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pdl1
Possible cure for absence seizures
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I am an MD. My daughter suffered from temporal lobe partial absence seizures from age two. Many medicines helped but none were fully effective.Based on an article on congenital defects in lipid metabolism, I had the flash insight that maybe seizures are related to an inborn ability to form just the right kinds of fatty acids in the brain- since brains are almost entirely formed by conglomerates of proteins and fatty acids.So I started my daughter on Omega-3 fish oil from Costco- two a day. From the day she started the fish oil capsules her seizures stopped. She had been having 2-3 per week, often more.It has now been six months since her last seizure, so I feel confident that there may be merit in this treatment. I don't know how widely it applies in the community, but fish oil seems safe.This is called an "anecdotal report". It is just one case and it is possible that my daughters seizures just happened to disappear the day I began the Omega-3 fish oil.
Recent Comments on this Discussion
The success obtained with omega-3 confirm my hypothesis on the role of neuroendocrine system and intesine in the pathogenesis of epilepys. I'm a chemistry who work since 1981 in a neurological cliinic of university.
Recently I had write a paper (medical Hypotheses, 2008), suggesting thaat there are not the ketons the responsable of anticonvulsant effetc of ketogenic diet, but neuropetide y (NPY). In fact NPY is stimulated by, stress, i.e. starvation, used at Biblcal time to control seizure, intestinal nutrients as fats, ketogenic diet and your omega-3, medium chain tryglicerids, MCT diet, serotonin and tryptophan.
NPY is an endogenous anticonvulsant, as it's showned by many studies on it.
SSRIs antidepressant drugs increases intestinal serotonin, it's explain their anticonvulsant effects (Their were considered pro-convulsants, but our paper demonstred that they are anti-convulsants). Also antiepileptic drugs increase intesinal serotonin.
With the aim to confirm it we had registered a food supplement (Serplus Giofarma srl, info@giofarma.it) containing alpha-lacatlbumin (ALAC), a whey protein rich in triptophan and poor in the other large neutral amino acids competing to it to intestinal absorption and to cross blood brain barrier.
The results obtained both in clinical studies and in animals allow to ALAC to enter in the screening program of NIH.
How do I figure out the dose of fish oil that I should be giving my daughter. She is very drug sensitive, the first two medications had too many side effects and I would like to give the fish oil a try. Can you(anyone) help? She weighs 71 pounds and suffer only form absence seizures, but many a day when not on medication.
Hi,
Try fish oil from Nature Made (1200 mg/day capsules) and coenzymeQ10 from nature made (1 a day). After reading this forum, I have started taking them. Havent seen any drastic difference in my health status, because seizures were pretty much controlled previously by taking a very high dose of lamictal. I have to start experimenting now by slowly decreasing the drug level. I think you should try to give your kid fish oil capsules, coenzyme q and the medicines she is currently taking and see whether there is any difference. lf not go to someother physician and tell him/her to prescribe a higher dose or may be try a different drug. Most important, try to create a stress free environment around her. Take care.
Thanks, I actually started her on 600 mg a day, we are doing the liquid, wow does it stink. She is decreasing her depakote now, she is on 1/2 the dose that she was a week ago and I have not saw a seizure yet ( she has absence , so there are usually many a day when not on meds). So I am hopefull that this is going to work, we have also been back to the neuro and have topamax (We said no to Lamictal, too many scary side effects) that we are suppose to be adding this week, we may just wait and see how this all goes with getting off the depakote first.
[...] we have also been back to the neuro and have topamax (We said no to Lamictal, too many scary side effects) that we are suppose to be adding this week, we may just wait and see how this all goes with getting off the depakote first. [...]
Hi,
I too used to take depakote (sodium valproate) and tegretol (carbamazapine) several years ago. One of the most problematic side effects was hand tremors. The Dr. told me it is one of the side effects of sodium valproate. So I started taking lamictal only. I completely removed carbamazapine and sodium valproate. However, I still had hand tremors. So I started taking inderal (propranolol). Hand tremors are still present, but they have definitely decreased. My main problem is lamictal. I take 900 mg – that’s a super high dose and it effects my thinking ability – makes me mentally sluggish. So I want to decrease it somehow.
