Suggestions for alternative treatments? PLEASE!!!

edepew151

New
Messages
58
Reaction score
0
Points
0
Alright guys, I really need your help and opinions here. I have had partial and tonic clonic seizures for 13 years, and tried tons of meds in even more combinations and doses. If I miss one dose of my meds, I'm guaranteed to have a tonic clonic that day. My new doc was thinking I could have surgery, but it turns out that my seizures aren't coming from any one spot; my entire brain seizes at the same time, so surgery wouldn't do anything. I've already had a VNS, and it did nothing for me. I'm 25 with a 10 month old baby, and I want to have more kids, so I don't think CBD is an option for me because I'd have to stop when I'm pregnant/breastfeeding.
I want to know what alternative treatments you guys have found that really, truly helped to control your seizures. Anything! Diets, oils, meditation, moving to a new state, getting a pet, a new hobby, ANYTHING! I need to be able to take care of my family, and I'm willing to do whatever it takes. PLEASE HELP!
 

Cint

VIP
Supporter
Messages
5,528
Reaction score
10
Points
203
I have retractable E also and had an unsuccessful left temporal lobectomy. I've also tried about 12 meds and had the VNS surgery. The VNS hasn't completely stopped my seizures, but it has helped. On my last visit to my neurologist, we agreed that I have another MRI, so we could see if/where there is more damage. It did show more damage, therefore, my neurologist suggested I try one of the new procedures: 1)Thermal ablation or Laser treatment 2) Responsive Neurostimulation. I am well past child-rearing days, so any of these options are definitely not for me.

Check these websites for more info:

http://www.epilepsy.com/learn/treat...ypes-surgeries/laser-treatment-focal-seizures
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/responsive-neurostimulation
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies
 
Messages
1
Reaction score
0
Points
0
CBD seems to be helping

What studies are you seeing that finds CBD tincture to be contraindicated during or prior to pregnancy? I am skeptical that there have been studies sufficient to state this.
CBD, as I understand it, de-excites the nervous system generally, and brainwave activity specifically.
My ex-husband had an ischemic stroke of medium severity in 2/15. He remains partially disabled but continues to improve. This is another thing not freely shared by neurologists: that improvement continues beyond the "old" windows. At 10 mo he began to have monthly seizures of varying intensity (one sent him to the Emergency Room), with no prior history. They occurred with amazing regularity, one every 4 weeks.
At 14 mo, after hoping they would disappear yet did not, he began taking CBD tincture 1000 mg, slightly <dropper 2 times a day, morning and bedtime. He also uses a mid-day pure CBD spray, sublingual, 2-3 sprays.
The seizures continued on pace for another 9 mo but he stuck with the CBD. Now it has been 3 mo since his last seizure.
I haven't read anywhere that these types of seizures can resolve, yet there has been a change. Keeping fingers crossed.
He has little faith in the established medical community, not that there are no good doctors, but the chances of finding one who offers more than cookie cutter, pharmacological solutions seems low. After reading the side effects of traditional epilepsy meds, he decided to try this first, on his own.
He lives in a medical marijuana state and had no trouble getting his permit.
He also has begun practicing daily meditation and has added anti-inflammatory tumeric to his diet, exercises daily: treadmill walking and stationary recumbent bike. Another thing that definitely seems to have helped is deep, mid-day rest, 30-45 minutes.
Best wishes. . .
 

Porkette

Veteran
Messages
1,762
Reaction score
175
Points
173
Hi edpew51,

You may want to try the cold water therapy that I was doing. What you have to do is take your temperature 3 times a day at the same time and anytime you have a seizure. Write down what your temp was and then take a cold washcloth and put it on your face and the back of your neck 3 times a day at the same time along with anytime you start to feel a seizure starting. By doing this you are calming the neurons down in your brain and it has stopped many seizures for me. Also after checking out the data I kept for me temp. it was noted that my temp was a couple degrees higher right before the seizures happened.
Another thing you can do is try the ketogenic diet which is a diet high in fat but low in carbs and starch foods. This diet has been out since 1927 and it worked good for my cousin who was a pilot during WWII he had tonic clonic seizures but while on the diet he didn't have a single seizure and he flew a lot during the war. I wish you the best of luck and May God Bless You!

Sue
 

Jeanbean

Pillar
Messages
65
Reaction score
2
Points
33
edepew151,
I also have retractable epilepsy generalized seizures and complex partial. I've been on many meds some better than others and many side effects of course. Right now I have a VNS-my second one just recently and take Depakote two strengths, Carbatrol two strengths, and one Neurontin a day. Do you have a epileptologist? I've never tried anything else other than VNS for another type of therapy. I don't have children so can't relate that with that part. I think control of seizures is so important and wish you the best of luck. Jeanne
 

Music36

Stalwart
Messages
379
Reaction score
11
Points
63
Have you discussed NeuroPace with your neurologist? I don't know enough about it to know if you'd be a candidate.
 

edepew151

New
Messages
58
Reaction score
0
Points
0
Thank you so much everyone for your suggestions! I'm very grateful for all your help and input. I have an appointment on Monday the 9th, and I'm going to ask my doctor about done of these alternatives. Hopefully we will be able to find a treatment that works for me! Thanks again everybody! You guys are great!
 

seagull

Veteran
Messages
2,301
Reaction score
2
Points
158
Sue you had operation aswel
I agree with curious what evidence is there about cbd.You lucky curious I would like try same as your husband but I in uk so fat hope Doc and hospital got be licensed unless some bit on here know better if they do and on it pleeeeeeze tell which hospital and what do I ask for in uk
 

Porkette

Veteran
Messages
1,762
Reaction score
175
Points
173
Hi edepew151,

One thing I forgot to tell you that works really good for me is taking coconut oil and putting it on my skin once a day. The coconut oil helps build up ketones in my body which in turn reduces my seizures. I wish you the best of luck and May God Bless You!

Sue
 
Top