Hi, some help please?

[Green]

Hi guys, I have just joined this site after looking for somewhere to go on the internet. Basically my friend has been diagnosed with epilepsy and she wanted me to find out as much as possible about it, what happens, what's the best way to control it, etc. I said I would do it as she is not very good with computers! lol. her mother has suggested trying aromatherapy although my friend doesn't know alot about it.
Anyway, what she basically wanted to know is:
What medication you are on?
How effective is it?
Have you tried aromatherapy?
What have you tried?
Did the aromatherapy work?
Which is better for controlling the seizures; medicine or aromatherapy?
which would you sugest?

I know this would mean alot to her to find out some basics.
Thanks for reading this guys xxxx

 

[Bernard]

Hi Green, welcome to the forum. :hello:

Have a look at these threads:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-myths-992/

AEDs are prescribed based upon the nature of the seizure disorder (the specific type of seizures the patient is experiencing). Not all of them are appropriate for everyone. Even so, everyone tolerates AEDs differently. For people with the exact same seizure patterns, the same drug might control seizures 100% without any noticable side effects or not control the seizures and burden the patient with unbearable side effects (or any combination in between). You can't really judge an AED by how someone else tolerated it. You have to try it yourself to know if it works for you.

Drugs are always prescribed as the first line treatment for seizure disorders. Doctor's first priority is to arrest the seizure activity ASAP. That said, there are some alternatives to drugs which can be explored (see chart linked in my signature).

I searched all over for research studies on aromatherapy for epilepsy when building my chart of alternative treatments and was not able to find anything. There is no scientific support for (or against) aromatherapy for treating seizure conditions (that I could find - I'd be interested if someone knows differently).

There *is* support for (most of) the therapies listed in my chart.

HTH!

 

[skillefer]

Hi Green! Welcome to CWE. You're a very good friend to be looking up this kind of info for your friend. Here's my suggestion....

She needs to start keeping a journal. Have her write down everything she eats and drinks as well as how much and when. Also have her write down how many hours of sleep she gets each night and any stress that she's under. Then, have her write down any seizures she has as well as how long they last. Also have her write down any odd feelings or sensations or deja vu or migraines that she might have. Also, since your friend is female, have her write down the day her period starts. (Some women are more likely to seize around their time of the month. ) After all that, she should cut back on any coffee or energy drinks that she has, as well as alcohol.

As for the meds question, that's a tough one to answer. Epilepsy is as different as the people who have it. For some of us, meds work great, and for others, they only cause more problems. As for which meds, that all depends on what kind of seizures she's having. Different meds work for different types of seizures. The choice of meds is one that she should make with her neurologist. the thing she does need to remember is that it can take several weeks for med levels to reach therapeutic levels (so don't expect a magic pill that all of a sudden takes away all seizures) and that each med has it's own particular side effects. The most common one being getting tired when you first start taking them. Anyway, hope this helped. For more info, check out the threads Bernard suggested, as well as the epilepsy 101 thread in my signature. There's some great basic info.

 

[RobinN]

Hi Green - Welcome

Bernard, there is the theory brought up in [ame="http://www.amazon.com/Epilepsy-New-Approach-Adrienne-Richard/dp/0802774652"]Epilepsy: A New Approach: Adrienne Richard, Joel Reiter: 9780802774651: Amazon.com: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51p9fv6oOYL.@@AMEPARAM@@51p9fv6oOYL[/ame] , that smelling certain smells can turn seizure activity around. I think lavender was what was used in the example in the book. I know it also is considered for migraine therapy as well.

Thoughts can also be used. Pleasant experiences instead of following the dreaded path toward seizure expectation.

So yes I think it has been known to work for some.

 

[dfwtexas]

Welcome! I would first recommend that she NOT listen to her mother, apparently she is like a lot of our family members and doesn't have a clue about seizures!

 

[morgan381]

Hi Green - Welcome

Bernard, there is the theory brought up in Epilepsy:a New Approach , that smelling certain smells can turn seizure activity around. I think lavender was what was used in the example in the book. I know it also is considered for migraine therapy as well.

Thoughts can also be used. Pleasant experiences instead of following the dreaded path toward seizure expectation.

So yes I think it has been known to work for some.

I've read that book & I think there is some validity to it.
I take meds for control & fortunately they have been working very well. However, there have been a couple of times over the past few years, that I began to have an aura...when the feeling started, I used aromatherapy (jasmine & vanilla). The sent is very strong and I was able to abort the seizure activity. I don't know how or why it worked, but it did. Of course, every one of us is different, so what works for some of us may not work for others. Just my :twocents:

 

[Green]

Hi everyone. Thanks for all of your replies. I have been reading up on Alternative therapies after my friend's mother suggested it and came across aromatherapy quite a few times, although obviously I know nothing about it! I read up that some people (with a lot of practice) are able to link smells with relaxation which helps them.

