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.
 

CQ:)

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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
 

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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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Yesterday afternoon I had my teleconference appointment with my neurologist. It went well and he has adjusted the zonegran which I’m on for the headaches / migraines.

I’ve updated him on my Dad’s recent diagnosis on Huntington’s and that I’m going through the process to be tested myself. I see a genetics councillor in 2 weeks which is the 1st stage of the testing. I have to keep my neuro updated on my progress of how things go with the testing eg if I go through with it.

I see him again in 4 months.
 
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I was due to see the neurologist again in June but it was pushed back to mid to late August which I am assuming was because of the virus.

Australia started to get the virus under control but then the state I live in has had another breakout, mainly in the city. Last week the towns in the city were put back in lock down.

My neurologist/ epilepsy clinic is in the city so I was worried my appointment might be pushed back again, only reason I was concerned was I’ll need to get more topamax next month. I can get it from my dr but would like to speak to my neurologist about some possible side effects before I get a script.

I spoke to my epilepsy nurse last week to check that the clinic is still running, she confirmed clinic is running but only teleconference and phone appointment, no face to face. That won’t affect me as I’ve been doing teleconference for a while.
The appointments for August haven’t been sent out yet but it shouldn’t be too long.
 

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When I picked my meds up last week I was told I need Topamax. I still hadn't gotten notification from the clinic as to when I see the neurologist which was supposed to be August. So I had to make a phone appt to see the Dr on Tuesday to get osme more Topamax and about something else.

Usually when the drs give me a medication repeat they'll give me enough repeats for 6 months but as I think Im having side effects on Topamax I need to check with neuro I didnt want a full run. I didnt know when I see the neuro so wasnt sure how much to ask for so my mind started thinking too much at work yesterday lol.

I rang the neuropsych who doesnt make the appoitnments but at less has access to the system and can tell me if an appointment has been made.
She knew I was going to the drs and knew of the issues I was having as I'd mentioned some to her previously and mentioned the other main one yesterday. So she was going to message the telehealth department to see if she could get me in the next couple of weeks.
She got back to me within the hour to let me know I have an appt on 10th August.

My seizures have reduced, think the headaches are about the same but think migraines have reduced and when I have post seizure headaches they dont last for days.
 

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Hi CQ,
I'm glad to hear that your seizures have reduced and that you now know when you will be seeing your neurologist. The virus has messed
up a lot of medical appts. for many people here in the U.S. My husband is supposed to go in for knee surgery in a few wks. but the Dr.
said it all depends on the amount of covid patients there are in the hospital also.

When I was taking Topamax the drug increased my seizures so I had to go off of it. This past week we have been having solar storms
here and I've had seizures every since day this past week, I have a feeling it's do to the electromagnetic field from the storm.

I wish you the best of luck when you see your neuro. Wishing you only the best and May God Bless You!

Sue
 

CQ:)

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Hi CQ,
I'm glad to hear that your seizures have reduced and that you now know when you will be seeing your neurologist. The virus has messed
up a lot of medical appts. for many people here in the U.S. My husband is supposed to go in for knee surgery in a few wks. but the Dr.
said it all depends on the amount of covid patients there are in the hospital also.
Thanks Sue
When I see the neuro he usually tells me how long until I see him, usually it’s 4 months but I get a letter the month before. Clinic is slack when it comes to appointments so if I’m due to have a appointment and still don’t have my details I annoy my neuropsychologist. It’s much easier to see if she can get them to do something then contacting clinic.
I was due to see neuro in June but guessing it was pushed back due to the virus.

When I was taking Topamax the drug increased my seizures so I had to go off of it.
I’ve been on topamax before from 2006 - 2008 for the seizures. My neurologist at the time got me to the highest dose aswell before he changed it to Keppra. Back in ‘06 - 08 I was on brand name Topamax. It didn’t help the seizures and the only side effect I had was weight loss.

But now I’m on generic Topamax , I’m on it for migraines, my neuro only has me on a low dose and I’m having different side effects. I’d only noticed one side effect when i spoke to him last but I’ve noticed more since the increase.
So I got to check whether it is the topamax or other things .
 

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Can I ask why you see a neuropsychologist, specicially? Is it for things related to epilepsy, or something else?

I see a normal psychologist, a neurologist and a psychiatrist.
 

CQ:)

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Can I ask why you see a neuropsychologist, specicially? Is it for things related to epilepsy, or something else?

I see a normal psychologist, a neurologist and a psychiatrist.
I had brain surgery in 2011 and am through a epilepsy clinic at the hospital where I had the surgery. The neuropsychologist is part of the team of specialists I saw when I had the surgery. I don’t have a direct number to my neurologist and usually only speak to him when I have my follow up appointments.

If I have any issues or questions that I need to be follow up before I speak to the neurologist I email the epilepsy nurse or neuropsychologist and they’ll assist or check with my neurologist and get back to me with an answer.

In the past I have seen a clinical psychologist but that was a few years ago. Ive had a bit going on lately and am in the process of seeing if I can get back to seeing another psychologist to help me with a couple of things which are not epilepsy related.
 
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