After almost 3 years on an anti-seizure med[Keppra] I am titrating off of it. Also a lot of other meds so my docs can get a new 'baseline'.
Going off my first of two key meds was definitely a vacation, going off the seizure med a different issue altogether!
My question is that all has pretty much been fine and dandy but for three particular issues, and I would appreciate anyone else who's gone from meds to none.
1- Sleeping at night has become erratic...it seems like I am waking up exactly every two hours then going back to sleep...don't know why...but all in all, I am sleeping 7-9 hours a night. Tho as good as we always get with PN tho...
2- Return of one particular muscle fasculation in a more active way. Seems the med toned it down..would only get 3-6 times a week, now 3-6 times a day.
Last
3- Super hypersensitivity to sounds...this is the scariest. Common, normal sounds either in the home [such as the furnace going on/off] or a truck noise when out...Suddenly I will go into jumpy adrenaline mode. Going 'jumpy' driving on a busy road is not desirable for sure.

Anyone have similar experiences? Input of all sorts is appreciated - thanks ahead of time and HUGS! - j
Did I mention? No I didn't...The pain levels haven't changed one whit from before to after...soo, maybe other approaches mite be needed? I've not worried about this before, but I am now...Do not know why...but..I am.

I've done a lot of trying out and going off of meds. Some withdrawal effects were temporary, others permanent. I'm hoping that all you are experiencing is temporary.

Sleep disturbance is common for going off of many meds. Sometimes I would wake up every 20 minutes when in the midst of stopping a med. I have an underlying sleep disorder, though, so maybe my experience was more extreme?

I develop uncontrollable muscle twitching that originally stemmed from a reaction to an SSRI. When going off certain meds, these twitches increase for up to a few weeks before going back to a baseline or something slightly worse than the baseline. I personally would have a doctor witness your fasiculations (sp?) just in case they don't go back to whatever passes for normal for you.

The sensitivity to sound is quite annoying, but I've always found it to be temporary. Your nervous system might be adjusting? Haven't really researched this in the context of medication withdrawal, so I don't know exactly why it happens.

Don't know if this is any help, but I can definitely sympathize with what an ordeal it is to change or go off of meds. I don't think most docs fully appreciate the extent of changes to our bodies as a result of these substances.

fanfaire,
who had to start taking inhaled steroids today

I had #3 when they took me off of Ativan... I would jump like I was shot at the least little noise... It did go away eventually...

Good luck, hope this settles down for you,
Cathie

Hi Dahlek, wow, that's a BIG ask from the docs, now that is affecting your sleep and increasing muscle fasculations, I hope you let them know that you are reaching YOUR baseline limits before it becomes to uncomfortable for you.

I suddenly stopped taken my 200mg x 2 tabs of Tramadol a day, but you know my story, it was time to do it, i didn't have any side affects from stopping that drug, but i am concerned about my friend from the US suffering to much.
take care
Brian

I guess a call to the neuro is in order for tomorrow. I'd been having the intermittent back muscle issue on and off for ages prior to the PN. At onset, it stopped for a while then well, came back. A lot of it I've attributed to it being long term soft tissue and tendon damages done years ago plus less activity.
The noise thing, tho...Thanks to you all? Well, I am glad it's not my 'imagination'. I've always had fairly good hearing and I'd be dozing and suddently a plane flying overhead would well, be like a JUMP-START to me! The top notch adrenalene reaction was pretty high? Of the sort when you've just JUST missed a car-wreck...cannot think of a better way to put it.. The increased breathing, lite sweats [which I'd started to do a couple of months ago-before going off meds. But not on command so to speak] and instant dry mouth.
I've felt it was pretty much as expected till your input. I'll call and leave the proverbial message. By the time I hear back I'll have had the blood tests and next IG infusion.. Hopefully the infusion will put me back on an even keel. Don't know about you all, but at least on even keel, could be better than many other options?
Well, It's slog on till next week for most of it! Hugs to all and thanks! - j

My story may not help cause this was years ago when I had no pain issues just mental. Anyhow I was on so many meds and have went off so many meds. I think a big key is the approach your doc takes when weaning you off. No cold turkey for sure and sometimes it needs to be slower for some.I would encourage you to call your docs and express your concerns.I had one med I had to go back on and wean slower. Also and again not when I was in pain but with my depression/anxiety/ocd I wanted to go off a med cause I thought it wasn't helping. My psych said though it may have not fixed me it may have been helping so if symptoms got worse to call him. So you too cause then you may need to start as you say your baseline or get more help.Feel better and I understand worry.

