Help! Restless legs!

[EddieB]

Apparently the Benadryl was causing it,

Interesting. Mirtazapine known for causing RL. I had some occasional RL prior to taking, but it made it much worse. It has the side effect of being a strong H1 antihistamine.

 

[Frunobulax]

I'm beginning to maybe think the same thing. Have you found any more info or learned more about this theory? Everything I read online says that low stomach acid & RLS is that it prevents B12, iron, & other mineral absorption, causing deficiencies linked to RLS. Low stomach acid can allow SIBO to develop too. While these mechanisms likely can cause RLS, I wonder if stomach acid has a more direct effect on RLS.

I elaborated on that in this this thread.
I don't think there is a direct relation between stomach acid and RLS, but stomach acid is a catalyst for many other things. It's direct in this sense: When I was taking PPIs, I would take betaine HCL for just a few days, which always gave me less RLS and more energy. But after 2-3 days the heartburn became intolerable.

Theroretically, it may be an issue for people with salt regulation problems (very common if you have metabolic syndrome). We need salt to form stomach acid, and if we are low on salt our kidneys start to conserve it, which in turn uses potassium. So stomach acid regulation issues could in theory lead to salt or potassium deficiencies.

Apparently the Benadryl was causing it, so I stopped Benadryl and haven't had restless legs since. But... NOW I CAN'T SLEEP.

Benadryl is well known to cause RLS because it blocks dopamine receptors in the brain. There are other sedating drugs out there that don't have this effect. For example trazodone is an antidepressant that helps some people with sleep, works well with RLS and is not as addictive as other drugs like benzos. But of course you'll need to discuss this with your doctor...
I found that a mixture of Gaba (pure powder, a teaspoon 30min before going to bed), 5-HTP (200mg to 400mg, 2-3h before bedtime) and melatonin (2mg, with the 5-HTP) helps with my insomnia.

 

[EddieB]

In tapering off the mirtazapine, my symptoms have become much worse. In particular the throat pain/globus/lump sensation. I’ve had this in the past, but not to this severity. The restless leg/twitching, which I expected to go away, has continued, despite the reduced dose.

At the present dose of approx 1.5 mg of mirtazapine, I can’t see it being effective as anything but an antihistamine. Can’t tell if it’s helping/hurting/makes no difference.

Also, trying to add a little salt in daily, to see if it has any effect on the restless leg....

 

[EddieB]

I found that a mixture of Gaba (pure powder, a teaspoon 30min before going to bed), 5-HTP (200mg to 400mg, 2-3h before bedtime) and melatonin (2mg, with the 5-HTP) helps with my insomnia.

I would think the 5htp would tear up your stomach?

 

[lenora]

I don't know if this is for you, but I've used a brush to help manage restless leg syndrome. I have a surgical scrub brush (they're sometimes marketed as sensory brushes), and I use it to gently brush my legs when they're bursting with energy. This may be overstimulating for some people, but for me this stimulation actually helps my legs calm down.

Hello @RebeccaRe - ....Yes, I've thought about gently rubbing something against my legs. Do any of you get them for 4-5 nights and are then OK for a short time.

I have a 'script from my neurologist for RLS (he has them also, so it's good to have someone who also suffers). It's a last resort measure, but I've been suffering from these babies for way over 30 yrs. Nothing works, although getting out of bed and having a different position seems to help. You hear so many theories, but that's one of the great unknowsn of modern medicine...there is no reason that has ever been found. Good luck and I'm having good luck with the medicine. I generally know about 1:30 p.m. or so what kind of night it's going to be. If it's bad, then I'll take a pill at the onset. That helps cut down on the medicine taken. Yours, Lenora

 

[EddieB]

Do any of you get them for 4-5 nights and are then OK for a short time.

Hi Lenora,
Yes, it does go away at times. I thought when I did the iron supplement patches it went away, but then came back. I was certain by reducing the antidepressant dose would make a difference but so far hasn’t. It had made it much worse when I started it.

My RL seems to be a bit different, in that it does it’s “thing” during the day, usually in the evening, but doesn’t usually bother sleeping.

You mentioned before about being low in electrolytes. Do you see any connection there? I am trying to add a little salt (Himalayan) to see if it helps.

If I may ask, what medication were you prescribed? The doctors want me to try gabapentin for pain, it’s supposed to help with RL as well. My wife takes it every night an seems to do fine.

 

[lenora]

Hi Lenora,
Yes, it does go away at times. I thought when I did the iron supplement patches it went away, but then came back. I was certain by reducing the antidepressant dose would make a difference but so far hasn’t. It had made it much worse when I started it.

My RL seems to be a bit different, in that it does it’s “thing” during the day, usually in the evening, but doesn’t usually bother sleeping.

