Recommendations

[Army Vet]

Hi everyone,

So I have a new (well, somewhat) neurologist I see in about 2.5 weeks. He got me a new VNS (battery was dying) and helped get it to a new setting gradually without gagging me. My other one, before I moved, didn't seem to try anything. This one recommended swiping the magnet more (like exercising) and grow more of a tolerance. I did. It worked. I'm still having my usual 2-4 a month amount. It has a new feature that I’m anxious to try. It will detect my heart rate and if it goes up a certain % within x-number of seconds, it will also "swipe the magnet" for me. Not literally, but you know what I mean. Say a 40% increase within 15 seconds (pure example). I got the new one last November I think. Also he did away with one of my meds, I forget which one.

Anyway, I've seen him in person twice now (had a couple of video ones due to covid). He is somewhat pushy and intimidating. I give him an answer to a question and he doesn't really accept it. After explaining it three-plus different ways, he doesn't like my answer, like it's not specific enough. Well sorry, but I can only say it so many ways. Don't have a cow. He's a VA (Veteran's Administration) doctor. So the price is right. I like that he's trying different things. But the attitude is wrong. I think the VA has a survey now that asks how you're visit was. If I get that (and he acts the same way) then I'll definitely fill it out and send it back.

Anyway, I was curious at how you would (did) deal with it. Any and all experiences that you've had would be nice to hear about. Also, I don't know if the pills are having a benefit. I don't mind taking them, but if the side effects outweigh the benefits then why take them? I should bring this question up then too I guess. Check for being drug resistant.

 

[Porkette]

Hi Army Vet,
Sorry you are having to deal with a neuro like this. I've had the same thing happen with me a few times. My advice to you is to start
seeing an Epileptologist if you can or else find a different neuro and get a 2nd opinion.
One neuro I saw yrs. ago told me I was faking the seizures this happened when I was a kid but in the long run he was wrong and
got into a lot of hot water. You can check out a Dr. by going online and seeing if the Dr. has been sued or had any problems with
others. Also check out the medical conduct board in your area that will fill you in good. That's what I did the last time I had a problem
with a Dr. and we ended up in a meeting with many other Drs. and the Dr. was found guilty of double billing me and I had already paid
him. He went out the door a couple of days later. Have a strong backbone and don't let them push you around.
To find out if you are drug resistant tell the Dr. you want a DNA test done this will show if a person is drug resistant like me. If your
not drug resistant it will show what seizure med is the best for you with the least side effects. The Dr. may tell you we don't do that
but that's a lot of nonsense because all they have to do is draw some blood and get some salvia from your mouth and send it to the
lab. Then the lab will do the test and see how many enzymes you have in your liver and the blood test will show your body chemistry
and they can tell from all of that what med will be the best for you or if you are drug resistant. I wish you the best of luck
and May God Bless You!

Sue

 

[Army Vet]

Hi Sue,

Thanks for the comments. Part of it was recommendations/experiences and the other part was for venting. Thanks for sharing your experience (although it wasn't one you wanted to remember lol). I can already hear him declining the DNA test. I don't know if he will, but I wouldn't want to bet on it. I'd really like to know so that I could stop the nonsense and not be a lab rat. Thankfully between Medicare and the VA my drugs don't cost anything. But talk about a waste of tax dollars and unnecessary stress of ordering them, organizing them and worrying about did I take them or not. Sorry more venting

 

[Nakamova]

Hey AV, some doctors forget that their relationship with you is supposed to be collaborative. Te choice to stay on a particular med is always up to the patient. The neuro can make recommendations, but you get to decide if the side effects outweigh the benefits.

I had a neuro who wanted me to go up to a higher dose on Lamictal then I felt I needed. She kept insisting that I would have a seizure. But I held my ground, and ten or so years later I am still seizure-free. She and I butted horns on several issues, so eventually I did find a different neuro.

Since you need to stay with the VA hospital your choices may be more limited. If you're stuck with this doc, ask him if you can record your meetings with your phone, and/or bring someone with you to document his manner. Then if you need to reach out to his boss, or ask to see someone else, you can at least show why this particular doc is problematic.

 

[valeriedl]

I had to change neuros when I got my VNS in 2007 because he was the only one who dealt with VNS. I got a second VNS in 2013 because the battery died in the first. Settings on the VNS and meds were changed over the years. I didn't have any problems with him. That's different now.

Over the last few years it's been really hard to get an appt with my actual neuro, I know some of it's due to COVID. The last time I did physically see him was a year and a half ago during a visit with his Nurse practitioner and all he did was check my VNS. I've finally got an in office visit (I hope) at the end of April with him.

I keep a seizure diary and when I see him I typed out - when the seizure was, what I did during it and anything else that might be important about it. It's got a list of questions if I have any, just to make sure I ask him about them. And other things that he'd need to know. He used to look it over very good and have a conversation with me about it. He told me he really appreciated it. Now he just sort of looks at it then sets it on his desk.

He always knows what's right too. My last visit with him I told him that I want to stop taking Keppra, I can't handle the side effects. He told me that 'it was doing good helping me not have seizures so he was keeping me on it'. This next visit I'm going to make up a page long list of all the side effects I have. If he still won't talk me off of it then I'll got Kepprage in the office on him!!!!!

I had to stay with him only because of the VNS but I'm pretty sure there's other neuros in the area who deal with the VNS now so I'm going to start looking for another one.