I have not posted for ages. Pardon my absence....life happens. For a while I got hooked on CNBC. Lately, I have been more into the metaphysical. (I hope you guys get my personality.)

I was on Ambien for (drum roll please) TEN YEARS. Got put on it back when it was the miracle drug, and 'no problem', not addictive.

After several years, I found myself feeling like every night, when I made my half dozen trips to the bathroom to commune with the moon, that I was walking on the planet Jupiter. This got worse and worse.

Seriously, I felt the earth's gravity was increasing to the point that I felt I would stick, permanently to the floor. I felt like I weighed tons.

One thing my trip to Hopkins did for me, was, the doc, wailed on me for being on Ambien....(like I put myself on this). So, OK, I went home, and never took another one. I was on 10mg, not the CR, just generic. I do not endorse this method of stopping medication. My brain has been very addled by these chemicals, and I figured, wow, if it is THAT bad, I better stop quick.

Anyway......

I had to rely on clonazepam to fall asleep for a while, but, am off that too.

Now I don't sleep well, but I do not feel as bad as I did on Ambien or clonazepam. Now and then, I have to take a small dose of the clonazepam, but I am really judicious.

I am a sick cookie. My ANA has not come down from the roof, which I do not know where that is, somewhere over 1:1,280 (machine doesn't go any higher) and I am back on IVIG after I was axed by one of the major health insurance companies, who told me I had some other condition, not what I have....and suddenly, with all the hearings going on in Congress, I got my IVIG reinstated. So we will see. I have only recently restarted.

I have an unusual case, so pardon my cryptic references, and I always wonder if some insurance narc is snarking around on boards looking for cases they can ax. Now I am paranoid. Right? Well, the world IS a strange place.

I can't recommend any drug...I have been on all of them and still am on them and still struggle to get off. I will always need some major pain medication, at least at times. No one expects me to 'recover'. (I can still dream and try.)

Sleep? I never feel rested, even if I do sleep an entire night.....but then again, I am still on sleep structure altering drugs which I am hoping by some miracle I won't need.

I was on the combination at one time of Mirapex and Ambien....back before I knew I had neuropathy as part of my disease. I was treated for RLS, which I do have. I had a totally different personality. It is good that I am off both of those things now. However, Mirapex at the time was a Godsend. I had such a bad movement disorder that I thought THAT would kill me.

I have come to the conclusion all medication has its risk. We all have to make choices. I have been sick for a long time, so, I have been on and off the merry go round several times.

I have both autonomic and sensory neuropathy as a component of my autoimmune condition, and we know so little how to treat these conditions. Many drugs absolutely throw my autonomic system into meltdown.

I regret many of the meds I took and abandoned after a nasty reaction or withdrawal. Ugh. Going thru one of them right now....

That said, you must make your choices based on YOUR situation and the profound and prolonged scientific research you do on your condition and the drug!

*** I realize I am just 1 of many patients my PCP is responsible for and I understand my rights under my insurance policy -- so when my neurologist ignored my requests for assistance (I had copied my PCP as well) I turned to my PCP who said only the neurologist could change my meds (nortriptyline was my second drug after gabapentin stopped working -- but I was having very bad side effects), so I simply called the neuology department and when they told me it would be at least 6 weeks until my neurologist could see me, I said my next stop would be the emergency room, suddenly my meds were switched and I was given a new neurologist with an in-person appointment in about 2 weeks.

*** My feeling (and, I guess, my attitude) is -- "I pay 4 &%^ing hundred dollars a month for this program, so let's get it straight -- you work for me". Being treated as a moron or ignored is unacceptable, particularly when I have more information about my condition and the effects (side and bad) of my meds, then I am going to become aggressive.


*** Not rude. Aggressive. And, of course, polite and grateful when I get what I need. I am surprised and shocked to see how much money I pay out of pocket (and insurance premiums). $8500.00 plus a year!

Cowboy...

[QUOTE=Trishann;578539]Deb, I heard that Melationin is nature and it is better to use for sleep. Do you have to go to health stores to get it?

*** I get confused between Melatonin and Valeriun root. (Never mind my spellin' problems). I use Excedrin PM for pain and sleep -- perhaps I should try one, the other, and/or both. I got at regular drug store. But there's something you are supposed to look for in the preparation. Or doses. I don't know -- information overload. I do have a jar of both at home -- old - but I'll pull them out and look them over tonight.

Cowboy.

My sleep doctor was very much against valerian root, so I didn't try it. He doesn't like melatonin, because it isn't FDA approved, but it works for me, unless I am overly stressed.

As for Excedrin PM, or any of the PM's, he says absolutely not. He says they are not condusive for good sleep. They do things to the brain that can not promote good sleep, and I believe him, I got rid of all of mine.

I get horrible nightmares on melatonin. I think sometimes I will have to live on 4 hours of sleep at best....2am to 6am.

