Can't decide what to do ... call or wait?

[sjconner]

The neuro I saw for a 2nd opinion didn't think I had epilepsy. She didn't offer any other explanations or ideas. She thought that the meds might be making everything worse. I have been tapering off Lamictal; I started the taper the last part of March. I was at 300mg 2xday. Now I am at 150mg 2xday. I am supposed to stop at 100mg 2xday (end of May). My neuro recommended seeing a clinical psychologist. I have had several visits and she doesn't think that therapy will change/help my neurological symptoms.

Nothing has changed! I still have the same stuff going on. Occasionally, I still wake up not knowing anything and then have a terrible, horrible, no good, very bad day. Some of the "not knowing anything" is starting to happen during the day. I still put things in weird places and don't remember even being at that location. Saturday, I woke up with a massive headache and slept most of the day. I felt like someone drained all the energy out of me ... like you feel after being violently ill for several days. I haven't been sick. I never have headaches, I always have migraines.

Should I be seeing some changes or does it take longer? My episodes or spells or whatever you want to call them did not ever seem to respond to meds.

On the plus side ... I am not falling down or having double vision anymore.

Should I call the neuro and tell him nothing is changing or wait until my next appt? My next neurology appt is the end of June.

 

[niceguyVZ]

Keep caling. I have changes and problems and i've been calling a few times. My appointment is also far away.

Don't be afraid to call and leave a message

 

[CQ:)]

sjconnor,
I think you should contact your neurologist & keep ringing him until you get some answers.
I don't know if you have an epilepsy nurse but if you do maybe get in contact with her to see if she can help.

It sounds like the Lamictal was helping so you may need to stay on it.

 

[Belinda5000]

Have you tried going to another neuro for another opinion?
I wouldn't wait I'd find someone else if that doc wouldn't return calls.
Yes is nothng is chaning you should have let that doc know.

 

[sjconner]

It is not that he hasn't returned my call. I haven't called. I wasn't sure if I should call. Or if it was too soon to see any changes and that I should wait.

 

[CQ:)]

It is not that he hasn't returned my call. I haven't called. I wasn't sure if I should call. Or if it was too soon to see any changes and that I should wait.

Did your neurologist say to feel free to contact them if you have any issues?
I think it's worth calling the neurologist to see what he/she says.

In March I saw my neurologist at the epilepsy clinic & I spoke to him about some funny feelings I've been having for a little while which they aren't sure but thin may be simple partials. My neurologist wants to get these funny feelings under control so we agreed to alter my medications. He put me back on Tegretol (I was able to come of Tegretol last year because my seizures were controlled) & told me he wanted to monitor these funny feelings.

I only see my neurologist when I'm at the clinic but we communicate with each other through my epilepsy nurse/neuropsych.
I had to email my neuropsych or epilepsy nurse a month after started back on Tegretol to let them know how I was going & if the Tegretol helped reduce the funny feelings.

 

[Nakamova]

The neurologist I saw for a 2nd opinion didn't think I had epilepsy. She didn't offer any other explanations or ideas.

Any chance you could find a 3rd neurologist/epileptologist? #2 doesn't seem that helpful...

 

[sjconner]

I called the neuro and spoke with his nurse. I told her that nothing had changed. The double vision and ataxia were side effects of another med I was on. She is going to give him an update. He will be in the office on Monday. I would like to get a third opinion. If I can I will probably go to the Swedish center in WA.

 

[lindsayschu2]

I remember you went to Anschutz, correct? I go there on the 28th. Who specifically did you see? Anschutz is really well respected and they have like 6 epileptologists, and they often confer on cases. If you don't want to go to yet another dr in another state, you could ask Anschutz to have another of their epileptologists review your file and see what they say before going somewhere else. I don't know how far WA is from you, but if Colo is closer, I saw someone at Swedish in Colo and they are really good too. They have a focused epilepsy center. Let me know if that is helpful to you and I could let you know who I saw.

 

[Cint]

I remember you went to Anschutz, correct? I go there on the 28th. Who specifically did you see? Anschutz is really well respected and they have like 6 epileptologists, and they often confer on cases. If you don't want to go to yet another dr in another state, you could ask Anschutz to have another of their epileptologists review your file and see what they say before going somewhere else. I don't know how far WA is from you, but if Colo is closer, I saw someone at Swedish in Colo and they are really good too. They have a focused epilepsy center. Let me know if that is helpful to you and I could let you know who I saw.

I also go to Anschutz and see Dr. Laura Strom. I used to see an epileptologist at the Colorado Neurological Institute, which is at Swedish Medical Center in Englewood, Co, south of Denver. I changed to the UCHSC (Anschutz) because I felt like I received better care there. But I also see an endocrinologist at Anschutz, so it is better for me because they are all on the same team and when I have a problem with my diabetes or E, they can bring it up on their computer. I had my last VNS surgery at Anschutz. IMHO, Anschutz is the best in this part of the country.

sjconner- I still cannot believe the neurologist you saw at Anschutz treated you that way, no explanation and no further testing. I would be asking lots of questions.

 

[sjconner]

I don't know what to think. I want someone to tell me that it isn't E and that everything will go away and I can get the medical profession to give me my body back. The consultant suggested that the reason I couldn't find stuff was because I was distracted. I have been trying to be really, super, extra cognizant of where I am and where I am putting things. It isn't working. I tore apart my house today and can't find my book. At least it wasn't one of my textbooks. Last week it was batteries. I put them on the kitchen counter to grab on my way out the door. They ended up in the middle of the closet floor? I hadn't been in the closet in 3 or 4 days. We didn't discuss the worst part ... the not knowing anything. I hate having a totally blank brain. We say that my brain left the building.

I need to let it go and see what happens. Did I happen to tell you that I am a control freak?

:elephant: I love the pink elephant.