What's the longest you have been siezure free

[LMReggcellent]

I was diagnosed fourteen years ago. Seven years ago I had a lobectomy that stopped my seizures for about four months, and since then I may have gone 3 or 4 days.

[lavatera]

I have gone 40 years without a seizure except for 19 years ago, when I forgot to take my meds three times in a row, as I was very busy with my baby son.

I take dilantin and primidone. Primidone is hard to get sometimes, which is why I am seeing a neurologist again two weeks from now. Has your sister had an MRI and an EEG yet? By the way, from what I have read on this site, an EEG does not tell you everything.

I got epilepsy from a very bad bang on the head. At the time and for many years after, the doctors would not even acknowledge that was the reason, but the timing was right. My prayers are with your sister. My gp figured out what would work for me, not any of the neurologists that I saw. He figured it out after both my mom and dad prayed for me.

The neurologist is talking of weaning me off my meds as I have not had a seizure for so long. I simply say that that they are working. He thinks he knows best. sigh

lavatera

[Aaleayha]

9 months due to chiropractic care and My meds. Then I ran out of money and I had to stop seeing the chiropractor. It came back.

[lavatera]

Oh my goodness. That is too bad. Then again, at least you know that your Chiropractor can help. I wonder how that works.

My neurologist wanted me to stop taking one of my meds and increase the one that I have had trouble getting due to a backorder that I think is okay now. That at the time made absolutely no sense to me, as the reason I went to see him was because of the backorder, which my husband and I told him about the first time, before he sent me for tests. I will not be going back to him. Is there such thing as a good neurologist I wonder.

Have a good day,

lavatera

[Aaleayha]

I wonder as well! Every neurologist I've been to have diagnosed me with psychogenic non-epileptic seizures, said I wasn't thinking right? Whatever that means. We gave up on them. My regular MD is the one who found the two growths in my neck. He did more for me then they ever will. So my chiropractor has to be careful.

[lavatera]

Wow,it was my md who also figured out what meds worked for me as well. My husband just thought it was coincidence, but my MD figured it out after the nuerologists gave up. Since I had a hit to my head which caused the epilepsy, and still have a scar on my brain according to the MRI I had a few months ago, I was not sure, but would count on an MD before any neurologist.

My husband thought that maybe the scar on my brain had caused swelling which is why when my md figured out what worked, at least two years had gone by,so my husband was wondering if maybe the swelling we were never told of,( so I don't know if there was any had gone down), so when my md prescibed the meds he did, they worked.

I did go to a chiropractor years ago when I hurt my arm, and she was also very careful with me as I told her I have epilepsy. She told me she would never move my neck as I was concerned about that, but her reason for not moving my neck had to do with epilepsy.

Thank you for telling me this.

I wonder how many others have had their MD figure out what meds would work for them instead of their neurologists.

lavatera

[Aaleayha]

Neurologists seem to only focus their attention on the brain only, now-a-days. I had 30 seizures (clustered) in the hospital, the EEG couldn't find the reason so they just gave up. Didn't even bother wondering why I would have thirty seizures in less then 24 hrs.

Me and my mother were actually the ones who found the reason. Having 12 seizures a day, we were desperate so we took it into our own hands. We did motion ranged tests and after a while we noticed that it was in my neck. We told them and they blew us off. Only my MD believed us, and he prescribed Lyrica for nerve damage. It's been a god -send! But sadly, it started getting worse a month ago, shooting pain all the way down to my toes and then going numb and unable to walk. So my MD did an MRI on my NECK that time. And lo and behold, we were right.

I wouldn't be surprised if the numbers are uneven on the MD/ neurologist ratio.

[lavatera]

Wow, I hope your MD can help you. I wonder why it has gotten worse. Lets hope that stops soon. Yes, a nuerologist should be concerned about the number of seizures you were having. That should have been enough for them to prescribe a strong med for you. It sounds to me like you also have been blessed with a wonderful mom. Is there such thing as a neck specialist? If so, maybe that is the route to take. I wonder if physiotherapy would help. I do not know where you live, but the government does not cover it here, and when they did, my doctor switched me from the one I was going to as they gave me the wrong exercises to do, but when it comes to your neck, please be very careful, okay? I know you are, I just care, thats all.

Have a good day,

lavatera

[Aaleayha]

We are looking into a neck specialist but we aren't sure if there are any around us. I have two bone growths in my neck, that are still growing, that have started to put pressure on my spinal cord and possibly my brain stem. They have to remove them but the doctors tell me they want to wait a few years until I get older? I'm 23, I don't know what it's suppose to accomplish but it getting bigger and worse. I barely move my neck now, out of fear.

My mother is doing her best. It's getting harder though. The surgery if we had insurance, which we don't, would cost at least 34,000 dollars (I think). We are so tightly budgeted at the moment that we barely scrap by with enough food... even then we go into our rent money every month and we get late charges and our vehicle is dying. We have to move back in with HER parents in a tiny 3 bedroom house to even consider surgery.

[lavatera]

Yikes, that must be really really hard.

I wonder what is causing the growths. That would be something to find out, as they can remove the ones you have, but since they are still growing, I would want to know the cause, so that the cause can be treated, if possible, as the unknown cause could even make another growth possible. Please remember that I am not an MD, and do not want to concern you. Have you had an ultrasound on your neck? I wonder what that would show. Has anyone else in your family ever had this problem with growths anywhere, it does not have to be their neck. Just a thought.

lavatera

[Aaleayha]

Yeah, my grandmother and my mom have this. It's part of genetic degenerative disc disease. My grandmother has them all the way down her back. And my mother broke her back in the lumbar area. I think that's why mine are growing but, mine is serious because I have them so close to my brain. I don't there is a treatment for degenerative disk disease.

But even so, I don't understand why they would even consider waiting. I would pay off the debt slowly. But I know they want too much up front.

[lavatera]

I think it is because you are still growing until you are 25, or so I have been told. At least you know what this is that you are dealing with. Perhaps you could ask them why they want to wait so long, as they may have a differernt answer, and one that is more helpful.

Did you get my pm?

Talk to you later,

lavatera

[Aaleayha]

Oh, I thought you stopped growing at 20-21. But they didn't give me a reason. That's why I'm partial to the idea of money. But it is nice to know the cause.

Yup, I sure did. I sent one back too.

[lavatera]

HI,

I did get your pm. I just got back from Church a while ago.

Have a nice evening,

lavatera

[acpollard2010]

longest i have gone is a month that is not even a really a good diagngosis.

[lavatera]

Wow!

Were you able to do this with or without meds?

lavatera

[lureswinger]

I am getting sick of this change over from tegratol to lamotragene I started on 600mg tegratol twice a day now I'm down to half that but the neurologist doesn't want me on any more than 300mg of lamotragene but I'm 3/4 of the way there and I'm aleady getting sick of myclonics I just don't know what to do

[lavatera]

lureswinger,

Does your neurologist and MD both know that you are having myclonics? I am no expert by any means, but my guess is that you are being weaned off of a med too quickly. Just because the books say one thing doesn't mean it works with all of us. The entire population is different and unique, we are not cookie cutter people, which many neurologists do not want to understand, it seems.

Perhaps you could tell your MD about this if you have not, as your MD should know about this from you, regardless of the cause. I received more help from my MD than my neurologist. Just a thought.

lavatera

[lureswinger]

I have a good doctor or had as I've just found out she is leaving the practise which means ill have to get used to another one not really what I need but I have no doubt ill manage to sort out working with the new one

[lavatera]

Perhaps this doctor will give you some references for other good doctors. What will happen to your medical history that she has when she leaves? Maybe you could phone and ask about that.

lavatera