--carry with them the warning to titrate down from them VERY slowly.

Their mechansims of action is such that they "deaden" the over-responsiveness of the brain, spinal cord, and peripheral nerves. The body senses this and attempts to "upregulate" its normal background neural firing rate in response. If the meds are withdrawn too quickly, without giving the body time to "downregulate" again, this increased background fring rate comes to the fore, and anything at the end of a nerve seems to go into hyperdrive--neural pain receptors, sense organs, musculature, even sometimes bowel and bladder function . . .and, of course, sleep/wakefulness cycles may be disrupted.

I'm currently in the process of titrating down from Gabapentin. From my high of 2400mg/day two years ago, I'm down to 600mg/day. But I've been dong this for 18 months now; I drop down about 100mg/day at a time, monitor the effects, let my body readjust/stabilize at that level for at least a week or so, and then still wait further before the next drop. Even so, I've noticed short upticks in neural pain at some drop levels, thought these tend to fade over days as the body readjusts.

Any doc who wants people to drop down these meds quickly should know better. They're not the only meds that have to be titrated down slowly, but there've certainly been enough reports on the effects of NOT doing it that nobody should even suggest otherwise.

A Dr. tells you to drop meds fast needs a Dr. Sue

I have a question about ativan. My neighbor is on it. She's 75 and going through a very hard time right now because her little dog has a tumor on his bladder. She's had him for 10 years and she's not doing well, at the prospect of losing him.

I paid her a visit this morning and I was never prepared to find her in such a state. The first thing I said was "did you take your ativan"? and she said 'yes, I took it last night". I said 'well, take another one". And she admitted that she is supposed to take it twice a day but she doesn't.

She is not coping well at all and I completely understand.

Her family doesn't know what to do with her. She calls them up and makes them leave work to take her and the dog to the vet. She refuses to let them do a biopsy on the dog.

I hope I didn't do a no no when I told her to "take an ativan".

I mean, she needs more than an ativan, if you get my drift.

What exactly does ativan do if it says on the bottle "take 2 x a day". She thought she could take it every 6 hours.

I explained that 2 x a day means every 12. There are 24 hours in a day.

She looked clueless.

It must be very very hard on people who are pet lovers to have to face crises like this.
Melody

'titrating' from three doses of Keppra to zero over a four week period. It's only upon going from one to zero that the sx's [symptoms/side effects] are appearing to any degree of notice. The neuro is not remiss here at all...It is ME!
Especially I don't want to muss up attempts at a new base line, nor complain without the benefit of some other folk's experiences. I just don't want to appear over-reactive or something to both the titration nor the differences[or not] of being on[or off] the medications. Drugs can save our lives, or complicate them greatly. I can only peg the FDA and the drug companies for no clearer descriptions for PATIENTS on how to titrate and do it safely...plus what to look out for if it's not 'working'!
So here folks, don't blame my docs? PLEASE! If anyone is to blame it is me. My only constructive criticsm to them would be tho...as I'd been telling them all along [at least a year]? It's just don't pay attention ONLY to the results with *asterisks*, but those numbers with near hi or low ** numbers. Geesh! I would think that 'heading things off at the pass' so to speak would be the ideal...Doc's worlds, tho. I sure wish we could get a handle on so we all could get on more productive pages. IF there were clear and concise guidance about medication titration.. then we all would be able to do it far safer! I just wonder WHY THIS ASPECT IS AN UNSPOKEN ISSUE? Fodder for a different thread tho, I suspect. Or is this the source of another 'emerging' industry? Yes! I am a product of the 60's and 70's - equating to some new 'evil subversive plot?' I think not, I believe it's ultimately a clear potential liability issue. Ironic isn't it? It's all been insurance approved to 'do it', but not to get off it.. All no less subjective than the description of 'pain'!

Melody? I don't know s lot about Atavan from other meds of that category, and I admit it's not much. But, I suspect that your instinct that she'd not taken her meds is probably right. I wish I could advise you better about her dear creature. I know you don't have one...but it's worse than kids...at times. To intervene tho, could get you caught up in a wasps' nest of family relations [another persons' family] that you do not want to deal with.. Just go and hold hands and be sure she takes her pills. Best I can suggest. - j