anyone else in this ?

[tiggy'smom]

Hi, My name is Linda and I'm new here. I've had epilepsy foe 10 years now and the docs cannot find any cause for them. I've had all the tests, including that PIA one that you wear the cap all night with the electrodes that allow to pick up HBO. No answer! I had my first one while working as an RN at Jersey City Medical Center in the ICU. I woke up in the with one of my colleges telling me the they heard a scream in my patients room and ran in to find me on the floor in a grand mal seizure. My first response, did I wet my pants? I had one a few months later and was put on trileptal and topamax. I have been on them these last ten years minus the trileptal when i was switched to keppra, that left me anxious, aggressive and making several er visits for the crisis unit not knowing what was wrong with me. I had 2 more after being seizure free for 9 years and was just placed on a stronger dose of topamax, i was diagnosed with fibbromylagia and placed on lryica. The doc felt that those two meds would cover me, knock on wood it's been a year. I just found out today that after looking like I had meth mouth that my tooth decay and loss is from the meds. acccording to my dentist these meds cause it. I had beautiful teeth befiore i started on these f-inf meds. Does anyone else ever had this problem?

 

[valeriedl]

I've had epilepsy for 11 years and they have no idea what caused it. I've been switched on and off from so many meds and dosages through the years but the seizures have never stopped.

I'm on Topamax too. I'm not sure how long it's been but I know it's been a good many years. I believe this is the med that causes you to have you to have tooth problems. Last summer my teeth started hurting really bad when I brushed them and flossed. I went to the dentist and found out I had receding gum lines, which was caused by the med. I had to have some sort of fillings put in around my gums. Since I had that done I haven't had any problems but it could start to happen again.

If it's really bad you may want to consider asking your neuro about changing your meds. You may start to have seizures again though until you find the right med that will work.

That's one thing that I hate about some meds. It may be helping/stopping your seizures but the side effects are just too much to handle.

 

[Janus]

Me too! I have some real gum problems and i have been a meticulous brusher and flosser. I have no more medical coverage for dental and i was just told that i must have a root canal. I have no problem having that done but i can not afford that at all. I only take Lamectal and keppra now and am scared to change again, experimenting with new trials. I am also worried about other side effects that may show up for the long term use of meds like early dementia or bone loss at rapid rates, and there are so many more possibilities. Makes it almost impossible tho stay in today (that is my goal).

 

[kirsten]

My neuro failed to tell me that I had to take vitamin D and calcium with my meds because the meds lower those levels. Luckily another doc told me before I ran into problems. I also asked my dentist what I could do to prevent future problems. He told me a high fluoride product would go a long way. In the US, you have prescription grade high fluoride toothpaste, which we don't have here, but we do get high fluoride mouthwash.

 

[Cint]

He told me a high fluoride product would go a long way. In the US, you have prescription grade high fluoride toothpaste, which we don't have here, but we do get high fluoride mouthwash.

My dentist told me to use a high fluoride toothpaste and mouthwash, too, because I was getting a very dry mouth and I have receding gums from years of taking AEDs. She advised me to use Biotene toothpaste and mouthwash. It is over the counter, no prescription needed. It helps with the dry mouth that some of the meds cause, too.

 

[Nakamova]

I do the same -- brush and floss carefully. And use a fluoride rinse in the evening, since I get dry mouth overnight. I see the dentist every 6 months. It's expensive, since I don't have dental insurance, but I think it helps. I had some gum problems from Dilantin, but my teeth have been good since I switched off of it. Eventually I may have to have gum grafts, but since they would be very pricy, I'll dave my pennies and hold off until the dentist says they are absolutely necessary.

 

[tiggy'smom]

dental issues

I want to thank everyone for your posts. I went to one dentist 5 years ago for the same issue and right over me he said to the hygentist "now that's what you call a meth mouth". I was so mortified I wanted to die right there and that's why I avoided going back. I would never had acted that way in front of a patient while I was still a nurse. And speaking of seizures and being a nurse, I have applied for disability and NJ feels that it is OK to fall at the bedside and seize. They feel I can still work with epilepsy and fii.bromylagia. I'm at th point of getting an attorney. Would you want your nurse to just drop to the floor and have a grand mal right in front of you? And my short term memory has been fried.

 

[Nakamova]

I think the experience of many CWE members with applying for Disability is that you're almost always rejected the first time around. You have to keep applying until either you or they are worn out.

