I have seen multiple doctors regarding this problem. Many jump straight to a diagnosis of Restless Leg Syndrome (RLS). However, the standard description of RLS is a feeling of bugs crawling on your legs or a restless ache that only goes away if you move your legs. I have done extensive research online and viewed others with RLS and have yet to find a case of it that fits my symptoms. Also, it seems people suffering from RLS will be woken up after falling asleep by the sensations in their legs. However, once I fall asleep, I am good for the rest of the night. I can even wake up and go to the bathroom and go back to bed and fall asleep with no problems.
In my case, I will feel fine, tired, and ready to fall asleep. Just as I doze off, one leg (usually my left thigh) will suddenly contract. The feeling is like a small or moderate electrical jolt and my leg will jerk or contract by itself. The shock and movement always startles me and I am no longer asleep. This happens every time I start to doze off. It is like I have a sadistic torturer who waits for me to doze off, only to zap me back to consciousness. Taking sleeping aides to help me sleep only makes it worse. Instead of being jolted awake 4 times in an hour, it would be 4 times in 10 min.
Pain Killers alone used to work but then at some point around 2016 or 2017 it stopped working unless I increased the dosage. Since I was worried that just doing that could cause a dependency issue, I went to a Neurologist. At first, he wanted to put me on Parkinson’s medication, but I pointed out that there was time period where my legs were exceptionally bad, and those medications worked only for a few months then I would have the twitches and painful contractions during the day. We compromised with a combination of drugs consisting of ropinirole and a temazepam sleeping pill, no pain killers. The only problem with this arrangement was that I had to “Hit the Window” when I try to fall asleep. If I go too early, the leg twitches persist and never allow me to sleep. If I try to fall asleep too late, the sleeping pill fails to put me under before the leg starts twitching. On those nights, I would have to take a pain killer and wait 2 or more hours before I would be able to fall asleep.
I struggled with this arrangement until I was diagnosed with Bladder Cancer. While doing research on the possible causes, I found an article that linked Bladder Cancer to sleeping pills. It stated that a person who takes more than 124 sleeping pills a year increased their chances of getting Bladder Cancer by 34%. I was taking it for 2.5 years every day. I stopped taking it and we then switched to Tramadol. My Father also was taking a nightly sleeping pill and I warned him about the link, and he ignored me. One year later, he too got Bladder Cancer.
I have tried the following:
1. Exercise
2. Warm/Hot bath or Shower
3. Meditation (sound and light)
4. Magnesium
5. Calcium
6. Potassium
7. B1 and other Vitamins
8. Booze (makes it worse)
9. Medical Marijuana (Dosage required to fall asleep kept me down for too long and prevented REM sleep)
10. Bar of soap at my feet (when you are desperate enough, you will try anything)
11. Even tried living off of only Juicing for 6 weeks, lost weight but problem still persisted with no change in severity
Upon extensive research I feel that instead of having RLS, I instead have an extreme or atypical case of PLMD, Periodic Limb Movement Disorder. I base this on the time period where I was relying on the sleeping pills to hit the window to fall asleep. While asleep, I was told that my arms and legs would jerk violently, almost like a mini seizure, but I did not wake up. Now that I am no longer taking the sleeping pills and take Tramadol instead, it seems that my limbs no longer jerk or twitch while I am sleeping. As far as I can tell since I sleep alone. I have occasionally recorded myself sleeping to see if the twitch/seizure still happens but so far, I have been lucky.
I have read online that one theory for RLS is a drop in Dopamine levels in the brain at the moment a person transitions from wakefulness to sleep. I also noted that a study done indicated that drug addicts (does not apply to me) are more likely to experience RLS. Also, people who are Scandinavian descent tend to get it more than average as they get older. With that I “Think” that for whatever reason or cause, I have a lower dopamine level and as I drift off to sleep, it drops too far below some threshold which causes that extreme PLMD reaction. By taking the tramadol, it raises my dopamine levels high enough that when I drift off, it does not drop far enough to cause the Hypnic Jerk.
For some reason I seem to have a high tolerance to various drugs, and it takes a lot longer for many of them to “Kick in” so to speak. Gaining weight did not help matters much either. As it stands now, this is what I need to do/take in order to fall asleep each night.
Tramadol 250 mg (takes 2 hours to kick in, then works for 4-5 hours)
Once the Tramadol takes effect, I can take my “Night Pills”.
