OV9

Over due update, no further seizures.
Had a review meeting with my Neurologist, seemed happy things are steadily getting better. Still recommended I don't do anything by myself for another month (whilst I adjust to the new dosage of meds) and start easing into doing more things myself.
Have just finished increasing my dose from 100mg to 150mg.
I am having some minor side effects (some since my first seizure), but as the meds as still being adjusted, need to see if they subside - its still relatively early doors with treatment (Epilepsy timescales are measured in months and years). Hopefully in a months time I can start being a bit more independent, work are being good, our team is still WfH, so my work is largely unaffected.

Excellent progress

NGRhodes wrote: ↑Mon May 16, 2022 7:29 pm Over due update, no further seizures.
Had a review meeting with my Neurologist, seemed happy things are steadily getting better. Still recommended I don't do anything by myself for another month (whilst I adjust to the new dosage of meds) and start easing into doing more things myself.
Have just finished increasing my dose from 100mg to 150mg.
I am having some minor side effects (some since my first seizure), but as the meds as still being adjusted, need to see if they subside - its still relatively early doors with treatment (Epilepsy timescales are measured in months and years). Hopefully in a months time I can start being a bit more independent, work are being good, our team is still WfH, so my work is largely unaffected.

All good news. I thought this was going to be a crap outcome when this thread first started but it seems like life is returning to normal. Great stuff.

All boringly good on the seizure front.
In other news I ended up being sent to A&E by the out of hours GP a couple of weeks ago due to a huge swollen foot - they have decided its a reaction to my blood pressure pills (amlodipine). Similar happened to my throat about 4 years ago, diagnosed as angiodema to ACE inhibitors.
Have started on indapamide.

Seizure front
Swelling Hopefully all will be good with the change of meds.

nuttinnew wrote: ↑Thu Jun 30, 2022 11:36 pm Swelling

as someone who is imminently about to start Blood Pressure medication, this is x 100 ...

Bugger, another seizure earlier this week.
Have been having headaches for about 3 or 4 days (I usually don't even get headaches, even with cold or flu), so knew there was a chance of getting one.
4 months since my last one, so really annoyed.
Do have an appointment in a month with my Epilepsy nurse - hopefully, they can further adjust meds.
I've had my disabled bus pass application approved.
That will be another 12 months minimum before I can apply for my driver's licence back.

Arse Glad you have an appt. and the buss pass sorted in the meantime.

That’s shit.

Seems it’s not uncommon to take some time to get the dosage right for seizure meds.

Really sorry to hear that. How are you managing to mitigate the daily impact? I imagine (bit could obviously be wrong) that that is in and of itself a significant issue.

NGRhodes wrote: ↑Thu Aug 18, 2022 4:44 pm Bugger, another seizure earlier this week.
Have been having headaches for about 3 or 4 days (I usually don't even get headaches, even with cold or flu), so knew there was a chance of getting one.
4 months since my last one, so really annoyed.
Do have an appointment in a month with my Epilepsy nurse - hopefully, they can further adjust meds.
I've had my disabled bus pass application approved.
That will be another 12 months minimum before I can apply for my driver's licence back.

Sorry to hear - are you still on the keppra (lamotrigine)?

My epilepsy has taken a backseat to other health issues.

My Kidney function took a big drop in August (I have ADPKD) from 68 to 54 egfr, my GP suspected it was (another) reaction to some of my blood pressure medication and put on beta blockers instead, this appears to be on the back of my swollen foot issue at the end of July.
I saw my Kidney consultant yesterday who is booking me in for a CT scan with an aim to put me on Tolvaptan ASAP to hopefully reduce the rate of decline on my Kidney function.

I ended up having 3 blood tests and 2 GP appointments last month, I already have 5 arranged appointments (2xGP, 1 Kidney, 1 Elipespy, 1 blood test) this month and will have a further blood test and CT scan to have.

So far this year (excluding what's been listed above) I've had 4 visits to A&E, 2 x CT scans, an MRi scan, about 8 blood tests, 2 consultant appointments and 3 or 4 GP appointments, 1 out of hours GP appointment.

That's quite a list. Can't be easy having to deal with all of that.

DeskJockey wrote: ↑Wed Sep 14, 2022 11:41 am That's quite a list. Can't be easy having to deal with all of that.

Alex articulated my thoughts. Doesn’t sound like much fun Nick.

There's plenty of people far more unwell than myself.
I'm still able to do pretty much what I want and not in any pain, so it's hard to be glum.

Good news today had 2 appointments this afternoon:
Epilepsy nurse decided to up my lamotrigine to 200mg a day.
My beta blockers are working very well, and I am only on the lowest dose, BP of 130/80 at the GP is lowest I've had for years.

The fantastic part of medical research is what isn’t fixable today can be fixable tomorrow.

Great news on the positive progress.

Dave!

Since I last posted an update I've had 6 more seizures, they seem to cluster together. Most I have gone without a seizure so far is about 4 months.
The last 2 were same day minutes apart about 2 months ago.
I've been on 250 lamotrigine since end of last year and a few weeks ago got prescribed clobazam for top up/rescue use.

My kidneys are now officially (just) at stage 3a and I started the Tolvaptan 4 weeks ago.

I've had a flurry of hospital appointments and blood tests, another CT scan (kidneys).

I will have to have monthly blood tests for 18 months and then every 6 months as Tolvaptan can cause a sudden drop in liver function (leading to failure if unmonitored).

Going from 200mg to 250mg lamotrigine has made a huge positive difference to how I feel on a daily basis, which is nice.

So, March 2024 is earliest I will be able to apply to get my licence back.
I don't have a huge desire to drive again at the moment.

NGRhodes wrote: ↑Wed May 03, 2023 8:48 pm Going from 200mg to 250mg lamotrigine has made a huge positive difference to how I feel on a daily basis, which is nice.

So, March 2024 is earliest I will be able to apply to get my licence back.
I don't have a huge desire to drive again at the moment.

Sounds like good progress, and without wanting to sound like I'm wishing time away, not having the desire to drive means the time will pass before you know it