Does a mosquito bite sound right? and other topics

[Pedantic]

I have been suffering from RLS for several years and it is getting worse. In the last year I always get RLS when I am laying down unless I am medicated and I will sometimes get it when I am sitting up. But when I am laying down (here's the interesting thing) before the onset of the RLS episode about half the time I feel a sharp sting-like sensation that feels like a mosquito bite or maybe a bit worse. It lasts for only a few seconds and then goes away, but I say "Oh Oh!" because within fifteen to thirty seconds I will get my first RLS episode of the night and unless medicated, will last all night and they are fairly vigorous (this also happens during the day if I am trying to take a nap). Has anyone else experienced something similar? Is this RLS or something else? My doctor decided to treat it with Carbamazepine, but for some reason he did not pick up on the link between its occurrence and the onset of an RLS episode.

Now the second half of the question. I am on four Ropinirole, one Clonazepan and one Carb\Levo per night. I am allowed to take the CL one hour before bedtime, and in the middle of the night and at ten in the morning as well. My neurologist gave me some strict boundaries within which I can "experiment." I may take two CL at any of the dose times if one does not seem to be working. Well, one works for perhaps three hours and then I have RLS episodes until I take more medicine (after which I must wait an hour before going back to bed to give the medicine a chance to move through my system). If I take two, the medicine is effective for six or more hours. Sometimes one dose does not work for even three hours, especially if I have had a long day.

I discussed augmentation with the doctor and he promised me that any medicine I take will one day quit working and I will have to switch to something else.

But here's the problem. Even with my careful experimenting within the narrow limits prescribed by my doctor, I am running out of medication before its time to refill. When I talk to the nurse she tells me to talk to the doctor at my next appointment (June 7). She will not relay a message to the doctor. How am I to resolve this dilemma? (Other than changing doctors, which I am seriously considering.) I could make an appointment but I am retired and on a limited budget. I'd rather not do that if there are other options.

I don't think there's an easy solution to this one, but I thought I would at least ask.

[ViewsAskew]

The stinging is likely some type of neuropathy. Taking a DA has always caused a mild degree of this for me - in my hands, arms, feet, legs. And, this almost always make my RLS immediately act up. I rarely have it anymore - it was worst when I was augmented.

I truly think you need to change doctors if you can afford it and make that work. No one should be using carbo/levo regularly these days. I don't know the mg of the ropinerole you are taking, so cannot comment on whether it's too much or not...but if it was doing a good job, why would you need all the other stuff, too?

There are often no easy solutions. But, I've learned (the hard way) that there are NO solutions when the doctor won't even consider options and is not up to date on the research.

[Pedantic]

Thanks Views. I was afraid of that (augmentation). I don't know whether I can afford a different doctor, but I know this; until my RLS is brought under control my life is at a standstill. I sometimes cannot sit for long before the tremors strike, and I can't lay down, period, without tremors hitting. Because of the drugs I sleep most of the day and I have turned down two jobs because I could not guarantee that I would be able to complete a shift (day or night). I am looking at switching to a RLS Foundation-recommended neurologist, but that takes time. Most want all of my medical records before they will consent to see me. I will keep the forum posted as things progress.

[Rustsmith]

If you are going to switch, I suggest that you get started ASAP. I have been a patient of one Foundation Quality Center and my new doctor's clinic is applying for Foundation Quality Care status. With both doctors, the waiting time for a "new patient" appointment was around 3 months.

However, with that caveat, I was very happy with the care provided by both doctors.

[ViewsAskew]

I empathize - more than you know! I was in a similar situation about 10-12 years ago - I couldn't work, function, etc. Thankfully I finally got it all addressed (or at least most). I actually had a full time job this year! Granted, I work at home a lot, but that i was able to do that was remarkable given how bad it had been.

[badnights]

You poor thing!

I have been in your spot a few times, and the only answer there has ever been for me is to suffer through it until the doctor can see you, until the doctor learns what you already know, until the doctor gives up and refers you to someone who knows more, until you find a decent doctor, etc.

I agree with Ann. You need a re-educated doctor or a new one.

You doctor is mis-informed if he thinks that augmentation is a matter of the medication ceasing to work. It's a worsening of the disease caused by the medication meant to treat it; a far more dreadful situation than merely being stuck as you were before medication.

Keeping you on levo-carbidopa and telling you you can take 3 a night is verging on criminal. Levo-carb is never given to people who have daily WED symptoms by doctors who are experienced with WED/RLS, because it is almost sure to cause augmentation (worsening of the disease).

