Hi I am also newI have nocturnal seizures

[Eve]

Hi I am new here and my name is Eve.

I was diagnosed with nocturnal seizures 15 years ago. These only occur in my sleep. When these seizures occur, I get this weird feeling of being electrocuted. I think the doctor referred to these as partial seizures. I took tegretol for 10 years and for the last 5 years I have been taking Carbatrol.

Recently I was doing some research on the relationship between carbatrol and bone density scores and I was shocked at what I discovered. I read many medical journals that indicated that the drug I had been taking caused osteoporosis.

In the last 5 years I have broken 5 bones. I went to my neurologist today and discussed with him what I had read. He admitted that he knew about these findings. He has know about my broken bones and not once did he suggest that I change medicine. I am so disappointed in him.

He suggested I go off the Carbatrol slowly , right now and to remain on the carbatrol and to take the Keppra with it. Right now I am taking 600 mg a day of Carbatrol. He wants me to take 500 mg of the keppra fron now along with the Carbatrol for the next month and then work my way up in the doses of the Keppra while I slowly wean myself off the Carbatrol over the next few months.

I havent had an y bad reactions to the Carbatrol other than the bone loss.
Now I am worried about taking Keppra. What can you tell me about this? I am readding that it causes anger and kidney problems??

Please advise me I feel so alone.

I am thinking maybe I should go see another doctor and get another opinion. My Doctor seems to have developed an attitude. I think he was angry that I brought in all that paperwork on the research on bone density vs carbatrol (tegretol uses)

[alivenwell]

Have you asked him if it's safe to add a calcium supplement to your cocktail of drugs? I've been taking one for several years. Vitamin D is added to the calcium supplements to help it get absorbed more frequently.

Check out RobinN's posting:

Flu Shots

[Eve]

I told the Doctor that I am taking Calcium and Vitamin D and I am taking it in broken down doses through out the day. The Dr seemed to think it was ok. Does anyone know if the Keppra affects bone density?

I am scared to take the Keppra. I don't know if I should stay on the Carbatrol or switch to Keppra. Are the side effect bad on the Keppra?

[dfwtexas]

I have oestroposis...but mine is related to having hysteromy at very young age. I am on Keppra. I was diagnosed several months ago with seizures and have only been on Keppra (although doc is going to let me try Keppra XR now). My oestroposis is pretty severe (-3.6 bone density) and as far as I know....there has been no up/down with Keppra. I cannot take oestro meds due to severe pain/joint pain. I just take calcium.
My father had seizures and took tegretol and dialantin...and I saw him have a lot of bad side effects. I was scared of seizures meds due to his experience. But the Keppra has not been bad. Initially, it made me sleepy...which was bad because yawning would trigger seizures for me. That went away after a few weeks. I do get mood swings....had one today when I found out my insurance company outsourced customer service to India!!! But it doesn't seem out of control for me...but that varies from person to person. Give it a try, when you compare the side effects of Keppra to other seizure meds, Keppra is good.
If you don't feel like your doctor is addressing your concerns, it doesn't hurt to try another one. Do you know someone in your area that has a doctor they would recommend?
Welcome
Jennifer

[Eve]

Thank you for all your replies! Now I don't feel so alone.

I also had a hysterectomy a few years ago due to severe endometreosis. They wanted me to take the hormones but I refused those due to the now known dangerous side effects like cancer! They wanted me to take osteoporosis drugs. But I didnt like them . I tried Actonel, Fosmox and Fosteo and I didn't like the way they made me feel. They all made me feel sick as though I had the flu or something.

My Father too took Dilantin. He took them after he had brain surgery for a brain tumor For as long as I can remember he always had some sort of joint problems. He suffered from arthritis. Now I wonder if it was from the Dilantin he took.

Carbatrol hasn't really bothered me too much other than the poor bone density that I have. I think I will see another Doctor before I start on the Keppra. But I am not sure. I am really worried about the Carbatrol messing up my bones. I broke my knee 6 months ago and had surgery to repair it, it was a long road back to recovery.

I just wonder if the Keppra is better than the Carbatrol. I just wish I didn't have to take any of this stuff. I hate taking drugs. The Dr said I would have to take both the carbatrol together with the Keppra for a few months before I can stop taking the Carbatrol and switch to Keppra alone.

Tomorrow I will see how soon I can get in to see another doctor for another opinion.

