PLMD Awakenings

[kteague]

This post is born out of the Premature Awakenings thread. Snoredog, thank you for that informative post and for the links. I have been trying to better understand my PLMD, which was at least as disruptive of my sleep as the apnea. Your approach of understanding root causes and treating those rather than just medicate the symptoms is what I have wished for. Seems the docs don't venture far from dopamine related meds. In any of your readings have you run across any info that relates damage to the part of the brain where PLMD originates to inhalation of toxic chemicals (formaldehyde)? I looked at some diagrams and articles, but couldn't tell where inhaled chemicals hit in the brain.

Interestingly, about 3 weeks ago I went off my Mirapex due to finances. In the last several years my PLMD went from leg contractions about every 13-14 seconds to wild flailing every 3-4 seconds. I attributed it the progression of the disorder, but now I've found that my movements have returned to contractions and some kicking, but have not had the "reach for the sky" leg flailings since going off the med. When the Cleveland Clinic docs cut my dosage in half in the spring, I found myself in better control of my decision making. Since going off the medicine completely, I'm doing even better. In the 3 weeks I've been off the med, I have quit biting my fingernails and cuticles - don't even think about it. (Was not biting them when I started the med.) Now if I could just figure out a better way to address the limb movements. So far I've only had one miserable night, but I have no idea what's happening that I'm not aware of. As it is I fully but briefly wake up about a half dozen times a night, can't say why.

Sure could use some input on things to try besides another med. Will ask my pharmacist about using the supplements you found helpful, Snoredog, and will review the information you supplied in depth. Thanks again.

Kathy

[rested gal]

For new readers who want to catch up...

Premature Awakenings thread:
viewtopic.php?t=14794

Naps vs. Nights thread (another topic referenced in the Premature Awakenings discussion):
viewtopic.php?t=14785

[Offerocker]

kteague: I'm going to PM you with some things that have worked for me with my PLMD; granted, not as bad as yours, but who knows!

[curtcurt46]

kteague,
I have posted to you before on PLMD. I too have the condition. I have been on requip for a month and the doctor is slowly increasing the dose to completely eliminate the limb movements. A wake-up 2-3 times each night, but this is an improvement over 4-6 times. I just started the increased dosage and it will take two weeks to get me to the new dose. I think it's working. I have had little or no side effects. I take my dose 1-2 hours before bedtime. There is no drug hangover.
Maybe the requip might work for you.

[Snoredog]

Personally, I don't think the shoebox full of prescription drugs as a solution or long term answer to your problem or any disorder for that matter. I certainly wouldn't give up on finding the root cause, but I wouldn't continue down a path if it wasn't working. Instead of spending your money on the current doctor, it doesn't cost any more to see another.

If you look at where you are today and where you want to be tomorrow, do you want to be taking some drug that costs $200 a month for the rest of your life? Not me.

Nearly every drug I've ever read up on stops working or becomes ineffective in a few weeks or once your body becomes accustomed to it. This seems more true if you take a drug that only masks the symptoms instead of getting down to the root cause of the disorder. Then if you don't address the underlying cause now you will only have to address it later on when you are much older and possibly less able to do so.

Now my theory: I would not rule out the iron levels even if your ferritin levels were found normal. Understand I see RLS and PLMD being very similar disorders. In fact, RLS is a syndrome not a disorder. It is not until they understand the cause do they reclassify a syndrome as a disorder. I think one is more severe than the other. Again it has to do with the level seen in basal ganglia in the brain not in your blood while there may/not be a connection to those levels.

Back when I was having a TIA once a week, I had a Hematologist/Oncologist tell me after he sent me in for blood work where they took like 16 vials of blood from me looking for traces of Leiden FactorV or some other clotting disorder. After getting the results back I spent weeks going through each test in order to see what it all meant, then when I got back to see him, he sent me again to another lab to have the same tests performed all over again.