Gabapentin 1200 mg
L-Theanine (over the counter, 200mg)
Ropinirole 3mg
Lisinopril 40mg
Melatonin (over the counter, 20mg)
Benadryl (over the counter, 2 pills)
The “Over the Counter” medications are to help me feel tired faster so that I can fall asleep. If I accidently forget to take the Tramadol, then I get very tired, and the leg torture begins. If I am really tired and up late without taking any of my medication, then both legs will do the shock/seizure thing and cause me to literally double up in pain as if I were being tasered. After a minute or two it happens again and again and again. Then when I am able to take my pain killer, it takes almost 4 hours to alleviate the torture.
I would absolutely love to find a cure or way for me to be able to fall asleep each night free from the worry of possibly being tortured for hours before being able to sleep.
I have seen multiple doctors regarding this problem. Many jump straight to a diagnosis of Restless Leg Syndrome (RLS). However, the standard description of RLS is a feeling of bugs crawling on your legs or a restless ache that only goes away if you move your legs. I have done extensive research online and viewed others with RLS and have yet to find a case of it that fits my symptoms. Also, it seems people suffering from RLS will be woken up after falling asleep by the sensations in their legs. However, once I fall asleep, I am good for the rest of the night. I can even wake up and go to the bathroom and go back to bed and fall asleep with no problems.
In my case, I will feel fine, tired, and ready to fall asleep. Just as I doze off, one leg (usually my left thigh) will suddenly contract. The feeling is like a small or moderate electrical jolt and my leg will jerk or contract by itself. The shock and movement always startles me and I am no longer asleep. This happens every time I start to doze off. It is like I have a sadistic torturer who waits for me to doze off, only to zap me back to consciousness. Taking sleeping aides to help me sleep only makes it worse. Instead of being jolted awake 4 times in an hour, it would be 4 times in 10 min.
Pain Killers alone used to work but then at some point around 2016 or 2017 it stopped working unless I increased the dosage. Since I was worried that just doing that could cause a dependency issue, I went to a Neurologist. At first, he wanted to put me on Parkinson’s medication, but I pointed out that there was time period where my legs were exceptionally bad, and those medications worked only for a few months then I would have the twitches and painful contractions during the day. We compromised with a combination of drugs consisting of ropinirole and a temazepam sleeping pill, no pain killers. The only problem with this arrangement was that I had to “Hit the Window” when I try to fall asleep. If I go too early, the leg twitches persist and never allow me to sleep. If I try to fall asleep too late, the sleeping pill fails to put me under before the leg starts twitching. On those nights, I would have to take a pain killer and wait 2 or more hours before I would be able to fall asleep.
I struggled with this arrangement until I was diagnosed with Bladder Cancer. While doing research on the possible causes, I found an article that linked Bladder Cancer to sleeping pills. It stated that a person who takes more than 124 sleeping pills a year increased their chances of getting Bladder Cancer by 34%. I was taking it for 2.5 years every day. I stopped taking it and we then switched to Tramadol. My Father also was taking a nightly sleeping pill and I warned him about the link, and he ignored me. One year later, he too got Bladder Cancer.
I have tried the following:
1. Exercise
2. Warm/Hot bath or Shower
3. Meditation (sound and light)
4. Magnesium
5. Calcium
6. Potassium
7. B1 and other Vitamins
8. Booze (makes it worse)
9. Medical Marijuana (Dosage required to fall asleep kept me down for too long and prevented REM sleep)
10. Bar of soap at my feet (when you are desperate enough, you will try anything)
11. Even tried living off of only Juicing for 6 weeks, lost weight but problem still persisted with no change in severity
Upon extensive research I feel that instead of having RLS, I instead have an extreme or atypical case of PLMD, Periodic Limb Movement Disorder. I base this on the time period where I was relying on the sleeping pills to hit the window to fall asleep. While asleep, I was told that my arms and legs would jerk violently, almost like a mini seizure, but I did not wake up. Now that I am no longer taking the sleeping pills and take Tramadol instead, it seems that my limbs no longer jerk or twitch while I am sleeping. As far as I can tell since I sleep alone. I have occasionally recorded myself sleeping to see if the twitch/seizure still happens but so far, I have been lucky.
