine involve no emotion. > not encountered IRL (if I may > bend that meaning a bit) it is not possible to describe an aura or the > experience of a seizure. There are no words available for the feelings > encountered. I agree and haven't been able to describe my feelings when having an Aura - it's like nothing else in life. > The best I can do is on: > [quoted text clipped - 3 lines] > Also, please note, IIUC no-one is saying an aura is a Simple Partial > Seizure. No. It has been said repeatedly here! over & over & over again! > It is claimed that an aura is *part* of a seizure, in the same > way that the first snowflake to slip is part of an avalanche. Such auras > may or may not progress to a more severe recognisable seizure, or may > fizzle out. Nice analogy and I won't dispute that an Aura involves a similar type of malfunction to a seizure or seizure-like activity in the brain. What I do object to is calling an Aura a Simple Partial Seizure. I also object to relating the whole description of my typical experience to my epileptologist in hopes of some clarification from him, only to have him say "it's all seizure activity". How informative & enlightening. :-( Bob Howdy! THANKS GUYS!!! At least now I know that it's not just me! :) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > >M wrote: > > > [quoted text clipped - 4 lines] > > >> > > > >> >Bob http://health_info.nmh.org/Library/HealthGuide/IllnessConditions/topic.a > > >> sp?hwid=tm6354 > > >> [quoted text clipped - 74 lines] > > Bob >But most interesting of all (Dave please take note), he didn't call it a >Simple Partial Seizure! Mixing the word "simple" up with the experience of a seizure of any sort seems to me an utter absurdity! If the electrical firing during the seizure does not happen in a Complex Fashion involving only a Partial part of the Brain (so Complex Partial seizure), but only involves electrical firing in a rudimentary fashion, what would you like to have it called? Many of the terms are Medical Terms that have evolved over time, based on further research and discoveries as time passes. What was originally called Temporal Lobe Epilepsy (I still call mine that), later was clustered in among Complex Partial Seizures, since most seizures that start in a Temporal Lobe, for one, might spread (or generalize) to involve other areas of the brain, as the electrical firing washes outward from the original seizure focus. Many of the terms we might use around here might be generally accepted Medical Terms that are used to describe a particular condition. Some we add on our own, based on our own personal experiences or shared experiences that others might have too. (Being 'hit by a truck' , drifting into 'The Twilight Zone' of a Deja Vu or Jamais Vu aura, might not be current medical descriptions, but are often recognized by others of us here who have had some of those experiences as part of our seizure onset, or when we were not fully controlled. We do not literally need to be Hit by a Truck to know what that feeling is like, that the person posting is describing. ) Some of the simple partial seizures also don't lead to unconsciousness, but merely include the Aura that can happen by itself *or be a sign that it's the onset of a Stronger seizure like the C.P. types (for one). Several of the posters around here have described having 'only' simple partial seizures or absences, without the second phase that can go on to behaving strangely (been there, done that), if a seizure carries on into the C.P. phase. Relative to losing full awareness or consciousness, they are relatively Simple types of seizures, compared to the stronger types. G.R. > >But most interesting of all (Dave please take note), he didn't call it a > >Simple Partial Seizure! > > Mixing the word "simple" up with the experience of a seizure of any sort seems > to me an utter absurdity! >Relative to losing full awareness or consciousness, they are >relatively Simple types of seizures, compared to the stronger types. >G.R. Without being in the brain, I don't know how much can really be known, and don't see much value in the knowledge in any case. I suppose the salient factors are whether or not consciousness was lost and whether or not motor control was lost. Also to be considered would be the extent of memory loss. Yet that memory business is tricky - some short term stuff may evaporate while some ancient history pops up out of the blue. I just remembered the face and name of my HS art teacher - a man I have not thought of since the old days over 40 years ago. > Yet that memory business is tricky - some short term stuff may evaporate while > some ancient history pops up out of the blue. I just remembered the face and > name of my HS art teacher - a man I have not thought of since the old days over > 40 years ago. I've had the very same sort of thing happen to me. Old addresses, old telephone#'s, experiences etc. Whenever I have a seizure or lighter seizure feelings, they're usually accompanied with a memory flashback to some point in my past when I was having the same feelings. I know for a