I asked why? He said even the most decisive blood tests are only about 60-70% accurate at best. He said it all depends if that gal taking blood from your arm gets the sample refrigerated in time or the test run before the sample goes bad. He asked was it busy in the lab when you went? I said yes, they were standing in line going out the door before lunch into the the hallway people holding their chickens and everything

The kind of brain health I'm talking about has more to do with your cerebral spinal fluid than it does with blood serum or plasma levels. I see your cerebral spinal fluid like the battery acid in a car battery, if the electrolyte is not quite right the battery won't hold or deliver the correct charge. If your cerebral spinal fluid is not healthy your brain won't be able to function properly and send the correct electrical signal where it needs to go. Keep in mind this fluid runs all the way down your spine as well, it also flushes out all the dead brain cells out of your brain eventually making its way out your sinuses where it is flushed out of your system. So do you drug up and desensitize the brain receptors or do you look at ways to improve that cerebral spinal fluid electrolyte to restore normal brain electrical activity? It is akin to the spark plug wires in your car, if the wires are bad and insulation gone the spark may short out and travel to the nearest exhaust manifold instead of going to the spark plug where it is needed for combustion.

There was a cocktail you could take at one time, studies have been controversial at best on it but it was simple, B6, B12 and Folic Acid. I was prescribed 1mg/day of FolicAcid (Folate), but after the scripts and insurance ran out, I just took 800mcg's that you can buy anywhere. Its purpose was to lower your homocysteine level (thought to also improve cardiac health) but it has also been shown to increase oxygen destined to the brain. It was prescribed to me by Dr. Jacob Elkins, MD of UCSF Neurology, this was back when I was having those twitches from the stroke. I have to say there was a noticeable difference and he didn't prescribe anything I couldn't already get over the counter. At the time, this Doctor was just a kid in my eyes I bet he wasn't over 28yrs old but man was he sharp. I referred to him as Dugie Houser (he actually looked a lot like him too). Little did I know he had already published numerous papers on various neurological topics published in nearly every medical Journal you could find. I see now he has published even more (click on his list of publications below).

http://www.ucsf.edu/stroke/elkins.htm

I tell ya, if you are ever in the SF area, I would look him up and try to get an appointment if you can. When I seen him back in 2000-2001 time frame I also met his Professor, he was a world renown Neurologist. These guys know their stuff and what they are talking about. I also learned something back then, you can go down the street and see a hohum doctor or you can go to an institution and see the best doctor in the country in a particular field and it doesn't cost you a dime more. Needless to say I never went back to my regular Neuro, I think she was more into Botox treatments anyway.

Lastly I would consider a good quality multi-vitamin, one that has plenty of minerals. If you also have GERD even more a reason to make sure it has minerals. Multi's may not contain iron because they make them to be used by both sexes and men shouldn't have too much iron. I would try the iron supplement for a few weeks it is called SLO-Iron it is OTC and timed release. I would also make sure you are getting your minerals such as magnesium, reason I take Multi-Mega Minerals from GNC. It has about everything you need, it is also vegetable based so it absorbs more easily. It costs $9 bucks for 100 tablets. I would try that for a few weeks and see if it helps.

Note: when you go the homeopathic route things don't happen very fast. Most people take a supplement for a few days or a week and say that doesn't work. You need to take them for a week to a month before you ever notice the difference.

Tip: Sign up to give blood, I give blood every 6 weeks and get free blood tests If there is something seriously wrong they will tell you.

I don't know anything about the long term effects of formaldehyde exposure, it comes from a lot of sources including building materials such as particle board etc.:

Formaldehyde, a colorless, pungent-smelling gas, can cause watery eyes, burning sensations in the eyes and throat, nausea, and difficulty in breathing in some humans exposed at elevated levels (above 0.1 parts per million). High concentrations may trigger attacks in people with asthma. There is evidence that some people can develop a sensitivity to formaldehyde. It has also been shown to cause cancer in animals and may cause cancer in humans. Health effects include eye, nose, and throat irritation; wheezing and coughing; fatigue; skin rash; severe allergic reactions. May cause cancer. May also cause other effects listed under "organic gases." EPA's Integrated Risk Information System profile -

http://www.epa.gov/iris/subst/0419.htm

[Guest]

Snoredog,
Just one comment on disorder v. syndrome. I have read just about everything out there and have attended at least one seminar on the subject. The fact is the research community does not know the cause for either RLS or PLMD. They both can be quite severe, especially when they keep you from sleeping like you should. An interesting fact is that about 80% of those diagnosed with RLS also have PLMD. Another interesting fact about RLS is that the symptoms can be caused by over 100 of the most prescribed drugs.
curtcurt46[/quote]

[curtcurt46]

I posted the above and I though I was signed in as I am know.