I know the feeling. Thankfully, melatonin does not effect me in that way. When I am very stressed, melatonin doesn't work for me...otherwise, it's great. I haven't been sleeping well for the last several days...the biggest problem is getting to sleep.

I too found a connection to dairy and my insomnia - I recently went to a holistic doc who told me to cut - Caffeine, Alcohol and Dairy from my diet for 2 weeks, then slowly incorporate them back in if I really wanted to - to my surprise, those 2 weeks, I slept like a baby for the first time in years w/o the help of some sleep aid! I was convinced it was the caffeine, so I incorporated dairy back into my diet, but kept the caffeine and alcohol out - and wouldn't you know it, headaches and insomnia crept back in like an unwelcome house guest. I am now cutting it back out - thanks to this Doc, I would have NEVER guessed in a million years that cheese was the root of my problems....

Yeah, if I have dairy, the insomnia comes right back. Now caffiene didnt effect me like that...I could always drink coffee and fall asleep, I just never stayed asleep.

I have been drinking decaf for nearly 2 yrs now.

Here is the sticky for all the meds most have tried:
http://neurotalk.psychcentral.com/thread177-2.html
It IS a big menu? And grows bigger daily. Or, so it seems.....
Honestly, for me? Since I've developed other new and fun med issues? I've cut out the neuro meds totally [except for my IVIG]. WHY? Because they really didn't work! IF they cut 10-15% off the top that was the best they could do, unless I took more and simply became a sleep zombie. Lidoderm patches help SOME for a localized pain, but not for the long term.
Honestly now that I'm no longer taking any direct meds for pain? My pain is simply a constant humm and burn, worse with over exertion tho...such a the rehab I've been doing. Prudent timing of ice, heat and lideoderm patches help a lot? But the humm is still there....ever present.
As for sleeping? I've found this stuff -IF it doesn't have extra b-6 added. Take a look at what's out there and try it?
http://www.vitaminshoppe.com/search/...mins&x=27&y=22
It's that phantom 'tryptophan' as in turkey overload? I have, due to other meds, found that this helped me maintain a better even keel on things in my life than before using it. I rarely need it now, but it IS useful during times of extraordinary stress. BTW? Even keel='s sleeping! More important than sleeping is the DREAMING you might do when sleeping. Do keep that in mind. IF you've not dreamed 'due to meds, stress or who knows what?' Once you resume dreaming some of them are gonna be whoppers! Don't know how else to put it out there. I believe the word used most often is "VIVID"? And they sure are! Just know that is sorta normal in the getting back to any part of 'normal' that there might be.
I agree w/Cyclops that all meds come at some price. Many known many not yet documented. And WE are the guinea pigs! Be sure to READ al 'prescribing info' on any and all meds you take! YOU could scare yourself silly or start to ask INTELLIGENT questions of your physician prescribers! So don't be shy about asking even the simplist, silly or stupid question that comes across your mind about your meds and their effects/cross-effects! Challenge them to do their homework on what all is blithely prescribed.
I too at first refused a 'sleep test'? And, later did it...you know what? It was disgustingly normal. Go figger... Tho...driving home afterwords was a 'challenge'? I'm still; here.
Hope always! - j

I do like your responses! When I gave in to the sleep study, mine came back disgustingly abnormal!Story of my life! My apnea is not severe, yet my PCP says it's just like being pregnant, you can't be a little pregnant, and you can't have just a little sleep apnea, you either have it, or you don't. I have apnea and insomnia, insomnia is not part of the apnea. Did that make sense?

My sleep doc told me we all need to have a regular sleep habit, to bed at the same time every night, awake at the same time every morning. People who sleep late on the weekends, saying they are making up for the sleep they missed during the week, are not doing their bodies any favors. He told me to keep bright lights on until maybe 1/2 hour before bedtime, then dim them, to make my brain realize it's time to relax. I do know, I do best if I go to bed at 10pm...if I stay up until 11 or later, then my brain has a much more difficult time relaxing...by then I am overtired, and just like a baby, it's harder for me to settle down when overtired.

For many of you on meds though, it's an whole different ball game. Pain and meds change everything. I wish there was something special for you. Then of course, there are always exceptions too. A friend of mine with diabetic neuropathy, and a bad knee, can take a Lunesta, and sleep through the night, like a rock. Why doesn't it work like that for all of us? Who knows.

Another friend told me to take 1/2 a Xanax before bed, saying my brain can't slow itself down..yet I really don't want to be dependant on Xanax either, and my sleep doctor says Xanax is not good for sleeping either.

I guess we all have to do that which works best for us. Our bodies naturally produce melatonin, and being that works fairly well for me, I am thinking maybe my body isn't producing enough melatonin to begin with. So I will stay with it.

Just my opinions!