Tried EVERYTHING, and now...

[auntiesioux]

EVERYTHING means just that, medication, body work, head trips...Just returned from a trip to Johns Hopkins Hospital where a Dr. Paul Allen's research showed excess glutamate in the thalamus of the brain is the etiology of the pathology of WED. Very SADLY the treatment from JHH is more pharmaceuticals to treat the symptoms not the cause. This was shocking. They recommended I take (for the rest of my life) methadone! Fast forward... I saw a naturopath when I returned from JHH and she also said that excess glutamine is the basis for the pathology. My lab test show a very high serum glutamine level. She started me on NAC (look it up). I am also on the Paleo diet to calm down the inflammation in my body but most importantly done with sugar and refined carbs. I would eat worms standing on my head if that helped. I seriously augmented on ALL drugs. I have read that there are several amino acids (AA) that can reduce the excess glutamine in blood. Theanine is one but I am doing more research there. After having my pancreatic levels rise from the Gabapentin and ending up with cardiac issues from the Requip...well, over wrought. All the past medications and homeopathic stuff either worked for a short period, didn't work or or I augmented. What does help me is hot showers/hot tub, my exercising my legs instead of them exercising me, perhaps the energy work I am doing, new eating program. We are all so different but in reading the post we all seem to be posting the same questions or checking to see what we are doing is OK. If something works for you, do it. Coffee does NOT wake me up, it makes me sleepy...so java helps at 3AM when I am still awake. Sleep deprivation is so scary, I fear a stroke or something else but still have a good attitude in spite of nightly screaming and crying. I was taking a cannibus tincture every night with some positive results like quieting of my legs. Then I augmented on that and was left with hallucinations and still jumping legs. My quest now is the amino acid route or something other than big pharm drugs. I know there is something that can reduce the glutamate. If you think of everything we WED people take and nothing has worked, we need to look at why. Well the premise of the 'why' has been wrong so why would anything work. Look up the role of glutamate in the body, suddnely that makes sense, at least to me and Dr. Paul Allen and all of his research team. I actually am on the methadone for a short period of time, to appease my husband. For now, no side effects but also is not doing much as I am still awake although my legs finally settled down. Obviously we can talk of this for pages but will stop now and post what ever else I see in the way of etiology treatment, not treatment of the symptoms. We all know how that works or doesn't and the side effects are just as bad. Thanks for listening. Sioux

[Hidden]

Wow - Lots going on in your life. I'm sorry about all of that, and yes, methadone surprises me too. My doc is giving me Clonidine HCL (it's an 8 hour blood pressure used as a one-off) and it actually works pretty well. They originally wanted to put me on Mirapex, but I freaked out after I read about the augmentation, the difficulty of withdrawal, and the massive weight gain a lot of people experience... None of that is where I am..

One thing that occurred to me (I may have missed it), but have you had a sleep study? I have RLS too (which was confirmed observationally during the sleep study), but with severe chronic obstructive hypopnea. I am anxiously awaiting the fitting appointment to see if the resolution of the fatigue can lessen the RLS maybe? Best of luck with your search..

[rkatt]

So sorry you’re having the problems you describe. The info you relate is very valuable, to me, anyway. It seems the detection of causal factors is being refined and brought into shaper focus. AA sounds promising. I’m seeing my doctor tomorrow and will discuss this with her. She’s not an expert but knows quite a bit. Being young she’s helpful and willing to push the boat out. I’ll also ask about dipyridamole. Hope your experiments help!! Thanks for posting. It’s comforting to be able to name causes and not be stuck with the diagnosis of ‘idiopathic’.

[BoldMove]

The drugs scare me. I had enough with Mirapex and its augmentation. I got better results from 1theanine morning and 1 at night. That lasted 2 blessed months. I find vacations are helpful, but they are rare and 1 can't live on them. A good help, but not every time is the 30 minute walk that is promoted by RLS foundation. Wish I could take 30 minutes to walk moderately every day. If nothing else works, then I get up during the night and walk in the house doing light chores with dim lights until my legs settle. I have a flat massager that I lay my legs on. When RLS starts I turn it on, sometimes it doesn't work, other nights its wonderful. Gentle is best setting for me. Other times I have to lay my legs on ice packs which is fairly reliable after I've walked a bit. There are many natural ways to handle RLS; pick the ones that work for you and go down the list until you can sleep. something always works. Allow yourself extra sleep time.

[Parminter]

I take methadone, and it helps enormously when things get rough. But It only addresses the akathisia, not insomnia, which are two different parts of the same disease.