Have any of you tried aromatherapy to help with your seizures? If you don't midn me asking.
Thanks again for replying. :yippee:

 

[dfwtexas]

Is your friend taking medication for seizures? Is your friend not getting assistance from their doctor on medication? I am on Keppra and it has really helped, no seizures in 3 months/3 weeks! Personally, I would never rely on smelling something...by the time my seizures start, I don't have time!

 

[skillefer]

jgb has an excellent point. Not all of us get auras. I for one don't. I have no warning. One minute everything is fine the next, I'm staring at the ceiling. For me, aromatherapy probably wouldn't work. For others who get auras, it might help, but I wouldn't count on it alone. If your friend truly wants to stay away from meds, then she needs to look at some of the alternative more closely, such as dietary changes and vitamin supplementation, and EEG neurofeedback.

 

[epileric]

Re. Aromatherapy

Hi Green, welcome to the forum.

I searched all over for research studies on aromatherapy for epilepsy when building my chart of alternative treatments and was not able to find anything. There is no scientific support for (or against) aromatherapy for treating seizure conditions (that I could find - I'd be interested if someone knows differently).

HTH!

I"m not sure if I should have started a new thread in the library for this post but according to "The Encyclopedia of Aromatherapy" By Julia Lawless lavender & clary sage are supposed to be anti-convulsive and Rosemary is supposed to be avoided by epileptics.

Also when I was in massage college one of the teachers gave me a printout by Dr. Tim Betts of the Birmingham University Seizure Clinic. He claims Ylang Ylang, Chamomile, Lavender & Jasmine may be helpful & that Rosemary, Hyssop, Sweet Fennel & Sage should be avoided by epileptics. I'd never heard of Tim Betts before (& still don't know much about him) but he seems to have done a lot of research with E & aromatherapy

http://download.journals.elsevierhealth.com/pdfs/journals/1059-1311/PIIS1059131103001614.pdf

http://www.aromacaring.co.uk/bettsepilepsy.htm


http://www.essentialoils.co.za/epilepsy-research.htm

 

[Bernard]

Thanks Eric, those are good references. :mrt:

 

[epileric]

Thanks Eric, those are good references. :mrt:

My pleasure, Bernard. :doctor:

 

[Meetz1064]

Hi there

and welcome to CWE! Um, I have to agree with the other posters, perhaps mama needs to stay out of this one.

Actually, now that Eric has put those links in, I do remember knowing that those herbs mentioned are ones that we are and are not supposed to use. But, I don't remember where I read it.

Your friend--and bless you for doing the research--really does need to keep a journal, and she does need to go see a neurologist for a thorough evaluation. That would include an EEG, and possibly an MRI.

Personally, I am on Carbatrol and Topamax...and they work well for ME. But, as Mr B pointed out, EVERYONE is different. I also, however, use the GARD diet, too. Between my meds, and the diet, it has been over 5 years since an uncontrolled seizure. (Not to due missing meds, screwed up sleep cycle, etc).

Where I have tonic clonics (grand mals) your friend may only have simple or complex partials. Everyone is different....there is no one specific, standard treatment. Man, wouldn't it be nice if there were?

Take care!

Meetz
:rock:

 

[Green]

I have passed on all of the advice you have given me and she is rethinking the whole aromatherapy idea now, so thanks! She said thank you for your help too xx

 

[epileric]

Aromatherapy Contacts

I"m not sure if I should have started a new thread in the library for this post but according to "The Encyclopedia of Aromatherapy" By Julia Lawless lavender & clary sage are supposed to be anti-convulsive and Rosemary is supposed to be avoided by epileptics.

Also when I was in massage college one of the teachers gave me a printout by Dr. Tim Betts of the Birmingham University Seizure Clinic. He claims Ylang Ylang, Chamomile, Lavender & Jasmine may be helpful & that Rosemary, Hyssop, Sweet Fennel & Sage should be avoided by epileptics. I'd never heard of Tim Betts before (& still don't know much about him) but he seems to have done a lot of research with E & aromatherapy

http://download.journals.elsevierhealth.com/pdfs/journals/1059-1311/PIIS1059131103001614.pdf

http://www.aromacaring.co.uk/bettsepilepsy.htm


http://www.essentialoils.co.za/epilepsy-research.htm

I was reading a download from Faces (Finding a Cure for Epilepsy) & found these two addresses & numbers under aromatherapy.

Tim Betts, MD
University of Birmingham Seizure Clinic
Queen Elizabeth Psychiatry Hospital
Birmingham, B15 2QZ, UK
Phone: 011(44)1216782366
Fax: 011(44)1216782079
Email: t.a.betts@bham.ac.uk

Beth O’Boyle, CH, BFRP
Hudson Healing Arts, LLC
Holistic Center
51 Newark Street, Suite 403
Hoboken, NJ 07030
Phone: (201) 653-7700
Email: admin@hudsonhealingarts.com
www.hudsonhealingarts.com