I have read online that one theory for RLS is a drop in Dopamine levels in the brain at the moment a person transitions from wakefulness to sleep. I also noted that a study done indicated that drug addicts (does not apply to me) are more likely to experience RLS. Also, people who are Scandinavian descent tend to get it more than average as they get older. With that I “Think” that for whatever reason or cause, I have a lower dopamine level and as I drift off to sleep, it drops too far below some threshold which causes that extreme PLMD reaction. By taking the tramadol, it raises my dopamine levels high enough that when I drift off, it does not drop far enough to cause the Hypnic Jerk.
For some reason I seem to have a high tolerance to various drugs, and it takes a lot longer for many of them to “Kick in” so to speak. Gaining weight did not help matters much either. As it stands now, this is what I need to do/take in order to fall asleep each night.
Tramadol 250 mg (takes 2 hours to kick in, then works for 4-5 hours)
Once the Tramadol takes effect, I can take my “Night Pills”.
Gabapentin 1200 mg
L-Theanine (over the counter, 200mg)
Ropinirole 3mg
Lisinopril 40mg
Melatonin (over the counter, 20mg)
Benadryl (over the counter, 2 pills)
The “Over the Counter” medications are to help me feel tired faster so that I can fall asleep. If I accidently forget to take the Tramadol, then I get very tired, and the leg torture begins. If I am really tired and up late without taking any of my medication, then both legs will do the shock/seizure thing and cause me to literally double up in pain as if I were being tasered. After a minute or two it happens again and again and again. Then when I am able to take my pain killer, it takes almost 4 hours to alleviate the torture.
I would absolutely love to find a cure or way for me to be able to fall asleep each night free from the worry of possibly being tortured for hours before being able to sleep.
Hello @tarawavet64, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience with Periodic Limb Movement Disorder. It is good to see that you have done a lot of research on the condition. You may have already seen these but I thought I would share them again just in case you haven't seen them.
Have you considered seeking help from a major teaching hospital or health facility like the Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
Hello @tarawavet64, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience with Periodic Limb Movement Disorder. It is good to see that you have done a lot of research on the condition. You may have already seen these but I thought I would share them again just in case you haven't seen them.
Have you considered seeking help from a major teaching hospital or health facility like the Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
I had a severe case of this in 2019. The involuntary jerking movements started in my sleep with one or two leg movements, then gradually worsened to the point that I was having up to about 200 of these movements a night. They are like electric shock, sudden jolts. I also had the movements while awake--usually when tired-- sometimes with involuntary vocalization--and my spouse, unbeknownst to me at the time, took a video. (Video taken in ER, where I'd been advised to go as one of my docs suggested it was a medication side effect.) I saw a neurologist who was not much help and insisted that this was RLS. ( I do not have RLS or sleep apnea.) Several medications were prescribed, none helped. I consulted another neurologist (much more knowledgable), who ordered a sleep study, which showed nothing, even though I was aware of having movements that night. My next step was going to be seeing a physician at Mayo. Then the pandemic hit. In 2020, the jerks gradually lessened so that I now have only about two at a time when sleepy, before bed, and one or two nights a week when they awaken me in the night, anywhere from 1 to 10 movements/night. Four neurologists, 3 in the U.S. and one in China, saw the video and none had ever seen anything like it before. "Knee flexion" is mentioned somewhere. Is this what I have? My feet come way off the floor when siting/awake, and that's the same movement at night--what you'd experience if you quickly tightened your abdominal muscles and lifted your knees toward your chest. I would like to know who at Mayo might like to see this video and/or be interested in seeing me as a patient, even though the jerks are much less problematic at this time. Also, is anyone in the U.S. researching this disorder? I would like to offer my video. I would add it here but don't know how.
I have seen multiple doctors regarding this problem. Many jump straight to a diagnosis of Restless Leg Syndrome (RLS). However, the standard description of RLS is a feeling of bugs crawling on your legs or a restless ache that only goes away if you move your legs. I have done extensive research online and viewed others with RLS and have yet to find a case of it that fits my symptoms. Also, it seems people suffering from RLS will be woken up after falling asleep by the sensations in their legs. However, once I fall asleep, I am good for the rest of the night. I can even wake up and go to the bathroom and go back to bed and fall asleep with no problems.
