Parkinson's Disease Tulip


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Old 03-04-2011, 01:25 PM #1
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Default Zolpidem..(Ambien)

I have been taking generic Ambien..(Zolpidem 10 mgs)..at night about an hour before bedtime, for quite some time now, and have noticed that my body seems to release from the weakness that follows my off period, after my meds wear off for the night..The process of wearing off, begins about 6:30 pm with dyskenisia, and then I get a huge spasm on my right knee that encompasses it front and back..This is when the shuffling, and freezing starts

For the past two nights in a row, I decided to take a Zolpidem at 7:00 pm when I am wearing off for the day, to see what would happen..A half an hour after taking the Zolpidem, the spasm was gone, and I could walk without too much shuffling, and the freezing was minimal..I took another one at 11:30 pm, and after midnight, I was almost symptomless

This has happened two nights in a row..What is up with that?..Does anyone have any thoughts on this?
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Old 03-06-2011, 08:39 PM #2
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Default Steve

I don't know what's up with you getting asymptomatic other than maybe you're really sleeping! You should not take two 10 mg Ambien that close together! That's the same stuff they use to put you to sleep for surgery. Please be careful!


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Old 03-06-2011, 11:22 PM #3
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Default It's all in the GABA

Steve,

That is wonderful for you...what a relief. I think that your symptoms are subsiding because Ambien releases GABA into our brains. GABA like dopamine is an inhibitor, so in our case it is picking up the slack. It's GABAs job to rather scan for overfiring synapses and to tone them down...hence the symptom relief.

I get the same effect with Klonopin which works in similar fashion; however, it is highly addictive as is Ambien, so look out. You may want to ask your doc about the CR which will last you through the night and safer to use long term
from what have read.

I have an unopened bottle of Ambien CR but have been afraid to take it as it can result in sleep actions. More than just sleepwalking...a person gets up to cook, draw a bath, drive the car...all while sleeping! I am hoping that the CR version is safer in this regard too.

Also, your news is exciting because it proves that the Neurologix is on the right track with its new PD therapy using GABA to help restore balance among our neurotransmitters. They are in Phase II clinical trials.

You are proof that they are definitely onto something big...I imagine we may still need levodopa but less of it. Kind of same ideal outcome minus the freaky surgery and lead wires. Plus I like how Neurologix is taking what we already have in us and harnessing its power to in a sense heal us.
Laura

Last edited by Conductor71; 03-06-2011 at 11:26 PM. Reason: general sloppy typing
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Old 03-06-2011, 11:35 PM #4
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Peg, Thanks for the warning..I still only slept 4-5 hours, as usual, the few times I have taken 2 Ambiens in one day, and didnt feel high at all, or under the weather, which is good..I see my neuro next month, and I am going to talk to him about this
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Old 03-07-2011, 12:44 AM #5
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Originally Posted by Conductor71 View Post
Steve,

That is wonderful for you...what a relief. I think that your symptoms are subsiding because Ambien releases GABA into our brains. GABA like dopamine is an inhibitor, so in our case it is picking up the slack. It's GABAs job to rather scan for overfiring synapses and to tone them down...hence the symptom relief.
It was a welcomed relief!!..I kinda figured there was some sort of inhibitor in it

My problem is the nagging uncomfortable feeling I experience in my entire body, after I go "off" from Stalevo for the night..I can deal with the shuffling, and the brandykinesia, but being so uncomfotable that I have to wear sweatpants cuz wearing jeans drives me bonkers, is more than I can deal with..It will drive one insane after a while

Quote:
I get the same effect with Klonopin which works in similar fashion; however, it is highly addictive as is Ambien, so look out. You may want to ask your doc about the CR which will last you through the night and safer to use long term
from what have read.
I started out on Klonopin 3/4 mg for sleep..It worked for about 6 months, and I knew that my options were either more Klonopin, which I did not want to do, or try a different med..So my neuro Rx-ed Amien, which was great for addressing the sleep issue, consistantly..Ive been using it for about a year now..

Then the uncomfort set in almost over night approx 6 months later, so my neuro Rx-ed Valium 5 mg once daily at 6:00 pm, Ambien at midnight..For 3 months the Valium worked great, then lost its effect, and I began to notice this release from the discomfort after midnight every night..The only thing that had changed in my condition, was the ingestion of Ambien after midnight, so I put 2+ 2 together, and experimented replacing the one dose of Valium with the Ambien..I got a release in 30 minutes, and was nearly symptom free at about 12:30 am after the midnight dose..It didnt surprise me that it worked, but I was taken aback by how well it did work..I have done this about 4 times with mixed results, but all positive results nonetheless

Quote:
I have an unopened bottle of Ambien CR but have been afraid to take it as it can result in sleep actions. More than just sleepwalking...a person gets up to cook, draw a bath, drive the car...all while sleeping! I am hoping that the CR version is safer in this regard too.
My neuro mentioned CR briefly, but didnt get into it

Guess I'll throw out the anchor out at betime if I try it

Quote:
Also, your news is exciting because it proves that the Neurologix is on the right track with its new PD therapy using GABA to help restore balance among our neurotransmitters. They are in Phase II clinical trials.
Thanks for the link!...I willl check it out

Quote:
You are proof that they are definitely onto something big...I imagine we may still need levodopa but less of it. Kind of same ideal outcome minus the freaky surgery and lead wires. Plus I like how Neurologix is taking what we already have in us and harnessing its power to in a sense heal us.
Laura
Im all for alternatives to surgery and wires..Ive seen miracles, and disasters with DBS..Not quite ready to embrace going down that road yet
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Old 03-07-2011, 10:01 AM #6
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Post Going off at night

Steve,
I have always wondered this and now I must ask--or maybe I have asked and forgot what you said:

Why do you go off for the night?