[Snoredog]

Snoredog,
Just one comment on disorder v. syndrome. I have read just about everything out there and have attended at least one seminar on the subject. The fact is the research community does not know the cause for either RLS or PLMD. They both can be quite severe, especially when they keep you from sleeping like you should. An interesting fact is that about 80% of those diagnosed with RLS also have PLMD. Another interesting fact about RLS is that the symptoms can be caused by over 100 of the most prescribed drugs.
curtcurt46

[/quote]

I once read we have this neurological wake/sleep switch, thought to occur when you get that hypnic jerk at right before dozing off into sleep.

From what I've read, your RLS/PLMD leg movement symptoms are very similar to a series of those hypnic jerks.

But instead of only 1 or 2 of these which are normal, there can be many more of these that take place during sleep. Just as the normal hypnic jerk startles you back to a wake state in which we are familiar with, these repeat leg jerks may cause arousals that can do the same to your sleep. They come from your brain, go down the nerve via spinal cord to the leg muscle, if they get a signal from the brain the leg is going to move.

The deeper in sleep you get the more that switch turns off muscle control to your limbs. It is thought to do this so you don't act out on your dreams and hurt yourself during sleep. Now for some people that switch malfunctions.

Now it seems logical to me that if the neurological switch that controls this function malfunctions in your case (fails to turn off) that the signals going to your leg muscles can still take place and the movements are a result.

Another example of this switch when it malfunctions in the opposite direction, you can prematurely wake up and find you cannot move. People that have this say it is a very frightening experience. We know this syndrome as Sleep Paralysis.

There is no medication I know of that you can take for Sleep Paralysis, but many times just knowing what is taking place can help get past the anxiety and get through it. Most of the time people just fall back asleep and when they wake up the next time they wake up normally.

It was once thought that our brains went to sleep and there was less activity. Some research seems to suggest the opposite is true, there is much more brain activity during sleep than once thought. So if there is increased brain activity and the neurological "switch" to your limbs hasn't been completely turned off those limbs can still receive signals and move as a result.

So could this be the cause of those leg/limb movements? They don't know as you suggest, reason I keep going back to a chemical imbalance in the brain.

Maybe they need to try one of the new anticonvulsant medications for relief. The problem is if your doctor is a straight arrow, the FDA doesn't allow them to prescribe medications off-label. That means if one of these new anticonvulsant drugs may help you, that you may never see them until the FDA approves it for that use or you get involved with some kind of a trial.

So supplements is about the only thing you have left you can try. One thing about supplements, is if taken at their suggested doses they don't usually result in harm.

So what do you try? Well, if my leg was moving during sleep I would compare that to those twitches I used to get and when I researched that years ago I came up with studies showing vitamin C and minerals helped with nerve damage. Vitamin C also helps restore vascular health which I was also interested in.

[ozij]

Multi's may not contain iron because they make them to be used by both sexes and men shouldn't have too much iron.

That is true of post-menopausal women as well. They've found a correlation between higher iron levels and and heart problems.

Thanks for all the info, and the link to Elkins, snoredog.


O.

[RobbyRobert]

I have PLMD and have used Sinemet (Short and Long acting) very successfully for more than 6 years. It is very inexpensive (especially the short acting) and works very well.

My insurance covers it and I only have the $10 co pay for both.

When I have forgotten to take it a few times, I really notice how tired I am the next day.

I would really encourage you to ask your doctor about using Sinemet, as it is much cheaper than some other PLMD drugs.

Either way, take something that works, for without it, you will generally be much more tired.

Robert

[Offerocker]

I have PLMD and have used Sinemet (Short and Long acting) very successfully for more than 6 years. It is very inexpensive (especially the short acting) and works very well.

My insurance covers it and I only have the $10 co pay for both.

When I have forgotten to take it a few times, I really notice how tired I am the next day.

I would really encourage you to ask your doctor about using Sinemet, as it is much cheaper than some other PLMD drugs.

Either way, take something that works, for without it, you will generally be much more tired.

Robert

Robert,

I am very concerned about your taking Carbidopa/Levo (Sinemet), especially for 6 years. What dosage and frequency are you taking of this medication?

