Alas, I can say I’ve improved. What does improvement mean when I still can’t stand for more than ten minutes, I cannot drive, I am so weak that phone conversations or company wears me out within 1/2 an hour and that’s when I’m doing well? What does improvement mean when I wake up nauseous and unable to communicate or care for myself at all for several hours every day when I wake up?
Improvement means that while I’m still greatly disabled many of the most acute symptoms I’ve had are disappearing.
I have not had convulsive like activity in my limbs and body for several weeks. I have not had long periods of several hours where I lie in bed in a dissociative state, also for several weeks. I do not wake up with acute nausea in the middle of the night. I’m talking nausea so acute it’s like a sort of horrible pain. It’s an experience I’d never had in my life even with a stomach virus. I was waking with that pain every single night for a very long time. It’s now been at least a couple of weeks since it’s happened.
And most recently. My last crossover from Klonopin to Valium has passed me by with only a little bit more of the exhaustion striking me. No acute pain in my spine, which just the last time I did the switch lasted for 6 days. And every switch before that has been agony. It’s not been a process I could have done with great faith that eventually it would pay off and it’s possible it is.
We have suspected that it was the Klonopin causing a lot of these acute problems (though it’s also most likely been an accumulation of all the drug withdrawal I’ve been doing for the last 4 or 5 years—certainly the horrible fatigue I deal with seems to have been mostly triggered by and associated with the Lamictal withdrawal) and now it’s looking like maybe the Valium switch was indeed the right thing to do. I certainly didn’t know that it was and many many times I’ve despaired that it would not help and maybe even make things worse as I suffered through the spinal pain and overwhelming sedation, but that does not seem to be the case at all. Improvement in the level of my experienced misery is undeniable. The spinal pain not even here this time and the overwhelming sedation seemingly a bit less overwhelming.
I have to hope it’s a trend and that it will continue. There is a saying in the withdrawal communities that “recovery is not linear.” In other words things get better, they get worse. But I will continue to hope that overall the trend is towards better. I have a long way to go before I could be called anything but seriously disabled, but the absence of acute symptoms is something I can be joyful about.
And really, that doesn’t mean I don’t still feel like major crap physically most of the time. So again. It’s just a small improvement in terms of the overall quality of my life—but it’s potentially the sign of some major shifts as well…
Peace.
I know I’m a little late on the wagon — aren’t I always? — but I’m really glad this is working out for you.
Soon, I’ll have to read a joyous post that you’re off all meds, correct? 🙂
Gianna:
It’s so good to hear that there is some progress. I hope it at least maintains at this level, but improving from here surely would be great. Yes – it sounds like the crossover was the right thing to do, too.
Andy,
thanks,
it’s possible I suppose…I really don’t know WTF is going on with my body…none of us do who go down this path…there are just some things that we can observe we are not alone in…
but yeah, my immune system has been in overdrive which is not good though it keeps infectious disease away in general…
the fact that I got a cold MAY indicate that my immune system is behaving more normally…but who knows…it’s all conjecture on my part…
lablover, I couldn’t say if it this would apply to your or not, but here’s something I wrote about my own pain, possibly fibromyalgia, and the only thing that worked to make it better.
Fibromyalgia Drug-Free Therapy, Just Relax and Keep Your Money
That’s good news, Gianna!
You mentioned in your post about having a cold that it might be a sign that you’re getting better, since you hadn’t had one on a decade. Maybe the two things are related?
Wishing for you, a healing of your soul and spirit.
lablover,
I didn’t answer your question about how long I’ve been off lamictal…it’s probably been about 3 or 4 months (probably about the same length of time as you–but remember I also came off several other drugs…and my last Lamictal cuts were made with 5 mg pediatric pills cut up in bits—I did it super slowly)…I’d have to hunt through my writing to find the exact date though.
I’m sure I’m still recovering from it and will be for a long time
yes!! fibromyalgia can be drug damage…no doubt…
which mayo clinic did you go to…my general doc once suggested I go to the mayo clinic in Florida (that’s the closest one to me)
which department are you seeing docs at and exactly what for??
I may want to do the same, please let me know…
I knew the mayo clinic doesn’t allow pharma reps on their campuses for a long time now….but they do still use standard treatments in a lot of cases…I look at their treatment recommendations online…
but I’m still interested in who you’re working with specifically and exactly what for…
Gianna –
Please remind me. How long have you been off of Lamictal? I stopped it last September and experienced such pain that I ended up at Mayo Clinic’s Pain Rehabilitation Center. I’m wondering if some of the “fibromyalgia” pain I suffer from could be from multiple drug withdrawal.
By the way, the clinic is a WONDERFUL experience. They are very non-pharma and in fact cross over to anti-pharma more often than not. It was pretty amazing to hear some of the doc’s slamming their peers for prescribing painkillers and psych drugs.
Take care, hope the all continues to go well.
I’m so glad that you’re showing some improvement. Hang in there.
this is a test…thank you Laura…wordpress has a new feature where in the right hand corner anyone can respond directly to a comment….
can everyone subscribed see this? could someone let me know how this works?
this is an experiment…
thank you!!
Ah, threaded discussion. Yes, it ‘s working. Your reply to Laura was indented and under her comment, and I received the notification email.
does this appeal to y’all??
right now I only have it four deep but it can go to ten deep…
let me know what you think???