Newbie :) Primary RLS Sufferer here.

[Laurachrissy]

Hello fellow sufferers,
Glad I found y'all. I have been GOOGLING UP A STORM for a few days looking for new answers to an old problem. I now think, after taking a couple of different meds. recently that I have made my condition worse...like much worse...it's a little scary. I'm hoping I'll detox, so to speak, and get back to where I was just a few months ago.

I have the same annoying/itchy sensations as always but have now developed new locations. Around 2a.m. I wake up with RLS at the left of my T5/T6 ; in my right forearm; both hands and ,lucky me, it's magnified in my left foot. My calves now have a very tired, dull ache that lasts all day long too. I cannot sit still during the day without RLS creeping up on me.

Because of this I have been taken off all my meds. and my Requip and Neurontin has been doubled.

I'm worried about Augmentation......this new dosage is working but for how long.

Anyway, I'm sure if you're a member here you're frustrated and who knows; maybe I will find/hear some tips from you that can help me at least understand some of what to expect if I am approaching that critical dosage amt. before Augmentation. Would love to prevent it if at all possible. Any advice greatly appreciated.

[badnights]

Laurachrissy, I'm sorry you're having these troubles. It sounds like you're already augmenting, and doubling your dose of Requip is probably not the answer. But first, to be sure you're augmenting, the criteria are:
1. you are experiencing an increase in symptom severity whereas there was a positive response when you first started treatment; and
2. either your symptoms start earlier in the day, or you're getting a backwards response (symptom severity increases some time after a dose increase and improves some time afer a dose decrease). It's too soon to tell if you're having a backwards response, since you would have to raise and lower your dose to tell, but you obviously meet the first criterion (increase in severity) because it has spread to your arms, increased in intensity, and is happening during the day.

Can you tell if the main onset is occuring earlier in the evening? It might be hard because you're already getting daytime symptoms. But if it is earlier, you can be fairly sure you're augmenting. You should make sure it's not one of your other meds, first, though (more on that below). It would also be nice to get a knowlegable doctor to confirm the augmentation, but be careful - mine didn't know what augmentation was and kept wanting to raise the dose. He was not offended to have his patient "teach" him but some would be.

Whether or not you're augmenting, the first order of business is to have your ferritin level checked. Note: not all blood work for iron includes a ferritin check, so ask for it specifically. Some work has shown that people with Ekbom disease (EkD; formerly RLS) who have low ferritin are far more likely to augment on Requip than EKDers with adequate ferritin. You should have over 50 ng/L, and even up to 200 is not too much for someone with EkD. If you have under 50 you should probably take an iron supplement. Take it with vitamin C, which is necessary for absorption.

Getting rid of your other meds blindly might not be necessary. Some meds are well-known to worsen EkD symptoms in many patients: most anti-depressants, anti-nausea drugs, anti-psychotics, and - maybe worst of all - anti-histamines (not all of them, just the older ones like Benadryl). Did I miss anything? If you started one of those drugs just before your symptoms got worse, that might be the culprit. If you are curious as to whether any of your other drugs are known to worsen EkD, you could ask Dr. Mark Buchfuhrer who is an RLS (sorry, EkD) specialist who replies to emails from people with EkD. He gives his time freely for people like us who are in need. somno@verizon.net but check out his website first, you might find your answer there: www.rlshelp.org

[Laurachrissy]

Beth,
Thank you for responding with all this information. I will make an appt. to get my Ferritin level checked. Maybe this is the answer; hope so
If it was a combination of SSRI, Ambien, caffiene would I improve quickly or is this something I should wait maybe a few weeks to see?
Since you mentioned a backward response as opposed to augmentation I will try to keep tabs on my symptoms and time of day so I can let my doctor know exactly what is going on.
Thanks again and have a good weekend.

P.S.
Thanks for the link and email address. Am off to read through this site now.

[badnights]

Enjoy the reading ! There's a lot of good stuff there.