If you don’t mind, can you tell me what was the dosage of valproate and other drugs your kid was taking before you halved the dosage of valproate. At what times in the day was she taking the drugs? Was it with food or without food? Is she taking fish oil at a specific time in the day or at the same time as she is being given depakote? Which brand of fish oil is she taking? Is she on a special diet? I am a vegetarian and have a high carbohydrate diet. Sorry too many questions, but I just hope the answers you give me will help me in decreasing my medicine uptake. Thanks
Dear all,
Currently, I am taking 900 mg of lamictal !! I also take 160 mg of inderal (to decrease the tremors caused by lamictal). I recently completed my Ph.D. studies. It took me 8 years to complete it. Normally, students complete it within 4-5 years. I think the very high dose of lamictal that I am taking has made me mentally very sluggish.
Now, I want to start working as a postdoctoral scientist. I am afraid that my employer will not tolerate things going slow and I will loose my job. I want to some how decrease the amount of lamictal to something like 200 mg so that I will be able to think faster. Can you all tell me the type, amount and brand of fish oil that works for you all? I want to take the same oil and the same amount to see whether my seizures go away.
Thanks
I am writing in response to pdl1. I read your comment and immediately started my 8 year old son on the Fish Oil caps as well as Flaxseed oil. He was having 7-10 Complex Absence seizures an HOUR! He is taking 3 different medications for the seizures and 2 medications for mood disorders which I believe are caused by the seizures. He has been struggling in school and the past 4 years have been a nightmare trying to get meds straight and Doctors to listen to me. He has tried 5 other medications and nothing has worked. The day after I started the two oils he only had 4-5 the whole day! The next day he had 3-4 and everyday he is having fewer and fewer. I was hoping you could contact me via email, I would like to ask some questions about your daughters progress as well as if she is still taking her meds. I really feel that the oils are helping and would much rather stick with those than all the medications he takes. He takes 720 pills a month! That can't be good for a 54 pound 8 year opld boy. If you could email me, if you even see this, I would really appreciate it. Thank you.
I have faith in this treatment as well, since I've also replaced Tegretol with fish oil capsules. After being on Tegretol for about 3-4 years, I went off the medication after reading about cancer scares and possibly a lower chance of conceiving later on. Two weeks after going off the medicine (at this point I hadn't been taking the fish oil capsules), I had a grand mal seizure; that same night I started taking the fish oil capsules twice a day, and it has now been over a month and I have not suffered another seizure since. It's still too early to tell I guess but so far everything is well, and I have hope for this... and it just goes to show that there are some medical concerns that can be treated without conventional medications.
About subtle inattention in ADHD
http://health.groups.yahoo.com/group/Tartrazine_and_ADHD/
ADHD is not epilepsy.
My daughter has been taking fish oil and eating regular meals of oily fish for the last two years. She went from having numerous partial seizures a week to having none. She occasionally had a simple partial seizure at the time of her period but this didn't affect her life.
Thanks to omega 3 fats she got her life back. She had an outstanding year at school last year and came top in maths and the science subjects.
She is at college now. She has discovered the hard way though that although fish oil has controlled her epilepsy very well, she is still epileptic and irregular meals and chronic sleep deprivation (college lifestyle!) will trigger cp seizures in spite of the fish oil.
BTW none of the epilepsy meds helped her- they seemed to make her seizures worse as well as causing rashes and other side effects. She takes no other treatment now for her seizures except for fish oil.
When I mentioned the wonderful effects of fish oil to her paediatrician he was very interested. He was already a believer in the good effects of omega 3 fats and said he prescribed them for young children with developmental delays.
Not Katie D., but her father. She has partial absence seizures that seem to happed as her period approaches, sometimes one or two and sometimes in groups of 5 or more close together - like within a couple hours. She taks the max of Depakote and has been on taking Omega 3 supplements on our own for several months. Since we started Omega 3, the seizures have reduced to these times approaching her period as opposed to pre-Omega 3 they were scattered throughout the month. Maybe we will add oily fish to her diet along with the supplement and get rid of this once and for all. Thank you for your experiences.
discovery channel recently ran an episode on a man who stuck with a Ketogenic diet and has been seizure free for 5 years, but like anyone I'm sure it depends on the person.
