can anyone help

since i was last on here , my wife has now come of mirtazapine completely (about aweek now) and also halved her dose of gabapentin from 2 300mg tablets a day .. she is now having terrible days and nights and is so depressed .. the doctor is trying to find out if any of her tabs have caused her rls or not .. He told me this morning on the telephone that it was not the mirtazapine that was likely and would she like to go back on them ? and to carry on reducing the gabapentin till she is of them as well , and then she can come of her water tablet after that ? In the meantime my wife is so confused and utterly dejected because she is getting no respite day or night and is in constant disspair .. does anyone have the same experiances of not knowing if its withdrawel symtoms or rls getting worse or is it both .. And does anyone know what she can do to get some relief please .. thank you

11 Replies

  • I havent heard of Gabapentin making RLS worse, it by rights should be helping your wife's RLS. Taking just 2 of the 300mg i doubt will help to relief her RLS, its a small dose. The only thing i can suggest unless anyone else has any idea's, is to email Dr. B. at his website he is an RLS specialist and alot of us have emailed him for advice before. Tell him your wife's medication history and that does he think any of her meds have caused her to have RLS which she didnt before. Tell him what her doctors are doing with her meds. You should get an email back from him in 24-48hrs. I might help you get some answers.

  • I have never heard of gabapentin causing rls either or water tablets and I have spoken to a thousands of sufferers! Is your wife still on Amitripitylene? Has the restless legs got worsecsince stopping tramadol?

    The only thing I can suggest to relieve it slightly is staying in a hot bath , I have slept in it before now.Or hot water bottle , or something cool on her legs depending on which helps most.

    If you google rls natural remedies thete are lots of ideas on there but I have to be honest they dont help many.

    She is boundcto be depressed with stopping her meds like this.The patch she is on is a strong painkiller so should in theory help her legs, Maybe this has nothing at all to do with her meds and she just has rls! There are very good treatments for it.Cant see point in waiting for her to come off things like water tablets seems ridiculous. She needs to start rls treatment the poor lady must be going out of her mind messing with her like this, Sorry gets me sooo mad when docs dont take rls seriously. Thank goodness she has you, Excellent idea to email the doctor from Elisse x

  • Well I have read it all now ,why ask about his wife's wieght and what she eats,don't tell me rls comes from not eating veg,no one could try harder with there diet than me I am not over wieght but still got rls

  • I am sorry to disagree but if weight, diet and drinking water etc was the simple answer to RLS then we all be getting some relief now. Do you realise bigleg just how desperate all these sufferers are to even take any meds for the disease in the first place? Most of us have reached rock bottom by this stage. I am certainly not overweight and have a balanced diet with plenty of water. Nothing in my diet makes any difference whatsoever. This ugly beast rears its head when IT IS ready not when we treat ourselves to something nice once in a while.

  • Bigleg, how severe is your RLS, do you take any medication for it... just wondering.

  • What similar symptoms does your husband suffer.? Its either RLS or its not. No one knows what causes RLS not even the experts. Some people find taking magnesium can help, but its not helpful for everyone. RLS is genetic for most of us. Some RLS suffers find they have Secondary RLS, so they are the ones most likely when finding out their underlying condition and treat it, are the ones who can eliminate or reduce the symptoms without resorting to the strong meds used to control RLS. For the rest of us, we take the meds available to keep us sane from sleep deprivation. If it was all that easy to just take magnesium and watch out diets, then none of us would be here on this forum or any of the many other groups for RLS out there.

  • Bigleg, i am sorry but as you dont have RLS, and you may think you have the answer, unfortunately you havent.

  • Bravo, dietdoctor knows his stuff. The whole world should eat that way. Then we would be much less likely to suffer from various diseases, including diseases that arise from a genetic predisposition such as RLS. Diet won't help someone with a genetic predisposition to RLS if they take medications that trigger it, such as benedryl. Bigleg, you're wasting your breath, the vast majority of people on here are taking medications that trigger or worsen their RLS and they need dopamine agonists or pain killers because salmon is no match for an SSRI.

    And what about people who's RLS was triggered by injury to the nerves in their spine? Many people come on here who never even heard of RLS until they had back surgery or injury. The vast majority of people in this world can injure their back and undergo back surgery and never develop RLS. Those with a genetic predisposition just can't handle that interruption of the transmission of dopamine through the central nervous system. Diet is unlikely to completely resolve their problem or at least in time to maintain their sanity.

    RLS should be renamed to RLDR (really lousy dopamine receptors) due to RLBI (really low brain iron). As we age, those receptors become more lousy, everyone's receptors do, but we're more sensitive to that age related degeneration and that's why people think RLS is progressive. It is and it isn't. RLS is progressive in the same sense that wrinkles are.