You mentioned before about being low in electrolytes. Do you see any connection there? I am trying to add a little salt (Himalayan) to see if it helps.

Hi Eddie,

Does Hilmalayan Salt have iodine in it? all other electrolytes are supposed to be in balance, that means, mg., calcium, postassium, and cholide...at least they're the key ones. Lack of iodine almost caused my death in Jan. I had been told to cut out all sale because of my congestive heart failure. Of course, I blame myself and wonder why I didn't think it through. I'll have to ask my doctors about iron as I have high blood pressure and am on plavix & baby aspirin (for blood thinning). For now my husband is giving me a small iron supplement every other day until I find out. I have 5 stents, so my heart is a major consideration. I have anemia on top of my ME and wouldn't know the difference, as you can imagine.

Just watch your iodine intake. Good old Morton's Sale is probably good enough, but then we're never sure of anything are we? Gatorade has good electrolytes, Oh, by the way, too much water is also quite dangerous. I was told no more than 32 ozs./day, and yet I often have close to 60 obs. Living in a hot climate probably doesn't help. I'm out on the back porch for much of the day until about 3:30 p.m. at which time my body does a pretty poor job of supporting me. No phone calls...nothing after that time b/c I just can't do it. I hope you're better than that. I'm OK once I'm in bed, but tend to wander around a lot. Can't concentrate on much...rather annoying. Best of luck. If I can help you, do contact me. Yours, Lenora.

 

[lenora]

Hi Eddie.....A couple of things: I forgot that the drug my doctor, a neurologist whose own wife has the worst kind of Parkinson's Disease, prescribed is Prampexole Dijudrochoride 0.25 mg. Instructions: Take 1-2 tabs at 2:00 p.m. (I've moved that to l:30 p.m. b/c that's when the symptoms generally begin) & 1-2 tabs at 7:00 p.m. I don't have to take that many if I catch it in the first go around. That's a fairly low dose even though it doen't sound like it. Also, I take 5 mg. of a pain med before bedtime and that may help the pain center of the brain. Really, who knows?

I took the first rounds of gabapentin when it first came out. It left me out of it for 3 mos., I would put up yellow Post-Its here, there, everywhere and then I would promptly forget they were even in front of my nose. In the beginning the dosages were extremely high and when my mind cleared, for the first time in probably 10 yrs. I had manageable pain. It was incredible. Today gabapentin has many cousins....I'm on lyrica, the first cousin and there are others since then. Trust me when I was tell you life simply wasn't worth living with the severe pain I was in. While gaba didn't take it away, other things were added that did.

I also have seizures that I'm told were caused by the electrolyte imbalance (?). It's highly possible, so make certain that you do have some iodine, not 64 ozs. of water and balance the rest out as much as possible. There are electrolyte salts you can take before exercise, but I'm using them sparingly. What I can't understand is that I've lived this way all my life and suddenly I start having seizures (which are highly dangerous to the brain, by the way). Always take a list of meds with you when you go to the Dr. and ask them to check them over. I'm on so many right now that it's almost, but not quite, laughable. I never thought I'd end up this way.....but then I am older.

It takes up to a month to adjust to a new medication. You really can't tell the first few days unless you have hives or severe swelling indicating an allergic reaction. You may not feel great as your brain chemicals adjust, but give them a chance. You may need a lower or higher dose as we're all different and respond to things in a different way. The Internet can scare people every bit as much as it can help them. Best of luck. Lenora.

 

[EddieB]

It has some iodine. I drink a lot of water, so I’m going to get serious about keeping up. I’m not on a salt restriction diet, so no reason to fool around and become deficient. I love gator aid but it gives me reflux.

I just did a iron panel so I’ll see where that’s at. I use iron patches, the iron pills make me terrible sick.

Like you, I rarely talk on the phone, it strains my voice and I just don’t have the energy. Hopefully better days will come for us all...

 

[Frunobulax]

I would think the 5htp would tear up your stomach?

You might mix up something here. 5-HTP is a precursor of serotonine and produced naturally in a healty gut, why should it tear up your stomach?

The one question is that the "metabolic trap" theory cautions against using tryptophane, which is metabolized to 5-HTP. But if I understand this correctly, 5-HTP shouldn't be a problem (and it's only a theory anyway).

 

[lenora]

It has some iodine. I drink a lot of water, so I’m going to get serious about keeping up. I’m not on a salt restriction diet, so no reason to fool around and become deficient. I love gator aid but it gives me reflux.

I just did a iron panel so I’ll see where that’s at. I use iron patches, the iron pills make me terrible sick.

Like you, I rarely talk on the phone, it strains my voice and I just don’t have the energy. Hopefully better days will come for us all...