I find I'm questioning the diet programs in schools, my child is 7 in 1st grade. Due to the weight problem of many children here in the state of Alabama( I personally put most of the blame on parents--my own opinion)They are required by state mandate to have no/low sugar and no/low fat meals. It has widely been stated in many medical reports that Nutrasweet/Aspartame is really bad for you. It can cause memory loss and headaches and I've read can cause seizures. Could some of the problems be putting unhealthy man made chemicals in our children? After all, at the time of birth pediatricians recommend formula until at least a year then switching to whole milk due to the fatty acids to increase brain developement... just a thought to ponder.. Tia
In my opinion Omega -3 (farm raised salmon and guarenteed to be murcury free) may not be the wonder drug that cured her it helps. Man has not lived far from water and fish until last century. We are what we eat and ketogenic diets are advised for children with epilepsy. I had absence seizures as a child but they began again in my forties. Please also read about CoQ10 to accompany the fish oil. I am small and I take 50mg. I have read a lot but advice shortens your search. The co-enzyme works in the cerebral flid and is capable of breaking down the debris left behind by neurons damaged by the seizure. From my first hand knowledge I am positive that it has helped. Just remember to read about famous people with epilepsy because I know it is a gift with challenges.
So epilepsy is a "gift" ???
It is "a fact of life".
'E' exists and some have it.
(Just like 'some' people are short... etc)
E is only a gift in that it enables me to relate to others who have the same experience; but, aside from that, it is no more a gift than my height.
A very small % of 'all' people are gifted.. and it is not 'part' of (or exclusive to) epilepsy.
~sol
Hi, my neuro also recommends a theraputic dose of Folic Acid. I idvide into 0.5 mg 3x/day. I have noticed a clear improvement. I've also benefitted from adding Co Q10 100mg in the morning. Good luck to all- cc
I read this post originally because I saw "possible cure for absence seizures".
I gotta agree with Gretchen and ask, where is the published article.
And, if it is such a solid "possible cure" why are you not talking to other doctors in Canada and the USA to conduct a study - placebo -vs- omega 3, to make it more concrete? Why not get into the research further.
Also, if you are an MD - then, would you not know that every case is different when it comes to epilepsy and seizure disorders?
What is working for your daughter NOW may not work for everyone in general.
Also, think about as your daughter gets older - hormonal shifts may change seizure frequency & the medications she takes may have to change, that's what happened to me.
If I were you I wouldn't use the word "Cure".
Possible 'complimentary' treatment would be a better idea.
Just for nutritional purposes, we eat more fish at my place and we buy milk & chocolate milk that has Omega 3. It's done nothing for me, seizure wise.
For me, having a gym membership has helped the most! Keppra is doing it's job well enough and complimenting Topomax & Clobazam OK, but stress, routine and weather changes still trigger seizures.
It's all about me learning to deal with life.
Either way, I'd look forward to seeing some published information if you ever get that far or find the link, since it seems you didn't write the article.
As a side note, I'm not sure why people gave Gretchen such a hard time. I'm with her - before I consider anything a "cure" I'd wanna know the credentials of the person telling me that.
I know I used to co-assist an MSN group and in that world, if people couldn't back up stating they had a "cure" for epilepsy with a link to a web page OR their credentials, I'd delete stuff. Too missleading for anyone recently diagnosed!
Think about that d1.
For someone like me who's in my 30's and been dealing with this, I think OK - possible alternative, but someone clinging to the hope that a kid doesn't have to be on meds - what are you setting them up for?
Credentials are not such a bad thing OR a link to anything you've written if you're going to mention "possible cure", being a doctor and all...that gives people hope, especially those that don't step back & realize every case is different.
I've been taking fish oil since reading this (about six weeks ago). Have had no auras or incidents but then again my episodes were so very rare to begin with. I am going to keep taking the EFAs and hopefully will never have to go on Keppra or any of that crap.
In away "akepi" here has just proven my point from above.
Now, "akepi" is fish oil the only thing your taking, or are you still following YOUR doctors orders?
