My eye??!!

[Loudmouth]

This afternoon, 4 days after my GP raised my topamax dose back up to 50mg a day (no idea why, just got told by receptionist that was what I was to take this month, he had writtien scrip then gone on hols, locum had no clue, so I did as I was told), My left eyeball, and i know this sounds weird and REALLY gross, has started pointing at almost right angles to where it's meant to be??? It's like my rihgt eye is looking where it's meant to, and my left iris is right at the edge of the eye socket??!! I can't phone GP till morning but it will only be the locum who has never met me, wont know my case, wont have read my case notes, and if my NORMAL gp feels unable to take me off topamax even though the eye tester ( still cant remmeber the blasted name for her) said in JUNE that the topamax had given me an astigmatism I'd never had, then what's a locum gonna do? WHAT'S THE DEAL WITH MY FREAKY EYEBALL??!!!!!!

[Birdbomb]

Sounds like a trip to the ER! Get to steppin!

[haird18]

I went through similar problems when my Topomax was changed. With me It caused the to do the same thing and caused blurriness and pain! Also it didn't just go away.I would definitely get it checked out for sure!
David Hair

[Loudmouth]

A trip to A&E (England rember!) will cost me 5-7 hrs (not bleeding profusely or having a heart attack) with 3 kids....will an opticians (I BL**DY REMMEMBERED!! its only took me 2 full days!) in town help? My last MAJOR seizure that I let myself be took to hospital where I fractured my jaw and had severe concussion and had TORN my shouldr muscle and dislocated the shoulder I had to wait 6 hrs for any traetment...

[Loudmouth]

Went to the GP, just got back. He has spoken to Janssen-Cilag on the phone, the manufacturers of the topamax, and they advised that I stopped treatment immediately. He has taken me off the topamax, but he said as it was having a positive effect on my seizures, he is going to put me on a short term course of Epilim until I see the neurologist on Monday, as that's another sulfate medication and that's what's helping in combo with my Gabapentin??!! I've been on Epilim before, the tiredness was EVIL, I was sleeping for nearly 18hrs a day, but it's only 6 days, so i will put up with it. Sleeping is better than going blind!!! Janssen-Cilag have said that as my topamax was not discontinued as soon as symptoms began to appear, the sight loss that has occurred is more than likely permanent, and on that note, my GP signed me off work with a permanant, open-ended sick note!! Are there any other sulfate meds or are topamax (topirimate) and Epilim (sodium valproate) the only ones???

[Birdbomb]

Topamax strikes again! Make sure you contact the makers of this medication and the FDA (or UK equilivent) and file a report. Documentation of adverse side effects is important.

[Loudmouth]

I've already contacted Janssen-Cilag and informed them, in fact it was them who told the doctor in no uncertain terms that he HAD to discontinue treatment immediately, and that my eyesight will be permanantly damaged as that was not done in June when the problem was first flagged up to his attention. NICE! now I am down as visually impaired with epilepsy!!

[Loudmouth]

Janssen-Cilag are the pharmaceutical company, what would be the UK equivalent of the FDA?

[Torak]

Janssen-Cilag are the pharmaceutical company, what would be the UK equivalent of the FDA?

NICE, NAtional Institute for Health and Clinical Excellence.

Be warned though, NICE are of somewhat dubious competency, being run by accountants and politicians rather than health professionals.

*re-reads some posts*

It takes you THAT long for an ambulance???

wow! I got one in <45 mins last week. But I was totally wasted so time was something that happened to other people, i was just *vegetate* *quietly dissolve in a corner*

Topamax, I had to stop taking that because it caused me to have severe mood swings, depression to becoming really aggressive. Doesn't go down well when you're having psychotherapy for PTSD and social anxiety disorder. It did reduce the seizures, but the side effects were unacceptable.

[Loudmouth]

LOL, had that too, GP just offered me lithium??!! Told him where he could stick the lithium, he's got me a counsellor for a whole 6 weeks!! (wow lol). I was diagnosed bi-polar as a side effect of the topamax, which should hopefully go now i've stopped talingthe topamax. Janssen-Cilag and the GP have told me the sight damage is permanebt and GP's FINALLY written me a sick note that's permament (open-ended) stating Refractory Epilepsy and Visually Impaired. (which I wasn;t before the topamax. He's told me tio give the topamax a day to clear my system andf start taking the epileim tomorrow. Problem is my complex partial's have gone theough the roof and I'm now having my simple partial's BADLY this evening first time since i started the topamax I feel really trippy its weird like my heads floating and the flooris falling away.

[Meetz1064]

I am sorry for the troubles you're having!! I wish I had some gem of wisdom to give you.

I've been wearing glasses for years, and started Topamax last year. Now I can't wear my glasses. I said something to my neurologist about it last week, and now I have to get into my eye doctor........but my eyes are definitely NOT doing what yours are...My neurologist did say it was very,very, very unusual for something like that to happen because of Topamax....

[Loudmouth]

Guess I always pull the short straws

[RobinN]

Rebecca had unusual eye issues with Tegretal XR.

You were on Topomax and Gabapentin?
How are you sure it was the T and not the G?

[Loudmouth]

Been on the Gabapentin at the same dose for ages now, with no ill effect at all really ( ONLY anti-epileptic drug I can say THAT about ). The myopia has started to remedy now that I'm no longer taking the topamax, but the peripheral vision loss (complete) and the glaucoma are permanent. Been put back on epilim (200mg am, 400mg pm), the second anti-epileptic drug I was on, getting the evil tiredness effects from it like last time, but the epilim's only a short term measure until I see the neurologist on MONDAY!!! YAY!!! FINALLY! Then Tuesday night I've to keep Jade up all night for HER sleep-deprived on wednesday...and Friday I'm in GOSH (great Ormond Street hospital) to see Jade's cardiologist. What a deeply joyful week with 3 major medical appointments! Can't think of any better way to spend our holidays??!! But on the plus side, it might mean that we both actually start making inroads into our medical probs. Downside of the eyesight problems..I'm having real trouble safely crossing busy roads, as I have some hearing loss, always have,now not only can't I HEAR the cars coming, I can't bloomin SEE them properly either! The plus side of losing all my peripheral vision is that one of my seizure triggers no longer applies! ( used to have seizures if i caught lights through trees etc when on buses/in cars out the sides of my eyes)

[haird18]

All my life I have eye problems, because I was born blind in the left eye and 50% - 65% blind in my right with lazy eye ! I have weak eye muscles! I am also cross eyed somewhat! I end up running into people and wals because this. But also my medications don't help at all! Ever since I started on anti-epileptic drugs I have taken 12 -20 different meds. in my life! Which has also caysed problems with my eyes oo. I have had eye patching to correct my vision and eye surgeries nothing worked!
David Hair

[Loudmouth]

do you bump into people, and how do you safely cross roads? I also found it really hard today in the supermarket, I kept running into people with the trolley, in the end my 10 year old had to direct the trolley. It was really embarrasing bashing into everyone left right and centre, it's a supermarket i need to go to at least 3/4 times a week. I can't find any advice, any given would be appreciated.