Coping With Epilepsy Mindy Fox, Marriage and Family Therapist
10% off neurofeedback training for CWE members - Santa Monica and Torrance, CA
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Kitchen



Reply
 
LinkBack Thread Tools
  #1  
Old 02-24-2019, 04:14 PM
Jun Jun is offline
Joined the Party
 
Join Date: May 2013
Posts: 37
Thanks: 0
Thanked 2 Times in 2 Posts

Being confident or otherwise comfortable with your neurologist


Hi everyone,

Ive been in a bit of a delemma for the past year.
Ive been taking the same two anti-epileptic drug meds for a long period of time now, and its only been in the past year that I feel like theres a trend (ie: roughly once a month rather than “oh hey, let the seizure happen whenever”).

After my child neurologist recommended me see an adult neurologist, Ive been seeing the same doctor, but over the past year, when Ive tried to take a more proactive approach to decrease the frequency of my seizures, and talk it over with my neurologist...its like his opionion or the highway....any suggestiions or opinions I bring up, im paraphrasing here, but its like “ sure, then go ahead with what youu’ve heard online or throigh another doctor”.....so i decided to go to my family doctor and get a referral to another neurologist. I thought maybe I wouldnt have to work for my healtth and find someone who would take the time to listen and explain and dicuss, but I went recently (2nd time seeing this new neurologist), and it felt like I was ordering fast food. He asked me how I was, I told him my frequency of seizures was increasing, and he suggested a new medication...the same one I was hesitant about taking the first time I saw him.....its like I was in and out in less than 5 minutes, and realizing going down the elevator “wait, what...what just happened...do I really feel comfortable changing meds”.....and I asked him what happens if theres a bad reaction or the steps needed if I need to change meds, and he was literally like “whe’ll see when when and if we get there”

The other problem with this new neurologist is that its very inconvenient to see him...1 appointment in 6-8 months...no calling up and asking to see him as soon as possible or etc. Atleast with my previous neurologist, I could call and make an appointment for a week or two after. I know everyones situation is different, but its frustrating.

On one hand, I want to try this new medication, but on the other, if I start taking this new med, I have to stick with this new neurologist...because its not like I can go to my previous neurologist and say “Ive been seeing this new neurologist and taking this new medication....can you renew it for me or reassess my condition”

Are all doctors like this....the feeling of wanting you in and out ASAP rather than taking the time to make you feel relaxed and having an honest 15-30 minute discussion about your overall health and the future direction.

I would love to know what other people’s experiences are and any opinions about mine as well.

Truly appreciate every comment in advance.

Many thanks!
Reply With Quote
The Following User Says Thank You to Jun For This Useful Post:
Sweetroll (02-25-2019)
  #2  
Old 02-24-2019, 04:27 PM
Sweetroll's Avatar
Joined the Party
 
Join Date: Jul 2018
Location: Glendale Ariazon
Posts: 68
Thanks: 28
Thanked 8 Times in 8 Posts
Mine are pretty much the same. I get into fights with my doctors. Every time I see him it's the same thing try this new med other doctors have giving me so I know they don't work for me. I have a V.N.S it doesn't help I've had 3 now the wires detach and I have to get another. I have seizures everyday on both sides of the brain, I lost my Son to a horrific accident where he was shot in the head by his best friend. I need some hope and these doctor's sure don't know.
Good luck and God bless
Reply With Quote
  #3  
Old 02-24-2019, 06:00 PM
CQ:)'s Avatar
Venerable Voice of CWE
 
Join Date: Aug 2007
Location: Aussieland
Posts: 3,801
Thanks: 1,845
Thanked 1,303 Times in 932 Posts
I saw my local neurologist from 2002 - 2011. He was really nice but all he seemed to do was adjust / increase meds, it seemed every time i went to see him he’d just increase my meds or put me on another med.
There were a couple of times I queried things which I thought were seizure activity and he told me they weren’t related to the seizures. Also he had me on neurontin at one stage, both my mum and I told him the side effects and the issues I was having mainly bad moods and tiredness, instead of decreasing it or taking me of the med he increased it which made things worse.

