Last night was the worst yet. My legs went into huge fits starting in the afternoon and then going all night until I finally fell asleep at 5am. My legs and back are weak from the jumping spasms. For the first time I had my arm jumping. I've been reading all i can on RLS. I've been watching this newsfeed. My blood tests show high iron. I am vegan/ vegetarian. I have been sick with EBV reactivation which seems to have made my RLS insane. What scares me is my desperation at night for anything to stop this madness. Yet I see all the posts about augmentation, trying to get off these crazy drugs that have us addicted and with horrible side effects which makes things even worse. The catch 22. Damned if you do and don't. I feel hopeless. If I start these drugs...gabas, or neurontin I face the world of augmentation eventually....i have no idea what to do. So exhausted and afraid...
I tried 1 week on murapex and side effects right away. Then neurontin 1 night and hallucinate. I asked my go for a sleeping aide and I see once again they are gabas...is there nothing that doesn't have this rebound effect eventually?
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NoMoRLS
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Hi welcome. Firstly you don't get augmentation from Gabapentin /Neurotin or Pregablin ( Lyrica ). Only from the Dopamine Agonists and there have been 2 documented cases from Tramadol (so virtually nil ).Haveyou tried any of the pain mes? Must be an opiate, the weakest is Co -Codamol (prescription strength ),then Codeine, then Tramadol. Always start with the weakest as it may work. Haveyou had your ferritin iron levels tested?
While I have RLS I actually take the same quantity of clonazepam for 15 years for epilepsy. No problems at all. I do take them at night because they make me sleepy.
Hi NoMoRLS I have been on clonazapam for years and I was really good on them for about 10 yrs on there own no side affects ,a bit tired until you get used to them ,I now have to take other tabs as well to keep the horrible RLS at bay but most of us will try most things just to make life better but if you can go on those for that long ,hopefully longer which some do ,you might not ever have to change if they suit you 😉
First night sleep in weeks. Lordy it feels good. Took .5 join. Should I try cutting in 1/2 to .25 to see if it works?
Me again. This is the first time I read your post here. You know from my post that the melatonin made my RLS worse but "worse" is a mild word compared to what it did to me. My forehead was restless. My chest, my arms, my eyelids all restless.
I see that your "ferritin" is high and that you might have an infection. Which means you might have "high ferritin" in the face of "low iron." This is not an uncommon phenomena in the face of a chronic infection. Ferritin is the binding protein for iron and when they test your blood they look at this protein as a marker for your iron stores. But the test doesn't show whether that ferritin molecule is coupled with iron. There are tests (probably expensive and not covered) that will show how much iron is in your blood and/or bound to ferritin. It's worth a quick google to learn up on it on the outside chance this is you.
In the face of an infection your body will clamp down on the ingress of iron from your GI tract as well as the release of iron from your iron stores. So it's not hard to imagine how much this is probably aggravating your RLS.
Wow yes I do have a chronic infection. Drs told me I had Epstein Barr and reactivated since last Nov. Then I has a shoulder surgery and my RLS went thru the roof even on pain pills for my shoulder. It has been.nonstop. My EBV IS calming down. More blood draws next week. But your iron info is great. Calcium high too. They still have not dx me. I'm getting nowhere.
For what it's worth we all have EBV (well maybe 95% of us) but it's dormant. The importance of virus' is underestimated, I think. They've been with us since the beginning of time and we need them and they are part of our personal zoo if you know what I mean. With that said sometimes one of the zoo animals gets out of hand and we have to beat it back. For you, right now, it's EBV, for me it's candida that tends to get out of hand now and again.
Klonopin is one of my emergency meds and I think for occasional use it's a good med. Especially if you never go above .5mg. And I think any of the pain meds/opiates are a good emergency med. I don't like the DAs or the Neurontins.
I'm wildly hopeful that once you stop the melatonin you will see an improvement with your RLS. Improved RLS means more rest and less EBV.
Hmmm, high calcium? What other non-RLS meds are you on?
Just vitamins. I also have MTHFR gene mutation which screws up b12,so these special vitamins help with methylation...another long story. At first my gp thought I had hyperparathyroid...but it never went further but I do have another blood draw soon. Apparently high calcium in blood can cause RLS like symptoms. I've had to research everything on my own. And by reading sites like this I've gotten more help than ever from my Drs. One Dr told me it was age related and basically suck it up. Grrrrr.
I am a cancer survivor 4 years in remission and I had to research all that as they wanted me on years of chemo. Pfft
Surgery and diet. Vegan is great at combating cancer recurrence.
So onward ho....
I can't thank all of enough for your info. I'll keep reading and learning. ✌✌☺☺☺
If they used spinal anesthea or even a general for your shoulder surgery it could take several months for RLS to get back to baseline. People who have never had RLS in their life will get it after a spinal anesthetic.
Great that the EBV is calming down. Be gentle on your body and mind in all ways. One or two foods at a time and not processed. I feel best on a raw diet meaning raw vegetables and raw fish. That's about 75% of my diet. A little fruit, a little grain - just not three times a day. And supposedly we should get most of our calories between sun-up and sun-down. This is really basic common sense stuff that will not cure disease but will give your body the opportunity to heal itself.
If your iron is "normal" rather than "high" then maybe your doctor will allow you to try the iron at night thing.
I also had a shoulder surgery which took one year to heal, but not 100%. I don't have a full range of motion. Then after that, my gallbladder was taken out. Then I got reactivated EBV. Had it since last August. But I tell you, I've felt like this for a very long time before that. I think the stress of these surgeries while having a thyroid disorder stressed my body out too much, and it is all going downhill as a result. I even had an Orth-surgeon tell me that my shoulder problems were probably due to my thyroid issues, as many women have shoulder surgeries due to Hashimoto's Thyroiditis. My theory is that the EBV is what originally caused the thyroid problem, and now I vacillate back and forth with either a messed up Thyroid lab results, either too high or too low TSH levels or my T4 isn't converting correctly. As a result, I keep reactivating. It never ends. Oh, and have had RLS for years. Getting worse. Nothing works. I've tried it all, even cannabis with a medical card. Made me sicker.
Soory to hear i have. rLs some times very bad climbing the walls i am on pramipexole 2 tablets and i take to codene tablets i have some good night's and some bad nights I which there was something for this complaint but they keep trying different tablets Tony
Oh, what is starting to work is L-Lysine. I take it as a combo pill with Monolaurin. the brand NOW sells it. I think this is kicking EBV's butt! I am having a lot of slough-off symptoms. Supposed to take about 1000mg a day, but I am only doing 500mg until I can get used to it. The first night resulted in diarrhea, so start slow.
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