fact that this was happening in my 20's and am trying to try things back to my childhood in an unambiguous way i.e. without generating a false memory. Bob > >Relative to losing full awareness or consciousness, they are > >relatively Simple types of seizures, compared to the stronger types. [quoted text clipped - 8 lines] > name of my HS art teacher - a man I have not thought of since the old days over > 40 years ago. Some of the posts I was doing earlier and about Tegretol CR related to Temporal Lobe (Complex Partial) Epilepsy. The T. lobes (listed there) are the Short Term memory buffers where **new learning goes. If that's type of seizures you have or are taking Tegretol for, the High School teacher from 40 years ago is unrelated to recent or new learning. The Memories described there are coming from 2 different 'data banks'. Repeating a sequence of numbers backward given (now) verbally to you, is different than remembering your favourite colour in grade 2 or your favourite teacher for Math. (I had that 5-long/ reverse number recall during my initial testing of Temporal Lobe Damage and know that I did Abysmally, I could remember about 2 of the numbers, then the rest vanished.) (It's like one set of information is coming from Disk Memory on a computer and the other from Computer Memory (volatile) on the machine.) G./ Gaross wrote: "It's like one set of information is coming from Disk Memory on a computer and the other from Computer Memory (volatile) on the machine." Monsieur, I continue to consider my PC a machine, despite its increasing intrusion into my psyche. I am grateful that someone around here knows exactly what is going on in my brain when I have my seizures. I am trying to figure out which lobe is in operational control during the aftermath while equilibrium is being restored. >Gaross wrote: "It's like one set of information is coming from Disk Memory on >a computer and the other from Computer Memory (volatile) on the machine." [quoted text clipped - 5 lines] >brain when I have my seizures. I am trying to figure out which lobe is in >operational control during the aftermath while equilibrium is being restored. ScanDisk :) SignatureMalcolm > >Gaross wrote: "It's like one set of information is coming from Disk Memory on > >a computer and the other from Computer Memory (volatile) on the machine." [quoted text clipped - 10 lines] > -- > Malcolm ROTFLMFAO @ Malcolm. Howdy Malcom! Would that be an EEG, MRI scan or CAT scan? Actually, your integrated head system has too much electricity in it and develops short circuits (seizures). You need an electritian (neuro) to tell you what the problem might be. Since he is only an apprentice electritian, all s/he can do is find the problem, s/he can't fix it for ya'! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >Gaross wrote: "It's like one set of information is coming from Disk Memory on > >a computer and the other from Computer Memory (volatile) on the machine." [quoted text clipped - 7 lines] > > ScanDisk :) Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >Howdy Malcom! > >Would that be an EEG, MRI scan or CAT scan? MS >Actually, your integrated head system has too much electricity in it and >develops short circuits (seizures). MS ScanDisc detected no errors or bad sectors in my brain. A few corrupt files were found and they were dealt with by the local Magistrates Court. >You need an electritian (neuro) to tell you what the problem might be. I had one (two three four five....). They couldn't. >Since he is only an apprentice electritian, all s/he can do is find the >problem, s/he can't fix it for ya'! They couldn't find it. They couldn't control it. They just gave it a name - idiopathic. As a sociopath is someone who doesn't tolerate society, an idiopath is obviously someone who doesn't tolerate idiots. That's why I discharged myself from Nat Hosp for Neuro and Neurosurg and took control of my own medications. I then defragged the system with benzos and antipsychotics and subjected it to a vigorous long-term test of 24/7 stress. As you see, it has worked for ten years. Thus proving that neuros are an unnecessary expense on the NHS, and DIY neurology works best. I am considering a career change - has anyone got a brain I could borrow to practice some surgery on? SignatureMalcolm >has anyone got a brain I could borrow >to practice some surgery on? I presume you mean idiopathic surgery. Only an idiot would have the balls to guess which of my neurons were worthy of excising. -Tim > >Howdy Malcom! > > [quoted text clipped - 31 lines] > -- > Malcolm Hey Malcolm, You can use mine. I've had all the use I want from it, haven't used it for some time now and don't need it any more....it's just taking up valuable space. Darryl. >Hey Malcolm, >You can use mine. >I've had all the use I want from it, haven't used it for some time now and >don't need it any more....it's just taking up valuable space. > >Darryl. Malcolm - don't do the whole thing. Darryl is just going through a down phase. But no problema about his nasty frontal lobe. With that out of the way, the temporal is sure to back off. -Tim Howdy Malcom! Guess I'm behind the times, eh? I'm talking about electronics and you're talking about computer science! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >Howdy Malcom! > > [quoted text clipped - 29 lines] > I am considering a career change - has anyone got a brain I could borrow > to practice some surgery on? Howdy! In this case "simple" is not used as an adjective. "Simple partial seizure" is a medical term having a specific meaning. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >But most interesting of all (Dave please take note), he didn't call it a > >Simple Partial Seizure! > > Mixing the word "simple" up with the experience of a seizure of any sort seems > to me an utter absurdity! > >But most interesting of all (Dave please take note), he didn't call it a > >Simple Partial Seizure! > > Mixing the word "simple" up with the experience of a seizure of any sort seems > to me an utter absurdity! Tim, It seems you get very tied up with symantics. A word used within this group of people who understand the common use of that word is good enough to convey the meaning intended, so why complain about whether that word is suitable? It has a meaning to us all and that's all it's intended to do. Ok, it sounds like an oxymoron, but as Gordon says, it's what the medical profession have deemed that type of seizure to be called because of it's nature. Darryl. I had a benign tumor removed Oct 2002, and have had CPS since then. To tell you the truth, I find it hard to draw the line between the aura and seizure. Usually, I get a wiff of a weird smell. Then the weird feeling where I can have a conversation, but it's aweful if someone won't stop talking for a minute. For the next 10 minutes or so, I'm frazzled. I take Lamactal and Keppra for this... which works great and doesn't give me the foggy feeling. Topamax made me want to end it all, and dylanton (or however you spell these) made me an idiot because I was alergic to it. I guess after writing this book, I'm wondering if you've tried your share of other drugs? Best, John g'day dave, i think your going to have to tell the wider medical community to get their act together then because every doctor and neurologist that i've frequented have treated auras and simple partial seizures as two different entities. pablo > Howdy M! > [quoted text clipped - 24 lines] > > > Regards, Here's an interesting aura for ya... 1: Neurology. 2002 Jan 22;58(2):302-4. Orgasmic aura originates from the right hemisphere. Janszky J, Szucs A, Halasz P, Borbely C, Hollo A, Barsi P, Mirnics Z. Epilepsy Center, National Institute of Psychiatry and Neurology Budapest, Hungary. janszky@opni.hu The authors present a patient with right mesiotemporal epileptogenic region who experienced orgasmic epileptic aura. Twenty-two similar published cases were also evaluated. Among 15 patients with unilateral EEG foci, 13 (87%) had right and 2 (13%) had left focus. All of the nine patients who had sufficient data on ictal onset area had right-sided seizure onset. The authors suggest that orgasmic aura is an ictal lateralizing sign to the right hemisphere. > g'day dave, > i think your going to have to tell the wider medical community to get their [quoted text clipped - 30 lines] > > > > > Regards, The lucky bast***s. How do I get this type of epilepsy. I'd like to trade mine in. Darryl. > Here's an interesting aura for ya... > [quoted text clipped - 65 lines] > > > > -- > > > > Malcolm Howdy! Read the definition again: Believe it or not, the aura sensation of some people BEFORE HAVING A SEIZURE is orgasmic! http://members.tgworld.org/seabrook/disability/epcomplications.htm (emphasys my own) That's what I said... A simple partial that is a forewarning that another seizure is on the way!!! Thanks for proving my point! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Here's an interesting aura for ya... > [quoted text clipped - 57 lines] > > > > > > > Regards, "Dave ©¿©¬" wrote: > Howdy! > [quoted text clipped - 5 lines] > > (emphasys my own) I hadn't said it before, but now that you brought it up<g>, what I call my actual seizures (as opposed to Auras) are very much like an orgasm. The parallel is in the way that they build up to a climax and then it's over. I can assure you though that there is nothing pleasurable about my seizures. > That's what I said... A simple partial that is a forewarning that another > seizure is on the way!!! I can have Auras that go away, or I can have Auras that continue & build up like I described above. > Thanks for proving my point! I don't think so! Bob > -- > Dave ©¿©¬ [quoted text clipped - 78 lines] > > > > > -- > > > > > Malcolm Howdy Bob! Wish I could say the same about my seizures! But, I fear it is only the Lamictal kicking in (sigh....) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > I hadn't said it before, but now that you brought it up<g>, what I call my > actual seizures (as opposed to Auras) are very much like an orgasm. The > parallel is in the way that they build up to a climax and then it's over. I can > assure you though that there is nothing pleasurable about my seizures. <snip> > Bob "Dave ©¿©¬" wrote: > Howdy Bob! > > Wish I could say the same about my seizures! > > But, I fear it is only the Lamictal kicking in (sigh....) but, like I said, there is absolutely no pleasure involved whatsoever. Quite the contrary. If there were, I'd never have seen a doctor in the first place and I sure wouldn't be taking meds to stop them. ;-) Bob > > I hadn't said it before, but now that you brought it up<g>, what I call my > > actual seizures (as opposed to Auras) are very much like an orgasm. The [quoted text clipped - 4 lines] > <snip> > > Bob >"Dave ©¿©¬" wrote: > [quoted text clipped - 7 lines] >contrary. If there were, I'd never have seen a doctor in the first place and I >sure wouldn't be taking meds to stop them. ;-) Pity. If there were such pleasure involved it'd be worth going into status. SignatureMalcolm > >"Dave ©¿©¬" wrote: > > [quoted text clipped - 12 lines] > -- > Malcolm I printed out this blurb that was posted the other day and showed it to my doctor at my appointment this afternoon. 1: Neurology. 2002 Jan 22;58(2):302-4. Orgasmic aura originates from the right hemisphere. Janszky J, Szucs A, Halasz P, Borbely C, Hollo A, Barsi P, Mirnics Z. Epilepsy Center, National Institute of Psychiatry and Neurology Budapest, Hungary. janszky@opni.hu The authors present a patient with right mesiotemporal epileptogenic region who experienced orgasmic epileptic aura. Twenty-two similar published cases were also evaluated. Among 15 patients with unilateral EEG foci, 13 (87%) had right and 2 (13%) had left focus. All of the nine patients who had sufficient data on ictal onset area had right-sided seizure onset. The authors suggest that orgasmic aura is an ictal lateralizing sign to the right hemisphere. I asked my doctor if that was the type of seizure that I was having. He said no! He was familiar with the article and familar with that type of seizure and told me that it is, in fact, like a sexual orgasm. Oh well!<sigh> Bob Howdy Malcom! "Quality of life" is a very nebulous goal. Guess it means different things to different people. I don't that that we (members of the group) will EVER come to a mutual agreement on this... "What is good" and "How much is good enough" are both goals that each and every person must define for him/herself. Some knit-pickers (like me) attempt to look at as many of the "what if" contingencies as we can. Doesn't matter how many we take into account, there are always more out there that we didn't think about and that we will only see if/when they rear their ugly heads. From my point of view (my seizures have never been controlled) quality of life means "seizure free." SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >Howdy! > > [quoted text clipped - 9 lines] > > QUALITY OF LIFE?? Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >From my point of view (my seizures have never been controlled) quality of >life means "seizure free." I can certainly understand that, as there was a time when that was the case with me. But the inter-ictal problems of TLE seem to be particularly insidious with whatever causes *my* epilepsy. With Mother Nature's sick sense of humour, inter-ictal problems increase as seizures decrease. As I've been stable for so long, then the weakened discharge routes in my brain have had time to recover and therefore seizures are less likely (especially now that I don't go marathon running any more). I know that after ten years doctors will consider the gradual removal of meds, so if it's possible, at least the need for 10 hours sleep and yet still having a brain full of mud would be a great improvement. The other non-seizure problems which the epilepsy brings I shall just have to put up with :( SignatureMalcolm Howdy M! Sorta' like "callouses on the brain", eh? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >From my point of view (my seizures have never been controlled) quality of > >life means "seizure free." [quoted text clipped - 14 lines] > The other non-seizure problems which the epilepsy brings I shall just > have to put up with :( Hi, Ever think that the reason I want to stop is: QUALITY OF LIFE?? SignatureMalcolm Malcolm - I am in complete support with your aspirations and look forward to hearing your reports of success. Tim >Malcolm - I am in complete support with your aspirations and look >forward to >hearing your reports of success. Tim Thank you, obviously another person who understands the problems of meds IRL. They are like a straitjacket and I'd like escape. SignatureMalcolm > >Howdy! > > [quoted text clipped - 9 lines] > > QUALITY OF LIFE?? G'day malcolm, quitting may give you a bit more energy and lessen the brain fog, but how good will your quality of life be if/when you start having seizures again? i think i'd rather put up with brain fog instead of seizures. good luck with your endeavours. pablo >G'day malcolm, >quitting may give you a bit more energy and lessen the brain fog, but how >good will your quality of life be if/when you start having seizures again? i >think i'd