In 2009 my local neurologist told me he couldn’t do much more so suggested surgery and referred me to an epiologist in the city who I saw in mid 2010.

I had the surgery on 2011 and now go through an epilepsy clinic in the city
I now see my neurologist at the clinic at the hospital where I had my surgery for regular check ups. I’ve found the neuros at the clinic aren’t so pushy in increasing meds and will answer all my questions or tell me if I’m overthinking. When I asked the neuros at the clinic the same questions I’d asked my local neurologist they agreed it was seizure related.
I do only talk to my neurologist when I’m at clinic, the time I wait between appointments depends on how I’m going. But if I have any questions or concerns I have an epilepsy nurse or neuropsychologist I can email who work at the hospital/ with the neurologist so they’ll either answer my questions or ask my neurologist and get back to me.
__________________
I know the meaning of LIFE ... Laughter Is Freaking Essential!

One small positive thought in the morning can change your whole day

Last edited by CQ:); 02-24-2019 at 08:45 PM.
Reply With Quote
The Following 2 Users Say Thank You to CQ:) For This Useful Post:
RanMan (02-26-2019), Sweetroll (02-25-2019)
  #4  
Old 02-24-2019, 06:16 PM
malfeasant67's Avatar
Joined the Party
 
Join Date: Dec 2016
Posts: 35
Thanks: 27
Thanked 6 Times in 6 Posts
Jun, your situation sounds almost identical to mine. I have emailed my neurologist 5 times in the last two months and I have still not gotten a response. I have also tried getting into two other ones; one responded and was completely honest (praise Jesus) and said that she was completely covered up with patients, but referred me to a couple of other docs. I called one, and still haven't heard back from him either. Trying to get an appointment is a joke, and when I do, its just as you said: his way or the highway, pile on more meds instead of discussing other options, or just get surgery....like I can afford that. Plus I'm 51--what's the point?? Sigh.....
Reply With Quote
The Following User Says Thank You to malfeasant67 For This Useful Post:
Sweetroll (02-25-2019)
  #5  
Old 02-25-2019, 08:38 AM
Army Vet's Avatar
Joined the Party
 
Join Date: Sep 2014
Location: Tennessee
Posts: 74
Thanks: 12
Thanked 36 Times in 23 Posts
When this all started back in 2009 for me, the first neurologist I saw seemed ok. He put me on Lamictal and everything seemed to go back to normal. Then, fast forward to 2014 when the seizures came back and haven't gone away since. Before they came back (2010-2014), I was still going to see him. However, he was a 30+ minute drive away (plus I had to pay for parking). Whenever the seizures came back, he started the usual "let's try this medication" and I'll see you again in 3-6 months (or whatever it was)... meanwhile my life was on hold for AT LEAST 6 months because I couldn't drive.

Finally, I realized, "This guy is essentially just telling me take two aspirin and call him in the morning!" (or 6 months) Plus I'm having to waste 30+ minutes to get there and 30+ minutes to get back! I would tell him how many episodes (that I knew of) and everything and he would just shake his head (as if he was "paying attention"... for all I know, he was playing tic-tac-toe with himself ). Then he'd just "up" my medication (or do nothing) and tell me to set another appointment in 3 or 6 months and walk out...

Well that was a waste of time! (and money!)

The one I am currently seeing is at least in my town and only about a 10 minute drive, but I feel like a lab rat... "Let's try this medication..." He listens and has an assistant that takes notes and writes down my seizure incidents that I've brought with me, but like I said, he tries new medications which in turn just makes me feel like a lab rat.

Only one, so far, has made me get a rash, which I just quit taking and notified his nurse that, "Hey, this stuff is making me breakout! I've stopped taking it!"

