First appointment with my neurologist, what should I expect?

[girlwithadog]

I have my first appointment with my neurologist on Thursday. I've seen one other neurologist before and it was a huge waste of time and money.

A little background... I've had blackouts since I was in a terrible accident when I was 5. Most doctors thought this was some form of dissociation but a few doctors over the years said they believed they could have been seizure related. I always thought "If I had a seizure I would know"

So 2011 rolls around and I had my first confirmed grand mal seizure. I was 24 at the time (week after my birthday) and I had a few mini blackout episodes (which doctors thought were seizures) following the grand mal.

So I go see the neurologist and he refuses to give me any tests saying he didn't think it would happen again. But then said "Come back if it happens again". So may rolls around and I was going on 4 hours of sleep when I woke up to go to work in the morning. My fiance was driving and on the way to work I felt the seizure coming on. The feeling was the same as my dissociative episodes, they all are the same. I get the tingly out of it feeling, often panicky then everything goes black. I come to all groggy, hard to understand what anyone is saying, the words just blend together. Ringing in my ears and vomiting. My blackouts follow this routine as well it seemed.

So after the second seizure I went to the hospital and racked up $6000 in hospital bills. Eventually I got medical and now, almost a year later I finally have a chance to see the neurologist. I have an appointment with him on Thursday and want to know what I should tell him, if I should bring anything, any questions I should ask, what I should expect etc.

Oh I'm new here but have been reading the posts Thank you for reading and any feedback!

 

[Fedup]

girlwithadog

First let me say welcome, you have had a rough time of it by the sound of it. You want to know what is going to be done, what tests and how soon, you write down everything you think you want to know these are the questions that need asking. You cannot go on this way. Things are never straight forward but the most important questions are the ones you want answered, so write them down and bring them with you and if you think of something on the way write it down as well and ask all the question when you get there, it is your health and you are paying for this. I wish you the best and when you come out if your not happy look for another doctor and so on until you get one you are happy with, it sounds easy but it can be a pain in the neck.

 

[girlwithadog]

Thank you fedup It has been very difficult but the most difficult part was dealing with the doctors. Every time I left they told me nothing. They didn't tell me what to do if it happened again, other than going back. They didn't tell me what not to do besides drive and swim alone, they didn't tell me what causes seizures, they didn't tell me anything besides "We suspended your license, you had a seizure. Oh and don't swim alone. Come back if it happens again" so all I've had to rely on since it all began was what I read online and what people I know who knows someone with epilepsy says, and let me just say... It seems like everyone wants to tell me their worst case scenario first. I hope it's not that common to be as bad as some people have said. And they almost always say something about the person nearly losing their life from the seizure. It's frustrating and because of that I was afraid to even look up seizures and epilepsy online for almost a year after the first one.

I just want to make sure everything goes right at this appointment and I'm not left feeling worse or no better than I do now. I seemed to be worse after leaving the doctors before, because on top of the confusion and fear I was frustrated. This new neurologist has great ratings online though so fingers crossed he is a good doctor

 

[Nakamova]

Hi girlwithadog, welcome officially

As Fedup says, put everything in writing, both questions AND answers. This will help you make the most of your appointment. Is there someone who can go with you to the appointment -- it can help to have another set of eyes and ears... Assuming you have been officially diagnosed with epilepsy, then the next step is treatment. If you are on anti-seizure meds already, let the neuro how you feel on them, especially if you're not happy with either side effects or the level of seizure control. If the dosing regimen is a pain, or if it costs too much, brings those up too -- a good doc will be responsive to your concerns and try and help you find the best solution. If you aren't on medication yet, ask about the different options, pro and cons. It's good to know things like how long it takes to ramp up on a medication, what are the most common short-term and long-term side effects, what are the limitations, etc. If the neuro recommends a particular medication, ask why.

If you have general questions/concerns about epilepsy (ie., what activities are safe, what you can do to be proactive, how often you'll need to see the neurologist) bring them up as well. And find out how to get in touch with the neuro if you have more questions -- is he available via email, how to reach him in an emergency, etc.

If you don't already, you might want to start a health journal where you track seizures, symptoms, side effects -- anything that doesn't feel right. It's a good way to look for seizure triggers (like fatigue), and it can help you evaluate medications as well. A good place to start is here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Fedup]

Everything will be ok there are only two outcomes, you have epilepsy or you do not, so let go some of the fear. After all what exactly can you do by driving yourself up the wall with worry. That is right its always the worst you hear but where epilepsy is concerned, people know no different, did you know how many different types or kind of epilepsy there was and its not common to be as bad as what people say, by that you mean people talking about Tonic clonic/Grand Mal seizures, the first thing is everybody has there own epilepsy and its bad enough for them not matter what name or label it has, I have Grand Mal but that is no worse than anybody else here, its different and its got its own pit falls that I have to deal with but its a challenge for all of us, I am not saying its easy far from it.