[dfwtexas]

Wow! We have a lot in common. That's why this forum is so great, it helps to talk to others in the same boat when I feel like I am all alone with my health issues. I also had severe endometreosis. I took the estrogen for a few years, but then lost job/insurance and those pills were a luxury I had to cut out. During that time, all the reports about cancer came out and I made the decision not to go back after I got insurance again. Since then I found out those pill were probably the cause of my gall bladder problem and surgery to remove it. But the drs also say me going off the estrogen probably caused the oestro too.
I had a freak accident walking my dog on May 29, 2006. I had double compound to my left arm. Bacterial infections started setting in and it went from bad to worse, very close to losing my whole arm. I have had 10 surgeries and may still have another one or two. Physical therapist told me very early on that oestro was probably at the root of all that. It's a daily thing with the pain and all. So I have a lot of fear of falling again. Luckily I have simple and complex partials and haven't fallen or dropped during a seizure. My seizures are a result of either all the IV antibotics I took for 2 years or one of the 8 bacterial infections damaged my neurologic system.

[Bernard]

Hi Eve, welcome to the forum.

"Kepprage" can be managed to a degree with vitamin B6 supplements.

It's important to get calcium in a manner that the body can use. Milk is not a good source of calcium despite the dairy association's decades of marketing to the contrary. There is a good source of calcium that also contains Boron which is a key binding ingredient so your body can use it.

[skillefer]

Hi Eve! Welcome to CWE. Check out my reply to one of the other posts regarding the Keppra. The important thing to remember, is that all medications have a possibility of a long term side effect. Many of the meds used to treat seizures can effect the liver, memory, cognitive function, bone density, etc. Also, stop and think about whether or not you might want kids in the future. If so, that can influence which drug the doctor will suggest for you. In the end, you're the only one who can decide what is an acceptable risk and what isn't. Some here, have decided that meds were not improving their quality of life and was in fact jeapordizing them. Many of those have tried the alternative method route. Others find that by implementing one of the alternatives, they can reduce the number or amount of meds that they take. So they use it as a supplementary method of treatment. And others, well, others take the med route, and find that it works fine for them. Which route you choose is up to you. But you should take the time to read up on the alternatives, and see if any of these interest you. If so, ask your doctor about them...Some doctor's are perfectly willing to go along with their patient's choice of alternative method. Others absolutely refuse to consider them. But at least you should feel comfortable discussing them with your doctor.

Now as for being upset because the doc didn't tell you that the med your on could reduce bone density...I'd be upset too. But at the same time, I can understand it. His one concern is to get your seizures under control. That's it. He probably figures that once you get them under control, then you can worry about the lowered bone density, or take another med to improve it. At least when I told my doc that I wanted to have kids some day, he automatically told me to take 400mg or Folic Acid every day. I've been taking it for years. With my newest med, he suggested a Vit. D + Calcium supplement. You may find that once you open the conversation, your doctor will actually be willing to help you with developing a plan that works best for you. Many times though, they have patients who just want the "magic pill" that will get rid of their problem. It must be frustrating for the doc who wants to be able to investigate these other options more. So have a little faith.

Feel free to ask questions, chime in, or just vent if you need. Heaven knows that E can be frustrating. Hope this helped.

[Eve]

Thanks for all your replies!!!! Now I don't feel so alone!

Jobmartin We sure do have alot in common! I had severe endometreosis for years and the Drs had me take Lupron for 6 months. I wish I had never taken that drug. It really made me feel weird.........I actually felt like I had the flu for 6 months. He insisted the Endometreosis would go away after I got off the drug. It did not go away at all and several years later I ended up having a hysterectomy and that finally got rid of the endometrosis for good. SOrry to hear about your arm , that must have been so painful.

I broke my knee 6 months ago and had surgery to repair it. I was in Physical therapy for 3 months. They said my balance is bad. The doctor said it might have something to do with the carbatrol I am taking. Does anybody else have balance problems? Could it be from the seizure medicine??

Bernard Thanks for the tip. I will keep the Vitamin B thing with the Keppra in mind. Maybe I should get some Boron? The Calcium I am taking has the Vitamin D but not the Boron.

SkilleferThanks for the welcome! Thank God I had my kids right before I was diagnosed with these seizures. In fact it was right after my 2nd child was born that I started to have problems that were realted to seizures. So I never had to take those Meds when I was pregnant.

