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Medical Forum / Diseases and Disorders / Epilepsy / May 2004Questions about medicines
Hello, Based on advise from my neurologist, I started taking 1000mg of Depakine Chro. After a couple of weeks, I will have to tell her how it went and if there is a need to increase/decrease the dose I am taking. She also stated I do not need to take a second EEG. So, the question I have is: how on earth is she going to know if I need to take a higher / lower dose of medicines? Is this only based on my feedback? When I had this EEG, I simply did not know there was epileptic activity going on which may result in a epileptic fit. So, how can I tell then for sure that the medicines are doing what they are supposed to do: preventing the epileptic activity? Furthermore, she stated that when the next fit will occur, it will be a grand mall so that is why I need to take the medicines. Thanks for answering my questions. Bye, Marco Why did you have the EEG in the first place? Have you had seizures (I hate the word "fits") before? "Furthermore, she stated that when the next fit will occur, it will be a grand mall so that is why I need to take the medicines." If your doctor said this, you need to find a new doctor. > Why did you have the EEG in the first place? Have you had seizures (I > hate the word "fits") before? [quoted text clipped - 4 lines] > > If your doctor said this, you need to find a new doctor. That was (more or less) MY reaction as well- doctors can't predict *when* you might seize again, never mind exactly how/ what type of seizure you'll have! (Although you CAN try to figure out what triggers you have & try to avoid them) >> Why did you have the EEG in the first place? Have you had seizures (I >> hate the word "fits") before? [quoted text clipped - 9 lines] > what type of seizure you'll have! (Although you CAN try to figure > out what triggers you have & try to avoid them) Yep, I know my triggers (stress/alcohol/lack of sleep). Doctor states that I now have epileptic activity in another part of my brain (I have an epileptic history / petit malls during child hood) which may now cause a grand mall. I do understand that they cannot predict when I am going to get another one. I only want to know how one can tell if he is doing OK when taking his medicines without EEG? Maybe I still have seizures during the day while I do not notice them as happened during the EEG? Thx. PS: Sorry for any dumb questions but I had not been using medicins for 19 years so I have to get used to that again! I imagine (guess) that they are basing "okay" on blood tests showing the medication levels in your system and on feedback from you on the "dizzy spells". >I imagine (guess) that they are basing "okay" on blood tests showing the > medication levels in your system and on feedback from you on the "dizzy > spells". Yes, drawing blood is indeed scheduled. I have been taking medicines now since approximately two or three weeks. It is 100% clear to me that with 1000mg Depakine I am not feeling dizzy anymore :-) HOWEVER: this dizzy feeling may be caused by stress in stead of epileptic activity because when I think I am getting another seizure, I may start to panic, etc. I simply do not know. Fact is that I had this seizure in February and two (!) months later I was finally able to speak to a neurologist. Mid april I had my first EEG (2.5 months later). That period, I really pulled my hear out so to speak. Maybe the medicines gave me some relief now? Thanks for responding. >because when I think I am getting another seizure, I may >start to panic, etc. Oh me too! I hate it. > >> Why did you have the EEG in the first place? Have you had seizures (I > >> hate the word "fits") before? [quoted text clipped - 11 lines] > > Yep, I know my triggers (stress/alcohol/lack of sleep). ***G.*** Those 3 above are Common Triggers for most of our Types of Seizures. Note-- If you're taking an Anti Ep Drug and still using alcohol, you might be **causing some of the seizures. Most of the AEDs are compromised or interfered with by alcohol use. Some of the prescriptions (and from another post I just did to you), depend on a low dose taken at rate the Dr. says to build to a stable level in the Blood. You want that level with a minimum of Highs or Lows to keep a stable level of control. (Alcohol will Flush out most of the AED value quicker than most other things you could drink.) G./ (cont'd below) Doctor states that I > now have epileptic activity in another part of my brain (I have an epileptic > history / petit malls during child hood) which may now cause a grand mall. I [quoted text clipped - 6 lines] > PS: Sorry for any dumb questions but I had not been using medicins for 19 > years so I have to get used to that again! G. Anything you took 19 years ago will not have any effect on current stuff. Any Newer meds. with less side effects are available that weren't even available 10-15 years ago. Whatever they use now might give more stable control. (Dilantin --if that was one you started on, is often used first since it's Cheaper, and the side effects are pretty well documented in last 60 years. Tegretol and Neurontin etc. are more recent but still on order of 20 years old? so most of what you might encounter the Pharmacy and Doctors are aware of.) G./ > ***G.*** Those 3 above are Common Triggers for most of our Types of > Seizures. > Note-- If you're taking an Anti Ep Drug and still using alcohol, you > might be **causing some of the seizures. Most of the AEDs are compromised > or interfered with by alcohol use. No, I will probably never drink any alcohol anymore (I know that is a little bit too strict). I used to drink alcohol without taking any medicines. I learned my lesson now so to speak. > Some of the prescriptions (and from another post I just did to you), > depend on a low dose taken at rate the Dr. says to build to a stable level [quoted text clipped - 3 lines] > quicker than most other things you could drink.) G./ > (cont'd below) Okay, I understand it now. Some blood tests will follow to see how I react, etc., etc. It is too early now to say something though I am definately feeling better already (less stress because I think the medicines help me not to get another seizure, etc.). > G. Anything you took 19 years ago will not have any effect on current > stuff. Any Newer meds. with less side effects are available that weren't [quoted text clipped - 7 lines] > and > Doctors are aware of.) G./ I am using Depakine Chro 500 which does not have that much side effects accoring to the neurologist I spoke too. > > ***G.