Neurology appointment

CQ:)

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Yesterday I had a follow up appointment with my neurologist which was teleconference so we chat video link which I do on my laptop or iPad. It saves me going the 4 hours each way to clinic. Since our last follow up my seizures have dropped a lot but I’m now getting a lot more post seizure headaches and or migraines, to the point where after a seizure the headaches can last up to 3 days.

The neurologist was particularly concerned about the headaches, has told me the best pain killer to take and put me on a very low dose of topamax twice a day to help with the headaches. I was on topamax in 2006 - 2008 and apart from weight loss had no major issues with it.

Anyway not long after we started video conference and were talking about the headaches I spaced out and think I came to 1/2 an hour later.
I had to ring the specialist clinic to find out how to get hold off the neurologist again because I couldn’t remember if we actually had the appointment. They spoke to the neurologist who was with patients and said he’d ring me after clinic. He rang me that afternoon and confirmed I had a seizure and I hung up on our teleconference. We continued from where we were at re the headaches, at this stage he’s going to keep my other epilepsy meds as are as I don’t think he wants to mess with them too much.

Usually he sees me every 4 months but he wants to see me again in 3 months to make sure everything’s alright.
 

valeriedl

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Did he get a hold of anyone to let them know you were having a seizure?
 

CQ:)

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Did he get a hold of anyone to let them know you were having a seizure?
No I don’t think so as my parents and I live 4 hours away from clinic.
My parents are 30 mins from me but they were in town that day at drs appts themselves .

I might check with the neuropsychologist about making sure they have mums mobile number aswell as home number in case this happens again. As well as best friends number as she lives around the corner from me
 

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I think that's fantastic that your neuro schedules video conference appointments. I hope that is a trend that grows throughout the field. You would think neuros everywhere would be offering it to patients that aren't supposed to be driving.
 

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I think that's fantastic that your neuro schedules video conference appointments. I hope that is a trend that grows throughout the field. You would think neuros everywhere would be offering it to patients that aren't supposed to be driving.
The clinics been doing this since late last year, which is for 'country patients' like myself who live far away or other patients have problems getting to clinic. I never minded going to clinic but the 8 hour travel (4 hour each way) did used to tire me out.
 

Fedup

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The clinics been doing this since late last year, which is for 'country patients' like myself who live far away or other patients have problems getting to clinic. I never minded going to clinic but the 8 hour travel (4 hour each way) did used to tire me out.
That is a great idea, I must try and find a way of bringing that up it would be a great help for me.
 

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Update,
im due to see the neuro next month but just waiting to get the appointment details from the clinic as to when my appointment is.
My seizures are probably at the best they’ve been for a while but I’m not going to jinx myself, and my headaches have reduced.

But I’ve noticed a couple of very mild issues since taking the topamax (which is generic brand) that I think may be mild side effect of the topamax.
- I get very slight pins and needles, mainly my feet but sometimes my hands as well
- I’ve been a little breathless at times, like I want to yawn but can’t . I saw the dr to get some scripts recently. She said the breathing issues could be mild asthma to do with the pollen in the air as it’s the end of spring but rather I check with the neuro 1st that it’s not related to the epilepsy before she treats me for asthma .
- I had an issue with my vision went real blurry not long after I started the topamax but that only happened the once and I think it lasted less then a minute. I had my eyes checked a few months back so don’t think the bluriness was related to my eyes.

I’ll be making notes to discuss these issues with the neuro along with a couple of other issues that he needs to know about.
 
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CQ:)

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Due to Christmas / new year break I still haven’t seen my neurologist.
I wasn’t too concerned as my seizures are the best they’ve best for a long time. Except for my last 2 which are different and I’m a little more concerned about them so will be speaking to my neurologist i about those in particular.

I emailed my neuropsychologist yesterday in regards to finding out information about when I’d get a date to see neurologist. She emailed me back to let me know my neurologist is on away until end of January and I should have appointment for date in February shortly. She emailed me later that afternoon to let me know a teleconference appointment has been made for 10th February which will come quick enough.
 

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Hi CQ,
I'm glad to hear that you are able to get in to see your neuro so fast I often have to wait 3 months or longer to see mine. I wish you only the best of luck and I hope all goes well. God Bless You!

Sue
 

CQ:)

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Hi CQ,
I'm glad to hear that you are able to get in to see your neuro so fast I often have to wait 3 months or longer to see mine. I wish you only the best of luck and I hope all goes well. God Bless You!

Sue
Thank you Sue
When I see the neurologist he usually tells me when he wants to see me again, usually it’s 4 months and makes a note on their system so the clinic can send a letter out.

But at our last telelink appointment in September I think he was more concerned then usual, mainly because I just started getting migraines and that was the appointment I had the seizure in front of him and hung up on our appointment.
So he wanted to see me in 3 months so technically I should’ve seen him last month.

But with the Christmas break it meant I had to wait a little longer but apart from the last 2 seizures I’m going really well so I didn’t having to wait.
 

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I often have to wait 3 months or longer to see mine.
I forgot to mention I now go to an epilepsy clinic at the hospital in the city where I had the surgery which is why it takes longer.

Before my surgery I used to see a neurologist in my home town . I could get into see him within a week or 2 , once I got in that day. But even though he was lovely he was a general neurologist and used to just increased meds then when I got to a medications highest level he’d change meds. In the end in 2009 he said he couldn’t do much more so suggested I look into surgery and referred me to an epiologist who worked at the hospital where I go to now.

After my surgery I had the option to go back to my local neurologist or stay with the clinic. I chose to stay with the clinic, they’re further away but they focus more on the epilepsy and don’t just mess with meds. They also have the better facilities in the cities then my country town if I ever have to go to hospital for tests

(I got a bit side tracked there 🤦🏼‍♀️)
 
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