Ambien is OK for EkD, as you may have found out by now, and caffeine is generally evil (I find I can have a cup or two sometimes, but other times, it causes symptoms). SSRIs frequently make EkD/RLS worse; Wellbutrin is recommended as a replacement that is usually RLS-friendly. That said, I tried Wellbutrin and it make my symptoms worse; and some people use SSRIs with no increase in symptoms. I have heard it takes a couple of weeks to get SSRIs out of your system, but you should check with someone else.

The backwards thing is actually a form of augmentation. I included it because it's in the formal definition, but I haven't "met" anyone who has had that form.

Another thing to be aware of is what will happen when you quit Requip, if it comes to that. Your symptoms might get worse than they were before you started the drug, for anywhere up to 2 weeks, before they settle back down to your baseline level. Physicians who are aware of this will usually prescribe an opiod to get you through those two weeks. If you're switching to Mirapex (pramipexole), be aware that it's another drug that can cause augmentation. It's important not to take any higher of a dose than you need, since augmention is more likley at higher doses. This will be easier to do if the Reuip "withdrawal" is over before you start the pramipexole.

Maybe stopping the SSRI is all you'll need to do. In any case, I hope you figure out what's going on, and researching it yourself and becoming knowlegeable about the disease is the best way to help yourself.

Let us know what happens with the ferritin!

[Laurachrissy]

Thanks for sharing your experience with the Wellbutrin as well

[badnights]

If you like Ace bandages you might like compression stockings. Start with the lowest pressure.

I think you should give your doctor's office a shout and ask about the time it takes to get the medication out of your system. The nurses there would probably know, and you would then have a professional opinion. Does your doctor know you're dropping all these medications suddenly? Since SSRIs mess with our neurotransmitters, we're supposed to taper off them to avoid wild mood swings and stuff like that.

I should emphasize that Wellbutrin is nice to almost all RLSers who take it. I'm the only one I've heard of who got worsened symptoms from it. I just wanted to make the point that no one can predict how any one individual will react to a drug.

Does you doctor seem familiar with RLS (EkD)? Is he/she knowledgeable about augmentation? It would be best to be doing this with your doctor. Even if s/he is learning as she goes, she can pick up on a multitude of things you or I would never think of. Some of us have printed the RLS Foundation brochure for medical professionals and given a copy to our doctor. You can download it at:
http://www.rls.org/Document.Doc?&id=2112

[badnights]

Darn, I hit Submit instead of Preview. I wanted to end by wishing you luck and a peaceful, sleep-filled night!

[Laurachrissy]

I have taken the Requip this time of day a few times but I have not done it everyday . It does make it go away and I quit thinking about it.

[badnights]

Hard call. Not nice to be dealing with that all day long, I know. The distraction level is exteme.

What was your ferritin? If it's under 50 (or even under 100), I would hold off on the Requip as much as possible and take iron sulphate pills if you can stand them, ferrous gluconate if you can't, for a couple weeks to see if you can jack up your ferritin. That by itself might help the EkD, and even if it doens't, you're less likely to augment on all that extra Requip if your ferritin is high.

[Laurachrissy]

It was low normal. I will check at my next appt.
I am about to finish my first bottle that has the sulfate in it.

[Polar Bear]

You say your ferritin was 'low normal'. What was the actual reading, because what docs call 'normal' is not high enough for us.

[Laurachrissy]

I think 59. My other doctor took my results to put on file but I think that's what it was. Those results are 2 yrs. old. I see what y'all have been stressing and I will definitely ask in July. Maybe he will order another test.

[Polar Bear]

I think my ferritin reads at about 57 which was considered pretty good. But for us ekd/rls folk I believe we need to get up near 100. I haven't done anything to increase my iron but perhaps should be doing so.

[Laurachrissy]

I asked my MD if I was borderline and she said no.

[badnights]

Someone (EkD doc) recently said even 200 might be a goal for EkDers. 100 is not a bad goal. I had such a dramatic effect from raising my ferritin over 100 (from 30 to 130) that I encourage everyone to try, with their doc's support.