*** Those 3 above are Common Triggers for most of our Types of > > Seizures. [quoted text clipped - 33 lines] > I am using Depakine Chro 500 which does not have that much side effects > accoring to the neurologist I spoke too. what the doctor said is not necessarily true. it is more likely you won't suffer side effects but because we are all different there is no telling what effects you may experience from taking this drug. pablo > Why did you have the EEG in the first place? Have you had seizures (I hate > the word "fits") before? [quoted text clipped - 4 lines] > > If your doctor said this, you need to find a new doctor. He? said he had already had an EEG before starting on the meds. The Epileptiform waves the **Doctor** saw gives a better indication of whether he might have a Grand Mal, than someone strange to him, sitting at a Screen. Armchair Diagnoses should be taken as exactly what they cost the patient. I don't think there was enough information there for us to do a 'remote diagnosis'. You might be talking to a 'non-compliant patient' and the only way they'd be sure to take the Dilantin(?) between this EEG and the Next one, is if they were told that the szrs. could get worse unless they took the medications for the 2-3 weeks until the next scheduled EEG. If they do further tests and assume they're taking the medications during the interim, when they're not, they could be told to Increase the dose that was initially prescribed. / G. > You might be talking to a 'non-compliant patient' and the only way > they'd be sure to take the Dilantin(?) between this EEG and the Next one, is > if they were told that the szrs. could get worse unless they took the > medications You dont mean you think it's okay for a physician to lie or exaggerate to a patient to get them to comply with a recommended treatment, do you? > > You might be talking to a 'non-compliant patient' and the only way > > they'd be sure to take the Dilantin(?) between this EEG and the Next one, [quoted text clipped - 4 lines] > You dont mean you think it's okay for a physician to lie or exaggerate to a > patient to get them to comply with a recommended treatment, do you? I mean if you're prescribed e.g. Tegretol 2x per day at 10-mg each, but you only take it 1? 2? times in Two days for 2 weeks, then the Doctor does Bloodwork, expecting you will have xxx mgs. per Litre of Tegretol in your Bloodstream and you only have One Third the expected amount, the Doctor will assume your Digestion is Flushing it 3x as fast as someone 'normal' (i.e. based on an **Average person's Metabolism). So he'll Bump your Dose up to 3x the amount he started you on. NOW You're taking 3x the Therapeutic Level that works for **your seizure type. Whose fault was that? The Doctor for reading the Test results? Or you for not taking the First Prescription the way it was recommended? That was what I was trying to refer to when they had a new pill based on the EEG, then they were going to do another (or bloodwork) after 3-6 weeks to see if the seizures had stopped or reduced, and whether adjustments might be needed. G./ > Why did you have the EEG in the first place? Have you had seizures (I hate > the word "fits") before? Because I had a grand mall seizure in february and I constantly kept feeling dizzy. I had the EEG in April and epileptic activity was found then (that may explain the dizzy feeling which caused me to stress a lot from February till April). Problem is that I simply didn't know that epileptic activity was found -I can't remember I passed out for a couple of seconds during that EEG, etc. The question is: how can I tell my neurologist after a couple of weeks taking 1000mg Depakine Chro if I am OK now with the medicins or not without havign the results of latest EEG? > "Furthermore, she stated that when > the next fit will occur, it will be a grand mall so that is why I need to > take the medicines." > > If your doctor said this, you need to find a new doctor. It is an accademic hospital which means an assistant neurologist tells you what needs to be done. > > Why did you have the EEG in the first place? Have you had seizures (I hate > > the word "fits") before? [quoted text clipped - 16 lines] > It is an accademic hospital which means an assistant neurologist tells you > what needs to be done. So you can ignore the earlier posts by others about 'firing your Doctor' etc. You DID HAVE a GRAND MAL already. Then the EEG was run. Now you have medications to take to try get a level of control. After a period they can see if you're getting control without needing a new EEG. (Actually the New EEG might still show the Grand Mal signature, since it's still occurring? but is controlled on the 'outside' with the Medications you are being prescribed. THAT was my understanding of what still happens when we take pills to prevent the seizures. Our MEDICAL People might be able to clarify that-- i.e. whether the szrs. still happen when controlled with pills, but just Don't produce a seizure? ) /G. > You DID HAVE a GRAND MAL already. Then the EEG was run. Now you have > medications to take to try get a level of control. After a period they [quoted text clipped - 6 lines] > People might be able to clarify that-- i.e. whether the szrs. still happen > when controlled with pills, but just Don't produce a seizure? ) /G. Yes, that answers my question. It is controlled by pills but just don't produce a seizure. I can live with that then. That should not be too difficult to understand :-) Thanks (all) for