Brain Re-Mapping after stroke and meds

[ImStayingSober]

Had a stroke 4 months ago. Temporoparietal area (above the ear thereabouts on the left side). Sleeping is horrible. Violent twitching at night. They gave me Ambien to take at night back in December because sleep deprivation caused headaches and headaches cause more stroke. 10 mg pills. I only took half a pill on some nights, still have some left so it's been 2 1/2 months for a bottle of 30. Now a friend tells me it's addictive and a narcotic? Does anyone know? I'm not taking any more until I see the doctor again but thought someone here might know. I need something to make the twitching going away but they say it's because the brain sleep center is re-mapping and "normal" for months possibly a year. Melatonin makes me dizzy, it's non narcotic but dizzy = bad. Anybody have any ideas/suggestions? Want to ask the doc for something else but don't know what.

Sorry, its my first post. Not sure how to introduce myself. ImStayingSober, clean and sober since 1990 and stayin that way one day at a time. You'll probably finding me whining about my situation a lot lately

[lizw]

I sort of understand what your asking. I've been sober since 1998 and began taking medication for MS symptoms 2 years ago when I was diagnosed. I also have recovery friends who, back in the old days, abused the medication I take. Lol. Obviously I take it for different reasons than what they were. Talking to your doctor sounds like a very sane and sensible thing to do.

For myself, I don't think it is 'the medication' that will cause an addiction for people like us who already live a recovery program but more about our behavior with it. I.e. playing doctor ourselves and increasing the dose because we like the effect. If I was doing this or even considering doing it I would take it as a sign I was in serious trouble.

Hope that helps and welcome to SR.

[MROBI]

ya talk to your dr. and say what you said here. ambien is a strong med and has the ability to be abused and habbit forming. (chomamile tea works well for sleep for somepeople) check with your dr. first. if you cant take ambien without abusing it , have someone dispense it for you.

[ImStayingSober]

well another sleepless night, not taking anything though. the thing with the ambien is that i only take half a dose on nights when the twitching is the absolute worst, but since it was suggested it's addictive i'm afraid to even take that. supposed to take 10 mg each night but don't want to get into a "habit" of it. doctor appt. on friday, will find out then what alternatives are possible. not sure what sleep aids aren't narcotic, but would actually work. maybe just get a tank of ether brought in, lol. once i'm asleep it would take a hurricane to wake me with or without ambien, just getting through the twitching stage with nothing is near impossible.

[lizw]

Take it easy.
I know how bad it can feel to be sick and suffer lack of sleep.

[ImStayingSober]

doc said it's the only thing that doesn't interfere with other stroke meds :| so, i will continue to take a half on the worst nights. not afraid my psyche will become addicted, just afraid my body may become dependent on it. i've tried melatonin, tried teas, tried going without anything at all. but, going to give the doctor her due for having more knowledge about the brain's sleep center than i do. it's like... um... my body is exhausted but my brain doesn't know it's time to sleep. it doesn't have an "off" switch. so i have to manually turn it off. me and ambien, for now anyway. thanks guys.

[lizw]

Onwards and upwards eh?

Have you read that phamplet 'AA members and other drugs'. I am pretty sure it is on their website. It is quite good.

I woke up at 3am this morning and couldn't go back to sleep. I get what you described and I've never been able to tell if it is my alcoholism (crazy head) or to do with MS, as MS affects the centeral nervous system.

I had a time when I came off my meds, went slightly bonkas, then went back on them and I could actually feel my body relaxing after I started taking them again. The weird thing about that was untill that point I hadn't noticed my muscles were so tight!

Last night I got up, watching TV, ate yoghurt, drank a cup of tea, smoked then went back to bed and went to sleep. None of these activites are recommened by the sleep experts but it was fine for me last night and I don't have plans to make a habbit of it. I hate the lying there trying to figure out why I can't sleep though, it's the worst.

