Epilepsy Community

Hello momskidding,

I ain't a Dr, but, I've heard enough to Know these are 'normal' side effects that Should diminish disappear w/in 4-6 weeks, But, Itching is a Serious side effect. Not to be taken lightly by Nurse or DR. Seek another Opinion! Don't waste your money on a Quack or Ignorant Staff!

I Know it's Rough having to deal w/ Not Driving. But, Honey, you Are Breaking the Law! And every time you have gotten behind the wheel you were a possible Hazard to Yourself & Others'! Consider the Positive! No Vehicle Payments, Costs: Registration, Insurance, maintenance, gas. Chek out 'electrical' scooters/bikes. (Under Tips ) Much Safer. Or find friends to 'share' ride. It can be done. You are in a college town!

I recommend you seek a Support Group, too. Chek out our Resources: epilepsytalk.com & epilepsyfoundation.org links have more Info as to where they are Located. Talk w/ a school Counselor. They can work w/ your Teachers. Give you extra time for work/tests. Get homework to you for missed classes. More info on epilepsyfoundation site. Tab: Living & Coping Or just use Search. You don't have to be a member of these Sites to read Info! I believe our Epilepsy Health Center covers school issues, also.

In the Long Run, you will regret,"living with the Seizures". Seizures Do Damage the Brain. And could lead to more frequent episodes as you get older. Best to find Control while you are still 'young. And if meds Aren't the answer, then, do some 'homework'/Research on 'alternatives'. Links in Resources/Tips.

Keep in touch. Know we care. Remember Knowledge Is Power. Positive Note: Some of the Greatest Minds in History Had/Have Epilepsy! :0 HUGS!

Love Candi

Just to be clear- I'm NOT driving. I stopped driving the minute I noticed "aura" and haven't driven since. I also don't drive tired, angry or on the cell phone or at any time when I might not be able to fully concentrate on driving. I'm 46 yrs old with 4 kids still at home. I work as close to full time as I can, carry a full class load and have a 3.96 gpa. I walk when I can, and have one of my kids or a friend drive me when I can't. Thanks for the concern AND all the good resources.

Hi mom,

Thank You for your quick response. I appreciate it. And the extra Info. It helps to know what your interests/situations are. I do hope your meds reach therapeutic level soon & side effects diminish. I do know a good diet & less stress will help eliminate side effects, too. Plus, help your meds work better. Because they metabolize better/faster.

I'm sure the infection created enough stress to trigger the seizures again. Hopefully w/ the addition of Tegrestol you will regain control. If Not, Keep trying new Meds, treatments, therapies.

Later. HUGS!

Love Candi

aloha

HI candi. she could always see if she is a god candiate for the VNS. I saw the word aura pop upand thouth that maybe she has partial szs. maybe she can bring that up at her next visit wiwth her doc, and I could talk about it with her now if she wants to know aobut it or what it is or does.

IT helped me.

Mahola

NAncy

Thanks for the thought Nancy, We will wait & see if she answers our responses. OK?

Love Candi

What is VNS? I do have "partial" seizures but before the infection even those had decreased to less than monthly. I also have had "absent" seizures, petite mals and a few gran mals. Thanks for the help

Hello Mom,

It is known as the Vagus Nerve Stimulator. Nancy can tell you more. It is usually recommended for PPL who have Frequent seizures that are uncontrolled by meds. It can be used w/ meds, also. As w/ any treatment for EP, "What works for one, may not work for another". It is All 'Trial & Error'. You need to ask your neuro if he/she thinks this treatment is an option for you.

Since your new bouts were brought on by an infection, I would seriously consider cheking into foods/supplements that are used to rid the system of toxins. Chek out dogtorj.net. Use Search This Community Tool if you need a Link.

Love Candi

aloha from oahu

hi mom,

the VNS is a device that is implanted in the chest much like a pacemaker, and has a lead that is run right up the inside of your neck that has a incision so they can gain acsss to the Vagus nerve to winde the 2 electrodes around the nerve along with winding the anchor around the nerve as well. The device fires off regualr impuses of electicity every 5 minutes for 30 seconds and adn goes up the brain stem to the brain to help stabalise that neurons that would or might potentionaly cause a sz. there is a lead wire that comes off teh device as well that the elctricity travels along to get to the electrodes to the brain.

IT does NOT hurt when it fires, but the most common side effects are coughing, hoarse voice, and swolling problems when it is firing.

There is NOTHING to be afraid of. IT does not hurt. THey take it up VERY slowly to get to the theapeutic level of 1.75 amps. I am at 2.25 amps with a magnet swipe of 2.50 amps.

my neuro is not going to move it up any more. he is keeping me where it is.

there is a VERY high powered speicail magnet that comes with it after you get the device and when you feel one coming on or an aura as well you can run that magnet over the VNS and it will stop the sz or aura in its tracks. If it did not work the first try you have to wait 30 seconds to give the sz a chance to run itself out. If it did not di it then you have to run it again and if it did not do it then you have to just let it run its course.

somtimes you can seto t off unintentionally and then you have to say tha in your diary so he does not think that was not a sz.

IT is meant for intractable or refractory szs that do not respnd to meds and are very hard to control.

teh typoes of szs it covers are All types of partial szs, T/Cs and Abcences.

But.... there is the rule of thirds. What may work for one may not work for another. It may work GREAT for some, work part for aothers or not work at all for the last thrids.