If you're only following the orders of a guy claiming to be a doctor on-line, you might want to re-think that. Glad to hear it's going well, but what happens if you build up an immunity to it - or your immune system takes a hit with a cold and some sort of "Keppra, Tegretol CR, Valproic Acid, Lamictal, Topomax, Clobazam, Zarontin, Phenobarbitol, etc...."....true seizure med (FYI: The ones in that list are the 'trial/error ones since I was 5, so they're the ones I know most).
Anyways, like I said glad it's going well, but don't you think maybe one extra seizure med "complementing" that could help confirm you'll stay seizure free.
FYI: Right now, I'm on 3 -- by the middle of next year Topomax will probably be totally replaced by Keppra. Topomax controlled my seizures to 3-4 in 6 mths, but my neuro thinks Keppra can do better. So far, so better. Other things in life have helped as well.
Anyways, if you're American & so is D1 (the original poster here), now it would be really interesting to see your view on wanting his credentials. Who will you blame when that seizure happens, if one does? The medical profession OR the internet world, for not saying "oh ya, just possible" and the day that seizure happens, will you not be slightly annoyed that you didn't confirm this person is a doctor with neurological credentials. As opposed to an MD & a concerned parent. Sarcastic side of me that happens to get a lot of US TV here says could be fun to see the episode of Judy Judy after you call the "Injury Lawyer"..afterall, Injury Lawyers are every other commercial on TV some nights.
Interesting the way people see things, that's for sure.
D1 - does this make you re-think using the word "cure" in a subject line at all?
This is not the only report I have heard regarding positive effects of Omega 3's. And I really DON'T like the things I've read (including on this site) about difficult to miserable side effects, and even worsening seizures, etc. If I can stay seizure free without those medications, then I want to do so for as long as possible. I do not have multiple seizures daily or even monthly. I am trying to weigh risks and effects, etc.
I don't make presumptions about this persons credentials or lack thereof, but have read numerous articles, including the link to Dr. Bromfield's interview listed elsewhere on this site. And I am not following orders from "a guy claiming to be a doctor". I am making my OWN decision based on the information I have. I don't know why you think I should be taking drugs, just because you are taking 3...
http://www.healthandage.com/public/health-center/18/news/716...
Hi akepi,
The side effects listed for each drug are NOT 'typical' reactions (or else they'd have been banned eons ago). To avoid a lawsuit, all drug companies now put every known side effect on their site (even if that side effect only existed once).
All of the AEDs are continually made (supplied) due to a 'demand' ..and the reason that demand exists is due to the fact that, in the majority of cases, the meds work with no hurtful side effects.
(75% of those with epilepsy are perfectly controlled via AEDs)
Yes I take extra vitamins, but I don't depend in them to control me (And I'm sure a manufacturer would have the vitamins repacked and sold as AEDs if such was the proven case)
There are many places online where they will pray for your seizures to vanish too.
IMO that is no answer either.
~sol
I agree with you about the 'typical' reactions, but on the other hand why settle to take meds when there might be something that can help. I'm NOT against meds, but for example my son is on 2 meds and I have worked very hard on finding alternative solutions (diet, minerals, vitemans and acupuncture) to get him off the meds. Doctors in most cases do not agree with alternative methods. Why settle for 'controlled' seizures when there is a possibility to help 'cure' and not have to take meds. My son has seen an acupunturist over the last 9 months and is almost seizure free and here in the next couple of months we are talking about weaning him off of his meds, thats how good it has gotten. regaurdless, these type of meds even if they say there are no side effects, it's still not as good as not being on them or having to take a lower doesage. I do know that this is not always an answer for everyone, but is something to think about.
I am not talking about the side effects the drug companies list. I am talking about the numerous problems people on this site have posted.
I will postpone medication for as long as possible. When I had high blood pressure I didn't immediately take Ziac...I lost some weight, changed my diet and started exercising more frequently. Now my BP is normal. If at some point in my life, I am not able to control the blood pressure myself, then I'll take the medication rather than have a stroke or heart attack.
The same with seizures. I will postpone medicating myself for as long as possible. If I have more seizures, then obviously will have to rethink this, but at this point, I don't see the need to immediately jump on the pharmaceutical wagon.