[ImStayingSober]

Yes I've read it. I feel pretty confident as long as it's prescribed and I'm taking it as directed (less actually than suggested) I'm ok with it. It's funny I don't question any of the other six meds I take but none of them are narcotic or altering at all. I might die without them. And I wouldn't think of stopping THOSE for my recovery. Sleep is a necessary evil.

Luckily I've not a problem with staying asleep once asleep like you have, liz. It's the twitching that is almost seizure-like, that keeps me from getting there. Since the stroke happened while sleeping, I worry then that it's happening again. Add anxiety to sleep deprivation and that IS a recipe for stroke. I'm grateful that when sleep does finally come it's a long and restful time.

[lizw]

I wake up like clock work at 2 and 3am. Mainly because I have problems with my bladder, despite the fact I take medication but then last night I just couldn't get back to sleep.

Could be nerves in general as I've recently started doing some part time work for a guy and and I was quite nervous about his response to what I had done but of course it is fine. It always is eh?

Do you have left over effects from the stroke? An AA friend of mine had 2 at the end of lasy year. She's in her 60's and had been sober as long as I have been alive - she got sober the same month I was born! She has no lasting effects.

But I ask as I saw a TV program about how the brain is effected and how after a stroke a person can go onto favour a certain side of their body etc... Because MS is part nuro this has happened with me. I can't curl my toes on my left foot and the left side of my body is weaker etc...

[lizw]

And I did mean any other symptoms apart from the seizures.

[ImStayingSober]

I am also grateful for a bladder the size of a gallon bucket

We worry too much, eh? Especially at night, when the world is still and our minds are racing a million miles an hour. Glad you are reassured about the job.

liz I've had 4 in the past year or so, 3 first were "silent" no evidence, but they showed up on the MRI after the biggie.

Some slight right hand side deficits, such as not able to write signature properly. No paralysis of any kind. Deficits are mainly in areas of communication. At first, unable to read or write, or understand the spoken word as well as speak properly. Can't do math any more. Some vision problems, i.e. when walking especially in grocery stores, feel like I'm walking "upside down". It's from visual field disturbance from lighting and clutter. Typing has slowed down a whole lot. I can write passable sentences but have to go over and over again, to make sure I think what I'm reading and especially writing. I have a big fear of posting in this forum actually, because I might use words wrong. Not everyone understands my brand of cave man talk, can be easily misconstrued.

liz is your MS the relapsing/remitting type? I'm sorry you can't curl your toes

[DesertEyes]

Hi there, StayingSober, and pleased to "meet" you

Sorry I'm so late to your thread. I have a neuro disorder called "Autonomic Neuropathy" and also had brain surgery a little over a year ago. The docs told me that my brain damage would take a whole year to slowly heal up, and after that it would continue to heal only slower. They were right.

As far as addicteve meds, yeah I'm scared of them too. What I do is I have my docs "rotate" them. This year I am off Lortab and taking Tramadol instead. By changing meds every year I reduce the physical dependence my body develops as well as the emotional attachment.

I also keep a log of every time I take the med. The day, the time, the reason why. I show that to my docs when I see 'em and to my sponsor. The log makes it real clear if I'm "inching up" on my meds cuz I'm starting to like them. Or "inching down" because I'm scared of them.

Both extremes are very dangerous to me. The addiction danger is obvioius. The not-taking-enough is just as dangerous because if I don't treat my neuro disease they will get worse a whole lot faster. It take a lot more meds to get me thru a back-slie than if I just get on a "maintenance dose" and stick to it.

Something else about my condition is that when I start on a new med it can take it several weeks before it "kicks in". Once it does I can back it off quite a bit. Another reason why that log is so useful, I can see how much I needed at first and I can keep track of _exactly_ how much less I need to maintain.

I think of my doc as a really experienced employee. I tell him what I need done and then I _listen_ to how he suggest the task get done. I've told my docs I don't want to stay on the same meds forever, so we came up with the "rotation" concept. I told them I would rather take low doses of several meds than high doses of just a few and we came up with a really good recipe that works for me.

