/ Jai / Medications

[Guest guest]

"Hi Aish, Jai is much the same, all the tests came back neg"

Honey have sent this around the Dr circut, hopefully someone will have a clue?

***This sounds nasty, what happened to you when you OD'd? *hug*

The dose was too high for my body and I was desperately ill, someone phoned the Dr and he said that even in hospital there was nothing to do as the medication was injested, so just to ride it out and it would pass. It did pass but I was a very sick girl for a few days.

"It is scary to be taking it again, isnt there anything else they can give you instead?"

I'm already on clonazepam, have tried epilim - they are the main anti seizure meds. Tegretol is the most common so have to try it. But last time it was 400mg a day, this time its 50mg morning and evening.

"LOL, you are putting it off? Huh, well I will stop feeling guilty then for not taking my meds LMAO!"

Actually I put it off as I was sick with the flu, so I thought it stupid to take something that could make me sick when I was already sick as I would not know if I had a reaction if it were the drug or the flu. I'm starting the tablets on Monday. Whats your excuse? *grins*

"Are you taking this for the seizures? If so, how often do you have them, are they tonic clonic?"

No they are palatal myoclonus

http://www.ninds.nih.gov/health_and_medical/disorders/myoclonu_doc.htm

and opsiclonus myolclonus.

http://www.ninds.nih.gov/health_and_medical/disorders/opsomyo_doc.htm

Two rare diseases, lovely little side symptoms from the brain stem involvment from the neurosarcoidosis. They are not electrical like epilepsy, they are classed as movement disorders. However the palatal one is the worst. I cant breathe in normal air, without air conditioning, smells of any kind set it off, which triggers me to gag and my throat to close and breathing lapse and my lips go blue - its very scary. I am already on the highest dose of clonazepam which helped, so we are hoping the Tegretol will manage it so I can have some sort of normal life. This is the thing that stops me moving, eating, etc - its the main problem.

"Thanks for asking about Jai, they want to put him in hospital for obs. and testing when his symptoms flare up badly, the last week he hasnt been so bad. I am not sure I will let them, yet!"

If they are going to do this - get my Dr to organise it. I've sent out his info to people so might get answers for you.

Hope the puter withdrawals are not too bad!

Love Aisha