responding. > Hello, > Based on advise from my neurologist, I started taking 1000mg of Depakine [quoted text clipped - 3 lines] > a need to increase/decrease the dose I am taking. She also stated I do not > need to take a second EEG. **** What prompted you to get the referral to a Neurologist and have the EEG? A Seizure or loss of consciousness that wasn't expected? (like those would be expected! :-< ) You've already had symptoms that they wondered might be one of the epilepsy types? So they've started you on the medications based on the EEG (below). So, the question I have is: how on earth is she > going to know if I need to take a higher / lower dose of medicines? Is this > only based on my feedback? *** Many times it is. If you had Drop Seizures or Dizzy spells and auras that prompted the EEG in the first place, those should clear over 2-3? weeks on a medication. Based on your feelings and experiences during this period, they can tell if the medication is now giving you better control, or not. If you still have Seizures or Auras and are *compliant* with the dose level, they will Increase the dose until they get to the Minimum amount you need to get control. (That's why it's important to follow the dosing instructions during this period -- if you only took e.g. half the prescribed amount but were still having auras or seizures, the Dr. will INCREASE the dose, since they assumed you were taking Dose 1, as instructed and it wasn't giving you full control. Pill 1 I tried for Complex Partials we adjusted a number of times over 6-8 weeks, and as my szrs. got worse we turfed that med. (Dilantin) and added Tegretol-- as I indicated above at a **Low Dose, and slowly added more if there were seizures. My seizures got further and further apart as we got to a target level that worked. If it's any compensation, they did Bloodwork to check the Dilantin and Tegretol BLOOD LEVELS. I'm sure your Doctor will Draw Blood if it'll make you feel better about your treatment. :-< G. (***s below) When I had this EEG, I simply did not know there > was epileptic activity going on which may result in a epileptic fit. So, how > can I tell then for sure that the medicines are doing what they are supposed > to do: preventing the epileptic activity? Furthermore, she stated that when > the next fit will occur, it will be a grand mall so that is why I need to > take the medicines. **** What type of seizures were you having before they just did the EEG ? Did she give you a name for it? The ones she's treating you for might Already be Grand Mals. (Any older posts you did except for one ahead of this one, have already expired here on my reader. That's why I don't know if the original EEG indicated what the type of szr. might be.) /G. > Thanks for answering my questions. > Bye, > Marco > **** What prompted you to get the referral to a Neurologist and have the > EEG? A Seizure or loss of consciousness that wasn't expected? (like [quoted text clipped - 4 lines] > types? So they've started you on the medications based on the EEG > (below). No, I really had a epileptical seizure with all clasical symptoms. Most likely the triggers were: Alcohol/Stress/Lack of sleep. These caused me to get another type of seizure in a different part of my brain which neurologist concluded based on current EEG and my childhoods EEG which they still had. > *** Many times it is. If you had Drop Seizures or Dizzy spells and auras > that prompted the EEG in the first place, those should clear over 2-3? [quoted text clipped - 13 lines] > wasn't > giving you full control. That answers my questions then. I am completely following the advise of my neurologist and created a scheme on the fridge. I cannot forget to take a dose, I cannot take an overdose without knowing because the scheme won't match the box :-) I am taking that pretty serious actually. The reason I asked my question is because during the EEG I had in April, there was some activity which surprised me completely because I could not remember I was "out of order" for a couple of seconds. I simply did not know that there was "something" going on in my brain. > Pill 1 I tried for Complex Partials we adjusted a number of times over > 6-8 weeks, and as my szrs. got worse we turfed that med. (Dilantin) and > added Tegretol-- as I indicated above at a **Low Dose, and slowly added > more > if there were seizures. My seizures got further and further apart as we > got to a target level that worked. Okay, I understand. Good for you that you are now on a level which is acceptable for your body, social live, etc. > If it's any compensation, they did Bloodwork to check the Dilantin and > Tegretol BLOOD LEVELS. I'm sure your Doctor will Draw Blood if it'll > make > you feel better about your treatment. :-< G. (***s below) Drawing blood is indeed already scheduled. > **** What type of seizures were you having before they just did the EEG ? > Did she give you a name for it? The ones she's treating you for might > Already be Grand Mals. (Any older posts you did except for one ahead of > this one, have already expired here on my reader. That's why I don't know > if the original EEG indicated what the type of szr. might be.) /G. Let me explain. When I was 10 years old: I had petit malls (in the "sleeping part" of my brain (sorry, I don't know how to translate that in English). You could not see from the outside that I had something. I had just stopped doing what I was doing for not more then 15 seconds or so. After a couple of years, I did not had to take medicins. Then came puberty and I started drinking, I started going out, etc., etc. I never had any seizures untill February (I am 29 years old now). I went on a boat trip where I ignored all warnings of possible triggers (stress/alcohol/lack of sleep) and the next day in UK I got this grand mall type of seizure. Now, the EEG shows epileptic activity in the front part of the brain (again, I am not a native English speaker). >> Thanks for answering my questions. >> Bye, >> Marco |
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