TN and Restless Legs Syndrome (RLS)

Is there a connection between TN and RLS?

I have had RLS for a few years and I take prescription medication and Magnesium for it. Sometimes it gets out of control even though I take my meds. I just finally realized (I think it's because my brain is working better now that so many meds are out of my system) that light touches on my legs, such as the breeze from the ceiling fan, will make the twitching on my legs and the crawling feeling go out of control. This reminded me of how a light touch or breeze on my face would trigger TN pain for me.

Is it just a coincidence or is it related?

How many have RLS with their TN?

BTW: My RLS was almost gone while I was on Tegretol. I did not notice this until after I stopped it.

RLS…yes…I have had symptoms for about 5 years ,

TN was sudden onset in 2010… But now realize may have had the biology long before trigger.

I’ve only used small dose of clonazapam for RLS for these 5 years…def. neurological and also progressive… Don’t know about a connection

I've been on Mirapex for it for about 8 or 9 years. I thought that it was a side effect from a medication I was taking back then but I've been off of the medicine for about 5 years and the RLS is still there. It seems to be getting worse. Interesting that Clonazapam works. If I take Valium (Diazepam) at any point in the day that is not right before bed I am guaranteed to get a bad RLS attack. Do you take it as needed or every night? I have to take my Mirapex every night.

I'd think that RLS is a lot more common than TN, then again I haven't seen any statistics. I got RLS when I was withrawing from Lyrica and antidepressants - was told that this happens with both meds. Now that I take antidepressants again and occassionally Tramadol for pain I get the twitches and heavy feeling in my legs once again...it sucks but it's still a minor thing compared to my ATN pain.

RLS is definitely nothing compared to TN and ATN pain. I don’t even consider it pain. It’s more of a really annoying and frustrating condition that can make the few hours of good sleep we get nearly impossible to enjoy or have. I’m just curious if they have anything to do with each other. Or how many people that have TN and/or ATN get RLS too.

I've had RLS and now you mention it since I have been on anticonvulsants I haven't had it at all. Interesting!

I take the clonazepam every night -- if on vacation, or have a night out drinking, don't/can't take it as diligently and pay the price! Airplanes make mine worse. That's the only time it happens during the day. and that's only twice a year!

I have had RLS when cut right down or off of meds (Pregabalin & amitriptyline). Thought it was a symptom of the menopause which I have been going through as well!!!

Here's my connection...I have an autoimmune disorder with no name...the doctor calls it...ready for this....immune-mediated neuropathy, ganglionitis with small fiber neuropathy and secondary sjogrens!! Hows that for a mouthful. In translation, I have a lack of antibodies in my blood that keep moisture in my nerves, muscles and so forth. I need IVIG treatment which I am waiting on (expensive as all hell)

When I was on tegretol I could not walk, I had not only restless leg, but TN, and pain running down my legs that If I stood up it felt like nails were being driven in my legs, then my arms got into the act as well.

I wouldnt think the people that have the leg pain have what I have, but I would suggest that maybe there is something under the surface causing this and its also causing the TN. Just my experience.

The good news, is my prognosis is excellent and the MVD did reduce my pain to only about 5% now

Wendy

YES! Flying and alcohol definitely make it worse. I always need to sit on an aisle seat so that I can stand up and stretch my legs constantly...or so that I can let my legs twitch into the corridor without kicking the seat in front of me.

Kc Dancer Kc said:

I take the clonazepam every night -- if on vacation, or have a night out drinking, don't/can't take it as diligently and pay the price! Airplanes make mine worse. That's the only time it happens during the day. and that's only twice a year!

Isn't it fun when the arms decide to join the twitching party too? My poor husband has been kicked and punched so many times by me. I guess at that point it becomes more like Restless Extremities Syndrome.

I also have IgA and IgG issues. Interesting.

crashgirl said:

Here's my connection...I have an autoimmune disorder with no name...the doctor calls it...ready for this....immune-mediated neuropathy, ganglionitis with small fiber neuropathy and secondary sjogrens!! Hows that for a mouthful. In translation, I have a lack of antibodies in my blood that keep moisture in my nerves, muscles and so forth. I need IVIG treatment which I am waiting on (expensive as all hell)

When I was on tegretol I could not walk, I had not only restless leg, but TN, and pain running down my legs that If I stood up it felt like nails were being driven in my legs, then my arms got into the act as well.

I wouldnt think the people that have the leg pain have what I have, but I would suggest that maybe there is something under the surface causing this and its also causing the TN. Just my experience.

The good news, is my prognosis is excellent and the MVD did reduce my pain to only about 5% now

Wendy

Yep, have had RLS for years now. I still had it when I was on tegretol, but have noticed that its been worse since I’ve been off my meds following MVD, particularly over the last month or so.

wow, that it quite a diagnosis!! I haven't been on because I've been in severe pain (palate of mouth is on fire) and got a diagnosis of Glossopharyngeal Neuralgia after an MRI at Cleveland Clinic in Weston, FL. I like you have a lot of autoimmune components including secondary sjogrens and they want me to have an MVD which I'm sure I'll have to get rid of this horrendous pain but I'm scared to death!! Don't know why I have such a hard time trusting Dr.'s. Who did your MVD?? Thanks for any help!! Glad you finally got a diagnosis and that you are having low pain. susan

crashgirl said:

Here's my connection...I have an autoimmune disorder with no name...the doctor calls it...ready for this....immune-mediated neuropathy, ganglionitis with small fiber neuropathy and secondary sjogrens!! Hows that for a mouthful. In translation, I have a lack of antibodies in my blood that keep moisture in my nerves, muscles and so forth. I need IVIG treatment which I am waiting on (expensive as all hell)

When I was on tegretol I could not walk, I had not only restless leg, but TN, and pain running down my legs that If I stood up it felt like nails were being driven in my legs, then my arms got into the act as well.