My husband has Parkinson's, and takes the 25/100 dosage multiple times daily. It is nasty stuff, causing uncontrollable facial movements. These are alleviated with Amatadine. I am surprised that you do not report ANY side-effects from this medication; maybe you are taking a very low dosage? Please post your dosage - for information of those of us who have PLMD. I once had PLMD so severely that I took one my husband's Sinemet (a higher dosate at the time), and was slapped on the wrist by my doctor. I know what it has done to hubby, so am confused as to why you do not have the same reactions, which are NOT related to PD, but to the medication.

I am happy that it has solved your movements, but am also worried about the effects of Sinemet.

Thank you,
Kathleen

[kteague]

Thanks everyone for your replies. I have so much to consider now with all the information you've given. Six months ago when I first quit working, the brain fog was so bad that I wouldn't even have been able to process it all. But treating my OSA has helped my brain be renewed (not sure which part of the brain that is, Snoredog ) I'm loving all the learning.

As of this moment I still am not on any meds for the movements. I can tell sometimes they are present, but not tormenting, so I want to try to give getting better sleep, taking vitamins and supplements, and increasing activity some time then re-evaluate the movements and need for medication. Being off medication for several weeks has convinced me that the side effects truly are about as bad as the disorder. However, when I was first diagnosed nearly 10 years ago, the sleep disruption and joint & muscle pain was so bad I would probably have eaten snake heads if I thought it would give me some relief. Suprisingly, the nonmedicated frequency and intensity of the movements now is dramatically reduced from those early years.

My first medication for several years was Sinemet. The reason it should not be taken intermittently, is that if not started at a low dose, it can cause horrible reactions (psychotic like), which I experienced. Also, so many things influenced its effectiveness and their interaction caused nights of torment, where I felt I could lose my mind. However, the peaceful sleep it did usually give me was enough to make me reluctant to give it up. Then after a few years the "extra" daytime movements became a problem. Changed docs and that doc said Sinemet is a dopamine replacement, not an agonist, and should not be used except as a last ditch effort. Seems it only works for a few years and is no longer effective. If one uses that time up, what will happen if the disorder worsens later or they develop Parkinson's and desperately need that med? That's why I was switched to Mirapex, and dealt with its side effects also (wild flailing, compulsions) in dread of the old days when sleep was so awful. Now, 10 years later, I need to take a fresh look.

If the movements get bad again, I'll do whatever it takes to stop them. But this time around I want prescription meds to be the last line of treatment, not the first. Guess everyone has to find what works for them. It's a horrible affliction for some, and must be controlled when it affects sleep. Otherwise, the whole body suffers. I wish successful treatment for anyone dealing with this, whatever that treatment may be. Thanks again, everyone.

Kathy

P.S. Had some inquiries about the degree of formaldehyde exposure. In a hospital pathology lab, a 5 gal plastic jug of Formalin, which contains 2000ml of Formaldehyde, spontaneously ruptured at a seam and saturated me with the liquid. Had excessive contact and inhalation exposure.

[Snoredog]

Kathy wrote:

P.S. Had some inquiries about the degree of formaldehyde exposure. In a hospital pathology lab, a 5 gal plastic jug of Formalin, which contains 2000ml of Formaldehyde, spontaneously ruptured at a seam and saturated me with the liquid. Had excessive contact and inhalation exposure.

from National Cancer Institute:
http://www.cancer.gov/cancertopics/fact ... ldehyde#q5

# What are the short-term health effects of formaldehyde exposure?

When formaldehyde is present in the air at levels exceeding 0.1 ppm, some individuals may experience health effects such as watery eyes; burning sensations of the eyes, nose, and throat; coughing; wheezing; nausea; and skin irritation. Some people are very sensitive to formaldehyde, while others have no reaction to the same level of exposure.

Formaldehyde is basically embalming fluid.

Several NCI studies have found that anatomists and embalmers, professions with potential exposure to formaldehyde, are at an increased risk for leukemia and brain cancer compared with the general population.

If you rinsed it off right away Kathy I would think the risk would be low as that would be short term exposure, long term exposure would be like embalmers that use it every day for years, they run the increased risk of developing cancer from the exposure.

The above link from NCI had about the most information I could find on it.

[Offerocker]

Mirapex is an agonist for Sinemet.