Last edited by Army Vet; 02-25-2019 at 08:40 AM.
Reply With Quote
The Following User Says Thank You to Army Vet For This Useful Post:
Sweetroll (02-25-2019)
  #6  
Old 02-25-2019, 03:58 PM
CQ:)'s Avatar
Venerable Voice of CWE
 
Join Date: Aug 2007
Location: Aussieland
Posts: 3,801
Thanks: 1,845
Thanked 1,303 Times in 932 Posts
Originally Posted by Army Vet View Post:
When this all started back in 2009 for me, the first neurologist I saw seemed ok. He put me on Lamictal and everything seemed to go back to normal. Then, fast forward to 2014 when the seizures came back and haven't gone away since. Before they came back (2010-2014), I was still going to see him. However, he was a 30+ minute drive away (plus I had to pay for parking). Whenever the seizures came back, he started the usual "let's try this medication" and I'll see you again in 3-6 months (or whatever it was)... meanwhile my life was on hold for AT LEAST 6 months because I couldn't drive.

Finally, I realized, "This guy is essentially just telling me take two aspirin and call him in the morning!" (or 6 months) Plus I'm having to waste 30+ minutes to get there and 30+ minutes to get back! I would tell him how many episodes (that I knew of) and everything and he would just shake his head (as if he was "paying attention"... for all I know, he was playing tic-tac-toe with himself ). Then he'd just "up" my medication (or do nothing) and tell me to set another appointment in 3 or 6 months and walk out...

Well that was a waste of time! (and money!)
My 1st neurologist was like that but the difference is he was in my home town, I live in a small country town with just 2 generalised neuros.
I would go see him when I had a few seizures and give him print out of what had happened. The time i had seen him depended on how bad my seizures were, every time I saw him he would increase one of my meds.
It seemed like every 2 years he would change meds because I had gotten to the highest dose of the other meds. He had put me on my 5th medication in 2009 when he suggested surgery & referred me to an epiologist.

I'd a few times where I was doing weird things in the middle of the night and asked him if they were seizure related. He told me no it was sleep walking. I didnt agree because I didnt have a history of sleep walking and when id have those events id wake up feeling lie crap witha bad headache. When I asked the epiologist about it he said im 99% sure you're having seizure activity in the middle of the night.

Now I go to an epilepsy clinic in the city at the hospital where I had my brain surgery. It is about 3 hours drive but takes me 4 hours each way on the train but it's worth it as the neuros there listen, they answer my question and dont just mess with meds. If they want to adjust my meds they check with me 1st. The clinic I go to has just started doing video conferences for patients like me who have trouble getting there. I had my last appt in Dec which I did via video conference on my ipad at work .
__________________
I know the meaning of LIFE ... Laughter Is Freaking Essential!

One small positive thought in the morning can change your whole day

Last edited by CQ:); 02-25-2019 at 04:14 PM.
Reply With Quote
The Following User Says Thank You to CQ:) For This Useful Post:
Sweetroll (02-25-2019)
  #7  
Old 02-25-2019, 09:09 PM
valeriedl's Avatar
CWE Supporter
 
Join Date: Feb 2010
Location: Pittsburgh, Pennsylvania
Posts: 3,998
Thanks: 1,480
Thanked 1,455 Times in 1,055 Posts
I'm a little different from you. All the neruos around here that deal with a VNS are about a 45 minutes away. Luckily I have family members who are able to take me.

I've been with the same neurologist for about 10 years. He rarely makes changes to my meds, usually only the dosage. I don't know how long I've been taking the same meds. I've asked him about stop taking a med or try something else but he doesn't want to because the ones I'm taking 'Are working good for me'.
Tegretol.

Things are almost done with the other condition I have so I'll start looking after that.
Reply With Quote
The Following 2 Users Say Thank You to valeriedl For This Useful Post:
CQ:) (02-26-2019), Sweetroll (02-25-2019)
  #8  
Old 02-25-2019, 10:11 PM
CQ:)'s Avatar
Venerable Voice of CWE
 
Join Date: Aug 2007
Location: Aussieland
Posts: 3,801
Thanks: 1,845
Thanked 1,303 Times in 932 Posts
Originally Posted by valeriedl View Post:
I've been with the same neurologist for about 10 years. He rarely makes changes to my meds, usually only the dosage. I don't know how long I've been taking the same meds. I've asked him about stop taking a med or try something else but he doesn't want to because the ones I'm taking 'Are working good for me'.
Tegretol.
.
I’ve only been seeing my current neurologist since 2016 as the other neurologist I saw at the clinic left. At our 1st appt he added zonegran to the tegretol and Keppra then slowly adjusted the zonegran until he got the right dose. He doesn’t touch my meds too much now and this does seem to be the best combination that’s helped keep control the seizures. At my last review I was going the best I’d ever been and asked the neurologist if he’d think about reducing or taking me off Tegretol or keppra but he doesn’t want to mess with meds as long as I’m still having seizures.
__________________
I know the meaning of LIFE ... Laughter Is Freaking Essential!