Welcome again, StayingSober, I'm glad you decided to join us. Be sure to tell us how your next appointent goes.

Mike

[ImStayingSober]

Hi Mike, thanks for sharing your experience with me.

Can I ask, what area of the brain was affected? And what do they do in there? Straighten up wires or.... well I am clueless obviously.

They are pretty accurate so far in making assessments and predictions of when things will "come back" so I have to trust them on the rest.

At first they gave Tramadol to shut down my brain at night. Trouble with that is, now I'm wired backwards because that stuff is the "ANTI-SLEEP" med for me. Kept me awake for days. Had to stop that immediately.

I haven't logged the 1/2s of ambien but should... the 1st bottle got on december 11th or 17th (it's scratched on the bottle, can't tell) and was retired on February 19th. so that's about right, a half a night. to take the whole thing, feels like getting hit by a truck and then peeling myself off the pavement in the morning (or afternoon, whenever waking up happens). that is too strong.

the last appointment was today. he said we could lower the dose but he feels like i may start needing the whole 10 at night. well, if it's not narcotic as he said, then how can that be? he says, because as the re-mapping continues it could shut down more before it ever wakes up again -- if it does.

the brain is an awesome organ. things i took for granted before, i don't any more. stroke is just dead brain tissue, it never regenerates. amazing though that it dances around and finds new circuitry. some things may just be gone forever, no alternative routes around it.

i haven't found myself "liking" any of the meds .. not the BP stuff, not the Chol., stuff, not the stroke meds, none of it. keep trying to find ways to get off all that stuff. they say it's forever i like the idea of rotating the sleep aids though, i like that a lot. other than ambien and tramadol, maybe there is something else they can offer. has to not interfere with any of the others.

thanks again mike. take care.

[lizw]

Yep. I was diagnosed with relapsing/remitting and have had 3 major lapses. 2 affecting my legs and 1 affecting one of my arms -can't remember what side.

However over the last year I have began to expereince a general decline in things like my bladder, eye sight, balance etc... so just reading your symptoms I have a lot of that stuff.

I read the other day the MS usually peaks in the suffers 30's and I am now 31 and was diagnosed just over 2 years ago so maybe the big lapses are all over. Well I am hoping they are.

Up until the end of last year I had awful fatigue but in December started taking some new medication which has worked wonders. I sort of live like a normal person now and am not limted to doing one thing a day. I.e. if I went to a meeting, that was it I had to come home. Or if I had coffee with a friend then I'd have to come home. Slept every day during the day for 4 hours. It was dreadful.

One of my balance/eye sight things is (at times) my brain can't recognise shapes so I have to be very careful going up and down stairs because if I aren't I don't lift my feet to move. It is very weird.

MS in general is a really weird disease. Before MS was recognised as a disease they use to put people in the nutward who had it because it's symptoms are just so bizzare and at times can seem unbeleiveable.

The brain is an amazing machine.

[DesertEyes]

Hey there StayingSober

Originally Posted by ImStayingSober

... Can I ask, what area of the brain was affected? And what do they do in there? ...

I was having surgery on my sinuses. Due to the neuorpathy my whole respiratory system is inflamed and swolen. The sinuses were the worst and it was just gross. Tried all the meds, so the only thing left was to get in there with a tiny little roto-rooter and drill it all out.

Well the little power tool "caught" on a bone spoor and punched itself thru the base of my skull into my brain, sending a shower of brain slivers upwards into places that should not be touched. Took a military surgeon who is an expert in head wounds all day to fish out all the slivers except for one. He said he would do more damage taking it out than leaving it in.

The speech center in my brain got nailed, along with short term memory. For weeks after I could barely speak. And when I could string enough words together to make sense I'd forget what I just said and repeat myself. Over, and over, and over.

