Ok, so I’ve heard the stories about people who were doing fine on a med, weaned off it and hurrah! stayed in remission…for a while. Then they go back on the med only to find it doesn’t work again. Sadly, that appears to be the case for me now.
I ‘crashed’ again back in November last year (after a pretty good year and med free). I went back on Prothiaden straight away, titrating to 75mg over a few weeks until things were starting to look reasonably promising for a while before another big setback a few weeks ago. So I bumped it up to 100mg, more Valium (and more regularly than I’d like) and I’ve thrown 25mg of Phenergan into the mix as well. Result? Nothing.
I’m back in this ‘cluster’ model of a few good days followed by a few bad days. The ear symptoms are quite frequent - fullness, pressure, humming, muffled hearing and even pain, primarily in the right ear. Some brain fog and unco-ordination and general ‘unwellness’ comes with it. While the pattern doesn’t always follow the script quite often a few days of ear nastiness is followed by horrible rotational vertigo for several hours, the ‘hangover’, and then I’m fine again. Symptoms have been so bad I’m having to take time off work again (although ‘fortunately’ the badness happens mostly over the weekends so at least it’s not too much time off).
Here’s a sample: this Saturday just gone the ears were going, but it was annoying yet managable. Things got worst on Sunday to the point I was extremely uncomfortable and in some pain, increasingly unco-ordinated, muddled and very distracted by the symptoms. Yesterday the ear symptoms were gone but I woke up feeling extremely drunk. I staggered in to work (had to get stuff done for an all day presentation today) but after two hours of nausea and increasing inability to read, type, form sentences, speak, let alone walk in a straight line I left. By the time I got home I could barely walk, was crashing into walls and my entire world had gone from ‘swimming’ to violent spinning. I staggered to bed which offered no relief and I felt incredibly ill. After several hours it finally passed and I emerged with that horrible hang over feeling.
Today - I feel completely fine.
WTF is up with this crap??
I really don’t think the Prothiaden or Phenergan are doing anyting at all - at the very least I would expect the symptoms to be less intense if they were.
I’m seeing Dr Granot again next week where he’ll look at my MRIs and assuming there’s nothing else other than migraine going on I’ll be asking for a different med.
Any and all suggestions very welcome!