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Medical Forum / Diseases and Disorders / Epilepsy / June 2004AED, diets and supplements
Hello, Now I have read some more about the epilepsy topics, I also have some more questions for the gurus of this group. AED seem to cause that calcium levels go down (that may differ per AED). Depakote/Depakene/Valproat, etc. seem to specifically cause this. As far as I know, calcium is needed for the bones, etc. Is it necessary to go out to my local druggist/chemist to buy a a couple of (vitamins) supplements to avoid the calcium levels to go down (which may cause my bones to break more easily). Furthermore, I know someone in my private live having cancer. She was treated with chemotherapy / drugs but this did not had effect because she ate so many grapefruits (as she thought that was healthy while it was not for the drugs she took). For AED, are there some specific vegetables / fruits/ drinks I should avoid. For example, there is a special drink in The Netherlands with the Lactobacillus casei Shirota bacterium which helps you to get a healthy intestine. This is however based on milk which I should prevent because otherwise the AED won't be taken into the blood suffiently (that is what I read on the side note of the prescription). As said, with Depakote/Depakene/Valproat, should I avoid using sparkling water / milk when taking the AED? But when can I drink sparkling water / milk again without being worried about negative interaction with the AED? I used to drink loads of milk during my breakfast with cerials, etc. -that is why. To summarize: 1. is it responsible to buy myself a couple of supplements (especially calcium for the bones)? 2. are there any vegetables / fruits / drinks I should avoid? 3. how much time does AED usually need to get into the blood sufficiently so that I do not have to worry about other foods / drinks, etc. Thanks a lot.  SignatureTake care. Bye, Marco (Comments at ***'s) > Hello, > [quoted text clipped - 17 lines] > 1. is it responsible to buy myself a couple of supplements (especially > calcium for the bones)? > 2. are there any vegetables / fruits / drinks I should avoid? ************************************************ Your Pharmacist could tell you if Your pills are in the Same Family as Tegretol (Carbamazepine). Tegretol should not be used with *Grapefruit Juice. Others are O.K., including Milk, with Tegretol , just not with the acids of Grapefruit. Your Pharmacy or Doctor should tell you what to Take or Avoid with your Pills. When you find out, Post it here so others can Comment or learn from it. G./ *********** > 3. how much time does AED usually need to get into the blood sufficiently so > that I do not have to worry about other foods / drinks, etc. [quoted text clipped - 3 lines] > Bye, > Marco > Hello, > [quoted text clipped - 33 lines] > > Thanks a lot. Apparently Dilantin (the drug I take) can play some role in this bone issue. I don't know how it does that though. I mean, maybe calcium isn't absorbed or perhaps it does something with the bone remodeling ratio (I don't know). It might not be an issue of getting enough calcium (and vitamin D) but an issue of how fast new bone is made compared to how fast bone is lost. They, the doctors, from what I've heard, can't do a blood test for calcium in the blood (to determine bone health) because if the bones leach calcium into the blood, it gives the false impression that the calcium level is adequate. I guess the best way is to do a bone scan. They do have medications to help change the ratio of bone loss to bone gain. Apparently these medications just slow down the loss/gain problem and don't get rid of it entirely (according to my doctor). There are a few places on the web that talk about vitamin D deficiency being the culprit in some people with calcium problems. My doctor had told me to take calcium supplements, but I had some problems with them and had to quit using supplements. It's funny, but if I increase my calcium intake through foods, I don't have those problems. There are two forms of calcium in supplements, calcium citrate and calcium carbonate. Sometimes one form produces less problems than the other form. When they did my bone scan, my hips were okay but the spine was not. The technician said that because I'm overweight, that actually helped protect my hip bones. So exercise and weight-bearing have something to do with bone health. As far as food reactions with Dilantin, there aren't any restrictions at all on food (other medications are a different matter of course). Barb With Dilantin, you need to watch out for foods that contain Phynlalanine, and artificial sweeteners like aspartame. These can lower your threshold. Tom > > Hello, > > [quoted text clipped - 67 lines] > > Barb Barb wrote: >As far as food reactions with Dilantin, there >aren't any restrictions at all on food No alcohol, even the kind some people might use in their cooking. > Barb wrote: > >> As far as food reactions with Dilantin, there >> aren't any restrictions at all on food > > No alcohol, even the kind some people might use in their cooking. Watching out for any alcohol should not be any problem -always watch out for some chocolates. You cannot see from the outside if there is liquor inside. SignatureTake care. Bye, Marco >> Barb wrote: >> [quoted text clipped - 6 lines] > out for some chocolates. You cannot see from the outside if there is > liquor inside. I forgot to add two important words: "FOR ME, watching out for any alcohol should not be any problem". SignatureTake care. Bye, Marco Howdy Dawn! No need to worry about the alcohol used in cooking! When you cook with alcohol there isn't any