I'm way better now. My vocabulary is still much less than it used to be. I can _think_ of the word, but it won't come out of my mouth. I can even _write_ the darn word, but I can't _say_ it. Which is just fine with me cuz this is so, so much better than it was.

Originally Posted by ImStayingSober

... At first they gave Tramadol to shut down my brain at night. Trouble with that is, now I'm wired backwards because that stuff is the "ANTI-SLEEP" med for me. ...

That's actually good news. That means that you _know_ exactly what the med does. I had to experiment with a whole bunch of meds until I knew exactly what med does what for me. One I knew that, I could tell the docs what "recipe" I needed to feel healthy.

Originally Posted by ImStayingSober

... to take the whole thing, feels like getting hit by a truck and then peeling myself off the pavement in the morning ...

I get that way with just a touch too much Lortab. I can take it up to a point, and it works as expected, but if I go just a _hair_ over my limit I'm exactly like you described. Knocked out cold for 24hrs.

Originally Posted by ImStayingSober

...the last appointment was today. he said we could lower the dose but he feels like i may start needing the whole 10 at night. ...

That's a good doc that _listens_ to you. Not all of them do. My suggestion is keep trying different meds until you find what works for you. There's _tons_ of meds out there so you have lots of options.

I take over-the-counter "sleep aid" at night. It's the sleep component of "Tylenol PM". It's a very mild sleep agent but it works great for me. Docs didn't think it would be strong enough, but guess what? It's plenty. I take a lot of steroids to keep my inflamed nervous system under control, and to keep my heart rate and blood pressure up. Without the 'roids my heart just quits pumping. Side effect of the 'roids is I'm wired all night long. So I have to take _something_ to get any sleep.

Originally Posted by ImStayingSober

... amazing though that it dances around and finds new circuitry. some things may just be gone forever, no alternative routes around it. ...

Yeah, I'll never be free of monster migraines. The nerve inflamation is settling into the injured part of my brain, and around that little bone sliver they couldn't take out. So my "intracranial pressure" gets a little too high and I get the mother of all migraines.

The good news is that whatever parts of my brain never come back really weren't that important after all, or I wouldn't be sitting here typing at this computer

Originally Posted by ImStayingSober

... i haven't found myself "liking" any of the meds ...

Excellent. The day you do, it's time to call your sponsor

Originally Posted by ImStayingSober

... keep trying to find ways to get off all that stuff. they say it's forever ...

It is for me. No 'roids means no heart pumping. Taking roids means side effects, means I need other meds. I'm grateful there _are_ meds, and so many of them.

Originally Posted by ImStayingSober

... thanks again mike. take care....

You bet, StayingSober. You look after yourself too. If you're ever in Vegas give a holler and we can meet at a meeting.

Mike

[ImStayingSober]

Sorry you've had to deal with that, liz. It is frustrating not knowing what will hit, or when. I hope the big ones are over for you too.

I know about the "one thing per day" deal too... had that very much at first. For one thing, couldn't *remember* more than one thing a day. And then, not enough energy or just plain brain power to get anything but one thing done. Here's to more improvement for both of us on that score.

There are some visual exercises they gave me to improve being able to see/recognize things. I will PM you with that, they may help you.

It takes alot of courage and strength to stay clean and sober while dealing with brain issues. Good on ya

Originally Posted by lizw

Yep. I was diagnosed with relapsing/remitting and have had 3 major lapses. 2 affecting my legs and 1 affecting one of my arms -can't remember what side.

However over the last year I have began to expereince a general decline in things like my bladder, eye sight, balance etc... so just reading your symptoms I have a lot of that stuff.

I read the other day the MS usually peaks in the suffers 30's and I am now 31 and was diagnosed just over 2 years ago so maybe the big lapses are all over. Well I am hoping they are.

Up until the end of last year I had awful fatigue but in December started taking some new medication which has worked wonders. I sort of live like a normal person now and am not limted to doing one thing a day. I.e. if I went to a meeting, that was it I had to come home. Or if I had coffee with a friend then I'd have to come home. Slept every day during the day for 4 hours. It was dreadful.