rather put up with brain fog instead of seizures. good luck with >your endeavours. >pablo Thank you. I hope the operative word is 'if' and not 'when' :) SignatureMalcolm What did your last EEG show? I planned to come off mine after 10 yrs w/o seizures but my EEG was still abnormal.... and not worth the risk to stop. > This year I will have gone ten years without any major seizure (ie. TC > or CPS). Deja vu and weird feelings don't count as everyone has those [quoted text clipped - 8 lines] > the memory problems makes it more of a sinking ship, which I am happily > prepared to rock if I can get off these horrid meds and be free at last. >What did your last EEG show? I planned to come off mine after 10 yrs w/o >seizures but my EEG was still abnormal.... and not worth the risk to stop. Last EEG was 24 years ago when I was DXed. That the UK NHS for you! SignatureMalcolm >>What did your last EEG show? I planned to come off mine after 10 yrs w/o >>seizures but my EEG was still abnormal.... and not worth the risk to stop. > > Last EEG was 24 years ago when I was DXed. That the UK NHS for you! One would expect them to do another EEG before you go off your meds. Howdy Malcom! Were you dx'd BECAUSE of the eeg or IN SPITE OF the eeg? (just curious, that's all...) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >What did your last EEG show? I planned to come off mine after 10 yrs w/o > >seizures but my EEG was still abnormal.... and not worth the risk to stop. > > Last EEG was 24 years ago when I was DXed. That the UK NHS for you! Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >Howdy Malcom! > >Were you dx'd BECAUSE of the eeg or IN SPITE OF the eeg? > >(just curious, that's all...) IDNUYQ. Simple seizures (short patches of loss of verbalisation / comprehension), EEG showed a slow wave in theta region (non-ictal, so presumably it ticks away all the time). No ictal EEG performed. DXed as mesial temporal sclerosis, but three MRIs and high res MRI showed a perfectly normal brain, hence no surgery. Treatment with AEDs turned the simple seizures into CPS. Meds for CPS turned me into a zombie and required meds for side effects. SignatureMalcolm Howdy! Were your EEGs normal or abnormal? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >Howdy Malcom! > > [quoted text clipped - 13 lines] > > Meds for CPS turned me into a zombie and required meds for side effects. Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote >Howdy! > >Were your EEGs normal or abnormal? They said the slow theta wave was abnormal. All other channels were OK. SignatureMalcolm There was a study done in England some 10 years ago on the effects of getting off of seizure meds. One of them was tegretol. Nearly every patient suffered withdrawal seizures from reducing tegretol. No further studies were done that I know of. It may be that there are ethical problems in doing such studies. The drug companies aren't much help either. My daughter was on tegretol for many years and thus my interest. She was on the ketogenic diet and I wanted her off her tegretol, her only AED. The neurologist finally agreed. We weaned the tegretol over 1 month. This turned out to be too fast. The day after the last pill, she started having many seizures, more than any time in her life. It may have been status. I don't know. I hadn't found that article at that time. We had to put the tegretol back to its original dose and the seizures abated. From reading the article and considering that the seizures came back after the last pill, it seemed to me that a slow reduction was in order, particularly at the end. So I used an exponential reduction over about 4 months. I think that I reduced it every week or two. It went something like 1600, 800, 400, 200, 100, 50, 25, etc. You get the picture? At the end I cut the pills in half, then quarters even though they were slow release form. Then I went from every day to every other day, to every 4 days then a week and that was about it. I don't know about your other medication, but I can certainly say that the tegretol must be reduced very carefully, whether it controls seizures or not. If I were you, I would do a reduction as above over a period of at least 6 months. Bill In a message dated 01-06-04 WEBMASTER@NEED.TO.REMAIN. wrote to ALL: > This year I will have gone ten years without any major seizure (ie. > TC or CPS). Deja vu and weird feelings don't count as everyone has > those from time to time. > As I've been so long without problems I'd like to give up the meds > (Tegretol and Frisium) in order to have a bit more energy and less > brain fog. Has anyone here come off these meds completely and had any > problems? A problem would mean me losing a legal driving licence. > some people may say "don't rock the boat" but adding the brain fog to > the memory problems makes it more of a sinking ship, which I am > happily prepared to rock if I can get off these horrid meds and be > free at last. -- Malcolm Ciao, WILLIAM BARBER -> Alice4Mac 2.4.4 E QWK Eval:06Mar103 Origin: Alice strikes back @ |
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