Restless Leg Syndrome

@suecreader Indeed, you are correct. There is no "fits all" solution to this issue. Interestingly, I found out about the Vit D connection quite by accident. My sister developed RLS and separate from that, had a physical and a blood test and was called back to the MD's office because her Vit D was determined to be low. She had an injection and her RLS ceased to be a problem for her. On her next visit she mentioned it to the PA who told her the RLS diminished because of the Vit D. The MD's seem to just prescribe medications and don't look at anecdotal evidence of what works. Anyway, I tried Vit D, increasing from 1000 IU to 4000 IU and that did the trick. The second sister who developed RLS immediately went to Vit D at 4000 IU and her problem was resolved. This might just work for the RLS that particularly affects my family. There may be many causes of RLS.

So, your sisters were helped by Vitamin D too? You're so right about the anecdotal evidence not being considered - I think doctors stick to the adage "it's not scientifically based evidence." that's why your post is so valuable . . . . . just like the thalamus connection whereby it doesn't work for me to do the CBT approach recommended by Rochester (for people with insomnia--and RLS is NOT the same as insomnia ....as I keep telling people who have the latter). In CBT, people are supposed to have quiet time before bed, no blue lights from TV or other devices, if unable to sleep, get up and do something boring and not at all stimulating. However, I've tried this approach for six months, and it never worked as my RLS just got worse if I tried to read a dull or dry book or do a crossword. With the thalamus connection, the representative from Relaxis indicated that the thalamus needs to stay busy -- so, after walking two-three hours and being even more exhausted, sometimes laying down (if my RLS let me) and watching TV allowed me to drift off to sleep. He also recommended listening to something that would be engaging like rock music via headphones . . . . that has worked for some people as told by him (again anecdotal evidence). Thanks for more detail about your story . . . I already take 2000 mg of Vit D but will increase that if Neupro stops working. I don't like to add too much at one time since then it is hard to tell which approach is the one that is most successful.

@suecreader I understand your reluctance to muddy the waters with multiple approaches to control RLS. If you find Neupro stops working, try doubling your Vit D. I found immediate relieve that very night that I started that regimen. Take it at bedtime. I hope you find relief.

I too did the CBT training for insomnia, unconnected to the RLS. I really did practice it for about 6 months but it just wasn't working. I have found using a Kindle for reading, with the light on the kindle at about half power and the room lights off makes me really, really sleepy. Not that I can always fall asleep when this happens but maybe it is helping me not be wide awake. I cannot imagine having headphones on, playing rock music would ever help me fall asleep. I do best in total quiet and often wear earplugs as well.

I am so tempted to try the mouth device that you can get through some dental offices! Lugging a C-Pap machine through an airport with a suitcase, purse, and a carryon bag is for the birds. Ha!

Im going to chime in here on RLS For our bodies to respond without drugs its important to take Vit D3if your low in it ,have lab work done but along with this calcium and magnesium are needed as they all complement each other But ever one is different and responds to perscribed medicine differently.

@lioness, I faithfully take Vitamin D, Calcium, and Magnesium. Every day. Very important, along with a vitamin tablet. Happy holidays!

@mamacita Good for you thats needed we lose alot as we age drat it Merry Christmas Happy New Year to you also.

I have RLS. Sometimes when it happens, I have to get up, walk around, have a snack, it’s the distraction that helps I think. Drinking tonic water also helped as it contains Quinine. I’m on Clonazepam and sometimes take an extra dose if symptoms are bad. Only happens at night and only rarely now. I saw Neuro for headaches and falling down but not RLS. Headaches and falling were medication related. Hope this helps.