Hi akepi,
GOOD FOR YOU!!! Keep it nantural for as long as you can. Diet and other things play a huge part in seizure control, I know this because I had to find out the hard way with my son who has seizures. Doctors don't tell you, but I'm figuring it out. Diet, minerals, vitemans and the best has been acupuncture he is almost seizure free because of trying to go natural, and keeping positive on this journey. You go!!!
Akepi: I agree with you. Making healthy changes in our lives can indeed keep us from having to take drugs. At least TRY to improve your health with healthy improvements and natural products. Have you read "Natural Cures They Don't Want You to Know About" by Kevin Trudeau? It's amazing what we can do INSTEAD of drugs to improve our health.
I'm with you! Way to go!
Terri N.
I am very interested in these two articles as well:
http://www.medicalnewstoday.com/medicalnews.php?newsid=25937
http://www.medscape.com/viewarticle/509217
The results of several studies suggest for those with infrequent seizures there is little to gain in the long-term from starting medication immediately.
Hi There,
A few interesting things taken from your first article that I wonder about:
Quote # 1 (and yes this is your article)
" those with early epilepsy and infrequent seizures."
Please define this for me. They certainly don't - which tells me their stats sucked or they want to mislead people who are on the border. Is one seizure a month infrequent? 1 a year? Let's ask pd1 the MD. I have 3 in 6mths, to my neuro that's still kinda frequent. What does pd1 think? Hmmm and what are pd1's credentials to back that?
Again quote # 2:
" patients with few or infrequent seizures" (still not defined)
maybe you fit into this category, but by my neuro I and many do not - so, don't always claim you have a cure for people like ME
AND sorry, but your "MEDSCAPE ARTICLE" I can't access, I'd have to join, not worth my time when you could've attached it.
So, maybe for "infrequent" seizure (to be defined...perhaps pd1 here has a definition) Omega 3 is an ALTERNATIVE treatment, but don't claim it is something that can be used as a replacement for medication for someone with frequent seizures & that it is a cure for abscense seizure. It is not. I know people who have multiple seizures in a day, they certainly don't fall into the category of "infrequent" your article that I could access claims. Complementary Treatment, perhaps I've been told that myself. As a cure? Hmmm..there isn't one from what I've been told. Then again, watch Exorcisim of Emily Rose - you'll wanna take Gabitrol. HA!
As my neuro says - seizure disorders and epilepsy are unpredictable.
Just don't mislead people newly diagnosed with FREQUENT SEIZURES that Omega 3 is a cure. Take it for what it is - an alternative that might help for most. If your seizures are that INFREQUENT (to be defined!!!) who knows, odds are doctors might hold off on meds OR put you on 'em for a glimpse in time then take you off when they know your OK.
For someone like me (oh wait...I guess mine are infrequent, hmmm...guess not), Omega 3 might not be the answer?
Side not to the person taking Folic Acid...Acid - I take that now not for seizures but because my boyfriend & I plan on getting married within 2 years & want to have kids - all women are supposed to take that pre-pregnacy they just want me taking way more! It's done little for seizure control.
Nice to know I'm infrequently stressed & have been since early Sept., so I think I just found a great cure for stress - join a gym! Then again...what is "infrequent"
People really don't define things do they??....I work in a world where rule # 2 is "NO GUESSING".
The first article link (that I can access), the orignal post (a person who won't provide credentials) and more leaves so much room for guessing and speculation! People want to call Omega 3 a Medication when it isn't a drug it is an Alternative!! Read your own article - it even says so See quote:
"where they received no drug until they and their clinician agreed treatment was necessary."
(so you're taking Omega 3 - it's a vitamin, not a DRUG, not a MEDICATION).
My issue is the original subject of this post is "Possible Cure for Absense Seizures" and it's in the MEDICATIONS section.
Step up and Claim it's not a MEDICATION & don't treat it like it is one, even your own research indicates placebo or no drug.
Interesting?
http://www.medscape.com/viewarticle/509217
sorry - works for me
Hi Akepi,
Hopefully you can keep up the trend of thinking you're a doctor, treating yourself and having things work out for the best for you.
I for one think I'll stick with seeing a neurologist/epileptologist, following his orders and picking up some "COMPLIMENTARY" treatment and advice along the way.
No offense, but your logic to me sounds almost like that of my stubborn grandfather's.