In my case, I will feel fine, tired, and ready to fall asleep. Just as I doze off, one leg (usually my left thigh) will suddenly contract. The feeling is like a small or moderate electrical jolt and my leg will jerk or contract by itself. The shock and movement always startles me and I am no longer asleep. This happens every time I start to doze off. It is like I have a sadistic torturer who waits for me to doze off, only to zap me back to consciousness. Taking sleeping aides to help me sleep only makes it worse. Instead of being jolted awake 4 times in an hour, it would be 4 times in 10 min.
Pain Killers alone used to work but then at some point around 2016 or 2017 it stopped working unless I increased the dosage. Since I was worried that just doing that could cause a dependency issue, I went to a Neurologist. At first, he wanted to put me on Parkinson’s medication, but I pointed out that there was time period where my legs were exceptionally bad, and those medications worked only for a few months then I would have the twitches and painful contractions during the day. We compromised with a combination of drugs consisting of ropinirole and a temazepam sleeping pill, no pain killers. The only problem with this arrangement was that I had to “Hit the Window” when I try to fall asleep. If I go too early, the leg twitches persist and never allow me to sleep. If I try to fall asleep too late, the sleeping pill fails to put me under before the leg starts twitching. On those nights, I would have to take a pain killer and wait 2 or more hours before I would be able to fall asleep.
I struggled with this arrangement until I was diagnosed with Bladder Cancer. While doing research on the possible causes, I found an article that linked Bladder Cancer to sleeping pills. It stated that a person who takes more than 124 sleeping pills a year increased their chances of getting Bladder Cancer by 34%. I was taking it for 2.5 years every day. I stopped taking it and we then switched to Tramadol. My Father also was taking a nightly sleeping pill and I warned him about the link, and he ignored me. One year later, he too got Bladder Cancer.
I have tried the following:
1. Exercise
2. Warm/Hot bath or Shower
3. Meditation (sound and light)
4. Magnesium
5. Calcium
6. Potassium
7. B1 and other Vitamins
8. Booze (makes it worse)
9. Medical Marijuana (Dosage required to fall asleep kept me down for too long and prevented REM sleep)
10. Bar of soap at my feet (when you are desperate enough, you will try anything)
11. Even tried living off of only Juicing for 6 weeks, lost weight but problem still persisted with no change in severity
Upon extensive research I feel that instead of having RLS, I instead have an extreme or atypical case of PLMD, Periodic Limb Movement Disorder. I base this on the time period where I was relying on the sleeping pills to hit the window to fall asleep. While asleep, I was told that my arms and legs would jerk violently, almost like a mini seizure, but I did not wake up. Now that I am no longer taking the sleeping pills and take Tramadol instead, it seems that my limbs no longer jerk or twitch while I am sleeping. As far as I can tell since I sleep alone. I have occasionally recorded myself sleeping to see if the twitch/seizure still happens but so far, I have been lucky.
I have read online that one theory for RLS is a drop in Dopamine levels in the brain at the moment a person transitions from wakefulness to sleep. I also noted that a study done indicated that drug addicts (does not apply to me) are more likely to experience RLS. Also, people who are Scandinavian descent tend to get it more than average as they get older. With that I “Think” that for whatever reason or cause, I have a lower dopamine level and as I drift off to sleep, it drops too far below some threshold which causes that extreme PLMD reaction. By taking the tramadol, it raises my dopamine levels high enough that when I drift off, it does not drop far enough to cause the Hypnic Jerk.
For some reason I seem to have a high tolerance to various drugs, and it takes a lot longer for many of them to “Kick in” so to speak. Gaining weight did not help matters much either. As it stands now, this is what I need to do/take in order to fall asleep each night.
Tramadol 250 mg (takes 2 hours to kick in, then works for 4-5 hours)
Once the Tramadol takes effect, I can take my “Night Pills”.
Gabapentin 1200 mg
L-Theanine (over the counter, 200mg)
Ropinirole 3mg
Lisinopril 40mg
Melatonin (over the counter, 20mg)
Benadryl (over the counter, 2 pills)
The “Over the Counter” medications are to help me feel tired faster so that I can fall asleep. If I accidently forget to take the Tramadol, then I get very tired, and the leg torture begins. If I am really tired and up late without taking any of my medication, then both legs will do the shock/seizure thing and cause me to literally double up in pain as if I were being tasered. After a minute or two it happens again and again and again. Then when I am able to take my pain killer, it takes almost 4 hours to alleviate the torture.
I would absolutely love to find a cure or way for me to be able to fall asleep each night free from the worry of possibly being tortured for hours before being able to sleep.
