I had a neurology appointment last week. It was the first one on the NHS with my new neurologist after seeing him privately in desperation back in December. This appointment was brought forward because after increasing my Vimpat I reacted to it badly by coming out with a rash and feeling very poorly causing alarm. Photo's taken of the rash were printed out and put into my notes for future reference. I can't change my medicines at the moment because my system has become sensitive and it might prove dangerous to change anything without further details. Scary thought. I've been placed on the waiting list for a further 5 days in hospital to have a Video Telemetry observation done. Yay. He asked me to make sure that the Ophthalmology department send over any information they find with my missing vision areas to him as soon as they have it for him to review also. I can finally come off Gabapentin (that I was using as a painkiller) gradually in case the dreaded constant headache comes back. (SO GLAD!!!) I can't really remember much more of what was said after him saying he wanted me back in again to be honest so I'll have to wait for the report to come through.
Yesterday I had an orthoptic appointment at the hospital because of a problem with my peripheral vision in the top left area. This was picked up in August when I spent 10 days in hospital with a crippling head pain and seizure after seizure. Nothing really got resolved apart from my seizure levels returning to normal and being doped up to the eyeballs on the painkiller and ex-AED Gabapentin. In an attempt to find the cause to my headache myself I went to to an Opticians to see if it was anything to do with my eyesight again they picked something up and sent me to my GP with the results. Nothing was done AGAIN. I then had a private neurology appointment out of desperation in December in which he again picked up the problem with basic neuro function tests he performed and wrote to my GP to request a refferal be made again. He wasn't overly impressed that I still hadn't seen anyone before our meeting last week but I told him that I had my appointment this week.
During the appointment I had the standard visual field tests done where you put your head in a box machine type thing and click a button every time you see a dot of light flashed onto the screen in front of you. Pretty much the same as in a an opticians only longer. After that I then had a "driving" test where both eyes are uncovered. I know for a fact I missed a couple because my eyes where getting fuzzy and I was distracted by that and didn't react quickly enough to press the button. I told them though. When I was leaving I asked the rather glum nurse if there was anything on the results that she could see... the response... you can expect a letter from one of our consultants. That was that, so I'll just sit and wait some more. It's all a bit bizarre as I've always had perfect vision in fact I distinctly remember my very first neurology appointment the neuro saying she'd never seen such clear eyes got all excited and even got the student who was there to take a look. :D
I'm worried, with photography as my passion and living my vision is EVERYTHING to me. I'm not going to freak out just yet, not until I see a consultant and have everything explained to me in more detail. I did a little research and asked some people if they have had any problems with vision in relation to seizure damage and/or medication side effects and some have said they have been caused permanent vision issues while others have said any problems they had have resolved since changing meds. So I'll have to see how it pans out for me.
The world keeps spinning so I'd better carry on :)
Seizure meds affected my vision. Topirimate and Sodium Valproate both made my vision go blurry every now and then. Plus when I'm having multiple seizures, my vision is crummy. I find it difficult to focus on anything and my eyes drift off to the sides and its hard to get them back to normal x
ReplyDeleteHello, just found your blog and its fantastic! I've just recently been diagnosed myself with epilepsy and have been struggling to come to terms it, cope with the meds and sickness to try and control it and how to live with it and make it a part of me, even more than it already is! I started writing a blog too as I found it the only way at first to connect with someone with epilepsy or in a similar position to myself. I don't know anyone with it and four months on meeting with the new epilepsy action group in my area. I think you should be really proud of this and everything you've been doing to help raise awareness. I'm hoping this/next year to feel a whole lot more positive about epilepsy and give something back :) if you want to, and there's no pressure to do this but my blog is http://epilepsyrollos1.blogspot.co.uk/ X
ReplyDeleteHi, thank you for saying that about my blog :) sorry I haven't got back to you sooner just going through a bit of a "rough patch" as they say. That's sucks that you've been diagnosed but hopefully you'll get some much needed answers and control back very very soon :) It's a horrid situation to be in and I agree it's a very hard one to get you're head around if you'll excuse the pun.. I'm glad you've started a blog too, I find it a very good way to let off some steam and I hope you do also. I'm also glad you have found a way to connect with others who have Epilepsy it's only in the last six months or so that I have ever met someone (that I know of) that has it themselves in person. It feels good that they too can truly understand the everyday trials even the invisible ones that we go through. I have followed your blog and have been sneakily stalking it :P and will continue to do so :) That's brilliant that you actively want to feel more positive in the future, always a plus! Feel free to talk whenever you like with me even if it's to just vent/rant away or questions or anything really! I hope you're doing well at the moment :) Xx
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