Hi @EddieB.....Yes, iron's not on my favorite list either. I remember when it used to give me extreme nausea so horribly that I had no choice but to lay down, sit up....well you know the drill, anything to get it to pass. Food's really the answer, still everyone's different.

I don't know where you live, your age or anything about you, so please, please just be careful. Iodine is so needed by the body but I've been told that 32 ozs. of water (e.g. or herbal tea) is quite sufficient. Well, when you live in a hot climate that doesn't cut it. I do make sure I salt my food again, with good old Morton's Iodized Salt...I'm not taking any chances of more seizures. If you're an athlete, then check around, although I doubt it given what you have.

@Frunobulax....Thanks for adding to this discussion. I've never tried 5HTP, but it has been around a long time. I believe I never tried it b/c it caused problems with other vitamins/supplements I was on at the time.

One thing we should all be on is Enzyme Co-Q10, for the heart, after 40 or 50 (please check it out) you need to move on to Ubiquinol. Even standard govt. research has them looking for additional uses for this one. It works, so I'm just telling you - but you may both be light years ahead of me. We've been taking it since it first came on the market....and it probably saved my husband's life after 2 cardiac arrests. That's one I do have every faith in. Yours, Lenora.

 

[EddieB]

You might mix up something here. 5-HTP is a precursor of serotonine and produced naturally in a healty gut, why should it tear up your stomach?

I’ve always been afraid to try it, as I’ve read that it’s very acidic and therefore harsh on the stomach. You must not be affected by it.

 

[lenora]

Hi Eddie B & @Strawberry.....Yes, antihistamines will almost guarantee that you'll have RLS at least the next night, if not before. I try to stay away from them, but when you have serious allergies there are times when you simply need to take one.

Does it make me happy? No, but it does give me a life during the night and part of the daytime hours. I use guafenesin as much as possible. It just liquifies secretions and makes them easy to go down the back of the throat. (I don't know if you're aware but guafenesin was one of the earliest treatments for ME/CFS/FM.) Over the counter and inexpensive. I try to avoid Benadryl and its ilk at as much as possible. I'm burned out on trying one more new product...you should see my deep kitchen drawers! I spend a fortune on vitamins, as I'm sure that a lot of you do. Right now, I just need a vacation from it all. Yours, Lenora

 

[Frunobulax]

I’ve always been afraid to try it, as I’ve read that it’s very acidic and therefore harsh on the stomach. You must not be affected by it.

Where have you read that? Google finds nothing. It's an amino acid, but that doesn't mean that it's (very) acidic. All proteins are made out of amino acids. Sources like webmd that list side effects do not list reflux or similar issues.

I still think that it's a mixup and you have read about something else. Maybe you mistook it for betain HCL?

 

[EddieB]

I still think that it's a mixup and you have read about something else. Maybe you mistook it for betain HCL?

I can’t remember where I got the acid part from, but I tend to be the Bermuda Triangle of side effects, so I’m super cautious. If your using it daily on an empty stomach, that’s encouraging. I might give it a try with food.

I’d read where there were some bad batches of it years ago that made people sick, not concerned with that.
From WebMD,
When taken by mouth: 5-HTP is POSSIBLY SAFE when taking by mouth appropriately. It has been used safely in doses up to 400 mg daily for up to one year. But some people who have taken 5-HTP have developed a condition called eosinophilia-myalgia syndrome (EMS). EMS is a serious condition involving extreme muscle tenderness (myalgia) and blood abnormalities (eosinophilia). Some people think EMS might be caused by an accidental ingredient or contaminant in some 5-HTP products. But there's not enough scientific evidence to know if EMS is caused by 5-HTP, a contaminant, or some other factor. Until more is known, 5-HTP should be used cautiously.
Other potential side effects of 5-HTP include heartburn, stomach pain, nausea, vomiting, diarrhea, drowsiness, sexual problems, and muscle problems.

 

[lenora]

Hi Eddie.....For all I can remember, that may be the very reason I didn't take it. I have enough problems, including stomach (I had to have emergency gastro surgery last summer), muscle problems would be really hard to take. I have a full, unopened bottle of 5-HTTP sitting in one of my deep vitamin drawers. There was an obvious reason why I never took it after my husband bought it for me.

Here's the thing: As you and so many others know: We're not a one size fits-all group. We may have been when younger and just beginning this journey. Along the route, things change. I hate to compare it to something common, but like morning sickness during pregnancy. Some women sail on through not nauseated, vomiting or even feeling tired. I had morning sickness and exhaustion for 9 mos, worked full time for 8 mos..(which was unheard of then) and delivered an almost 9 lb. first baby. I don't know how...so you get my drift. Our bodies, and its accommodations, are just different. As I think back to those days, I always had the feeling that no one (except Rod) believed me then, eitheit's

I'm trying to get my Dr. to read an article about another drug that was kindly sent to me by one of the moderators, concerning a med that I'm on. I thought my appt. was next week, but it's actually tomorrow. I hope he receives it in time. It will have to be a Telemed (? ) call, so I'd better get my questions lined up.

