Concerned, what should I do?

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Sorry about your expierences, hopefully your seizures stay controlled and you can get behind the wheel soon. Good luck to you and keep your chin up.
 
Jezy said:
Sorry about your expierences, hopefully your seizures stay controlled and you can get behind the wheel soon. Good luck to you and keep your chin up.
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Thanks. I'm not sure how I feel about my neuro's reaction. It seems like a waste of time and money for me to have gone in for an EEG for no action to have been taken. I also don't like that the doctor has not asked me what I would like to do given the situation. I would prefer to not have seizures even if they are mostly simple partial, but I also am not keen on making the effort (time and money) to control seizures that are so trivial. If there really is no concern about the seizures getting worse (which I think they will, given time) then in theory I should be fine. The in theory part is italicized because I wouldn't be at this point had I not had at least three generalized seizures before they started me on Keppra. What caused those seizures? Perhaps it was 10 years of untreated simple partial seizures. If I could prove that, then I would probably press charges against the doctor who took me off my medication in the first place.

Anyway, I just don't know, I will have to think about this for a bit and make a decision.
 
You're right it ispossible generalized seizures might return I have gone fairly long periods and then they pop up again recently in my case. I don't know why some doctors seem indifferent maybe they have to large a patient base and just go through the motions. I think a lot of it might have to do with covering them self from law suits, I gave you a EEG you came in and I am giving you Keppra so I don't have to worry about not treating the earlier seizures you had. I investigated and found there was a doctor at my practice that had a million dollar suit against a few years ago you can try and google your doctor.
 
Well I had an appointment with my psychiatrist today. She increased my dose of cogentin because of my tremors and she also started me on a low dose of propranolol to help. She was concerned about putting me back on 80 mg of propranolol because she thought it might make my resting heart rate too low. Unfortunately because I recently refilled my propranolol prescription through express scripts my insurance blocked the new prescription. So for now I'm just going to take the full 80mg dose since I have an unopened bottle of 80mg capsules.

She indicated that my diagnosis is bipolar. Last time I went she seemed hesitant to diagnose me as schizophrenic, and I think this makes sense. More specifically she called it "rapid cycling" bipolar. This diagnosis agrees with the psychiatrist I spoke to last summer while in the ER (except for the "rapid cycling" part). As a result, she started me on lamictal. So for the next few weeks I'll be titrating up to my new dosage. I have a follow up appointment in 4 weeks.

All in all I'm pleased and happy with my new psychiatrist. She really seems to be digging into my medical history and I appreciate that a lot. Now we'll see what my neurologist does. Unfortunately I don't go back until January.
 
I think I will probably start a new thread for this, but since I'm thinking out loud I'll just post my recent concern here.

Back in July when I started having generalized seizures, I wound up in the ER twice. The first time it happened was just before July 4 holiday. I was brought into the first ER because I was status epilepticus with focal seizures, and sure enough I had a tonic clonic seizure. My mom was there to witness it as were some other family members. I just happened to be at my mom's house when a tonic clonic seizure happened. This would actually be the second generalized seizure that I had since I had one a few days earlier. The reason for my concern is because the ER did nothing for me. Not even medication. I wasn't taking any drugs for E at the time nor did the ER doctors start me on any. As a result of this, I had at least one more tonic clonic seizure a few days later. With this third seizure, I was in my apartment alone, having just gotten back from being out at a bar. This particular seizure caused me to dislocate and fracture my right shoulder.

My concern is that the ER should have done something. While my mom was here a few days ago for my psychiatrist appointment she mentioned pressing charges against the first ER. My question is probably better suited for a medical attorney than this forum, but the question remains. Should I consider pressing charges against the first ER for not starting me on any medication. In effect, I would consider this to be negligence on the part of the ER doctors for not wanting to "mask" the cause of the seizures (their words). I don't remember my visit at this first ER probably because of the seizure so I don't remember what tests they did. All I know is that they did nothing for my seizures at the time, which resulted in some very severe consequences when I wound up in the second ER.

What do you think? Should I press charges? Frankly, I don't really think it's worth the hassle and probably would be very expensive, but if I can find a lawyer who will work with me, it just might work out in my favor. I wouldn't ask for much, just legal fee costs and reimbursement for what has now been two months of physical therapy, various medical costs related to seeing my new neurologist and the orthopedist, and the copays for the surgery and subsequent hospital visits, and salary for time missed from work (about 2 weeks or so). I think that is more than fair, personally.
 
İ think they were negilent in not giving you anything after a seizure it's hard to understand that type of inaction but it is proably going to be hard to prove.St my last appointment my doctor seemed more concerned in.reading a laundry list of things I should not do maybe to cover himself legally
I am sorry about all you have been going through.
 
Well this past Monday I had my neuropsychological evaluation. It was roughly 4 hours of tests. Most of the testing they did was memory testing. The technician would recite words, word pairs and numbers which I had to remember and recite back in various ways. There was other tests such as drawing figures with shapes and random details. I found the testing to be rather tiring and I don't feel like I did particularly well. I did a little bit of research on the test book the technician was using. Many of the tests were from the WAIS-IV test book. There were also some questionaires I had to fill out, one of which were questions about my seizures and how I felt about them.

After the testing, I met with the psychologist who would be reviewing the material they collected. One thing that stands out is she asked how I felt about my neurologist. She then preceeded to tell me that USF has epileptologists and it might be worth considering seeing one.

So yeah. Not sure what the psychologist will make of the results of the tests or how it will affect my psychiatrists decisions. I guess I'll find out in a month when I go back to see my psychiatrist. For now, my psychiatrist has me on several medications. Saphris, an antipsychotic, Cogentin, for tremors, propranolol, also for tremors, and lamictal. I'm not sure the reason I'm on Lamictal, but from what I have dug up, it seems it is partially to do with my bipolar diagnosis, and partially should help with my seizures. Right now I'm only on a 25mg dose, so it's pretty minimal. We'll see if that dosage gets increased at my next visit.
 