IT works GREAT for me. I started responding to it in about 6 months, IT is supposed to tkae up to about 18 months for most people to begin to respond to it or to get the most efficey out of it.

it takes almost ALL insurances, and that includes everything liek the OR the people in teh OR the decvie etc.

just do NOT whatever you do DO NOT pick at your neck. It may cause the lead to come loose from the device and then you may have to have another surgery to reconect the lead to the device.

they do wear dowm. They laston average from 1-5 years.

mine died just before 3 years and had to ahve it replaced on August 25th of last year.

thatsurgery only takes about 10-15 minutes.

it hurts but they numb it up and give you pain killers for it.

it hurts for about a week. You can not lift any thing over 15 pounds for the rest of your life.

never laie on either side or your stomach that can casue it to pop out. Lie on your back only. I know eiasr said than done.

do NOT bend doonw for one welk after it had been impanted I never under stood that one at all. put ice pn it and your left shoulder ,

I hope that helped you slome if you want to talk to me you can. I would be willing to carry on a conversation on here for you to answwer your questions about it. it you want to.

Mahola

Nancy

Thanks for all the info! Another question. Can blood pressure affect seizure activity? And what about weight loss? I have had trouble with both lately and even on tegretol have had an increase in seizures. I also have more seizures during my period and the few days before. Can't find a support group in my area that I can walk to so you guys are it. Thanks.

Hi Mom,

Blood Pressure. My GP said No, when he noted my Low Blood Pressure. Although I could have swore an 'episode' I had was a seizure. My knees/legs turned to gel, slid to the ground, eyes rolled back (I could still feel/hear everything. I mite have passed out for a second or two, but, was OK by the time my friend got to me.) My Neuro Insisted I start keeping track of my blood pressure, so maybe there is a Link. My GP don't know much about seizures. Claimed if I wasn't convulsing, it wasn't a seizure.

Weight Loss is not an issue that I know of. Usually, it is a side effect of our meds or an underlying medical issue.

Seizures increase during Mthly? Go to Resources. Catamenial Seizures for More Info! Yes, Hormone fluctuations Can trigger Seizures! My DD & Sis are Prime examples! Sis opted for Homeopathic MD & was placed on Modified Atkins Diet (for Diabetes & EP), progesterone & Vitamin D3 for Severe Depression brought on by EP. Daughter has Finally achieved Control w/ Topamax & Lyrica.

If you are Still experiencing Any Type of Seizure activity, after 6 weeks of any Anti-epilepsy Drug, tell your neuro & Insist that he tries you on another med or alternative treatment.

We are here for you. But, if you want to go to a Live meeting, also, call the Support Group & Ask about 'share rides'. Maybe a Caretaker, who attends meetings, will be available.

Love Candi

could it have been ortho static hypotension?

The blood pressure falling too fast from sitting up after lying down or sitting up to fast.

IT might be convulsive Syncope. Where she would pass out and convulse a little bit from having a lack of O2 to her brain. but not really ahving a true sz.

O dpn not know

mahola,

Nancy

Thanks for your responses. I am still having difficulty adjusting to the tegretol. My blood pressure (which I have trouble with mormally) has been running extremely high. I also have trouble with my weight off meds but the meds make it worse. I'm down to under a hundred pounds now and living with a constant nausea that i am told is normal. They keep telling me all my side effects are normal normal normal. I can't concentrate in the one class I kept when I had to do a medical withdrawal even though it's in my favorite subject ever. I've withdrawn from all my spring classes-its just too much to deal with. I've always dealt with lots of stress on a daily basis but now it just seems like too much. My personality doesn't even feel like my own, I hate it. I have no insurance so my gp is trying to do this with an occasional consult. I can barely pay the med bills and getting behind on everything else. Will def look into other support groups that might do ride share. THanks again for all your help guys, it really is a help.

Hello Mom,

I found out a Long time ago, that my Phenobarbitals were responsible for Blood Pressure Highs & Lows. Routine test went sky hig & nurse left in a rush when I said my arm hurt. I was hospitalized overnight. Nothing Wrong! Asked Doc why that happened. He didn't Know! So, I asked the male nurse on duty a question. Can my meds &/or supplements cause problems w/ blood pressure. He went & checked his PDR & sure enough, there was the Info in Black & White. My DR just kept signing the release papers & didn't say a Word.

You need to find a way to get your Blood Pressure Normal! High or Low Pressure can Trigger seizures. Weight Loss? Same Problem w/in the past 10 yrs. It's like a YoYo. My DR ran tests told me I was OK. Changed DRS. Same Opinion. It ain't rite. So, I tried some Carnation Instant Breakfast & Gained Weight. At least 10 lbs in a mth. Now, Hubby makes me a recipe of the drink he found online. Mix w/ milk & tastes chocolate/vanilla Gooood!

Don't sweat the Medical Bills. Pay Only what you can afford. $20 a mth always satisfied my Medical Bill collectors. Just call & tell them what's what.

Of course Stress is Too Much. Stress ( especially sleep deprived stress) Can/Will Trigger seizures, too. Again, Find a way to Chill! Did ya Know Marijuana can Lower the Blood Pressure? Works for Some. Hang in there. How many more weeks B4 trial & error phase w/ meds is Done?

Love Candi

I go back to the doc on the 26th. I am trying to drink ensure but even that makes me nauseous. I have thought about marijuana but medical not legal in my state. I do know where to get it though. Can it help with nausea? I am usually really good with stress. I lead a very stressful life and I've learned ways to deal. It's getting awful hard tho. You all help tho, thanks.