    Lousy receptors means dopamine just kind of drips down our central nervous system versus a stream for the rest of the world. That drip may be just enough to keep our legs calm, but add one more card (drugs, back problems, MS) and the whole deck falls.

  • Most people who take meds for RLS have had it for many years before they turn to them In my case I suffered for around 20 years trying every natural solution going including diet changes, elimination diets etc. My RLS is genetic and the condition is progressive.Had I not had medication to see me over the last 11 years I would be insane or dead simple as that

  • Hi 4plus, you are a wonderful husband. If someone is pre-disposed to RLS, then just about anything and everything can trigger it and make it worse. So just about every medication your wife is taking from the cholesterol lowering medication to the HRT to the lansoprazole/proton pump inhibitor (not as bad as Zantac or Tagamet) can trigger symptoms of RLS or make worse. People with RLS have shoddy dopamine receptors, possibly caused by a severe shortage of iron in the brain (not necessarily the body). So even though our brain levels of dopamine are normal our receptors (which are the gateway through which dopamine is transported through out our central nervous system) are bad and that means the substance that quiets our legs is in short supply in our bodies. Hence restless legs or even restless body syndrome because there's little dopamine to quiet them. As we age those receptors become even more shoddy. If we have back problems or back surgeries that affect the nerves in our spine/central nervous system that means even less dopamine is getting to our legs/peripheral nervous system. Serotonin is a dopamine antagonist of sorts so if we take antidepressants that raise serotonin then our RLS becomes worse, immediately upon taking. Same is true for melatonin. Certain antihistamines (especially benedryl) and antacids (Tagamet zantac, Pepcid) will within hours cause or worsen RLS. Then there are many many drugs that interfere with our bodies ability to absorb iron from the GI tract and in the long run (or maybe immediately) worsen RLS. And we RLSers really need that daily iron to enter our bloodstream and travel to our brains. RLS is sometimes referred to as the anemic brain. Even when our bodies' iron stores are high, way high, we still get RLS so that tells me our brains can't call it up from our stores. Supposedly proton pump inhibitors and certain cholesterol lowering medications interfere with our bodies ability to absorb iron (non heme iron) from our small intestine. So you should be getting a picture of what is happening to your wife. Then there are other odd things that seem to trigger RLS such as too much exercise, over-eating, especially at night, or being constipated or just irritable intestines. Haven't quite figured out why those things are triggers? Some find that dairy or gluten or sugar, or tea or coffee, or alcohol, especially at night, trigger their RLS.

    Ever wonder why RLS disappears when you walk? Our brains release dopamine in a split second because dopamine is required to balance us when we stand and to coordinate movement when we walk. So anything you discover that can cause your wife's brain to release dopamine will bring some relief. Some people on here use a pilates/balance/stability ball (can't think of the real name) to sit on rather than a chair because you have to make micro motions to stay on it and that triggers the release of dopamine. A slant board will do the same or maybe elevating the foot of the bed. Even listening to music, especially at night, has helped some. Studies have shown that music triggers the release of dopamine. Maybe even white noise/fan at night?

    Now I will give you the litany of substances that people have found that give them "immediate" relief at night - a banana, cream of tartar (a teaspoon in water but that exceeds the recommended daily allowance). But if your wife is on a diuretic she may be low on potassium so a good form of potassium at night (that readily enters the bloodstream) may provide relief. One man swears by gingko biloba but I would be careful with that as with many herbs. I swear by 25 mg of iron bi-glysinate at night on an empty stomach for immediate relief. Especially since your wife is on a proton pump inhibitor. Not only is it inhibiting iron but vitamin c as well. So if you take any form of iron, that isn't already broken down to it's smallest parts, it won't get absorbed into the bloodstream. It's ok to try iron for a few nights but more than that you must consult with a doctor. Many swear by magnesium and calcium but few claim "instant" relief from those two supplements.

    Explain all this to your wife. It's the princess and the pea idea. Either remove the pea (the trigger) or throw enough mattresses (stability ball, music, potassium, iron) under your wife that it relieves the discomfort. I know your wheels are turning but try to engage your wife to get her wheels turning. If she's going to lie awake at night at least arm her with enough information so that she can think of ways to conquer the enemy. And then help us all in the process :)

  • I take mirtazpine and it does not bother my RLS at all. However, the amitriptyline almost sent me over the edge, it is high on the "naughty list" for RLS. That is my experience and it is very common. Mirtazapine stopped my panic attacks, while the amitrptyline almost drove me out a window. So, my advice from my experience is to wean down off the "ami", and of course, talk to her doctor about that, too. IT will bother 99% of all RLS patients.

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