One small positive thought in the morning can change your whole day
Reply With Quote
The Following User Says Thank You to CQ:) For This Useful Post:
Sweetroll (02-25-2019)
  #9  
Old 02-26-2019, 12:09 AM
BIGMAN131307's Avatar
Venerable Voice of CWE
 
Join Date: Jul 2007
Location: NYS (Capital District Area)
Posts: 1,715
Thanks: 419
Thanked 384 Times in 270 Posts
Originally Posted by Jun View Post:
Are all doctors like this....the feeling of wanting you in and out ASAP rather than taking the time to make you feel relaxed and having an honest 15-30 minute discussion about your overall health and the future direction.

I would love to know what other people’s experiences are and any opinions about mine as well.
Not all doctors are like that. I'd say 4 outta of 10 doctors are "good". By good I mean a understanding bed side manner. They listen to your medical situation, complaints, questions, etc. The two of you then discuss a course of action: meds, tests, etc.

Over the years I've seen at least 10 different neurologists. My first was a pediatric neurologist I seen when I was 12-18yrs. He was ok from what I remember. He would ask how I was doing on my meds, effects, any concerns, etc. Then would make adjustments
if needed. Once I was 18 (adult) I was referred to another neurologist.

That neurologist originally picked up where the pediatric neurologist left off. But wasn't that good, not really a listener, changing meds to fast, etc. So I had to change neurologists. The next one wasn't much better, along with the next two. When I was scheduled to see another neurologist I was losing hope in doctors. This time I was in the waiting room, and had a complex partial seizures. They still failed to get me on the right track.

From '92-'97 I was seen by one pediatric neurologist. Between '98-'00 I was seen by six different neurologists. The last one had me believing I was just suffering from migraines.

It wasn't until I had two grand mal seizures in '01 that I found the neurologist that I needed. This neurologist got be back on anti-epileptic drugs, and made proper evaluations. Each appointment was productive and informative. All my concerns, questions, opinions were listened to. The only regret I have is I didn't have my RTLS back when I was still seeing this neurologist. Because of my long term anti-epileptic drugs use I ended up needing my gall bladder out, and IBS. But I wasn't ready for the surgery then.

Unfortunately that neurologist left and I was on to #9. This neurologist continued with the anti-epileptic drugs, but got me to come around to have the surgery. Once I was convinced I was ready, and a good candidate, I agreed. On 5/13/19 will mark 5 years after my surgery.
After my surgery I was referred to my #10 neurologist. Because #9 was focusing on Epilepsy research / surgery studies. This new neurologist is ok, but we bump heads a little.
But I'm hopeful I will not have to change neurologists. I only need to go in for a yearly evaluations.


I had a long winding, bumpy road with neurologists. A lot of bumping heads, arguments,
and many compromises. But I eventually got to a "seizure free" point in my life.


Remember it's your body, you decide what goes into it. If something doesn't feel/look right, speak up. If you don't seem to be getting along with your neurologist, at may be time for a change. Just remember you both need to listen to each other. If both are yelling, then nobodies listening.
__________________
Member of the Epilepsy Foundation.
Undiagnosed sufferer of Dysgraphia.
LEGO County, NY Fire Service
RTLS went well 4 years down, life to go!, *Trileptal 900MG AM / 1200MG PM* (until I feel ready to reduce dosage once other issues are under control)
Reply With Quote
  #10  
Old 02-26-2019, 08:35 AM
Porkette's Avatar
Venerable Voice of CWE
 
Join Date: Mar 2016
Location: New York
Posts: 1,345
Thanks: 337
Thanked 415 Times in 368 Posts
Hi Jun,

