Follow Up - Doing Better!!

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tam bam

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Hi Everyone:

Well, it has been a little while since I posted last. I did have a bad bout there with my neuro and the medicine he gave to me for about a week. The Carbatrol made my seizures much worse and my neuro didn't want to try anything else different to help my seizures or what he calls "episodes". I do think I have seizures though with no doubt now even though EEG's come out normal and so do MRI's. My family doctor intervened in the mean time and put me on Lyrica and Topamax. I am now doing much better. I have only had one seizure and it was very, very minor and very, very brief with no lasting effects at all. Other than that I am just fine now. No crazy seizures or "episodes" LOL!

This was the first Thanksgiving that I actually felt well enough not to cancel on my family to actually attend dinner. Yeah!! Usually I have a seizure right before and cannot attend. This happened for many years so it always ruined holidays for me and disappointed my mother. As I sit here and write this I am so happy that I have finally recieved the help I needed for so long that I actually had a tear come down my cheek because I am so happy to feel so much better.

My neuro is going to probably be mad at me the next time I see him for my family doctor intervening and not telling him but I really don't care because he didn't do his job anyway but at least I found someone who cared. I am just thankful for that and to everyone here on this great forum. THANKS SO MUCH!!!!!!

tam bam
 
Glad to see you back! Nice to hear that the festivities went well for you. From the sounds of things you need a new neuro!
 
Yay for the holidays! It's wonderful that you were able to participate in the festivities this year. There are few things worse than being alone during the holidays, especially when you don't want to be.

Yay for your family doctor who listened and helped!
 
Great to hear your holiday went well this year, Tam bam. I'll bet your mother was overjoyed. And don't worry about your neurologist being angry with you. After all, if he wasn't doing his job you hired him for in the first place, time a new neuro. At least your family dr. listened to you.
 
Thanks so much for all the nice replies. Yes, I agree my new neuro stinks. I had another one in mind but he is leaving his practice, RATS! I may try and look after the first of the year. I will talk with my family doctor about helping with my meds for now until I can find another one if this guy is too scared of me. I was thinking of giving him another shot as well but I am uncertain of this because of an insurance issue at the moment. His office has not sent my records to my insurance company for them to review his notes on the VEEG to see what they are going to pay and if his office doesn't then guess who is stuck with the bill? ME! I have called his office telling him to send the notes and the insurance company has as well but they never respond so I will wait and deal with my neuro after Chrismas and see if my family doctor will help with my seizures for now since they seem to be under control and also my family doctor seems to know a lot more about my seizure type. Perhaps I have picked a neuro that doesn't have an interest in seizures and he just felt bad for me or something. Don't get me wrong, he is a really nice guy but I just have the impression that he doesn't seem to know that much about seizures. I'll wait and see how things pan out there with the neuro but for now I am enjoying life again! I haven't known this for 10 years! Whichever doctor does or doesn't want to help as long as I have my meds I am OK! Thanks again.

tam bam
 
If your neurologist doesn't believe them to be seizures- then you might suggest having a VEEG. You don't want to be on meds that aren't helping you much- or if your episodes are something else medical, then other meds can be used to treat it- such as cardiac troubles or someothing else. A neuro should be able to tell right away if they are seizures and if they are, if they are epileptic in nature- by description or witness description. That is unusal for a family doctor to give you meds that a neurologist should- they know more about med interactions and what each med is used for.
I would look into finding another neurologist to treat you- provide more testing and to explain what type events you are having.

Did you current neurologist say that the "episodes" really are? Are they non-epileptic events/seizures or what did he/she say they were?

Please be careful and take care,
Crystal
 
Yay for having a good Thanksgiving with your family! And boo to your neurologist for being a jerk! I hope you can find another neurologist soon, one that will listen and respond better. Is there any way your family doctor can talk to the neurologist to find out what the scoop is? Often doctors will say things to each other that they won't say to patients. If your neurologist isn't really up to speed with epilepsy, maybe he'll admit that to your family doc.
 
Don't worry he is getting a letter from me this week. I am putting it into the mail tomorrow. I am not pleased with my so-called neurologist at the moment. I'll keep all of you posted.

tam bam
 
Just to update all of you on the neurologist thing. I sent out my letter to him regarding my lack of treatment from him and he called me at work yesterday but I was wayyyy too busy to talk so he stated he would call me at home last night so I told him that would be a good idea. I waited and waited and waited and no phone call from him so guess what he is fired in my book. I am not giving him another chance. I just don't care anymore. I go to see my OBGYN on Monday and my family doctor is in her pactice and I will ask if I could see her for just a sec to let her know what is going on and see if she will just help continue on with my meds. I am still doing well on them so that is good. I have about decided that I am going to give up on neurologists I think. I have been through 5 of them over the years and no one has been able to help so I give up on them. I think I will just stick with my family doctor she seems to know more about seizures anyway and seems to believe me more as well so wish me luck.

tam bam
 
Good luck tam bam! I do think that if you're stable on meds and have a regular doctor who will prescribe them knowledgeably, then you don't necessarily need to see a neurologist. A neurologist can be helpful if your seizures change or if the meds start being problematic, but an UNhelpful neurologist can just make things worse. As you know!
 
Gosh, thanks so very much for the kind words of encouragement. I really need that right now.

tam bam
 
I am

very glad to hear that you had a WONDERFUL Thanksgiving, Tam Bam!!! I wish you the best of luck with the doctor thing. They CAN be a pain sometimes......
 
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