Health Organization for Pudendal Education

Hi.

1. Has anyone experienced feeling much better 1-2 days and then the next going back to square one?
2. My physician ordered Lyrica. I took it for a full 24 hours; 50 mg capsules 3x day. It made me soooo weird - beyond feeling "loopy", that I stopped taking it for about 24 hours, then took it last night at bedtime to see what would happen. I woke up feeling the same - in some sort of stupor.

Any comments would be most appreciative.

JAT

Side note: One of my physicians, my oncologist, ordered CT scans of my entire body due to my personal and family hx of breast cancer - he wants to rule everything out. Prior to that I had multiple blood draws; all coming up negative. He said however, that that doesn't necessarily mean anything. In his experience he has seen blood tests coming up negative, however, there has been something (CA) "lurking" in the background. I'm scared out of mind on top of everything else.

JAT,

I'm so sorry about all of this scary stuff; it downright stinks. I too could not tolerate Lyrica. I had nystagmus or double vision and it was to the point I wasn't safe to drive, let alone take care of my small children. Switched to Neurontin and having better luck as far as side effects go, although I'm not so sure it's helping with pain.

My best to you,
cari

As to your 1st question - definitely and NEVER take this as a coincidence: As someone who has lived with chronic illness for the majority of my life I can say, there is nothing like a sudden remission or a sudden exacerbation to give you insight into how to maximize your quality of life. Try your best to reconstruct in your mind anything that was different about your behavior or your environment during or prior to a remission or exacerbation.
Myself, I am at my best with high barometric pressure (airplane flights due to the pressurized cabin, low altitude, or dry sunny weather), when very well hydrated, and when I have spent the PRIOR day standing or lying down a lot instead of sitting. Other comments on this board I have heard that I remember offhand, include improvement while on a liquid diet due to a reduction in constipation, and improvement during travel because of the break from stair climbing and housework.
I am worst when dehydrated, the day after excessive sitting especially driving, at low barometric pressures (high altitude, cloudy / rainy days).
These are just examples, but if you felt much better for a couple days there was probably a reason and you want to rack your brains as best you can to find out that reason so you can keep yourself under the best of conditions, as much as possible.

I'd echo what HM says - there will be a reason why you had a good patch, if you can think if what was different in the days before that good patch then you may be able to replicate it. I usually find that a flare follows a day or so after the thing that caused it.

With regard to the Lyrica (pregabalin) I am not surprised you were wiped out at that starting dose. I was told to start with 25mg a day, and take the dose up at weekly intervals, in steps of 25mg, each time waiting until the side effects had settled completely before I stepped up the dose. Even then I found it hard to stay awake and felt weirdly spaced and sort of dizzy and disoriented after dose increases. You started at 150mg a day, it took me 6 weeks to get to that dose.

In your situation I think I would ask for a pack of 25mg capsules and take the dose up much more slowly.

JAT wrote: Has anyone experienced feeling much better 1-2 days and then the next going back to square one?

Yes, all the time -- and not always with any clear reason why. There are some activities that you know will cause a flare-up but sometimes it happens no matter what you do or don't do.