One of my balance/eye sight things is (at times) my brain can't recognise shapes so I have to be very careful going up and down stairs because if I aren't I don't lift my feet to move. It is very weird.

MS in general is a really weird disease. Before MS was recognised as a disease they use to put people in the nutward who had it because it's symptoms are just so bizzare and at times can seem unbeleiveable.

The brain is an amazing machine.

[ImStayingSober]

Mike one of these days I will learn the art of the "quote" like you did up there.

It sounds like schrapnel in your brain. Fortunate you had a great surgeon who could get most of it out.

Today, a new BP med switch. Makes me tired. Went out to ride the bicycle, big mistake. Legs don't wanna go so much. But, will keep trying this for a few days. They trust me to know when something is worse rather than an improvement. The upside, feeling exhausted may be able to fall asleep tonight without any assistance. Depends on what starts twitching.

The tylenol PM, i might be able to try. Every time I ask a pharmacist if it's safe to take something with the stroke meds, they tell me to ask the doctor. the only OTC the doc ever sugested was melatonin, which wasn't good. Will ask about tylenol PM next visit.

Curious about you having to take steroids for the rest of your life... isn't it bad to have chronic migraines? How do steroids keep your heart pumping and why is it not beating on its own?

If I'm in Vegas I'm hopelessly lost, direct me home. Just kidding... it's beautiful there. Spent a lot of time down around the river by Laughlin. Would be happy to meet you for a meeting in Vegas any time, if anywhere near.

[DesertEyes]

Originally Posted by ImStayingSober

... It sounds like schrapnel in your brain.....

yeah, that's what the doc said too.

Originally Posted by ImStayingSober

... Fortunate you had a great surgeon who could get most of it out.....

I dunnno, I'm not so sure it was good fortune. My doc told me, a couple months later when my brain was able to remember what I was told, that the army brain surgeon had just got off a plan from Iraq _that day_, and was stopping to visit a doctor friend of his at the ER before catching another plane back east later that night. The surgeon just happened to be standing at the ER admitting desk chatting with his friend when they wheeled me in. There's way too many co-incidences there for just good fortune.

Originally Posted by ImStayingSober

... Today, a new BP med switch. Makes me tired. ....

I understand. I was going to a 12 step convention today but my BP is just not co-operating, so i'm hanging out here instead

Originally Posted by ImStayingSober

... Every time I ask a pharmacist if it's safe to take something with the stroke meds, they tell me to ask the doctor. ....

yeah, I don't do _nothing_ without checking with my docs. They tell me Tylenol is ok for short term use, but long term it trashes your liver. If they hadn't told me that I never would have known.

Originally Posted by ImStayingSober

...Curious about you having to take steroids for the rest of your life... isn't it bad to have chronic migraines? How do steroids keep your heart pumping and why is it not beating on its own? ....

I have "autonomic neuropathy", which means the nerves in the center of my body are inflamed and dying off. In turn, my heart, lungs and abdomen don't get the correct signals to operate. My heart doesn't get the signal to pump, so it just slows down and stops. My lungs don't get the signal to fill up all the way, so they get choked up with fluids, don't get enough blood and get inflamed. My stomach doesn't get the signals to digest properly, so what I eat just sits there, and sits there. I have to take meds to help the digestion, and sometimes I literally have to lie down on my right side to get the food out of my stomach and into my intestine.

Steroids are anti-inflamatories, they knock down the inflamation so the nerves are able to work better, and so all my insides get the correct signals. They are also a cardiac stimulant, so they make my heart pump harder and gets my BP and heart rate up to where I can get out of bed and keep a simple desk job.

and yes, it's bad to take 'roids long term. But it's not like I have a choice

Originally Posted by ImStayingSober

... If I'm in Vegas I'm hopelessly lost, direct me home.....

For you and me home is the nearest AA meeting

Mike