The test can be useful even if only as a baseline. If you think you are experiencing cognitive issues in the future (either from illness or from meds) you'll have this initial set of test results for comparison.
 
Well my neuropsychology test results came in the mail today. It seems that I am OK and not experiencing any cognitive impairment. The psychologist has diagnosed me with schizoaffective disorder - bipolar type. This seems pretty similar to my existing diagnosis of psychotic disorder NOS. In the results, she also has recommended (by name) an epileptologist. I've never been to an epileptologist before but considering the circumstances I think it is a good idea. I still have multiple seizures a day (the minor, focal seizures) and it would be great if they could find some combination of medicines that would stop them dead.

In the meantime, I'm glad that my medications seem to be OK as is and that I have found such a good psychiatrist. Here's to hoping I can drive again soon! :beer::beer:
 
Would just like to share My Personal experience. I have been on generic Keppra since 2006. I asked my dr. when I first started if I could drink. He said, "Yes, maybe one." In 2011 got a new dr. he said "No alcohol."
Last year I was on 750 mgs. daily and noticed that if I was late taking dose would get aura. I am very conscientious about taking so was very surprised. Lesson learned. This summer tried to get off totally. After 34 days off, had a seizure at meeting. Was put back on 1000 mgs. daily. Last month started having auras and dr. increased to 1500. I notice that if I have one beer will get severe headache. So I have stopped even that one. As others here have said, over time our seizures change and we have to adjust our lifestyles to that. I am going in for video eeg on Dec. 7 to find out what is happening cause now my dr. is saying this may not even be E?????
Good Luck!
M
 
hello marika853.

Regarding alcohol, one of my medications specifically states not to drink, but I do it anyway. I'm not saying you should drink, but you should be careful of any side effects that might come from alcohol. In my case, I take cogentin for tremors. I have heard from my doctors that drinking usually helps with tremors, but this has not been my personal experience. I have also not noticed any reduction or increase in seizure activity from drinking. As a result, I consider it ok to have some drinks (in moderation) even though I take so much medication. That said, alcohol withdrawal is a migraine trigger for me. I don't always get a migraine from drinking, but when I do it usually comes on pretty strong and the only way to shake it off is to fall asleep.

Good luck with your VEEG. It is possible that seizures can come from other sources than epilepsy. Psychogenic non-epileptic seizures have been in discussion here recently and it is good to rule out that possibility. If the seizures you are having were "non-epileptic" the treatment would be different. Good luck!
 
Well I saw my psychiatrist two days ago. She decreased my doses of Saphris and Cogentin because I was oversleeping. She also increased my dose of Lamictal to 50mg/day. My thyroid levels were low so I think she is prescribing me some medication for that as well, and lastly she wants me to have Vitamin B12 injections. She explained that my diagnosis of bipolar is strong because of my oversleeping, so there is no question that I am bipolar. I previously mentioned that my diagnosis was schizoaffective disorder bipolar type. Apparently schizoaffective disorder has several types (I thought there were only 2) depending upon the symptoms.

Oh, also, my psychiatrist also submitted an order for me to see an epileptologist so they will call me soon to set that up. Looking forward to that as my seizures have remained constant. I went to the DMV on Tuesday and (after getting paperwork from an eye doctor) the first question that she asked was "Have you been seizure free for 2 years?" Well go figure, what I am to do when I have multiple seizures a day? I suppose I could have just said no, but I'd rather have a doctor give me permission to drive so I don't kill myself and/or someone else. I haven't been "seizure free" in probably 20 years when I first started having seizures. Oh well.
 
Thought I would come back and update this thread. Unfortunately I'm caught in a bind now because I got laid off two weeks ago. I have regained my driving privileges (hopefully for good) and I believe that my doctor has cleared me to drive (I'll know for sure when I see the form she mailed me). Getting a drivers license has now been a 6 month ordeal that has resulted in my seeing an eye doctor and consulting my neurologist for monitoring my condition. Fortunately the Keppra has been doing it's job and I have not had any more tonic-clonic seizures. I still have daily seizures but they are just simple partial seizures that don't cause any issue in normal day to day functioning.

My psychiatrist resigned back in December so I recently saw a new psychiatrist at the same office. My medication appears to be okay so nothing has changed there. I also got a referral for a sleep study but since I got laid off that will have to wait until I go back on COBRA for insurance. So far the journey has not been simple but things are getting done slowly.

With my recent unemployment I am finding it difficult to find a new job. There are many good engineering companies in Florida but they are mostly in the aerospace and defense industry. Finding a job out of state really isn't worth it given all the hassle I've had to go through just to get a license. So we'll see what happens from here. In the meantime I'm staying at my mom's house. I found a temporary job with a professor at UCF who I used to work for so that will supplement my income while I try to find a new job. My other option is to stay here in Orlando and go back to school to do a PhD. It all hinges on what opportunities I find. I was previously accepted at UCF to do a PhD but unfortunately I didn't have a source of funding so I took a job offer instead (which is how I moved to Austin, TX). From this point forward I have no idea where life will take me.
 
Well I drove back to St. Pete to check my mail (about a 2 hour drive from my mom's house where I'm staying) and my neurologist said she mailed back the form that the Florida Department of Highway Safety and Motor Vehicles requested. In the letter it clearly states that she does not recommend I drive because I still have continuing seizures. Not sure where to go from here, looks like I'll have to find a place to work with good public transport.

I kind of wonder how my doctor can be so forthright with her recommendations based on what I feel is a lack of proper treatment. I have an appointment with a new neurologist but it's not until March.

This sucks!
 
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