Went in for Lidocaine came out with having Phenytoin.

[emjane4465]

After lidocaine on day one I felt the best I've ever felt. After Phenytoin I feel like a lead weight the most awful headache and achy.

I hope it works. I was also the youngest in my infusion by 25 years.

I work in adult social care and the amount of times I want to hang up on people with out condition that just complain how they can't do things makes me mad especially when they have lived their lives a bit before their diagnosis. I know some haven't. I'm 20 I can no longer drink , no longer do the main things I love , everyone tries to wrap me in cotton wool. All I want is to be healthy not take tablets not have needles stuck in me. I'm already thinking on how long I need to leave it beFore having children due to the pain and fatigue I want to enjoy them and have energy for them. Not be in hospital up to 3 times a year with illness and fibro flare ups feeling very down sorry for the rant

[Ginsing]

Hi emjane

I hope the Phentyoin works and you find some relief. Everyone needs to let of steam some times and that is one of the many reasons we are here - it does help I know so feel free.

The rant will have got it out of your system. Now babies they take quite a lot of planning so decide carefully and when you have go for it. Nothing is impossible xgins

[micha]

Hi emjane,

I had my second phenytoin infusion on Wednesday and I'm pleased to say that, apart from some initial 'spaced-out' and tipsy sensations I felt fine after a sleep (yes, I slept -oh, the relief!). I was, like you, discouraged after the first one though because I felt dreadful, and it lasted 3 days. So please don't give up on the phenytoin, it may get better - and it does provide me with some respite from my symptoms, as I hope it does for you.

Gentle hugs,

Micha

[emjane4465]

Hi micha. Its been 6. Days I feel worse than ever. I feel so fatigued , achey , the pain is awful! I'm getting home from work and getting into bed I also have felt very low since my phenytoin x

[micha in reply to emjane4465]

Oh dear! It sounds as if it's not going to suit you short term, but I would recommend having a second one if it's offered. As I said, my first experience wasn't great either but this time I already feel a little better, although I'm not having to hold down a job too. I can bounce my newest grandson on my knees and hold him safely in my arms - things I couldn't do before. Things aren't perfect, still have very painful fingers and wrists, and walking further than the back gate is difficult but Im very grateful for any improvement, however slight. Please don't give up,there will be something, somewhere, to ease your pain. Best wishes,

Micha, x