I have seen many different neurologist over the yrs. and I found that having my family Dr. refer me to an Epileptologist at a Epilepsy Center which are usually at university hospitals or big hospitals was the best thing to do. It takes awhile to get in to see the Dr. but these Drs. specialize in epilepsy only and I like how my Dr. did a DNA test on me to see if I was drug resistant or what seizure med would work the best for me.
I found seeing local neuros a pain because they just try to push the drugs and my local neuros don't have the equipment to do all the detailed testing in my hometown compared to when I went to the Epilepsy Center and they were way ahead of my local neuros. Ask your family Dr. to refer you to an Epilepsy Center and start seeing an Epileptologist and you will see a change for the better. I wish you the best of luck and May God Bless You!


Sue
Reply With Quote
  #11  
Old 03-24-2019, 05:35 PM
Sabbo's Avatar
Esteemed Pillar of the Community
 
Join Date: Feb 2016
Location: Tinley Park, IL
Posts: 712
Thanks: 17
Thanked 106 Times in 95 Posts
Hello. I have also seen 4 or 5 different neurologists, including the pediatric one. The changes were mostly due to changes in insurance. I like my current neurologist a lot. Trying to see him is almost impossible, though. I needed refills on my anti-epileptic drugs, and I wouldn't be able to see him directly until the end of July, and had to settle for an appt with the physicians assistant.
Reply With Quote
  #12  
Old 03-25-2019, 10:21 PM
valeriedl's Avatar
CWE Supporter
 
Join Date: Feb 2010
Location: Pittsburgh, Pennsylvania
Posts: 3,998
Thanks: 1,480
Thanked 1,455 Times in 1,055 Posts
Originally Posted by Sabbo View Post:
needed refills on my anti-epileptic drugs, and I wouldn't be able to see him directly until the end of July, and had to settle for an appt with the physicians assistant.
If I need refills and don't have any left on my prescription the pharmacy can contact my dr and have them refilled. My neurologist's office has a website that I can log on to and get a prescription refill. I've never had any problems using them either way and never had to see the dr. Just don't wait until the last minute to get them refilled by doing these. It might take a few days or a week for the refill to happen.
Reply With Quote
The Following User Says Thank You to valeriedl For This Useful Post:
CQ:) (03-25-2019)
  #13  
Old 03-25-2019, 11:25 PM
CQ:)'s Avatar
Venerable Voice of CWE
 
Join Date: Aug 2007
Location: Aussieland
Posts: 3,801
Thanks: 1,845
Thanked 1,303 Times in 932 Posts
Originally Posted by valeriedl View Post:
My neurologist's office has a website that I can log on to and get a prescription refill. I've never had any problems using them either way and never had to see the dr. Just don't wait until the last minute to get them refilled by doing these. It might take a few days or a week for the refill to happen.
That’s a great idea Valerie.
I only see my neurologist every 4 - 6 months, he’s the only one who adjusts my meds, but if I need repeats for any of my epilepsy meds between neurologist appointments I get them from my gp.
__________________
I know the meaning of LIFE ... Laughter Is Freaking Essential!

One small positive thought in the morning can change your whole day
Reply With Quote
  #14  
Old 03-26-2019, 04:39 AM
Sabbo's Avatar
Esteemed Pillar of the Community
 
Join Date: Feb 2016
Location: Tinley Park, IL
Posts: 712
Thanks: 17
Thanked 106 Times in 95 Posts
I usually contact my neurologist's office through the website for refills, or the pharmacy does. This time, I guess it had been a long time since I had actually seen him, and had completely switched to Zonisamide from Vimpat.
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
after 1.5 years I was confident so I cut in half my evening keppra from 250 to 125. Janus The Kitchen 7 02-11-2018 10:02 AM
You know you have a bad neurologist when... Endless The Kitchen 16 03-02-2015 07:52 PM
Would you feel comfortable taking an extra med?? lindsayschu2 The Kitchen 15 07-27-2014 01:25 PM
Getting confident and then BAM! Loopy Lou The Kitchen 7 11-20-2010 12:00 PM


All times are GMT -5. The time now is 09:01 PM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.