Break Through Seizures

[tam bam]

Okay, I posted last week saying I was doing better on the Topamax and the Lyrica and that I wasn't going back to see my neurologist. Well, I am still not sure about my neurologist. We have been playing phone tag and I have yet to speak with him to air my grieviences but did in a letter. I think I have said all I need to say to him and let by gones be by gones. He has done nothing for me and doesn't know what is wrong with me so I think I should just move on. Some doctors just find me complicated and don't want to spend that extra time to try and help. When other doctors in other fields of medicine have seen my seizures and have said yes, you have complex partial and simple partial seizures that generalize but the thing is they do not show up on tests and that is where it gets complicated.

Anyway, Saturday I had two break through abdominal seizures. I also had a complex partial seizure as well on Saturday. All and all it wasn't that bad but since I have taken the Topamax the seizures have tapered off.

I went to see my OB-GYN this morning and she is in the same office as my family doctor and she checked with my family doctor and upped my Topamax and I told her about my neuro problems and what not and she went ahead and gave me a years worth or meds so now I don't have to worry about my neurologist right now so that is a good thing. Whew, one less thing off my mind at least. I'll get the whole neuro thing decided one day, I hope but until then at least the seizures are reduced which makes me happy.

To the people out there who have complex partial seizures or simple partial seizures do you have problems with doctors not being able to figure out your seizures? Or being able to get controled on meds? Do you have many types of focal seizures going on? Do doctor's label you as complicated?onder: Sorry for all the questions.

tam bam

 

[vapour]

My seizures were suspected by my psychiatrist from day 1, but I did not bother seeing a neuro, I was on lamictal anyway. When I came off lamictal for bipolar.. I was hit with seizures big time. that was over a year ago now. At first it only affected me on waking and falling asleep, so my first EEG showed practically nothing (slight abnormality however) becuase I could not fall asleep during it. However I was put back on lamictal. I came off it again because of the cost. This year was v bad for me with simple partials and complex, it got to the stage that it was so bad...that yes... it showed up on tests very clearly...so that part was not complicated.

What has been complicated for me as mentioned in other posts is when I was on the psych ward and my neuro could not get through to the psychiatrist.. so I was not getting lamictal (because its also a psych med)...

Also when discharged the social worker got me in to psych UCLA, now.. here is where the political games started.. and thus was complicated. Psych UCLA wanted to blame ALL of my mood and emotional problems on temporal lobe epilepsy...so therefore they would not have to deal with me or prescribe me medications which I would get free from county.. and medications that would also control seizures.....(because psych meds do both)

Obviously it would not be fair to put ALL of this on my Neurologist, beause the truth is that not ALL of it is the temporal lobe epilepsy... but they wanted to get out of 1 more patient...

This ridiculously went on for weeks and weeks and was extremly frustrating. At one point they said I could not see a Neuro and a Psych because of the overlap in medications.

My old psychiatrist went down to UCLA and spoke with them, now I am being seen by a psychiatrist there who is working very closely with my Neuro. The political doctors are not very happy about it I dont believe, and I dont think even now I am "officially" on their charts.

When I get in with Neuro at UCLA (have been on the waiting list months.. so should be soon) then I dont think they can make exucses like this, and it will all be under one roof.

I am sorry about your tests tam bam. It gets to the point where even though you dont want seizures you WANT them to show up on the tests so you have peace of mind about all this....but here is the thing...an abnormal EEG doesnt mean anything, and a normal EEG doesnt necessarily mean anything either... and accourding to my neuro most MRI's show up normal.

Did your Neuro stay with you during the EEG ? because the first I had done was baaaddddd......it was a technician do it.. her cell phone rang in the middle of it... one of the electrodes were not attatched properly....

My 2nd was done by the epileptologist herself. NOT ALL of my seizures showed up on it either... too deep in the brain.

If I were you, I would not worry so much about what the Neuro thinks, or a label/....concentrate more on getting it under contorl and being well. It seems like your family doctor is really trying to help.. so you have someone there....

ALso see if you get breakthroughs on your menstural cycle... hormones really affect me.

 

[dfwtexas]

I have both simple and complex. I got diagnosed a little of a year and half ago and take Keppra. I am having problems getting the level of meds correct. I can go 4-6 months without seizures and then get a few together. I go back next week to neuro and not sure if he will up Keppra level again.
I met a couple of people with the same type of seizures and they said it took about 2 years to get their meds at the right level, so I hope I am getting close
jenn

 

[Nakamova]

Some people have more than one kind of seizure, which can make it hard to find the right med or combination of meds to do the trick. The doctors probably say it's complicated because they have no simple way to predict what treatment will work. Even if your different seizures don't show up on an EEG, the doctors should still try and treat them based on the clinical evidence that you present.

 

[Crystal11]

I have never had troubles with my neurologists. I just got a new one and he made sure of the diagnosis from my last neuro of course, as they should. And then we discussed the meds I'm on, and what can be changed. I go for an MRI tomorrow at the hospital which I hope shows something that might be the reason behind my seizures.
My neurologists say my seizures are caused from dying once at birth for several minutes- and being born premature. I also had heart surgery for a PDA closure at 4 hours old. Lots of trauma to my body as such a young age. I was oxygen dependent for 4months and my twin also had the same troubles. She also has seizures too.
We both have complex partial seizures, blindness and deafness. So our doctors I'm sure think we are sort of complicated due to multiple disabilities etc. Anyways- maybe after more testing we will know a little more.
Last visit, found out that my seizures are on the left side of my brain. I am on Tegretol XR, Keppra XR and now Lamictal. I've tried Dilantin which didn't work at all.

I wish you luck with your doctors, and hope you find some help soon.

Take care,
Crystal

 

[mglynn2]

I started having seizures when I was 15 (I'm 21 now) and they were just simple partials. As of right now I am on Keppra, Lamictal, and Topamax and also have a VNS implant but since my seizures first started I have been through as many medicines as I can think of. A year ago I started having tonic-clonic seizures as well and it seems like I am getting worse instead of more controlled. When I was 15 I started going to a neurologist in my hometown but she didn't know what to do with me so I go to a neurologist a UVA who is very helpful and works well with me but at my last visit he called in another doctor because it seemed he didn't know what to do with me anymore. That is making me look forward to my next appointment in January haha. I have been through multiple tests and the doctors cannot figure out why I have my seizures or where they originate. :dontknow:

 

[Cint]

Tam bam,

I was labeled as a complicated patient. I had simple partial, CP seizures. Then had a left temporal lobectomy and was only seizure free for 14 months. the seizures came back more complicated after surgery than before as did the depression. So they started trying more drugs, more depression, more drugs, more tests, more depression, etc. I was being seen by an epileptologist, a neuropsychiatrist, a therapist, a ob-gyn, and none of them could get it together. The epileptologist and neuropsychiatrist were at the same facility were I had the brain surgery, too. They called me a complicated patient.
I also had the VNS and the seizures have diminished significantly, but I still take meds along with it.