Alternative options for epileptic

[Turbo051]

Hi names james 25 years old had seizures since the age of 13 due to brain tumour as a child with follow up kemo and also radiation,

They put me on meds tegeratol and lamictal and im still having them, the docs have just kept uping my dosage over the years and im at the point where im having 1-2 every 8-12 months witch may not seem like to big adeal but it's really makes it hard on my job and living due to not being able to drive,

My question is whats everyone else on and does anyone have anything natural they've tried and found it works, id be keen to try somthing natural if there's anything you guys would recommend

Cheers guys


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[Nakamova]

Hey Turbo, welcome to CWE!

Many folks here have been interested in CBD oil. It's natural, but it's also like a medication in that the dose and source are important, everyone responds differently, and what works for one person won't necessarily work for someone else. Here's a recent thread on the topic: http://www.coping-with-epilepsy.com/forums/f32/question-anyone-using-marijuana-treatment-27095/

Other alternative approaches include things like diet. There's some general info about them here to get you started: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

 

[Turbo051]

Cheers for that i will definitely have a look thanks


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[K F]

Hi! I am 23 and have had TLE since 14.

My lamictal wasn't doing enough so a chiropractor introduced me to NAET. It stands for Nambudripad's Allergy Elimination Treatment. A book "Say Good-bye to Illness" is informative!
I was really skeptical when I started. I even lowered my lamictal with my neurologist (I could not up my dosage past 175 mg x2/day and I've struggled with many other drugs). Immediately after starting NAET, my seizures lessened!!! They disappeared for 5 months straight--my Drs and I believe a hormonal imbalance are triggering breakthrough seizures. I went from being on 2,3 meds, having multiple seizures on a sometimes weekly basis to the least amount of medication I've ever been on and having less than 8 (less severe) seizures in the last 9 months. Ive never felt better!

Before knowing about NAET, CBD oil would lessen the severity of my limbic seizures; however, w/ the lack of instruction/research, I never know exactly what's best or how much.

In addition to NAET, I have tried Reiki. Again, was very skeptical.Despite having a seizure following my first visit, I strangely felt better afterwards... I have read about reiki being a "double-edged sword" in that maybe it doesn't help OR perhaps having an initial seizure afterwards is your body letting go of energy blockages. I don't know. I personally struggle w/ emotional stress. In my experience, I did not have any seizures after other reiki sessions. Also! I did not tell the practitioner what kind of epilepsy I have, but she felt an energy blockage over my right temporal lobe.
I felt like taking these chances/risks b/c I'm debating of surgery.

I love my Young Living (YL) essential oils. They are therapeutic grade and I think the best. My chiropractor muscle tested me (just like in NAET) to see which oils I was strongest with as some ppl are not and do not benefit. I love Frankincense (helps seizures in dogs, too), Helichrysum, Lavender... YL oils are multipurpose and worth checking out.

I find prayer/meditation (esp. after reading Joe Vitale's books, "Zero Limits") to be helpful, especially when I am stressed and really irritable.

Thanks for posting this question!

 

[Porkette]

Hi Turbo051,

Welcome to CWE! I've found that medical marijuana (cbd) was the best thing that ever helped me with my seizures. I've had seizures for 45 yrs. and had 2 brain surgeries to help reduce my seizures but my Dr. found out I was drug resistant after doing a DNA test on me and that's when I started using CBD. Another thing I do is take vitamin B12 1000 mcg. once a day and put coconut oil on my skin this helps build up the ketones in my body which reduces the seizures and the B12 helps calm my nerves.
You may want to get a DNA test done all the Dr. has to do is take a few tubes of blood and wipe the inside of your mouth with a Q-tip all of this is sent to the lab and the Dr. will be able to see the amount of enzymes in your liver along with your body chemistry and then they can match that up to the best seizure med for you with the least side effect or they will be able to tell if you are drug resistant. If the Dr. tells you they don't do the DNA test they aren't telling you the truth they can do it they just want to push the meds because they are making the money. Just tell the Dr. you will report them to the medical conduct board in your area and then they will do the test. I wish you the best of luck and May God Bless You!

Sue

 

[Turbo051]

Just a quick update i have had 3 seizures in the past 6 months witch may not seem like a lot to some but its is for me as i went years without one, ive been on tegtol since day one and theyve just been uping and uping it then i started on lamictol aswell but it didnt seem to work.

My question is i went to see a nuroligest to see if we can get to the bottom of it and mentioned that id been on tegrotol since day one, he is starting me on epilim500 and the goal is to ween me of tegrotol and end goal is to be on epilum and lamical

JUST CURIOUS WHOS BEEN ON EPILUM AND WHAT HAS IT DONE FOR YOU HAS IT WORKED ETC ETC

 

[Nakamova]

Hey Turbo051,

I haven't used epilim myself, my general knowledge of it is that it's one of the older meds and one that's bad for pregnancy because it can cause birth defects.