Do what you think is best for your body at this time. It's OK to play around when we're starting out, as I said before, but if meds are now involved, it's quite another story. Just play it safe. If you're going off something, do it carefully and take your time....vitamins/supplements, enzymes included. By the way, a lot of mainstream doctors today see a world where meds, naturally occurring human substances, including vitamins, etc., and holistic help will be the norm. It's coming, but things like coronavirus are going to interrupt the flow. Yours, Lenora.

 

[Frunobulax]

There is no indication that the 5-HTP itself caused a disease. As 5-HTP is precursor of serotonin and occurs naturally in our food (tryptophan is metabolized to 5-HTP), the only question is which dosage is safe. For depression treatment, dosages up to 1000mg 3x daily (up to 3 grams) have been reported. So yes, I would recommend a cautious approach (I also experience a lot of rare side effects). But as far as supplements go I'd rate 5-HTP as "as safe as it gets". That is, there is always a small risk of adverse reactions, and we ME patients tend to win in the side effect lottery. 5-HTP affects the neurotransmitter balance. If a patient tends to have too much serotonin, 5-HTP might make things worse. But from what I've heard, that would happen only if one takes SSRIs or other serotonin-raising drugs.

Of course you never know what crap they might mix in the capsules, and most side effects might come from these unwanted additions. I remember some debate that 5-HTP from Griffonia might be contaminated with something that is questionable, but don't remember the particulars. As most 5-HTP nowadays is made from Griffonia, it's easily possible that some other ingredient caused something.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5728156/ says that 5-HTP is pretty safe:
"5-HTP has a good oral human safety record
Experience from >100 published clinical trials and widespread nutraceutical use suggests that oral 5-HTP - in high milligram to low gram doses, alone or as an adjunct to other serotonergic drugs, with or without a DCI - has a low propensity to cause severe adverse events in humans
[...]
In humans, common adverse events seen with oral 5-HTP are mild to moderate, and gastrointestinal, e.g. nausea or stomach cramps, and less frequently diarrhea and vomiting (reviewed in [73]). Occasional adverse events include hypomania, headaches, lightheadedness, and palpitations. Often onset is rapid, which is likely due to rapid conversion of 5-HTP to 5-HT upon dosing with standard 5-HTP IR [35, 45, 57] "

I should add that some controversial studies exist, claiming that 5-HTP has nothing but a placebo effect. Curious, I must have tried 20 different "natural sleep inducers", and only two of them had a pronounced effect: 5-HTP and Tryptophane (the precursor of 5-HTP). From a n=1 sample, I'm pretty sure that it works for me, whatever that's worth

 

[Davsey27]

Have you experimented with different forms of magnesium? Glycinate,Malate or Citrate.Hip also has a thread on here on transdermal epsom salt.If you can tolerate epsom salt baths this may help though it doesn't do much for me anymore

 

[EddieB]

Have you experimented with different forms of magnesium?

I have. I was taking mag asporitate daily for a couple years, until yippykayow pointed out that asporitate could be causing problems. I then tried mag gly, but it makes me so sick. Same with mag threonate. Mag oxide is ok, but not the best form. So it’s been back to mag asporitate for now. I’ve had my levels tested several times and supposedly not deficient. But I get “plugged up” if I don’t take any, so it’s become a daily necessity.

 

[keenly]

I elaborated on that in this this thread.
I don't think there is a direct relation between stomach acid and RLS, but stomach acid is a catalyst for many other things. It's direct in this sense: When I was taking PPIs, I would take betaine HCL for just a few days, which always gave me less RLS and more energy. But after 2-3 days the heartburn became intolerable.

Theroretically, it may be an issue for people with salt regulation problems (very common if you have metabolic syndrome). We need salt to form stomach acid, and if we are low on salt our kidneys start to conserve it, which in turn uses potassium. So stomach acid regulation issues could in theory lead to salt or potassium deficiencies.



Benadryl is well known to cause RLS because it blocks dopamine receptors in the brain. There are other sedating drugs out there that don't have this effect. For example trazodone is an antidepressant that helps some people with sleep, works well with RLS and is not as addictive as other drugs like benzos. But of course you'll need to discuss this with your doctor...
I found that a mixture of Gaba (pure powder, a teaspoon 30min before going to bed), 5-HTP (200mg to 400mg, 2-3h before bedtime) and melatonin (2mg, with the 5-HTP) helps with my insomnia.

I have been using nytol for sleep. I noe have severe leg aches at night. Anything I could use instead? Tried all the natural methods.