I wouldnt think the people that have the leg pain have what I have, but I would suggest that maybe there is something under the surface causing this and its also causing the TN. Just my experience.

The good news, is my prognosis is excellent and the MVD did reduce my pain to only about 5% now

Wendy

After reading on here 2 years Susan -- I think you should look at Dr. Casey in Michigan (longest MVD still practicing)

And

Dr. Lim at John Hopkins in Baltimore

They know their stuff

We also have a doctors tab above for recommendations --- many of us had to travel to get the best.

sorry I am getting back to you so late, I had the IVIG treatment and landed in the hospital with an allergic reaction!!

My MVD was done by Dr. Brown in New York, he is wonderful!!! feel free to message me with any questions

Wendy

susan said:

wow, that it quite a diagnosis!! I haven't been on because I've been in severe pain (palate of mouth is on fire) and got a diagnosis of Glossopharyngeal Neuralgia after an MRI at Cleveland Clinic in Weston, FL. I like you have a lot of autoimmune components including secondary sjogrens and they want me to have an MVD which I'm sure I'll have to get rid of this horrendous pain but I'm scared to death!! Don't know why I have such a hard time trusting Dr.'s. Who did your MVD?? Thanks for any help!! Glad you finally got a diagnosis and that you are having low pain. susan

crashgirl said:

Here's my connection...I have an autoimmune disorder with no name...the doctor calls it...ready for this....immune-mediated neuropathy, ganglionitis with small fiber neuropathy and secondary sjogrens!! Hows that for a mouthful. In translation, I have a lack of antibodies in my blood that keep moisture in my nerves, muscles and so forth. I need IVIG treatment which I am waiting on (expensive as all hell)

When I was on tegretol I could not walk, I had not only restless leg, but TN, and pain running down my legs that If I stood up it felt like nails were being driven in my legs, then my arms got into the act as well.

I wouldnt think the people that have the leg pain have what I have, but I would suggest that maybe there is something under the surface causing this and its also causing the TN. Just my experience.

The good news, is my prognosis is excellent and the MVD did reduce my pain to only about 5% now

Wendy

This may read as odd to some, but in a magazine recently I read Dr article where he blamed lack of water as a common cause of RLS. Apparently some of us worry about getting up in the night for bathroom visits and cut back our fluids from 18.00 onwards. This, he says is what is causing the problem, our joints become dehydrated. Sooooooooooooo, I started drinking a large glass of water(tea/coffee/wine/beer won't do it!) at about 20.00 and now RLS is gone. I know it won't work for everyone but if it helps one person....................

I heard that as well, and I am guilty...I hate water, and have a gag reflex if I even take a sip....but I was also told that even the coffee I drink and ice tea counts.....but I do think water works better...I also heard ( not sure if true) that a low level of magnesium can cause it as well

Jackie said:

This may read as odd to some, but in a magazine recently I read Dr article where he blamed lack of water as a common cause of RLS. Apparently some of us worry about getting up in the night for bathroom visits and cut back our fluids from 18.00 onwards. This, he says is what is causing the problem, our joints become dehydrated. Sooooooooooooo, I started drinking a large glass of water(tea/coffee/wine/beer won't do it!) at about 20.00 and now RLS is gone. I know it won't work for everyone but if it helps one person....................

I've also heard (and know from experience!) that not hydrating enough can make it worse. When I get a lot of vomiting and don't get enough fluids I get it really bad. I drink water all day and night even if it means waking up 2-3 times at night to use the restroom. My "catch 22" is that I have to take diuretics for pseudotumor cerebri so I really need to make sure I drink enough.

Also, magnesium is a big factor. For a while I was able to lower the Mirapex (even skip it a couple of nights) taking 1,000 mg of Magnesium. Only problem is magnesium works like a laxative. I can only take about 250 mg w/o it causing a huge bowel difference.



Jackie said:

This may read as odd to some, but in a magazine recently I read Dr article where he blamed lack of water as a common cause of RLS. Apparently some of us worry about getting up in the night for bathroom visits and cut back our fluids from 18.00 onwards. This, he says is what is causing the problem, our joints become dehydrated. Sooooooooooooo, I started drinking a large glass of water(tea/coffee/wine/beer won't do it!) at about 20.00 and now RLS is gone. I know it won't work for everyone but if it helps one person....................

Interesting! I love solutions that do not involve medications whenever possible. Recently I have been taking a little magnesium before bed (have to take it an hour or two before my bedtime dose of Gabapentin). Will have to take a little extra water at this time as I know I tend to run a little dehydrated.