Thank you, at first we too were worried about medication induced seizures, because it started two days after the er had given me a mega dose of toradol & found out that toradol could cause seizures. But at the same time, this had started back when I was 16 and there after- before I had a slew of medicines I was on. After my neurologist apt today (the same office I'd seen ten yrs ago) they went over quite a bit with me-my history, my EEG, some of my family's accounts over the years (things they'd never brought up to me until today) etc. He told me my diagnosis is now a form of epilepsy- a type of "Uncontrolled Seizure Disorder". That of as of today I need to "protect my brain" at all costs, and instructed some of my family that came with that if my seizures last longer than 3-5 mins they are to promptly call 911 that its very possible for me to slip into a coma state or worse complications that result in death (yeah kinda got scary at that point). He wasnt seriously intense besides that, thankfully. So as of right now I'm started on a drug called "lamictal" and "neuronton". I have to come back in a month and in the meantime get an MRI and some bw done. He said sometimes it takes awhile to get just the right med and dosage to make seizures livable, and after talking the neurton over-I hate taking more pills than I need-he agreed I could start with one, but he'd like to see me make my way up to 3xs per day.
I know I should be happy to have answers, possibly something to regain control...but at the same time it feels as if its another mark against me. Namely because isn't allowing me to drive for at least 6 months and isn't sure if the state of IL will allow me to renew my drivers license now he's made this diagnosis...which for me is the biggest blow of all. I guess I'm just fed up of being told what I can't do, or losing what I could.
i totally understand the frustration.
Originally Posted by Bakedtater08
it is almost that they are trying to seperate you from what you used to be.
sometimes it is hard to see the good side of our life changing decissions.
I know how scared you are. I have been there. I won't tell you it completely goes away but as the seizures become more controlled so does the fear. It does take awhile to get the right doses of meds. It DOES get better. Life does return to a more normal place. I promise
The jerking you describe is called myclonic jerk. It can be a neurological symptom or a seizure in itself. I know the "building pressure" feeling you descibe all too well. I get that same signal before I have a seizure -- that and a very confused feeling and a difficulty speaking. When that happens, I know a seizure is imminent and that I better sit down quickly.
You got out easy on the video EEG. Mine was a four day event at the hospital. I was only allowed to sleep one hour per day for four days, and I was constantly monitored via video camera and heart and brain electrodes. During that time, I had the light stimulation, exercise stimulation, and hyperventilation. While I did not have a true seizure during that time period, I did show what the neurologist called "build ups" often seen in epilepsy. He diagnosed me with left temporal lobe epilepsy, wrote me a prescription, and sent me home. I was home about two hours before I started seizing again. I had to return to the hospital four days later for another video EEG. This time, I had a seizure while I was there, and the doctor changed his diagnosis. I did not have epilepsy. That began a two year nightmare of me hopping from doctor to doctor trying desperately to get answers. I had to stop teaching -- went on disability for four months until summer came. By August, I was somewhat better and able to work, but I still did not know why I was having an average of four seizures per month. I saw two neurologists, a psychiatrist, two endocrinologists, a homeopathic doctor, and an internal medicine doctor. No one had answers. Finally, a gynocologist looking for signs of menopause discovered I had an autoimmune thyroid disease called Hashimoto's disease. It took another three doctors before I found one who believed my seizures were related to that disease, and one who practiced according to the latest research for treating Hashimoto's. Once I began my thyroid regime, my seizures all but disappeared. I have only had three since last February when I began treatment. I have numerous other problems still, and I am now trying to find a rheumatologist who will treat my autoimmune issues without bloodwork to back a diagnosis. I have only a positive ANA and high thyroid antibodies. Even with my many, many symptoms, I can't find anyone willing to prescribe Plaquenil. They don't use that for autoimmune thyroid disease, and I have no other positive blood tests to show any other autoimmune diseases. So for now, I take Synthroid and Cytomel for my thyroid disease, Neurontin for the burning and pain in my feet and hands, Lodine for my severe joint pain, and Bystolic for my high blood pressure. I have a new numbness in half of my right hand, along with various other strange symptoms that come and go. On a positive note, I rarely have a seizure any more.
My children are all grown, but they and my husband were extremely fearful when I first began having seizures. Now, they plop me in a chair and wait it out. No one panics anymore, and there is no big to-do. It is just a thing we deal with. I think your son will get used to it, and he won't be so upset by them. Of course, I hope you find medication that controls them so he won't have to.
I do want you to understand, seizures are different for everyone. While there are commonalities, you can't really compare another's symptoms or signs to your own. There are many type of seizures, and they manifest themselves according to the type. They also manifest themselves according to what part of the brain is affected. Also, be careful of misinformation. There are many, many myths related to seizures, and there is some very outdated information still floating around. Talk to your neurologist. While it is helpful to talk to others with similar problems, use your neurologist as your source for accurate information.
Don't give up on finding a doctor who will work to find answers. Keep educating yourself, and be an advocate for yourself. If you know, yourself, what you DO NOT have, you'll save yourself a lot of time and money. It took me awhile and a lot of research to get to that point, but once I did, I knew as soon as a doctor started talking if he was going to be a help or a hinderance. Hang in there! Someday, someone will listen, and you'll get on the right road to help. I hope it happens quickly for you!
Wow, jolynnhughes... and I thought *my* Hashimoto's had progressed much too far when my new doctor found it. Also of note with Hashimoto's a lot of time is very low vitamin D and possibly vitamin B12, which you should probably be tested for. There are RA patients using plaq, so if you're RA positive, it might help... but be sure and have them check you for low D & B12. The B12 affects your nerves like you wouldn't believe (believe me), and can lead to de-mya-whatever that is where the nerve sheathing gets deteriorated...
Bakedtater08, most states (I *think* Illinois is included), will re-new licenses just fine, so long as the epilepsy is "controlled" by medication. There would most likely be restrictions. Of concern will be insurance. It can get expensive...
Most AI diseases have low Vit. D issues so they should always look for that. You would be amazed at what problems that can cause. As for driving, in Texas the law is 6 months seizure free. All states are different but as jmail stated, it comes down to them being controlled by the meds
Jmail, I have not been diagnosed with RA. I had a positive ANA, but nothing else was positive, so the rheumy told me it was likely from the Hashi. She said lots of people have a positive ANA but don't have autoimmune issues. Brick wall! Same brick wall I've been hitting with doctor after doctor. I was checked for D and B12. I was low D and took high doses but no change. It's fine now, and I continue to take maintenance doses. My B vitamins are fine. I'm much better in so far as day to day management. I did finally find a rheumy that would prescribe the Neurontin for the burning and pain in my feet and hands and also the Lodine for the joint pain. Once I got started on those, I could get through the night and then the day. That sounds weird written out, but the day and night problems were/are very different. Today, I have faith I'm going to find someone who will go the distance and get me on something that will prevent the progression (if there is progression -- who knows). I may feel differently tomorrow, but that's the way it goes. I stay positive until I can't and then, well, I find a way again. I'm sure that is many of our stories.
Definitely, on the "many of our stories". Keep plugging away at it with the docs, and don't let up on the "search" for answers...