He kept thinking he just had a stubborn cough. Finally my dad took him to a doctor, who sent him to a hospital where he found out he had lung cancer. He faught doctors all the way on high level treatments, thinking inhalers and cough candy's were enough.
Gee, by the time he wanted surgery (what they recommended on day 1) he was too weak for it. Wasn't long after that, and he was no longer living. That was around the beginning of 2006.
Being close to my family & watching the impact of a stubborn grandfather not following doctors orders. Hmmm...think I'll trust medical science more than alternatives to control my seizures - especially since in the great scheme of things epilepsy doesn't control my life & seizures can't kill me.
Here's hoping alternative remedies keep working for you though and you have no regrets, sounds like you're almost as stubborn with the medical world as my grandfather once was.
After all, similar to him thinking of his lung cancer as a cold & that cough candies were all he needed, you're willing to think of Omega 3 as a MEDICATION for seizures when really it is an alternative treatment.
Hopefullly your alternative treatment is more successful.
~ EC
Hi THere,
I guess my issue is that pd1 decided to post this in the section that is called "MEDICATION ISSUES"
And, you're saying this works as if it is a "MEDICATION"
Does no one see there is an area on this website to post "COMPLIMENTARY THERAPIES" (or if you look at the description in there it says details about 'alternatives')
Really that's what this whole thread is about Omega 3.
Omega 3 isn't a MEDICATION.
It's an ALTERNATIVE
And for people to post details in a medications section, implying that it can be taken like one, and act as a "cure" is misleading.
Call it what it is - an alternative treatment.
Where's the active pharmaceutical product to make it a MEDICATION?
That isn't there.
I saw a topic called "Possible cure for absence seizures" In a MEDICATIONS section. I thought there was a better pharmaceutical medication out there than Keppra. Not something alternative.
I've heard of Omega 3 as "complimentary" before, and that's where this post should have gone.
You can't just post something that really has not active drug (ASA, Ibuprophin, whatever), call it a cure & say it's a MEDICATIONS cure on a medications form.
Call it an alternative, and put the post in the right place, so people don't think Omega 3 can truly be taken instead of following doctors orders.
That's my point here.
Put this whole thread under "complementary thearapies" and it makes sense, but to call Omega 3 a medication & toss it in as a possible cure under MEDICATION ISSUES gets people's hopes up, and is really incredibly misleading.
If I were to ever follow this, I have a feeling it wouldn't work for me, and just all the little plays on words in the original post & the section that it was posted in if I were american I'd try to pull of a law suit. After all, buffalo tv is full of 1-800 lawyer stuff.
Like I said, glad it's working for you, I just find it interesting that this is so misleading where it's posted & no one wants any true evidence or credentials.
Wow! Guess no one has been screwed over by doctors and people are too trusting these days.
Perhaps it's the criminology and law/security/internet influence in me.
~ EC
Hi Pdi1,
I'm still trying to decypher your original comment as absence seizures are NOT partials.
Absence are Primary Generalized Seizures
http://www.epilepsy.com/epilepsy/types_seizures.html
Moreover, "In nearly 70% of cases, absence seizures stop by age 18" http://www.epilepsy.com/epilepsy/seizure_absence.html.
You may be an MD, but, IMO, you FAIL to prove that the seizures were stoppped by the Omega3 oil, as they may well have just disappeared anyway.
Gads..even Complex Partials (similar to Absence in that the memory is affected) "may be outgrown" http://www.epilepsy.com/epilepsy/seizure_complexpartial.html
You may be a physician, but (like many I've met in my life) you've demonstrated you know little about E.
Had your 'claims' been proven, everyone who used Omega3 vitamins (with whatever type of E you were referring to) would have had similar results.
Omega 3 'may' help (I take it also) but, raising people's expectations is cruel. In my opinion, yours are just unproven claims by a non-epileptologist, so have little merit.
Yet, despite the fact we only have your conjecture that your daughter's seizures were stopped by Omega 3, I am glad to hear they have ceased.
~sol
I feel very grateful about several posts mentioning fish oil,if it wasn't for what I had read I would never have thought to try it on ds. It can't hurt to try,it may very well be a coincidence that my ds stopped having spells since the second day of taking fish oil, but I surely will continue it just in case.