I have leg jerks 2 feet off the ground after I eat lunch or dinner. Crap on this feeling news. I have myoclonic jerks not feelings. So, you say PLMD happens only in sleep. Am I different. Help some one. I start jerks as I lay awake in the morning and when starting to get drowsy after meals. Nor Restless leg feeling but physicalo cerebral motor one cell firing jerks. Like a cat Not in sleep!!!help someone..Please
PLMD starts whenever I get tired and sit down to relax, unless I ingest MSG, and then it starts within 7 minutes of the meal.
Over time, I have learned that I have specific dietary triggers: MSG, chocolate, and caffeine. Getting off these items has lessened the severity and I can manage the symptoms by taking the Nuepro patch.
It sounds like yours may also be triggered by diet. The problem is that MSG or a form of MSG is found in many processed food. Almost all fried chicken from fast food places has MSG. Of course, a lot of Chinese food contains MSG, and my experience in asking these restaurants if they use it usually results in bad information as they might not add MSG but they may use prepared sauces and soy sauces that contain MSG. Recently, I learned that the Whataburger hamburger contains MSG. Many Campbell's soup products contain MSG.
PLMD starts whenever I get tired and sit down to relax, unless I ingest MSG, and then it starts within 7 minutes of the meal.
Over time, I have learned that I have specific dietary triggers: MSG, chocolate, and caffeine. Getting off these items has lessened the severity and I can manage the symptoms by taking the Nuepro patch.
It sounds like yours may also be triggered by diet. The problem is that MSG or a form of MSG is found in many processed food. Almost all fried chicken from fast food places has MSG. Of course, a lot of Chinese food contains MSG, and my experience in asking these restaurants if they use it usually results in bad information as they might not add MSG but they may use prepared sauces and soy sauces that contain MSG. Recently, I learned that the Whataburger hamburger contains MSG. Many Campbell's soup products contain MSG.
Hi @fretjock, Welcome to Connect. I don't have PLMD but do try to avoid processed foods. Thanks for sharing the specific triggers you have found that increase the severity of your symptoms. I found an interesting study on the topic that I thought I would share if you haven't already seen it.
If that’s like RLS (Restless leg syndrome) I’m your man, I am now 88 and suffered RLS for a good part of my life.
It was not until last year that the VA was able to give me relief using “permapaxole” another wonder drug.
If that’s like RLS (Restless leg syndrome) I’m your man, I am now 88 and suffered RLS for a good part of my life.
It was not until last year that the VA was able to give me relief using “permapaxole” another wonder drug.
I have leg jerks 2 feet off the ground after I eat lunch or dinner. Crap on this feeling news. I have myoclonic jerks not feelings. So, you say PLMD happens only in sleep. Am I different. Help some one. I start jerks as I lay awake in the morning and when starting to get drowsy after meals. Nor Restless leg feeling but physicalo cerebral motor one cell firing jerks. Like a cat Not in sleep!!!help someone..Please
@bill54321, I had exactly the same symptoms in 2010. Since I have celiac, I was referred to one of the most well-known celiac doctors.
He told me that my symptoms were caused by gluten triggering a process that stripped myelin off the nerves, allowing signals to jump from one nerve to another. Once I found and eliminated the hidden gluten in my diet, the myelin should build back up, causing symptoms to end. Resolution of symptoms should be on 6-8 months.
Amazingly, eight months after I eliminated the hidden gluten the myoclonic movements stopped. They have not returned.
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I have seen multiple doctors regarding this problem. Many jump straight to a diagnosis of Restless Leg Syndrome (RLS). However, the standard description of RLS is a feeling of bugs crawling on your legs or a restless ache that only goes away if you move your legs. I have done extensive research online and viewed others with RLS and have yet to find a case of it that fits my symptoms. Also, it seems people suffering from RLS will be woken up after falling asleep by the sensations in their legs. However, once I fall asleep, I am good for the rest of the night. I can even wake up and go to the bathroom and go back to bed and fall asleep with no problems.
In my case, I will feel fine, tired, and ready to fall asleep. Just as I doze off, one leg (usually my left thigh) will suddenly contract. The feeling is like a small or moderate electrical jolt and my leg will jerk or contract by itself. The shock and movement always startles me and I am no longer asleep. This happens every time I start to doze off. It is like I have a sadistic torturer who waits for me to doze off, only to zap me back to consciousness. Taking sleeping aides to help me sleep only makes it worse. Instead of being jolted awake 4 times in an hour, it would be 4 times in 10 min.
