Hi

[steve1958]

My name is Steve and I live in the UK.
I have been taking Phenytoin to treat my epilepsy since 1986 and it has worked very well.
However recently the drug company has stopped making this. There is an alternative but at a vastly inflated price.
So at the moment I am in the process of starting Lamotrigine ready to come off the phenytoin.
Unfortunately its not going too well.
Nausea, headaches, blurred vision.
Am off to the Drs today for a chat to get some advise (I hope).

 

[Nakamova]

Hi steve1958,

I hope the transition starts to go better. When I went on Lamictal, I got headaches and blurred vision too. No nausea fortunately. Taking acetaminophen helped the headaches, and that particular side effect did go away eventually. The blurry vision is still a problem.

 

[reidflys]

Hi Steve,
keep us posted on your med transition.
It's sad when they stop making your meds.
I was ticked off when they took the CFC's out of albuterol.
Welcome to the site.

 

[steve1958]

Went to the Dr yesterday
Advise given was to stop the new tablets and be referred to a neurologist.
26 years without any major fits and now they want to mess around with my meds because of money

 

[steve1958]

I have been phoning drug companies for information
Pfizer who used to make the drug have not sold the name Epanutin, even though they are no longer making the dose I nead.
Another company Flynn Pharma do make them but cannot call them Epanutin, even though that is what they are.

Found a direct line to Plyn Pharma: 01438 727 822
I also found a UK freephone Helpline for anyone who has concerns or needs advice. Freephone: 0800 077 8566 (Mon – Fri 9am – 5pm). Though they didnt appear to know a great deal.
I phoned Flynn Pharma on the direct line and spoke to a rep who informed me that 84 x 100mg tablets cost £67.50
The new boxes will say Phenytoin Sodium Flynn.

This is less than the figures my Dr was quoting for the phenytoin tablets.
If someone currently has Epanutin, they should ask their doctor to write Phenytoin Sodium Flynn hard capsules on the prescription.

My Dr is back from leave Monday so I shall make an appointment to see him.

 

[huskymom]

Wow! You did your homework sometimes it takes us to do all the work for the Dr.'s. Big across the ocean high five!!

 

[Crash]

Hi Steve,
There is someone on here from the UK on Epanutin but i can remember who it is,ill try and find out who it is.Perhaps if they see this thread they will reply.Nice too see another UK member,im from Scotland.Epanutin was the first aed i was prescribed but that was in 1992,so it was a good while ago,anyhow best off luck to you!

 

[steve1958]

Thank you
When I had my first Grand Mal I was taken to the nearest Hospital.
Which at the time was Hasler Military Hospital (no longer there thanks to Goverment cut-backs !).
Because my Consultant was an Admiral I had a lot of faith in him.
It was also nice being looked after by male nurses.
I can remember waking up after my first night there to find myself in a Hospital night gown and a 'Venflon' in situ.
I had suffered a fit during the night and been incontinent.
I was so glad it wasnt young female nurses that had had to wash and change me.

I am sure the modern drugs are probably better.
But after suffering this experience this past week I am now very reluctant to try anything else.

 

[steve1958]

Picked up my prescription from the pharmacist today.
New packaging, but the contents are the same.

It was an interesting experience, but I think I will stick with the phenytoin.
They seem to work for me.
Unfortunately they do give me a tremour, but I manage to hide it most of the time.

I did have an unfortunate accident recently though.
I was sitting in the works canteen with a colleague having fish and chips for my lunch.
I went to put some tomato ketchup on my chips.
Took the lid off the bottle, turned it upside down, and then -
my tremour started.
The poor girl got covered in tomato ketchup

She is still talking to me so it didnt do too much damage