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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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bethie3662

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Hi - my name is Beth. I am 34-years-old and live in Atlanta, Georgia with my husband, Russell, and our twin little girls, Stella and Sydney (16-months-old). I have had epilepsy for 26 years. I have complex-partial or absence seizures.

I have never really done much research on epilepsy or the support groups that are out there. It is a recent change in my seizures (they are lasting a bit longer) that has led me to get a little more curious. We have recently decided that I should stop driving for now, and I am having a really hard time coping with that, but know it is the right thing to do. I couldn't bear to live with myself if something happened to my daughters or I hurt someone else.

I am currently taking Neurontin and had the VNS placed last year. I have had good results with the VNS, it wasn't until just recently that the seizures have started to change. I am considering adding another drug - I have an appointment with my doctor on Thursday. One big issue is that I am allergic to a few medications. Phenobarbital, Tegratol and Lamictal all gave me Stephen Johnson's Syndrome - the Lamictal nearly killed me about four years ago!

I just wanted to introduce myself to the group and say thank you for being here. I look forward to visiting often and chatting with you!
 
Welcome Beth, I am glad that you decided to join us.
My daughter tried neurontin / gabapentin and it caused some terrible suicidal thoughts in her.
Have you considered any alternative approaches other than meds to find seizure control?
 
Hi! I have not tried any alternative epilepsy treatments yet, other than the VNS, but would love to find out more about some. I am scared to try any other prescription medications because of the allergic reactions I have had in the past. Where should I go to look into some alternative treatments? Thanks!
 
On the menu bar above, click on the left section titled Coping With Epilepsy. Then again on the left side of the new page there is a section called References. Under that listing you will see alternatives as well as the best forum threads. This makes for some very good reading. Of course it will take you a while to get through it all. But that is our way of keeping you around for a bit.

Ask questions... and if we don't know the answer, we can link you up with places/people that might. I am sure that you can be a good resource to others as well.

I don't have E but my daughter Rebecca does. She is 16 and has only been dealing with this for about 2 years. Four different meds were not agreeable for us, so now we are relying on diet, neurofeedback, vitamin and mineral supplements, and bio-identical hormones.
 
Welcome Beth, its good to have you here.

I have also had some success with the VNS. I would estimate it reduced the frequency of my seizures by about 50%.
My absence and tonic clonic seizures are still uncontrolled though.

But anyways, hope you like it here!
 
Hi Beth, welcome to the forum. :hello:

Glad you decided to be curious. Make yourself at home here. :)
 
Welcome Bethie!....

I had a neurologist recommend VNS for my T/C epilepsy...but chose to decline. I am still utilizing AED's, but I've begun researching music's positive effects on epilepsy and implementing some changes.
I have kept the epilepsy down to just a couple of times a year for the last few years!

Good Luck in your research!
Spencer
:rock:
 
:hello: Bethie!

Welcome to CWE and grab a box of :pop:
and browse around and make yourself
a home here!
 
Welcome Beth

Make yourself at home and if you have time, pop over to my site and meet another great bunch there!

Click here

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Hi Beth,

I am from Atl. also. I live on the North side about 30 mins north of Roswell in the Burbs up there. We love Atlanta and have been here almost 10 yrs. I have complex partials and absence ones also. I would love to talk more..I am actually on vacation in Florida right now. I hope all is well with you! Have you gone to the Emory Ep. Ctr. at all? I keep debating if I should. I have had mine for number of yrs. but only recently diagnosed. I kept being told it was just nocturnal panic attacks I was getting in my sleep. They were seizures!!! Anyways..welcome again and glad there is another Atl girl!

Michelle
 
Hi Beth! Welcome to CWE! :) There's some great info. on alternative treatments here. :) So feel free to ask any questions, and if you ever need to, there's the padded room to rant in. :) Again welcome!
 
Welcome Beth to you and your husband as well if he decides to check out some of the postings. We have both patients and caregivers on this site. I call the caregivers HEROES because I know my wife is my hero. I sometimes see the caregivers getting a better understanding of what we as patients can not always explain.

:cheers:

Bless your babies! I am a grandpa and just love my little grandkids.

I have also had E for 26+ years. I have had tonic clonic seizures since the age of 20. Happily, they are fairly well controlled right now.

:e:
 
I had another REALLY bad seizure last night. My husband had to call the ambulance and it took me to the hospital. I had taken some allergy medication last night and I am wondering if that may have caused it?? I bit my tounge really bad and my hole body is black and blue - I hurt all over!
 
:( You should ask your pharmacist about possible drug interactions/contraindications.

Hope you feel better soon!
 
Welcome Bethie, Sorry to hear about the er visit. It sucks feeling beat up however don't let it beat you! If someone stares tell'em they should see the other guy:banana:What ever you do don't give in-we may have E but it doean't have us. As for meds and allergies- the meds can actually cause sensitivity over time even to things that used to work so tread lightly and check with the pharmacy on everything. I personnaly think less is more (unless its for pain then I am all for the drugs):roflmao:
 
Sorry to hear about your seizure Beth. It isn't any fun going off to the ER. We have had our share of visits this past year.

Hope you are feeling better, and that your tongue is healing.
 
Go ahead and say it. Seizures suck!!!

Get your rest and I hope you heal quickly. Many of us know that feeling of the 'worst hangover imaginable' without ever drinking a drop.

Definitely consult with your pharmacist/doctor. In the meantime or for future reference, http://www.drugs.com/drug_interactions.html is a pretty good on-line resource to check out interactions.
 
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