left in the food by the time it gets to the table. It has been boiled off or burned away! (Don't forget that the boiling temp of alcohol is lower than the boiling temp of water.) SignatureDave ???? http://www.howdydave.com > Barb wrote: > > >As far as food reactions with Dilantin, there > >aren't any restrictions at all on food > > No alcohol, even the kind some people might use in their cooking. > Howdy Dawn! > [quoted text clipped - 3 lines] > gets to the table. It has been boiled off or burned away! (Don't forget that > the boiling temp of alcohol is lower than the boiling temp of water.) That's true :-( But it does give a lovely flavour to some dishes. There's more to wine and beer than alcohol. Mary > > Barb wrote: > > > > >As far as food reactions with Dilantin, there > > >aren't any restrictions at all on food > > > > No alcohol, even the kind some people might use in their cooking. i've quit alcohol, but i take a herbal concotion that is is preserved in alcohol... i don't think its much. youcan taste it, but its not the equivalent of a shot of rye of a couple beers.... should i be careful? phil > Barb wrote: > > >As far as food reactions with Dilantin, there > >aren't any restrictions at all on food > > No alcohol, even the kind some people might use in their cooking. > i've quit alcohol, but i take a herbal concotion that is is preserved in > alcohol... i don't think its much. youcan taste it, but its not the > equivalent of a shot of rye of a couple beers.... should i be careful? > > phil Howdy Phil! Everybody is different! ALWAYS be careful, but "being careful" can also me experimenting (just a tad) to see what is safe for you. SignatureDave ???? http://www.howdydave.com > > Barb wrote: > > > > >As far as food reactions with Dilantin, there > > >aren't any restrictions at all on food > > > > No alcohol, even the kind some people might use in their cooking. > Barb wrote: > >>As far as food reactions with Dilantin, there >>aren't any restrictions at all on food > > No alcohol, even the kind some people might use in their cooking. Yeah, you're right Dawn. I completely forgot about alcohol, but I don't drink alcoholic beverages anyway except for nonalcoholic beer (which has a tiny amount of alcohol). It's just a taste issue mostly for me. I've never been crazy about the taste of alcoholic beverages and my tummy never has liked alcohol either. Barb Barb > With Dilantin, you need to watch out for foods that contain > Phynlalanine, and artificial sweeteners like aspartame. These can > lower your threshold. Huummmffff, as Depakine/Depakene/Depakote seems to cause an increase in weight I now take drinks that contain aspartame. I do not know what is phynlalanine -I cannot find any information on MSN nor on google regarding this but I will watch out for it anyway :-) I take Depakote by the way -maybe that is a little bit different and I also understand that it is not that "black and white" (= Dutch expression which means: not that explicit or something like that). Thanks. SignatureTake care. Bye, Marco > > With Dilantin, you need to watch out for foods that contain > > Phynlalanine, and artificial sweeteners like aspartame. These can [quoted text clipped - 4 lines] > phynlalanine -I cannot find any information on MSN nor on google regarding > this but I will watch out for it anyway :-) G. Try phenelalenine (!!) or some variation like that (that *a might Also be an *e!). Some of the Search Engines accept an 'approximate', then offer you possible alternates when they don't get a hit (if that's what google does too?), making searches easier. It's an artificial Sweetener? that might not affect so many people. I seem to recall that more people (before, Here) were affected by MSG (MonoSodium Glutamate) -- a Sweetener and *preservative (that has a Single Sodium Ion, thus the Mono, vs. DiSodium Glutamate if the chemicals bonded properly?) often used in many foods except at Oriental Restaurants and foods. [ I knew someone once w.o. Epilepsy but who had Food Allergies and couldn't eat MSG. One article I had read back then said the Single Sodium will rob the Second Sodium ion to make the Di-sodium version, and after being eaten, it Grabs the Other Sodium where it can Find it (Usually in the Digestion path, your Bones, or where if finds it --> so from your body.) ] G./ > I take Depakote by the way -maybe that is a little bit different and I also > understand that it is not that "black and white" (= Dutch expression which [quoted text clipped - 3 lines] > Bye, > Marco >Thomas Dalton wrote: >> With Dilantin, you need to watch out for foods that contain [quoted text clipped - 5 lines] >phynlalanine -I cannot find any information on MSN nor on google regarding >this but I will watch out for it anyway :-) Try Phenylalanine, L-Phenylalanine, Aspartame or Nutrasweet. There is a lobby which argues that as it is metabolised to methanol it is toxic. Both of which are true, but in the quantities consumed it's not a valid argument. Phenylalanine is a naturally occurring amino acid, one of the 21 (23?) amino acids making up all proteins, so it's also formed by the hydrolytic breakdown of any protein in digestion, so you may as well ban all protein as well! In fact, in the quantities aspartame is used in 'no sugar added' foods it's still not a convincing argument, but if you drink a two litre bottle of coke (3.5 pints for Imperial adherents) it will give you a headache ...or maybe it just comes from the 90 dB burping? SignatureMalcolm > Apparently Dilantin (the drug I take) can play some role in this bone > issue. I don't know how it does that though. I mean, maybe calcium [quoted text clipped - 24 lines] > protect my hip bones. So