About my doctor in the last 5 years I have come to his office with 3 broken bones. I just thought that maybe he would be able to figure that maybe I needed a med change.
I didnt like his attitutde. When he gave me the prescr for the Keppra, he said, "Let me know if you have problems, you probably won't like it, you don't seem to like anything I give you." He also complained about me acting "anxious" I then told him that I didnt think there was anything abnormal about being concerned about one's health. He then suggested an antidepressant, which I refused. He put me on Lexpro once and it gave me PANIC ATTACKS!!! Awful!!!


Anyway, I called my insurance co and I found out that it does NOT cover the Keppra. I then called the drugstore and asked for the price $130.00.

I made an appointment to see a DIFFERENT doctor next week to get a Different opinion. I am not sure if I like my other doctor anymore. At the last visit he seemed a bit insensitive.

[skillefer]

Well EVe, there is a generic form of Keppra. you might want to check it out.

[Eve]

A generic for Keppra? I dont know...............the Doctor that I have been seeing told me that I should never take a generic for seizures because they tend to be less effective. ?

I am glad I am seeing a new doctor next week. It's time................

[RobinN]

Welcome to CWE, Eve
I see that you are already getting some much needed help here with your situation.

My daughter had her first tonic clonic seizure at the age of 14. We tried meds, but they made it worse. We are managing them with nutritional changes, supplementing for brain and body health, and neurofeedback.

Hope you enjoy the info here. Stay well.

[tinasmom]

Welcome Eve -

If you think that you should talk with another doctor, then I would suggest you make an appointment with another doctor. When my daughter was diagnosed, I knew very little about E. I thought that medication would stop the seizures and everything would be ok. We listened to her doctor even though we had doubts, we just thought that he knew everything there was to know about E. How wrong we were. After my daughters death to Sudden Unexplained Death in Epilepsy, I found this forum and have learned so much about E and doctors and my choices for my granddaughter, who has E.

I wish you the best of luck.

[dfwtexas]

I got lucky with my neurologist, he is very understanding and really listens to me, I always have a list of questions/concers. My infectious disease doc was the first that thought I was having seizures and he told me gave me the name of my neulogist. He told me a little bit about my neurolgist's background and told me that his office is totally decidated to neurolgy, they have complete lab, all facilties (EEG,MRI, sleep clinic) and all the doctors there are either neurlogists or neurosurgeons. He is good when I go, and does a check on my reflexes, cordination, vision, etc. It makes a difference when you have a doctor that comforts you when you have concerns. In my short time with E, I have come to learn that my attitude about it, really is a big part of it all.
The generic Keppra is very new, just came out in November. Not everyone knows it is even on the market. I actually think your dr is correct about generic seizure meds. I tried the generic and got terrible migraines at night and as soon as I got off the generic and got it out of my system, no more migraines. There are a few topics on here and some of the reactions to the generic. Some are doing great and some have even had seizures on it. Doing internet searches, I found a lot of complaints about it. It is my understanding is the fillers they use in generics create the problem and with the generic you may only be getting 80% of the drug itself.
Keep us updated!

[Eve]

Robin I am happy to hear that you are managing your daughter's Epilepsy with alternative therapies. It's got to be tough being a mother and dealing with your child having this disease. It is hard enough when one of us adults have to deal with this! How long has it been since your daughter last had a seizure?

TinasMom So sorry to hear about your Daughter! That must be so difficult to deal with. How old is your grandaughter? I am looking forward to seeing a different doctor next week. Thank you for the welcome.

jgb I am happy you have a DR that understands you! I see you are a migraine sufferer, I also get them! For a while they had me on topomax. Topomax was great at getting rid of my migraines! But the topomax messed up my focus to the point it became a problem with my driving, so I went off the topomax. But I liked loosing the weight while on them! My Dr seemed to feel strongly about not using a generic. He said just a slight small differenece in the medication could cause a seizure. Also I had a pharmacist also tell me that if I used a generic for seizures I needed to be cautious.

When I was in the hospital in July for knee surgery. I was in the hospital for 6 days. I take Carbatrol. The pharmacist did not have the Carbatrol so they gave me Tegretol instead and it caused me to have a seizure. Although the Doctor did say that the narcotic pain medicine they had me on at the hospital could have also contributed to the problem!