Let me explain something epilepsy is something that is not well understood by anyone, medical or other wise. You will feel better, a little, once you start asking question that relate to you, questions you want answered and you keep asking until you get an answer but do not be in a rush to say I want medication let the doctors tell you and then give your opinion, but remember you always want to know the side effects of everything.

 

[Chaz1]

Talking to Your Doctor - Epilepsy Foundation

http://www.epilepsynw.org/wp-conten...iption-Information/Talking-to-Your-Doctor.pdf

 

[girlwithadog]

Thank you all so much! I'm still looking over the links and trying to figure out what to write as a symptom and what not to.

Which brings me to some more questions. I started thinking about the connection between my "dissociative episodes" and my seizures and the "aura" I felt before the seizure was so similar I started thinking more about those feelings and I started looking it up. I just read on webMD which goes into more detail about seizures than most other sites and it looks like some of my symptoms from dissociation are the same. So I don't know if I should bring them up or not.
For instance : About 4 years ago when I was pregnant with my daughter I kept getting these episodes. And they would literally happen 30-40 times a day. My mom could always tell when they were happening. They felt like mini panic attacks for no reason. I'd start getting groggy headed and get this "deja vu" feeling and my heart would start to race (which is when I would get panicked). Then it'd just stop. I'd go back to normal and a few minutes later it would happen again. I went to the doctor about it and he didn't know what was going on so nothing was being done.

The reason I am mentioning this is the "deja vu" feeling is so similar to the seizure feeling. And the panic. Before my last seizure I had a panic attack leading into it. Not severe but I got all funny headed and the deja vu feeling and it started getting hard to talk and my body started tingling and feeling clamy, my heart started to race than I blacked out.

But the deja vu thing happened a lot, and sometimes I'd lose consciousness and sometimes I wouldn't. But everytime I had that feeling, my dog would bark at me. It was strange how he picked up on that feeling. None the less, I get that feeling somewhat frequently. After my first grand mal seizure I got that feeling again numerous times throughout the day. It was uncomfortable and I didn't like the feeling but I always just associated it with dissociative symptoms. I always called myself a "space cadet" because of that feeling, I always felt... Not right and not completely here although I was. It would be hard to talk too. There were times after the second seizure, a few months following it, that I had a hard time talking at times. It was during the deja vu feeling and someone would ask me a question, I would hear it but couldn't understand it and just couldn't figure out how to make words.

I just associated all this with dissociation. Should I not bother bringing this up with the neuro or should I write these down on my symptoms?

 

[Fedup]

This is obviously bothering you because you are thinking about it so the simple answer is yes, write everything down that you think of, anything you need to ask and get an answer to. There is nothing you should not write down, looking up about epilepsy is a good way to go but do not read into things, wait for the expert. Knowing what can happen or is happening is half the battle, we all need answers to question but some questions need answers quickly so anything you need an answer to needs asking no guarantee you will get the answer you want but it will be an answer or if you think you can help say so. You write down all your feeling and what you feel and think, this helps your neurologist as well in trying to help you. Remember you bring up everything and ask all the questions and bring your notes with you.

 

[girlwithadog]

I just wanted to update on here...

I just got back from the neurologist.

I was seeing a therapist over the summer because of the anxiety from the seizure in May. The therapist said he thought I was having psuedoseizures. Well the neurologist doesn't think so. He said if they were psuedoseizures I would have them more frequently and I wouldn't have hurt myself during one of my episodes where I hit my head on the sink counter and got a concussion. He thinks they are actual seizures.

So he said he thinks I may have epilepsy. He can't say for certain because it's been a long time in between and that I need more tests done. I'm scheduled for an EEG next Thursday. He said even if it doesn't show anything he still thinks I have epilepsy.

It sucks, I'm almost 26 years old always thinking I was just fine, now all of a sudden I might have epilepsy? I knew it was a possibility but I didn't want to believe it. Either way though he says he will start me on meds after the testing and it should help. I don't like meds but anything to make me feel normal again, safe again.

The hospital lied to me when I went in for the seizures. It's not a 3 year suspension they put on your license, it's only one year. So in May, long as I'm seizure free, I can start driving again! But the neuro nor myself feel comfortable with me driving just yet, at least not until we find out the cause of the seizure, or have an idea if they will happen again or not.

I can wait another 6 months for testing and all if need be, it's much better than the 3 years I originally thought it would be!

 

[Nakamova]

Sounds like a good start. I hope the EEG is helpful. Whatever the diagnosis, it's nice to have a sense of certainty.

When the time comes, make sure to ask your neuro plenty of questions about any medications he recommends and why. Ideally he should give you several choices and explain the pros and cons of each.

 

[SimplePartialGal]

Write down everything you can remember and bring it to your appointment. Bring another person with you, especially one that can speak up and has witnessed your seizures. From my experience, it took forever. It doesn't have to. They can start you on medications and expect it to be trial an error for a while. You will feel better emotionally if you get started on a treatment.