The glutamate highs seem to be because we have too little opposing adenosine, which can be addressed with dipyridamole, but targeted drugs for us are yet to be developed. Our hypo-adenosinergic state accounts for the lack of sleep. We have 'hyperarousal' because we cannot switch from glutamate during the day to adenosine at night.

I assume your serum ferritin levels were assessed and addressed. Without sufficient brain iron, all else is pointless.

When I first heard about methadone, years ago now, I too was shocked. I no longer am, it is a very useful medication for RLS.

Ask your doctors if you may try dipyridamole to address the hyper-glutamatergic state. It is an old drug, first used in the 1970s, I think, so it has a very long track record. Like methadone, it would be taken in doses well below the therapeutic levels originally intended for pain (in Methadone) and for anti-stroke action (in dipyridamole).

[Mona23]

I’m going to do some research on this - never heard of this connection before. Thanks.

[DicCarlson]

The landmark study from 2013 showed that high Glutamate levels are indeed the culprit behind RLS insomnia. While iron supplements tamed the severe RLS for me - that pesky Glutamate excitotoxicity remained. Sleep 2 hours - then hyper awake with at best fragmented sleep for a few hours the rest of the night. I have tried the NAC and Amino Acid Taurine and L-theanine - no real change noted. You can pretty much test if this is a problem - no daytime sleepiness (excitability continues night and day), when awakened take an ibuprofen (it is a Glutamate Blocker) and can help you fall back to sleep. Here is a pretty good rundown on Glutamate/GABA neurotransmitters. holistichelp.net/blog/how-t...

Also the original RLS study from Johns Hopkins ncbi.nlm.nih.gov/pmc/articl...

[Nosleepatall in reply to DicCarlson]

Thank you for this article, very helpful!

[rls_optimist]

I'm sorry to hear you are having sleep deprivation. Perhaps DicCarlson's helpful reply to you may be of use. A few things need clarification, though. Please look at the link he provided to Allen's research on glutamate. Note that Allen's paper does not claim that excess glutamate levels cause RLS itself, but that it is a likely cause of the sleep disturbances associated with RLS. So this research has not led Allen et al towards anything that might help treat an actual cause of RLS.

Instead, he prescribed methadone for you. Methadone is now accepted as a highly effective treatment for refractory RLS by most experts. So it looks like his reasons for your treatment is sound. You yourself report that it has resolved your RLS symptoms. It is only the sleep issues that remain, it appears. Now, as it turns out, methadone acts to reduce glutamate levels in the brain. [ref.: search Wikipedia for methadone, then search that page for glutamate.] So theoretically, it might help induce better sleep. Unfortunately, this doesn't seem to be the case for you so far. I have a severe case of RLS, and I take methadone as part of my regimen. It does not interfere with my sleep, but at least one other forum member has reported that, like you, it does not help her sleep, either. People respond differently to different opioids, so it may help to discuss with your doctor the possibility of trying different one, such as oxycodone. (That one keeps me awake, but most others find it helps them sleep.)

One more thing: consider having your iron levels checked, as others here have suggested. I would be surprised if your JHH doctor has not recommended this, as well as possible oral or infusion iron therapy. Good luck!

[marsha2306]

Is Dr. Paul Allen a neurologist in the same department as Dr. Early? Curious because Dr. Early is very well known for the iron theory related to RLS.

[auntiesioux]

hi all, in response to checking iron levels, mine are in the high normal range. I actually did have my glutamate levels checked and they were high-normal. Just when I think I am the right track, I read something that says that is wrong, won't help and try this. I am waiting for an order of L-theanine and magnesium threnate to arrive. I am going to try those two and cross my fingers. I am also on the Paleo diet, recommended by a naturopath. I recently added the low glutamate diet which is almost impossible so may back down on that. I think the Paleo diet is actually a good way to eat in general. One doctor said the low glutamate diet is worthless and another said it has saved his son's life. I don't really know but something has shifted but oh so little. Well to note, it is almost 3AM and I am on the computer, which actually calms me down. I will do this until my body "stops" then take a very hot shower and sleep at least for a few hours . Auntie Sioux

[Svengolly]

Have u ever tried kratom ? .. Low dose ..1 gram ..red kratom worked like a charm on my severe rls (ie raging over the gabapentin 300 every 2 hours that usually worked great ) . The only catch is .. i felt very depressed and achy /rlsish the next day .. but I have heard this downside from no other kratom user .... anyway I did kratom for 3 nites .. the next nite went back to gaba and barely needed any ! S

Btw .. I too sleep on coffee .