I have just ordered Neptune Krill Oil from DrMercola.com and will let you all know if it helps with my sons complex partial seizures. We are weaning him off of Keppra due to emotional side effects. His first drug was Trileptal and he NEVER ate and had severe stomach cramps. I would rather deal with seizures than the side effects of these drugs. I am thankful to have found the info about fish oil. I know many are skeptical about it, but it is healthy for the body anyways so it can't hurt to try!
I started having grand mal seizures in 2001, I only had 8 GM and now I have ones where I blank out for a min or 2 and when I come out of that I have a headache and feel very anxious and tense, I really have to have a positive mind set when this happens or I think I would lock myself in the house and never go out again, I started Omega 3 fish oil today, I have read a bit about it and it makes sense, I was wondering How long does it take before you start feeling a difference, I hope this will work, I am 38 years old and have also weaned myself off of zoloft I have asked my doc for some support in taking the natural approach, and my last appointment I asked her about vitamins and minerals, and she said to me I don't know Kelly your the expert, I'm just your doctor and your not listening to me. I don't want to be on all this medication that doesn't seem to help and also I can't afford it, anyone ever gone threw this with their doc? It made me loose alot of respect for her
if anyone would like to email me feel free kelly411_39@hotmail.com
Let's support each other and we will get threw this.
thanks Kelly
I wanted to add a comment. I emailed my daughter's neuro today asking if it was safe to give her omega 3 fish oil in addition to her medicine (zarontin) and he answered back that it was so I started giving it to her today. I am super excited and wanted to let everyone know that my doctor ok'ed it.
I see that it has been along time since you have written this blog but I am very curious in the fish oil. Your blog caught my eye because of the fact you mention your daughter was taking Zarontin. My son is on that now...so far no decrease activity in seizures. Looking into the fish oil treatment...possibly. Thanks
kelly
- I have started the fish oil. I am interested in how you are doing. I am afraid of all the side effects people here have mentioned with Keppra and other drugs. I don't want to start taking them and have things worse than they are now or possibly go through all kinds of problems when I try to stop meds. The doctors seem more and more like drug pushers to me. I find myself not wanting to trust this doc and try to find another that is more interested in trying alternatives and not immediately pushing an expensive prescription on me.
Since my seizures have been so infrequent and nocturnal, it will be difficult to determine how quick or how effective but it is worth a try and certainly can't hurt me.
Good luck to you.
I haven't been able to find a Doctor (that my insurance will cover) that has the slightest interest in alternative medicine. They only want to treat my problems with expensive drugs. The reason I say problems instead of just seizures is because having seizures hasn’t been my problem for over 7 years (I stopped having seizures when I started taking Lamictal (which may be causing my current problems). After over 2 years of telling Doctors that something was wrong with me, because I had a lot of burning, numbness, tingling, aches and pains (my Neurologist said it was all related to stress and told me to take Paxil), in November of 2003 I was diagnosed with an Autoimmune Disease (the Doctors can’t tell me exactly what it is (I don‘t have the extreme fatigue or any other major symptoms. But, since my blood work shows that I have a disease, they are giving me medicine that is used to treat lupus). I have been trying to figure out what has caused my disease and how I can treat it naturally, without the toxic drugs. And, recently, while researching Autoimmune Diseases I found quite a few articles on Anti-seizure Drugs inducing Lupus and some of those articles mentioned Lamotrigine (Lamictal)…. When I started having all of my problems (which was probably 6mos. to a year after I started taking Lamictal) I told my Doctor that I thought the Lamictal could be causing my problems and he assured me that it wasn’t the Lamictal. And, since Lamictal was controlling my seizures I didn‘t really want to pursue it any further….