Thanks for sharing your experiences with restless legs. I know that while it is good to have a firm diagnosis about your condition (at least it was for me), it is also disconcerting to not be able to sit still or fall asleep. In fact, in my case, my symptoms have progressed & worsened over the years & it interferes with my life significantly. I have struggled with mine for about the last 30 years; but, I hasten to add that at first the symptoms were minor and only occurred when I was tired and in a place where I couldn’t go to sleep (like a meeting, concert, had company, etc.). So, while uncomfortable, they did not occur daily. My restless legs manifest a bit different than yours, in that as they have worsened over time, right now the feeling is akin to being shot full of adrenaline and/or almost as if I’ve been electrified from my inner core all the way outward to my outer limbs. So, my whole body Is then unable to sit or lay still...I was unable to sit in a car for longer
than 5-10 min., be in a meeting, etc. Presently, without medication, I’m unable to sleep at night, and am only able to falll asleep at about 5:00 am for an hour or two & rest of night I am walking, walking & even jogging or running since the symptoms are so severe, I try any & everything to get some relief.
I know this all sounds so dire, but it hasn’t been just suffering all those years. What I’ve found is that different medications work for a while, and they do alleviate the symptoms. The two medications that were most successful for me in the past are: Gabapentin & Requip. I’ve also tried extra magnesium, B vitamins, some sleeping medications, & like you Klonopin,but also Ativan, & Compazine. Requip worked for nine years, but then I started needing to increase the dosage. At first it was every three months but over the course of a year it became every two weeks. Each time I increased I had pretty negative side effects, which were severe headaches, nausea, vomiting,dizziness, and sometimes fainting. Once those symptoms started to decrease a bit, so did the effectiveness of the drug. So it became a vicious cycle of increasing dosage and feeling horrible the next day. Then, I sought advice from Mayo Sleep Center. They gave me lots of helpful information including the low iron connection with the restless legs. I too am now taking iron to alleviate that, however, even when my iron is higher and in the range it should be, I still have restless legs. I also learned that the medication I was taking (Celebrex)for depression aggravate my restless legs, so at my Sleep Center doctor’s recommendation, I switched to Wellbutrin, which is reported to be the only one that seems to not do that. I also take a small amount of Klonopin in the morning, .25 mg ( I cut a .5 mg tablet in half since .25 is not a dosage that it normally comes in. ). I also have fibromyalgia, and also saw the doctors at Mayo in that department also. I learned that for me, I am sensitive to many medications, and that tends to be somewhat the norm for people with Fibro. Many medications such as the anti-anxiety ones I listed, sleeping & pain meds, and even some antibiotics will make my restless legs much, much worse. The worst one I have ever taken is Trazodone, and after taking one pill, I was up for literally two days straight. I’ve also found when I list those drugs as ones that I’m sensitive to on forms from medical facilities (in the space for allergies & sensitivities), not all doctors, nurses or hospitals take it seriously. I’ve run into this when I’ve had surgeries. So, I’ve needed to be firm about what I can & cannot take. Initially, at Mayo, they gave me Gabapentin, which worked for a while, but not to the extent that it completely eliminated my symptoms at night. So the dosage was increased over a period of 3 to 6 months. At one point I was taking 1800 mg, but it affected my memory and my thinking was so fuzzy that we stopped that. I would sometimes even forget what people have told me in the middle of conversations with them.
Currently, since the restless legs can begin for me as early as three or 4:00 PM, I take one 400 milligram tablet of gabapentin at 4:00 pm & that keeps them from starting the jitteriness. I’ve also just started taking a new medication called Neupro which is a transdermal patch. I’ve been taking it for about 2 1/2 months now and I’m able to sleep 4 to 6 hours per night, which is wonderful. I also take 1-2 Gabapentin @100 mg each if I waken in night. This is the most I’ve slept in five years.
I also have learned I need to stop using any caffeine or any alcohol after 3:00 pm....if I have any at all, it doesn’t necessarily start restlessness right away, but by 6:00 or 7:00, it becomes pretty severe & lasts through the night.
This narrative got really long, but I wanted to share some symptoms with you in the event that yours worsen or you have similar ones. As you know, not everyone has the same reactions & symptoms, so perhaps yours won’t be the same as mine...but maybe some of same meds will work. I also wanted to make sure to convey a sense of hope that there is a medication that can work for you, but sometimes it takes trying different things to find it. Also, when I sleep more hours nightly, I feel like a different woman the next day. Not having enough sleep affects both physical and emotional well-being. So, If you don’t get enough sleep and feel unable to cope with life very well the next day, or your body aches & you have no energy, there is a reason for that.
Lastly, I believe that my restless legs were inherited, since my father had symptoms also. However, he died at the age of 60 years old. That was in 1979, and at that time, no one had recognized restless legs as a “real condition.” I remember him pacing the floor at night, especially during harvest season when he was driving tractor and a combine until late at night. So, I think his symptoms worsened when he was overtired also. I also think, although that’s been so long ago, and she didn’t talk about it much, that my paternal grandmother also had restless legs. She didn’t call them restless legs, but she talked about walking the floor and not being able to sleep at night.
I think this is a good forum to share our symptoms, but also a sense of hope with what has worked and Not worked for each of us. I know that for me, many people (including the first neurologist I saw in the 1990s) who have sleep apnea or insomnia have tried to compare their symptoms to mine as being are similar. And, they think believe if I used s CPAP machine, I’d do better. However their leg movements while sleeping at night are not the same. I’ve had a total of four hours sleep studies over the past 10 to 15 years and none of them have indicated that my oxygen levels dropped like those with sleep apnea. So, sometimes people will sympathize with you and offer what has worked for them as the cure all for you also, but it isn’t always the case. While I appreciate their concern, I also am sometimes frustrated by their belief that this is the answer for me also. Restless legs are so much more complicated than that easy answer.
I hope this helps....If any of my story, long as it is, raises questions about your situation and how you’re feeling I’ll be glad to post anything that might help you. Good luck.

Thanks for sharing your experiences with RLS....getting up & walking will help, & so will a snack. Sometimes those help for awhile but it doesn’t always last. Drinking tonic water has helped so many people, but it hasn’t me. Interesting how different we all are isn’t it? I didn’t know About the connection between Falling and Neupro....thank you for sharing that info. I heard about that medicine from someone else who had success, so I asked my doctor about it. I know that it also has a side effect of needing to take more to get the same results after a period of time. That happened with Requip for me so I am holding my breath that it doesn’t happen with this medication. So far I’ve experienced some dizziness at the beginning, but I haven’t had any incidents of falling. I’m glad to know about it though So that if it occurs I’ll know what the cause is. Again thank you very much.