Pain Killers alone used to work but then at some point around 2016 or 2017 it stopped working unless I increased the dosage. Since I was worried that just doing that could cause a dependency issue, I went to a Neurologist. At first, he wanted to put me on Parkinson’s medication, but I pointed out that there was time period where my legs were exceptionally bad, and those medications worked only for a few months then I would have the twitches and painful contractions during the day. We compromised with a combination of drugs consisting of ropinirole and a temazepam sleeping pill, no pain killers. The only problem with this arrangement was that I had to “Hit the Window” when I try to fall asleep. If I go too early, the leg twitches persist and never allow me to sleep. If I try to fall asleep too late, the sleeping pill fails to put me under before the leg starts twitching. On those nights, I would have to take a pain killer and wait 2 or more hours before I would be able to fall asleep.
I struggled with this arrangement until I was diagnosed with Bladder Cancer. While doing research on the possible causes, I found an article that linked Bladder Cancer to sleeping pills. It stated that a person who takes more than 124 sleeping pills a year increased their chances of getting Bladder Cancer by 34%. I was taking it for 2.5 years every day. I stopped taking it and we then switched to Tramadol. My Father also was taking a nightly sleeping pill and I warned him about the link, and he ignored me. One year later, he too got Bladder Cancer.
I have tried the following:
1. Exercise
2. Warm/Hot bath or Shower
3. Meditation (sound and light)
4. Magnesium
5. Calcium
6. Potassium
7. B1 and other Vitamins
8. Booze (makes it worse)
9. Medical Marijuana (Dosage required to fall asleep kept me down for too long and prevented REM sleep)
10. Bar of soap at my feet (when you are desperate enough, you will try anything)
11. Even tried living off of only Juicing for 6 weeks, lost weight but problem still persisted with no change in severity
Upon extensive research I feel that instead of having RLS, I instead have an extreme or atypical case of PLMD, Periodic Limb Movement Disorder. I base this on the time period where I was relying on the sleeping pills to hit the window to fall asleep. While asleep, I was told that my arms and legs would jerk violently, almost like a mini seizure, but I did not wake up. Now that I am no longer taking the sleeping pills and take Tramadol instead, it seems that my limbs no longer jerk or twitch while I am sleeping. As far as I can tell since I sleep alone. I have occasionally recorded myself sleeping to see if the twitch/seizure still happens but so far, I have been lucky.
I have read online that one theory for RLS is a drop in Dopamine levels in the brain at the moment a person transitions from wakefulness to sleep. I also noted that a study done indicated that drug addicts (does not apply to me) are more likely to experience RLS. Also, people who are Scandinavian descent tend to get it more than average as they get older. With that I “Think” that for whatever reason or cause, I have a lower dopamine level and as I drift off to sleep, it drops too far below some threshold which causes that extreme PLMD reaction. By taking the tramadol, it raises my dopamine levels high enough that when I drift off, it does not drop far enough to cause the Hypnic Jerk.
For some reason I seem to have a high tolerance to various drugs, and it takes a lot longer for many of them to “Kick in” so to speak. Gaining weight did not help matters much either. As it stands now, this is what I need to do/take in order to fall asleep each night.
Tramadol 250 mg (takes 2 hours to kick in, then works for 4-5 hours)
Once the Tramadol takes effect, I can take my “Night Pills”.
Gabapentin 1200 mg
L-Theanine (over the counter, 200mg)
Ropinirole 3mg
Lisinopril 40mg
Melatonin (over the counter, 20mg)
Benadryl (over the counter, 2 pills)
The “Over the Counter” medications are to help me feel tired faster so that I can fall asleep. If I accidently forget to take the Tramadol, then I get very tired, and the leg torture begins. If I am really tired and up late without taking any of my medication, then both legs will do the shock/seizure thing and cause me to literally double up in pain as if I were being tasered. After a minute or two it happens again and again and again. Then when I am able to take my pain killer, it takes almost 4 hours to alleviate the torture.
I would absolutely love to find a cure or way for me to be able to fall asleep each night free from the worry of possibly being tortured for hours before being able to sleep.