So, now that I know that there is a chance that Lamictal is causing my problems, I have started researching how I can control my seizures without Drugs. Last week I decided that I would probably start weaning myself off of the Lamictal on October 23 (after I see my new Neurologist). Today, after my research, I have decided, for sure, that I am going to stop taking the Lamictal no matter what the Neurologist says. I was considering switching to another drug, Neurontin (because I think it has the fewest side effects and it was one of the drugs that wasn’t mentioned as inducing lupus), but now I think I will first try to wean off of the Lamictal totally and see what happens. Reading everyones comments on the Omega 3 gives me more confidence and hope. Even if the Omega 3 doesn't prevent me from having seizures it will at least help me handle the stress if I do start having seizures. I know this from experience. For the past few months I have actually been making sure I get plenty of Omega 3 and B12 by drinking a smoothie (with flax seeds, soy milk (with Omega 3 and B12) strawberries, bananas, and kale (I used to use spinach)). I feel a lot better even though I still have some pains (hopefully they will go away after I stop taking the Lamictal). On the days that I don’t have my smoothie I can tell a difference, especially mentally.
I was debating if I should say anything about anti-seizure medicine inducing lupus, because I don’t want people to be afraid to take the drugs that can control their seizures (which, I know, will make life so much easier). But, I do think that people should be aware, because if someone is diagnosed with lupus they need to know that instead of taking the toxic drugs to control the Lupus, there is a possibility that all they have to do is stop taking their anti-seizure medication and they can be cured. http://www.lupus.org/education/brochures/drug.html#11 explains Drug Induced Lupus.
I am praying that when I stop taking Lamictal that I will be cured from my autoimmune disease and seizure free (with the help of Omega 3). Then, I can share my success story with everyone!
Feel free to email me: Angel_grover@netzero.net
Angel: You sound like you have done your homework and have some good ideas on improving your health! I am on Neurontin and don't feel (I think) I'm having side effects. I do have memory issues and am also taking fish oil (I take 1 teaspoon 2X day of Carlson's Cod Liver Oil from Norway (tastes good too) can be found in health food stores refrigerated, and B-6 for brain, B-12, B-Complex, among other things.
I think we can all take advantage of improving our health with natural food and products, rather than just relying on drugs. I, too, am looking forward to the day I can wean off Neurontin and continue a seizure-free life.
Hugs and good luck. Keep in touch.
Terri N.
MICHELLE FRICKMAN
MASON'S MOM
I JUST VISITED THE MY.EPILEPSY.COM WEBSITE AND YOUR QUESTION CAUGHT MY ATTENTION. MY SON, MASON, WAS DIAGNOSED WITH ABSENCE SEIZURES RIGHT AROUND 24 MONTHS OF AGE. HE HAD A SERIOUS FALL DOWN A FLIGHT OF 8 STAIRS AT HIS GRANDMA'S HOUSE. HE NEVER BLACKED OUT, BUT THAT IS WHAT WE BELIEVE STARTED HIS SEIZURES. THE CAUSES OF ABSENCE SEIZURES VARY FROM A HEAD INJURY, HIGH FEVERS AS AN INFANT, TO OTHER THINGS. WITHOUT KNOWING YOU OR YOUR CHILD. YOU CAN GET TO KNOW ME AND MASON BY READING MY BLOG. AND FEEL FREE TO CONTACT ME VIA MY EMAIL OR BY THIS WEBSITE.
Hi I am new to this but found this site intersting. My daughter has seizures, had them when she was 3 out-grew them at 8 and started a new kind at 10, it took 3 diffrent doctors and 21/2 yrs to dertermin what kind she is having now. Durning that time I also tried many things including the oils and it did help her to have less (18 a month to 8) but the severity got worse and since jan. she is about to start her 6th med.she reacts badly to almost everything or they didn't work. Since she was 3 there has been 2 meds. that work zerontin and tegretol, she is now going to try carbatrol (extended release) cause she stays tired...anyway I'm glad the oils work for your daughter...
Anna
Hi, my son started taking Omega 3 fatty acids on 5/27/05 and has only had one seizure and that was on 6/1. We're on our 20 day and we're so excited. See he was having seizures about every 2-5days and having them for 3-4days. We give him 2 in the morning and 2 afternoon. He's on b's also and calcium and mag. He's doing great. The longest he's ever went was 29 days in 7 yrs so I'm praying we've found something that will change all of that. We've been lowering his Trileptal also. Blessings to everyone.
No one can say if it will help you or not. But it has for me. But whenever you try something new just make one change at a time, so you know which one helped you. Always talk to your doctor before trying anything new.
Lisa
Epilepsy Approach Support group