Has he tested your ferritin? This basic test is the only lab work typically done for WED//RLS patients but it must be done, especially if your physician is putting you on dopamine medications - either dopamine agonists (DAs) like ropinirole, or LC. People with ferritin below about 75 ng/ml are way more likley to augment on DAs,so you shouldn;t be taking them if your ferritin is that low. You might also want to consider oral iron supplements if your ferritin is low; low ferritin has been linked to greater severity of RLS/WED.

Regarding ferritin, your doctor (judging from his ignorance on other topics) will likely tell you your ferritin is fine if the number is over 20, because that is OK for most people who don't have WED.

You say you're taking 4 pills of ropinirole. Are those the 0.25 mg pills? The max daily dose now being recommended by RLS/WED experts is 1 mg, so you're at it already. Please avoid raising it if at all possible.

I would do everything in my power to see a Foundation-approved doctor if I were in your situation. The route your current doc has you on will lead to escalating symptoms, not improving. To have any functionality back in your life, you need to see a doctor who can treat you and not harm you.

That may be your current doctor, but your problem then would be to educate yourself and then point him to that knowledge - a long process and one that doesn't work with some sorts of doctors.

You might want to try reducing or eliminating the LC. Maybe going every second night without LC if you can, and on nights that you use it, just take the two pills at once and no more. I really don't know what to say, though; there is so much grief however you approach it, until you get some decent medical care.

[Pedantic]

Thank you Beth. The doctor I have currently doesn't listen. In fact, the last appointment was very close to hostile (that may have been my fault--I have never had to tell a doctor that he might be wrong(in this case the gender is correct)). I had an appointment at Mayo but found out that my insurance will not cover it. I am trying to arrange an appointment with a doctor here in Missouri whose name does appear on the Foundation list, but that is taking time. She wants to review all my records before deciding whether to see me.
Before LC I was taking the Ropinirole + Clonazepam every night and it was not working at all. That's why the current doctor started me on the LC without taking me off of the other two medicines (BTW, the Ropinirole is .5mg/pill--definitely too high for what I am hearing on this board). Last night I was watching TV with a relative and I had to get up and walk because the tremors started. This is happening more frequently (i.e. tremors while awake and sitting up).
If anyone knows of a good doctor for RLS in Missouri (hopefully one endorsed by the WED) who will see me soon, I am all ears. I am beginning to think that perhaps I *can* afford the doctor whomever he/she is if the doctor will help, no matter the price.

[badnights]

Getting your life back is priceless. Not to sound cliched, but it really is. Ann has a good story in that vein - at the end of her rope, she put out money she couldn't afford to go see Dr Buchfuhrer in California, and has never regretted it for a moment since.

Your daytime /awake symptoms are probably augmentation, and there's a good chance they'll go away when you get off the DA and LC, and take something else instead. I don't know how much you know about augmentation but you should know the diagnostic criteria, or at least the clinically relevant version of them: the symptoms start earlier in the day than they did before you started ropinirole (or LC), or they are more intense, or they have spread to other body parts, or they begin much sooner after sitting or lying down - all as compared to how they were before the ropinirole.

You should also know what withdrawing from the DA entails. It involves an even further worsening of symptoms, in terms of any or all of those criteria. It has to get worse before it gets better, and the longer you leave it, if you are indeed augmenting, the worse it all gets. The withdrawal, after you stop the offending medication, lasts anywhere from days to weeks. Most people find the first 3-5 days a kind of small hell, then they begin to see a light at the end of the tunnel, they start getting a few hours of sleep a day, things start looking up, you realize you're going to make it.

Some people have done this without any medical assistance. Others - and a humane society would ensure everyone had this chance - are protected from the worst of the withdrawal by a temporary prescription for a potent opioid.

For long-term care after the withdrawal has ended, you can try the DA at a lower dose, but that frequently leads to the same issues, hell again. The other alternatives are the patch DA rotigotine (Neupro patch), which also can cause augmentation but seems to either cause it less often or mask it becuase it's long-acting; alpha-2-delta ligands which belong to the anti-convulsant class of meds; and opioids, which are far and away the most effective if you don't have side effects from them. As for addiction issues, WED patients are less likely to become addicted than pain patients who are less likely to become addicted than the general population, so addiction, although it should be on your radar screen, should not be your major concern.

I hope this information helps a bit. The other resources under my signature are not organized in the best way but some are very informative. You should probably learn as much as possible about it, and invest whatever money and energy you have left in seeing a real RLS/WED doctor.