Hi, I went to see the neurologist yesterday and she decided to decrease my dose of Tegretol because my side effects were unacceptable. I was on 800mg and she wanted me to come down to 600mg and add a new med in to replace it. However, she doesn't/couldn't prescribe. I was concerned because in the UK you can wait two weeks to see your GP, so I wasn't keen on my meds being reduced for two weeks in case it brought back old symptoms. I asked to reduce the tablets in 100mg doses and although she obviously thought I was mad (I should have explained but I was too sick to be clear) she said that was fine.
I honestly didn't expect much problem. One, I had been told many times that the drugs are cumulative in the system and I've certainly found this to be true. They are quite slow to act, so I figured they'd be slow to 'unreact' too. Two, I expected them to return to how they were at 600mg, and that had been fine, with no shocks, so I dropped one 100mg out my dosage yesterday as I'd promised.
Imagine my surprise when I felt better this morning. Great I thought, dropping that tablet has already eased the sh**ty side effects. Imagine my double shock when I then promptly got one, a shock, from drinking warm tea after a cold breakfast. Before meds (it's BM and AM for me!) this would be normal. AM, absolutely not. I would never have had a shock doing this at 600mg, and yet here I was, after removing one tablet, so still at 100mg more, i.e. 700mg, back to shocks. I was completely unnerved.
I went out as intended, still feeling a bit better from the change in meds, and went to a supermarket. It was a boiling hot day and inside the store was lovely and cool. By the time we hit the fruit & veg it was cold from the refrigeration and bingo, another shock, then another.
After that I had two more, at random times, including one just sitting on my sofa mid-evening, for no reason.
This has completely thrown/depressed me. What I want to know is, is this normal? Anyone else experienced this coming down/off meds? And did it happen so incredibly quickly?
There are lots of you taking med combinations on here. How did you make an effective transition from one med to another? I'll be honest, if this doesn't settle down in a day or two I am going back to 800mg and will put up with the nausea, drunkenness and profound stupidity/hallucinations until I see the doctor for my new meds. I find this a problem with consultants - they don't seem to be too great with how these diseases work in the real world. Either way, I am NOT going back to electric shocks.
Anyone - how did you transition?