 

[MiaAlexandria]

Anyone in this

Hi everyone. My name is Mia. I've had generalized absence seizures since I've been about 9 and my grand mals started when I was 13...I'm almost 19 now. I've been on Depakote (extreme weight gain) Zonagran (made my hair fall out) Zarontin (gave me drug induced lupus) Lamictal (felt drugged and had horrible increase in acne). None of these drugs controlled the grand mals. I'm presently on Topamax, Keppra and Onfi. Still do not have control over the grand mals. It actually seems like with each increase of Onfi, I have a grand mal. So I'm seeing something common with everyone. I'm feeling pretty hopeless with my treatment also. I live in Cleveland, Ohio and my neurologist is suppose to be one of the best. Does anyone have any research on where I might find literally the best neurologist in the US? I'm getting to the point where I need to seek other options. I'm really sorry for everyone's struggle. I understand how you feel, but we have to remain strong and hopeful. There is a reason we are struggling with this.

 

[tiggy'smom]

am so thankful to have this site for support. Since not working and the dual diagnosis my friends have all but gone away. I long for contact. I want to work but the exhaustion and living time bomb in my brain isn't so conducive. NJ does'nt get that in regards to disability for some reason. I've worked since I was 14 and cared for and saved countless lives in ICU/CCU and I'm in the wind. Sometimes I just don't know whether to laugh or cry. I'm afraid to cry because I'm not sure I will stop.

 

[tiggy'smom]

Hi Mia, I'm Linda. Was diagnosed with seizures of unknown origin in '05 and have been on several different meds. Right now topamax, and since a recent diagnosis of fibromyalgia, Lyrica. The Lyrica has caused me to gain a lot of weight and only being 5' that's a problem. I was on Keppra and that stuff caused me to go bonkers. I live with my parents and several ER trips were made for panic/anxiety attacks, I became very aggressive to the point one night my dad called the cops and one officer very "nicely" said you either go to the ER with us in cuffs or in the ambulance and we go away. It wasn't until I had another grand mal and a new neurologist told me that my reactions to the keppra has happened before. I was placed on a high dose of topamax. Later I was diag with fibromyalgia and am now on lyrica. My issue now is to research and find out if the breast implants I had placed 2 years prior to the seizures started has asssociation with either the seizures or the fibromyalgia. Either way it all scares me, ii it's not the chemicals to control the impulses in our brains, it could be something that i did to fix something that nature had made noticebly imperfect. I ask the docs and get a shrug...

 

[MAB]

I know it may sound strange and it's difficult to do at first but I started oil pulling a couple months ago. It is swishing a tablespoon of coconut oil (organic) in your mouth for 20 minutes every morning. You might need to build up and start with 1 or 2 teaspoons for 5-10 minutes. It really doesn't take much extra time. I do it while I'm in the shower and getting dressed. They say you don't need to brush your teeth afterward but I do anyway. I also use a waterpick. I have an appointment in May for a dental cleaning. I'm not going to tell the dentist in advance what I have been doing. I want to see if he notes any changes in my mouth. I know my gums no longer bleed when I use the waterpick and my teeth are whiter.

 

[tiggy'smom]

I know it may sound strange and it's difficult to do at first but I started oil pulling a couple months ago. It is swishing a tablespoon of coconut oil (organic) in your mouth for 20 minutes every morning. You might need to build up and start with 1 or 2 teaspoons for 5-10 minutes. It really doesn't take much extra time. I do it while I'm in the shower and getting dressed. They say you don't need to brush your teeth afterward but I do anyway. I also use a waterpick. I have an appointment in May for a dental cleaning. I'm not going to tell the dentist in advance what I have been doing. I want to see if he notes any changes in my mouth. I know my gums no longer bleed when I use the waterpick and my teeth are whiter.

I've been hearing of so many newer and different uses for coconut oil but non that one, I will give it a try. Wish I heard sooner, sat in the dentist Fri. and had 5 root canals at once. I'm a big chicken and need sedation and as Murphy would have it the sedation didn't take and when he was drilling the top teeth I swear it felt as if he was going to go through my upper palate and into my brain! No pain in the upper 4 but the lower right jaw is killing me. I will try ANYTHING to save my remaining teeth. Thank You for that!

 

[MAB]

I've been hearing of so many newer and different uses for coconut oil but non that one, I will give it a try. Wish I heard sooner, sat in the dentist Fri. and had 5 root canals at once. I'm a big chicken and need sedation and as Murphy would have it the sedation didn't take and when he was drilling the top teeth I swear it felt as if he was going to go through my upper palate and into my brain! No pain in the upper 4 but the lower right jaw is killing me. I will try ANYTHING to save my remaining teeth. Thank You for that!

It can't hurt to try. I have heard a lot a great stuff about it. Of course much of what you read on the internet isn't true. That's why I am curious to hear what my doctor says before I tell him.

I have always hated going to the dentist, before I found my current dentist. It's still not fun but it's not pure torture either.