exercise and weight-bearing have something > to do with bone health. Thanks for your lengthy input Barb :-) I appreciate that. That is kinda new to me, I mean: weight-bearing protect the bone health? > As far as food reactions with Dilantin, there aren't any restrictions > at all on food (other medications are a different matter of course). > > Barb Yes, and I am currently on Depakene/Depakine/Depakote (I wrote down all well known brand names as we are all in different countries). Will have to talk to my pharmacist then as Gaross is suggesting -they should know this stuff (thanks Gaross). Thanks all! SignatureTake care. Bye, Marco >>Apparently Dilantin (the drug I take) can play some role in this bone >>issue. I don't know how it does that though. I mean, maybe calcium [quoted text clipped - 28 lines] > > That is kinda new to me, I mean: weight-bearing protect the bone health? Yup. Inactivity can also reduce bone mass. >>As far as food reactions with Dilantin, there aren't any restrictions >>at all on food (other medications are a different matter of course). [quoted text clipped - 5 lines] > to my pharmacist then as Gaross is suggesting -they should know this stuff > (thanks Gaross). That's always a good idea. Barb > Thanks all! This is what I found regarding the questions I had: http://www.epilepsie.net/engelseversie/voetselnietnemeneng.html SignatureTake care. Bye, Marco A good article. Thanks! (Only second one I've found that mentions the Grapefruit Thing with Carbamazepine (and some other AEDs), among other things to watch for.) G./ > This is what I found regarding the questions I had: > http://www.epilepsie.net/engelseversie/voetselnietnemeneng.html [quoted text clipped - 3 lines] > Bye, > Marco Hello, Sorry to start up an old thread again but here is some more information that will certainly apply to other AED's as well: http://www.crazymeds.org/depakene.html I cannot understand why my neurologist did not tell me that I should watch out for drinking too much milk as I indeed drink much of it. The question is of course if this also applies for other milk based products which I eat as well? In the side letter of the meds, there is no sign of drinking too much milk / eating too much milk based products as well???? Here is the section: There's not much that I know of that you can do for your liver. Oh sure, there's that wonderful milk thistle (silymarin) and the amino acid NAC. There are just two big problems with those: a.. Like any supplements you don't know if you're getting the real thing or not. b.. When you do get the real thing, they work. They work too well. Milk thistle extract has been used to save people who have eaten the wrong type of amanita mushroom. So what does that mean to someone taking a med like Depakene that is heavily processed by your liver? It means that the milk thistle and NAC flush the Depakene out of your liver before it gets metabolized! So, yeah, your liver gets cleaned out all right, and your Depakene doesn't work! There has been one double-blind study involving silymarin and Haldol [1] indicating that, yeah, the milk thistle helped prevent liver toxicity, but at what cost to the efficacy of the psychiatric meds? The doctor who is treating me for environmental sensitivities who had me taking the milk thistle and NAC advised me to stop when I began a course of psychiatric meds, otherwise I'd just have to take more meds, and that would be counterproductive. SignatureTake care. Bye, Marco > Sorry to start up an old thread again but here is some more information that > will certainly apply to other AED's as well: [quoted text clipped - 7 lines] > > Here is the section: [...] This is about "milk thistle", not milk... I'm wondering for myself what the interaction results are like for Depakote (Elivil) and aspirin-like things - I had 8 great days, then a relapse after taking Naproxin - and a bit of trouble after taking Ibuprofen (I take a baby aspirin daily, also...). --DR > [...] > [quoted text clipped - 6 lines] > aspirin daily, also...). > --DR I thought it was just "milk" (which you can drink so to speak). After searching on google, I was able to translate it correctly BUT if you read "Partial Seizure Disorders Help for patients and families" written by Mitzi Waltz on page 132 then I am still correct in my assumptions that my neurologist should have told me to avoid taking milk. I now quote directly from the book (which is a MUST read for everybody cooping with epilepsy including family, partners, etc.). Depakene (the same applies to Depakote which is one page later by the way): <snip> Known interaction hazards: Do not take Depakene with milk, and avoid taking Depakene with charcoal tablets when taking this drug. Side effects may increase if you use anticoagulants, including aspirin; non-steroidal antin-inflammatory drugs; erythrom....... <snip> Today I did not take milk for my breakfast and guess what? I did not fell dizzy nor did I had any other side effects :-) So, to summarize: I was about to say to my neurologist at the end of June that my current dose of Depakene did not prevent feeling myself "dizzy" / "strange" / "feeling disoriented" / "feeling that the room is tilting or revolving" / feeling lightheaded, etc. (which may be an aura because this cannot be a side effects of the drug). Because of this, she may want to increase my dose while this is not really necessary. I read in the same book that it is OK to take Ibuprofen in stead of aspirin -cannot remember the page and I am not certain anymore but aspirin is not really good for you when using Depakote / Depakene. Cheers, SignatureTake care. Bye, Marco |
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