Epilim is also known as sodium valproate, so I've included CWE threads below that talk about it under both names:

http://www.coping-with-epilepsy.com/forums/f20/any-epilim-success-stories-out-there-21158/
http://www.coping-with-epilepsy.com/forums/f23/epilim-chrono-sodium-valproate-21636/
http://www.coping-with-epilepsy.com/forums/f20/sodium-valproate-keppra-any-other-advice-22058/
http://www.coping-with-epilepsy.com...ke-shaking-hands-while-valpro-lamictal-20988/
http://www.coping-with-epilepsy.com/forums/f23/epilim-sodium-valproate-three-times-day-18862/
http://www.coping-with-epilepsy.com/forums/f23/epilim-sodium-valproate-three-times-day-18862/
http://www.coping-with-epilepsy.com/forums/f23/epilim-major-lack-sleep-4610/

 

[Andrew]

...and put coconut oil on my skin this helps build up the ketones in my body which reduces the seizures

You may find the following interesting:

The Ketogenic Diet and Brain Metabolism of Amino Acids: Relationship to the Anticonvulsant Effect

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4237068/

Note: In the above article 'aspartate aminotransferase' and 'glutamate decarboxylase' are mentioned. Both are PLP dependent enzymes.

https://enzyme.expasy.org/EC/2.6.1.1

https://enzyme.expasy.org/EC/4.1.1.15

PLP = Pyridoxal 5'-Phosphate (the active form of vitamin B6)

https://bmcbioinformatics.biomedcentral.com/articles/10.1186/1471-2105-10-273

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

I haven't used epilim myself, my general knowledge of it is that it's one of the older meds and one that's bad for pregnancy because it can cause birth defects.

https://medlineplus.gov/ency/article/002092.htm

http://www.gosh.org/what-we-do/rese...MImryI7PXL2QIVBuAbCh2xOA-nEAMYASAAEgIZ4fD_BwE

Also be aware that folic acid can interfere with some Anti-epileptic Drugs:

https://www.epilepsy.org.uk/news/folic-acid-during-pregnancy-and-risk-birth-sefects

https://www.epilepsy.org.uk/info/daily-life/having-baby/planning

And:

Vitamin B3 could help prevent birth defects

http://www.sciencemag.org/news/2017/08/vitamin-b3-could-help-prevent-birth-defects

I have had B6 Dependent Seizures for over 47 years. I have had a genetic test and 'PNPO Deficiency' has been confirmed. My seizures (many different types) are drug resistant.

Certain rare vitamin-responsive inborn errors of metabolism may present as neonatal encephalopathy with anticonvulsant-resistant seizures.

http://cgmj.cgu.edu.tw/3301/330101.pdf

My story: http://www.coping-with-epilepsy.com/forums/f23/40-years-vitamin-b6-11674/

Vitamin Dependent seizures are extremely rare. Vitamin Deficiency (due to poor diet, drug interference...etc.) is different.

see page 3 of the following URL:

In patients with PDS, pyridoxine-deficiency is not present, and it is important to point out the distinction between pyridoxine-dependency and pyridoxine deficiency to parents, therapists, teachers and others providing care to these patients.

http://cgmj.cgu.edu.tw/3301/330101.pdf

 

[resaebiunne]

JUST CURIOUS WHOS BEEN ON EPILUM AND WHAT HAS IT DONE FOR YOU HAS IT WORKED ETC ETC

I've never heard of "epilim" but I have heard of it's much more common names "Depakote" or "Valproic acid". Depakote works well for me in combination with Topamax. This combination is the only combination of meds that works to keep my seizures under control.

I will warn you, Depakote has caused me major weight gain when taken on its own. I gained nearly 50 pounds last year from a maxed out dosage of Depakote. This does not mean that weight gain will be an issue for you.

 

[Turbo051]

O ok yeah ive read about the weight gain etc, I finally got to a specialist after fighting with my doctor for so long
I know of 2-3 people that are on epilum and has worked wonders for them so when
He started reeling off names of aulternative medication I questioned him on epilum.

I know everyones differnt and some things work for some people And some dont but i had to change meds so why not change to something ive had recommended to me by afew differnt people, so between lamical and epilum im hoping it will do something positive

 

[Nakamova]

Everyone's different so hopefully you'll have a good reaction to the new med. A lot of people hate Keppra, but I know someone for whom it has worked perfectly, without the mood side effects. Someone else I now has been on phenobarb her whole life -- most docs would recommend against that, but it works for her just fine, and there's been no reason to switch.

Good luck!