By my reading of the literature, nothing does a better job of producing dyskinesias and dystonias than what they call "pulsatile delivery" of Sinemet (or equivalent). "Stay on" is the watchword given me by several neuros (some of them even good doctors!).

I have stayed on as evenly as i can these twelve years, and personally I think it has helped me to mostly avoid motor complications severe enough to bother me. I now take Sinemet every three hours, around the clock if I wake up, and if I start having gaps in coverage I'm on the phone to the neuro. But that's me.

I tried klonopin after a sleep study showed I act out my dreams and don't get much REM sleep. i had a paradoxical reaction to it and was wide awake all night.

Best of everything to you,
Jaye
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Old 03-07-2011, 12:24 PM #7
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Quote:
Originally Posted by Jaye View Post
Steve,
I have always wondered this and now I must ask--or maybe I have asked and forgot what you said:

Why do you go off for the night?

By my reading of the literature, nothing does a better job of producing dyskinesias and dystonias than what they call "pulsatile delivery" of Sinemet (or equivalent). "Stay on" is the watchword given me by several neuros (some of them even good doctors!).

I have stayed on as evenly as i can these twelve years, and personally I think it has helped me to mostly avoid motor complications severe enough to bother me. I now take Sinemet every three hours, around the clock if I wake up, and if I start having gaps in coverage I'm on the phone to the neuro. But that's me.

I tried klonopin after a sleep study showed I act out my dreams and don't get much REM sleep. i had a paradoxical reaction to it and was wide awake all night.

Best of everything to you,
Jaye
Jaye..I was taking Sinemet CR for about 18 months because it worked good for me..Then I started having trouble with failed doses..Sometimes I would take my 3 doses of..(50/200)..CR and nothing would happen all day..I was walking around like a zombie

So I called my neuro, and told him that I needed to see him ASAP, that I couldnt wait for the next available scheduled appointment

He examined me, and suggested I try Stalevo 200 mg, x 3 daily, so he gave me some samples..It worked great..Then when my supply of samples ran out, I got an Rx for it, and my Part D rejected the Rx and said that I had to try Comtan and Sinemet seperately..So I tried it, and it was a nightmare..Not only was it unpredictable, I had never had dyskenisia untill I tried this combination..So I called my neuro and told him it wasnt working..He contacted the insurance company, and got them to approve the Stalevo..All went well for a while, and then I began to start having nasty off periods..So I went back to the neuro, and he gave me the green light to go from 3 doses, to 4 doses per day..I tried it for a while, and the fourth dose either worked, didnt work, or gave me 4 hours of dyskenesia..At this point, I was so afraid, that if I continued this regimen, my whole day might turn into a dyskenetic horror show..I cant handle dyskenisia, it drives me insane

I have tried supplimenting my daily regimen with regular Sinemet, but all I get out of it is severe muscle cramps, and dyskenisia..The other problem with the Stalevo, is the cost..With the other meds I take, I'll hit the doughnut hole in about 6 months

The only other thing that works is Zandopa, and when Im having an off day, I take a teaspoon of it, and mix it with water, and I am near symptom free..I dont use it on a regular basis, because when I stop taking it, it interferes with the performance of the Stalevo for a few days

So Im inbetween a rock and a hard place, which is why I have been put in a situation where I have to try other meds to take the edge off of the off periods

I am not too comfortable about taking addictive drugs, because of my addictive personality, but it's either that, or DBS, and I am not ready to go that route yet..Like I mentioned in a previous post..Ive seen miracles with DBS, and Ive seen trainwrecks with it as well..Ever since the day I saw Laura..(Harley)..get shocked/electrocuted when she was being being programed, at the hospital in Seattle, I have had serious reservations about having DBS, unless I get so bad that there is no other alternative
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Old 03-07-2011, 02:53 PM #8
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Default Another taboo topic

Jaye,

Thank you for speaking up! I am one of those closet must be "on" all the time people. How in the world can stopping the drug so abruptly be beneficial for us? If anything, I think it would instead have your brain even more stressed when it is seeking something it needs and all of a sudden is cut off. This is why Steve (and others) have such a nasty time at night; your dystonia, all of it, most likely is due stopping meds.

I also am beginning to suspect from what I have read that doctors are rather arbitrarily issuing a final dose for the night. Why would anyone's doctor want their patient to essentially spend every evening in such discomfort?

I agree with you Jaye; there are many doctors who will listen to you and your needs. I have read in other forums that some neuros don't cap the levadopa intake at all.

As for me, yes I hate being dependent on meds. We vilify levadopa, when in reality it is the grossly inadequate delivery that causes the problems. If you can, try liquid Sinemet for half a day. The difference is amazing. When is the FDA going to get with it and approve Duodopa?!!

For instance, I have a two year old boy to look after, so I am certainly not going to be off all meds for 6-8 hours ovwernight. I
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Old 03-09-2011, 10:44 PM #9
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I took an Ambien at 6:00 pm, before my Stalevo wore off..I got 3 extra hours of on time..This is the first time I took it while Stalevo was still active..I got dysknetic at 9:00 pm, but only mildly instead of aggressively for about 30 minutes..The wear off period was gentle, and I bounced back a tad a few mintes ago..No shuffling..No freezing since 10:00 pm, and I feel reasonably comfortable

This I can deal with
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Old 03-13-2011, 10:57 PM #10
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Took Ambien 10 mg at 5:30 pm..Extended on time with mild dykenisia untill 9:00 pm..Dyskenesia began at 5:15 pm

Trouble walking after 11:00, but comfortable..Off period transitioned gradually and mildly
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