hey i am new

[skeeter1271]

Hello I am new to this site. I couldn't believe it was out there but it is and so i joined. my name is heather. i have partial complex seizures and have been on tegretol since i was 12. it controls my grand mals. i am also on primdone since 1992 and it controls my petite mals.

i saw a new neurologist the other day since i moved out of state and she rang the bells. she said that although these meds were working, they are dangerous used in long durations. esp since i am a woman the tegretol can cause bone density to decrease. so she has ordered that test.

i am ok with that but she also wants to change both of my meds that work. i drive for my job and have three young children.

i know i need to think about my life in the future but what about if it's not broken don't fix it don't i understand here. she wants to try me on keppra or lamicictal.

side note... the hurricane irene is whipping thrugh my yard right now knocking down limbs and pouring.

i am 39 years old and am very scared that i will have a breaktrhough loose my job, health insurance and be unable to find any kind of work that compares to my curent salary.

so that's my story. i have had epilepsy since the age of 12. i hate it and everything about it.

any helpful feedback is appreciated.

 

[Nakamova]

Hi skeeter1271, welcome!

I was switched off of a med called Dilantin because of the potential for bone loss. I ended up on Lamictal which has worked fine. That said, ALL of the anti-seizure meds have side effects. Sometimes the day-to-day ones can be just as nasty as the long-term ones. Your neurologist means well, but you should ask a lot of questions -- of her, and here at CWE -- and don't make the transition unless you feel comfortable about the process.

I know someone who's been on phenobarbitol for seizures almost all her life. The docs don't like that for long-term use either, but it controls her seizures and has had none of the side effects often associated with the med (it's a barbiturate, like Primidone). Her docs have urged her to switch meds, but like you she's of the "ain't broke, don't fix it" school of thought, and has been fine. staying put. Likewise there are CWE members who have been on Tegretol for a long time. The data on bone loss for Tegretol is less clear than that for drugs like Dilantin and Primidone, so you might want to ask about at least staying on the Tegretol for awhile, especially if the bone density tests don't raise any red flags.

You are right to be cautious about making the transition. If you decide to go ahead with it, ask about going as slowly as possible so that your brain and body have time to adapt. Consider doing just one med at a time. Withdrawing from a barbiturate like Primidone needs to be done with care.

Good luck with the storm! We are preparing for it up north, though I expect it will have slowed a bit by the time it gets to Massachusetts.

Best,
Nakamova

 

[survivor]

Naka has said it all! See dear who has seen the future. Live in the present. If for the future this present becomes worse than whats the fun? And believe me things can get worse when u try changing the AED. Get ur bone density checked and go for the Calcium levels, if they are fine, go with it only. But the decision is urs.

 

[skeeter1271]

well you have both confirmed my present train of thought. I am not going to risk everything for something that may or may not even be happening. I will try the calcium supllements and continue to run. I will even drink more milk.

Bieng in the present is essential but if I don't look out for my family and livlihood then there will be a very different future. I am not interested in that scenario.

thank you both for your input.

 

[momof3boys]

I was on Carbatrol ER (another form of tegrotal) for over 12 years. Just this year in March, I had my first VEEG, where my dr determined I was having simple partial seizures, and not any complex partials or grand mals Ive had in the past. So, he said due to how long Ive been on the Carbatrol, and it having the bad outcomes, like what you stated with the bone mass issues, he took me off that and kept me on the Keppra XR. During the next two months, (March through May) I tried adding Vimpat to the Keppra, and also Lamictal. Both which didnt work out, so Im now only on Keppra XR. I also think its a good idea to not stay on Tegrotal too long due to the side effects it can cause.

 

[skeeter1271]

kristen, this is a bit persoanl but do you have a full time job outside of caring for your three boys like i do. my three are getting older and need less from me each year which i find sad

i am concerned about my health now and for the future. if i lived only for today then i would probably go for it with no hesitation. i definetely have grand mals and petite mals. some of the newer treminology throws me off. so if they did a brain test as they did on you i may feel more confident.

i am definetely going to see what the bone scan tells me. my mom shared that there is a history of osteoporosis in our family which includes her.

i am starting a new job which requires me to drive. i will have to be retrained if i can'[ drive and do what i do for a living. ughh its 3am and i cant sleep.

thanks for writing kristen.

 

[skeeter1271]

Good Morning all.

My bone density tests came back. I have osteopeia. My doctor stated that it is one standard deviation from norm. if it were two standard deviation from norm it would be osteoperosis. so this is in my back and hips. my femur looked normal.

so i am going to take oscal for now and in a few months attempt the switch. It scares me to death but the doctor said this bone scan is usually seen in people in their late 50's to 60's. I am 39. I have been noticiing lately when I bend over my spine pops, kinda like I am cracking my back. It is very weird.

So I loose my health insurance tomorrow and will not be covered until december. at that time i will try to go off my tegretol. she is still talking about keppra and lamictal. we will see, I just realized that since I was twelvei have always felt tired, sometimes down,and have very little motivation. there are no meds that aren't depressants that treat epilepsy. I just wish I would know what it would be like to be me without these depressants. But then again that would not really be me would it?

 

[BlueSkies2220]

SCARY!!
I have taken tegretol and its generics since 2006 -
BUT i take a calcium/magnesium supplement daily just in case! plus vitamin D, Biotin and folic acid. its a shame that these medications can do damage to the body, but it is better than suffering with seizures, believe me.

 

[Nakamova]

I know how you feel -- I've already lost an inch in height, and I'm worried how much more bone loss lies in store for me (I'm 47). I take a cal/mag/D supplement too.