Hello @tarawavet64, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience with Periodic Limb Movement Disorder. It is good to see that you have done a lot of research on the condition. You may have already seen these but I thought I would share them again just in case you haven't seen them.
National Sleep Foundation – Periodic Limb Movement Disorder (PLMD)
— https://www.sleepfoundation.org/articles/periodic-limb-movements-disorder
SleepEducation.org
— http://sleepeducation.org/sleep-disorders-by-category/sleep-movement-disorders/periodic-limb-movements/overview-facts
Medical News Today – Periodic limb movement disorder: Symptoms and treatment
— https://www.medicalnewstoday.com/articles/317911.php
@sussan, @marye2, @lorettat, @engelee and @bill54321 may also have some thoughts or suggestions to share with you.
Have you considered seeking help from a major teaching hospital or health facility like the Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
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1 ReactionThank you for the links. I have seen them but didn't know about a Mayo Clinic in Phoenix. I just sent them a request for a consult.
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2 ReactionsI had a severe case of this in 2019. The involuntary jerking movements started in my sleep with one or two leg movements, then gradually worsened to the point that I was having up to about 200 of these movements a night. They are like electric shock, sudden jolts. I also had the movements while awake--usually when tired-- sometimes with involuntary vocalization--and my spouse, unbeknownst to me at the time, took a video. (Video taken in ER, where I'd been advised to go as one of my docs suggested it was a medication side effect.) I saw a neurologist who was not much help and insisted that this was RLS. ( I do not have RLS or sleep apnea.) Several medications were prescribed, none helped. I consulted another neurologist (much more knowledgable), who ordered a sleep study, which showed nothing, even though I was aware of having movements that night. My next step was going to be seeing a physician at Mayo. Then the pandemic hit. In 2020, the jerks gradually lessened so that I now have only about two at a time when sleepy, before bed, and one or two nights a week when they awaken me in the night, anywhere from 1 to 10 movements/night. Four neurologists, 3 in the U.S. and one in China, saw the video and none had ever seen anything like it before. "Knee flexion" is mentioned somewhere. Is this what I have? My feet come way off the floor when siting/awake, and that's the same movement at night--what you'd experience if you quickly tightened your abdominal muscles and lifted your knees toward your chest. I would like to know who at Mayo might like to see this video and/or be interested in seeing me as a patient, even though the jerks are much less problematic at this time. Also, is anyone in the U.S. researching this disorder? I would like to offer my video. I would add it here but don't know how.
Yes! Electric jolts. I forgot to describe it that way. Same! Will add to my post.
PLMD starts whenever I get tired and sit down to relax, unless I ingest MSG, and then it starts within 7 minutes of the meal.
Over time, I have learned that I have specific dietary triggers: MSG, chocolate, and caffeine. Getting off these items has lessened the severity and I can manage the symptoms by taking the Nuepro patch.
It sounds like yours may also be triggered by diet. The problem is that MSG or a form of MSG is found in many processed food. Almost all fried chicken from fast food places has MSG. Of course, a lot of Chinese food contains MSG, and my experience in asking these restaurants if they use it usually results in bad information as they might not add MSG but they may use prepared sauces and soy sauces that contain MSG. Recently, I learned that the Whataburger hamburger contains MSG. Many Campbell's soup products contain MSG.
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3 ReactionsHi @fretjock, Welcome to Connect. I don't have PLMD but do try to avoid processed foods. Thanks for sharing the specific triggers you have found that increase the severity of your symptoms. I found an interesting study on the topic that I thought I would share if you haven't already seen it.
-- Extensive use of monosodium glutamate: A threat to public health?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5938543/.
How long have you had PLMD?
If that’s like RLS (Restless leg syndrome) I’m your man, I am now 88 and suffered RLS for a good part of my life.
It was not until last year that the VA was able to give me relief using “permapaxole” another wonder drug.
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1 ReactionI hope it helps.
RLS can drive you crazy!
@bill54321, I had exactly the same symptoms in 2010. Since I have celiac, I was referred to one of the most well-known celiac doctors.
He told me that my symptoms were caused by gluten triggering a process that stripped myelin off the nerves, allowing signals to jump from one nerve to another. Once I found and eliminated the hidden gluten in my diet, the myelin should build back up, causing symptoms to end. Resolution of symptoms should be on 6-8 months.
Amazingly, eight months after I eliminated the hidden gluten the myoclonic movements stopped. They have not returned.